Life

Conversation

2012-02-07T12:57:00.000-08:00

Keaton woke up this morning and asked, "where's dad?" I said,"working." "AGAIN?!"

Keaton was told to lay on couch when he woke from nap until McKenna got up. When I went to check on McKenna, Keaton ran in and said, "look, I woke up." He then started climbing on my bed and said, "where's daddy? He is going to give me a big favor" which Keaton was saying so that daddy would let him sleep in our bed.

McKenna has walked around all day with the house phone having pretend conversations with Grandma Deb.

I asked Keaton for a hug. He gave me one while he pootied and said, "There you go. A toot and a hug."

We went to Barnes and noble and of course Keaton waited to poop until we got inside and I didn't bring in the diaper bag. Asked iif he wanted to try to go on potty since he was in the aisle, and he politely responded, "no thanks. I'll justgo right here."

McKenna is still pointing to the corner of the room at least once a week asking "Who is that guy?" this afternoons she asked that and then said, "that grandpa?" made me wonder if she is seeing angels and maybe one is grandpa Visocan.

Good Day

2012-01-22T16:10:00.000-08:00

One day my children will wake and I will say, "time to eat," and they will run the table and gobble up all their breakfast. Both children will be excited to eat the entire bowl of cereal or yogurt or whatever it is for breakfast mommy serves and they will get down from the table and play and have a good morning.

The clock will strike noon or eleven or whatever time it is we eat lunch that day and the kids will sit at the table and eat their sandwiches and chips and cookies and drink their milk and get down from the table and read books and take their naps with full bellies.

At dinner time the twins will race to their high chairs and devour their entrees and veggies and save just a tiny room in their stomachs for dessert, which mommy will gladly serve them since thy cleaned their plates, both kids.

Then right before dinner I will hear my little girl ask for a snack because her three meals that day were not enough and she wants to eat more. Mommy will cut up veggies and fruit and give containers of yogurt and glasses of milk and watch as both twins have their last bit of food for the night.

Yes, this may be wishful thinking even for a mom with kids that are eaters, but hey, why can't I have a little hope?

Giving Up

2012-01-21T14:29:00.000-08:00

I know it's not an option, but I truly feel like giving up. I am tired of the tube, the hook ups, the fetches, the debating if she will eat by mouth, calorie counting, weight checks, medicines, constipation, swelling, watching and being careful anytime McKenna is held or played with. I want to stop it all. I want to scream and cry and throw my hands in the air and say, "Okay, you win. Don't eat and don't get hooked up and just starve."

I feel completely emotionally drained, helpless, hopeless and defeated. I am angry that McKenna can eat and chooses not to. I am angry that a switch doesn't just flip on and make a healing miracle occur. I am angry that she has been on the tube nearly two and a half years ans the "specialists" tell me that it all takes time and to keep waiting because eventually she will eat. I am done. I am ready to move past this part in our lives.

I'm still not angry at God. That's odd to me because he is the one icon troll and I know all he has to do is speak her healing and boom, McKenna will be off the tube and on oral feeds, but apparently He has some amazing huge plan because He is not ready to heal her yet. You haven't failed me God. I know you never will failed me God. I just need to learn to get on the same page as you.

So for today, because I feel like there is nothing left in me to give, and I know I hae no control and I have no idea what words you want me to pray, or what else to do, I simply say your name, knowing that's all it takes, you hear me. "Jesus, Jesus, Jesus, Jesus..." again and again will continue to say your name and praying that brings me the strength I need to make it through another night of tube feeds, and another day tomorrow of little to no oral eating.

Library Time

2012-01-18T19:16:00.000-08:00

Trying to do more activities with the twins to help them adjust to social environments and not always being so attached to mommy and daddy. Also I need it for me as I know I will have major separation anxiety when they go to school. They are my. Everything and I crave time with them when I go out and I'm away from them. Here are a few activities we are trying to stick with on a regular basis.

MOPS the first and third Tues every month
Library story time Wednesday mornings
McKenna feeding therapy Thursday afternoons
Play date with Emily's daughter and sometimes Jen's kids Thursday mornings
Daddy time every Saturday morning while mommy goes to Zumba workout
Play date with Darla's son, David, the third Monday every month
Tuesday open gym at Nixa gymnastics. We are trying to do this once a month

Hoping to start doing jump mania or other jump center at least once or twice a month but have yet to take the twins on my own. When summer comes we will be able to do pool time multiple days a week too.

My goal in the next few weeks is to set a daily and weekly schedule planning play dough day, color day, paint day, abc and number day, colors day, scissor time, etc. that way I can make sure they get it all in on a regular basis and will decrease their TV time that slowly seems to be increasing daily. It's easy to turn on a show while I cook, clean or plan out the day. Working on getting out crayons or books instead of the TV but so far it has been a very failed attempt.

Defeating Shy

2012-01-16T17:43:00.000-08:00

Not sure how to look at shy behavior. I grew up a very shy little girl, afraid of strangers and even friends and family at times. When going from jr high to high school I had anxiety about the thought of riding the bus even because of not knowing people on the bus or who I would sit by. I would go to the extreme of pretending to be sick so I didn't have to go to school if I knew my friends weren't going to be there because I was afraid of who I would sit by at lunch or play with during recess. When I went to college I didn't branch out and meet new people; I met a friend or two and stuck with them, clung to them because was too shy to get to know other people. I am 31 years old and still struggle with being shy. I do great in environments that are work related, or if I know ahead of time things I can talk about with people. When it comes to hanging out with women though that are close to my age I get so nervous about whether or not they will like me, how to act around them and I fear the gossip that occurs after. It's really ridiculous and as I type this I am reminded again of how silly it is. But I get so shy to the point I even get water in my eyes at times.

McKenna has been very shy these first few years of life and I recently read in a magazine to not say your child is shy, or to at least not say it in front of them. It's putting titles on them and creating characters that may not really be there. SO lately when McKenna is shy I say, "You're okay, you're not shy, you're a big girl, go play, be nice, these are your friends." So far the positive verbal cues haven't been working but one can hope that they will start to influence her in a positive way.

Tonight we had a play date with Kendall, Carissa's daughter. Keaton was so excited he ran around the house screaming, "Kendall, where are you?" They ran in circles around the house, chased each other, played hide and seek, and just had a grand time. McKenna didn't participate or play until the last five minutes, and even then it wasn't playing. She went to Kendall and asked for a cheerio and when we left she agreed to give Kendall a hug and kiss goodbye.

Tomorrow is MOPS. The twins have only gone together one time so I will be anxious to see how they do tomorrow and I'm hoping McKenna will participate and interact with the other kids.

Sweet Babies

2012-01-15T17:55:00.000-08:00

Tonight after meeting some friends for frozen yogurt Keaton said, "I'm happy."
"You are? Why are you happy?"
"Because I have teeth," said Keaton. I knew he was meaning to look and his teeth were showing, or that he was smiling to show he was happy, but it was cute how he verbally communicated that.

Potty training of course has not gone as planned. Kyle decided that it is not a good idea to potty train in front of the TV. He has requested that all potty training be done in the bathroom. We have attempted, encouraged, manipulated, threatened but so far the kids are not big on the idea of going potty in the restroom.

Today, however, when Keaton was shown underwear and told he can wear them if he pees and poohs in the potty he decided he wanted to give it a try. And if Keaton does something than McKenna wants to try it as well. Keaton went pee two times on the potty. He wet his underwear one time only. So that was good. We did have him in his diaper most of the day though. He also got to chose his treat if he went potty, so once he had a single M&M and the other time a whopper.

McKenna did a great job at trying to potty. She sat on the potty multiple times and even for ten plus minutes multiple times but she just couldn't get anything out. She wet her panties one time as well and was also in her diaper a majority of the day.

Both the kids were given the choice of underwear or diaper and were strongly encouraged that if they wear underwear they are not allowed to pooh or pee in them. We will see how tomorrow goes but I am not too hopeful. Frown.

We are also still struggling with McKenna's aggression. She is very violent and hits Keaton a lot, and very hard. I struggle to find the correct and effective way to discipline her. Seems silly to spank for hitting, because when it comes down to it that's me hitting her while telling her not to hit. When she is put in time out she smiles ear to ear, waddles off to her time out spot and if told to go sit down she smiles and says, "okay" in her super chipper tone. Obviously timeout doesn't seem efective for her. Hoping this is just a phase that she will quickly overcome.

McKenna can now count to 3 and loves singing. She likes running in circles, dancing, music time, throwing things, storytime if she gets to hold the book, babies, dolls, feeding people, and she LOVES her back and arms tickled/scratched. She loves disciplining too. She tells Keaton and her dolls, "No no" and shakes her finger in their face. She puts them in timeout and tells them to sit for two minutes and she says "I spank you, okay?" Then she spanks Keaton or her dolls.

Keaton can count to 15, can sing and identify every letter in the alphabet and numbers 0 - 10, loves singing really loud, loves watching Mickey Mouse and Jake and the Pirates. He is very into daddy and wants all of daddy's attention whenever he is around. He has the most adorable nasal laugh and loves to pretend laugh.

Things I miss already

2012-01-04T18:19:00.000-08:00

I miss the twins sleeping in the same room. It makes me sad they are in different rooms at night and even more sad thinking that Keaton is in a room by himself while McKenna gets to sleep in our room, and occasionally in our bed when she can't sleep.

I miss the twins talking to each other every morning when they wake up and wait for mommy to get them out of their cribs.

I miss hearing McKenna attempt to say Keaton but instead saying teetun.

I miss Keaton's belly crawl and his determined rolling.

I miss it when I use to say only one more Keaton and he would say okay and then I would say how many and he would say two.

I miss their attempts to kiss that were really just opening their mouths our how McKenna always use to stick out her tongue.

Things I still get though that I no doubt will eventually be missing...
Keaton rhyming everything by changing first letter to a d...grandma damna, mommy dommie
McKenna squealing when she sees a puppy and calling everything she sees that she thinks is cute a puppy or a baby, no matter what it is.
Keaton attempting to sing anything he hears, even if it's for the first time he mumbles along with the lyrics.
McKenna praying by saying "Jesus prayer, prayer something prayer Jesus amen"
The twins running in circles around family room kitchen circle pushing their loud lawn mower and shopping cart.
The twins playing hide and go seek behind curtains.
McKenna discipline Keaton or getting in is face and saying no no Keaton, ok? No no, while shaking her finger.
How fascinated Keaton becomes with one object or toy and how he can play with one item for over an hour, especially if it involves opening and closing.
Keaton's sudden need to use the words actually, either, neither, and great in sentences.
The twins sitting in high chairs facing each other and fake laughing every meal, or fake sneezing and then laughing.
The simplicity and amusement of paint with water books.
The joy they get when cutting with scissors or playing with play dough.
The power of a couple balloons and the hours of entertainment they seem to provide.
The hugs, kisses and I love yous.
McKenna saying good night to Keaton before she goes into her room and her "prayers" with him.
Bath time where I can bathe both at once.
Story time and the ability to skip pages without them knowing, or read the same book I just read and they like it just as much.

I love being a mom. How blessed I am God has allowed me to carry that title!

Potty Training

2012-01-02T17:41:00.000-08:00

After much debate as to the best method and timing to potty training, and months of asking babies if they want to sit on potty and showing them the potties we finally decided, well mommy decided we are going to start the process. We are not forcing the twins to potty but strongly encouraging them to at least sit on the potty. The other day keaton woke up with dry diaper so I put him on potty in family room with Mickey mouse on TV and then fed McKenna breakfast. Twenty minutes later went to check on him and he went pee and poop. I started screaming in excitement and scared him a bit I was so loud but I was so proud. He got a tootsie roll and has continued to poop and pee some on potty chair although he still is going a majority in his diaper.

Mommy has been putting Mickey on the potty too but until tonight she just sits on potty begging for a tootsie roll. Tonight though she went a tiny pooh and a very tiny pee. We made a big deal out of it, gave her a tootsie roll and called grandma deb so she would receive a lot of affirmation.

It's the new year and our goal, well mummy's goal is to have twins potty trained by their third birthday. That is only three months away so hopefully they will catch on quick. The end of this week or the beginning of next week mommy will try putting them in big kid undies to see if that helps. I'm a little worried about the mess but hopefully by next Monday they will be going enough to not want to walk around in wet underwear. We will see. Nothing ever goes as planned. Smiles.

Great Christmas

2011-12-26T17:44:00.000-08:00

What a wonderful Christmas. My dad came out to spend a few days with us. The twins didn't remember him but by the end of his visit you can tell they are attached. My dad played with them, went with us to eat and shop, sang and read to them. Was just wonderful. Our last night with grandpa Steve here so we decided to eat at touch...a nice restaurant. Kyle stayed home to take care of some stuff around the house but the children did great and when we were leaving I got the best compliment ever from the manager. He came over to our table and said "your babies did great. You have raised them well and that's evident in their behavior." I often am blessed with people saying I am a good mom or patient or work hard etc, but it's usually geared around everything involved with Mckenna not eating. This was because the babies were truly sweet, pleasant and well behaved. And I'm one proud mommy tonight.

Tomorrow my dad heads back to MT and I will be excited to clean and straighten the house but sad as the house will for sure seem quieter. Keaton will play with his train from Santa, McKenna will play with her microwave and mommy will patiently wait for more of her family to plan a trip to come visit again.

The Voice of a Toddler

2011-12-14T17:57:00.000-08:00

The only thing sweeter than the voice of a two year old is the things that come out of his/her mouth. The twins have been saying the funniest things lately and I find myself laughing uncontrollably out loud. I text my parents to share with them all the cute little comments, but a text is read no doubt the same way a blog entry is read, with little enthusiasm and without the squeals, laughter, high pitches etc that my little ones share when talking. So in an attempt to recap and remember just a few of the most comical sayings the past few weeks, here I go.

Keaton had a dirty diaper. Mommy laid him on the floor, opened the diaper and said, Pee Ewe. Keaton smiled really big and said, "Merry Christmas, Mom."

McKenna is really into babies and always wants to change them. Whenever I change Keaton, McKenna sits beside me and says penis over and over. Lately though she sits beside me and says, "Keaton's penis, hahaha that's funny." and she starts fake laughing.

Both the twins are into singing Jingle Bells and looking for their Elf on the Shelf - Pheneous. Keaton tells anyone that he talks to not to touch Pheneous, or he will lose his magic...just like the show and book taught him. And Keaton is always asking if it's going to snow so Santa can come.

While in the car the other day McKenna was attempting to rhyme while Keaton does. Keaton like to rhyme by changing words to start with a d, so momma domma, mickey dickey, candy dandy, etc. So Mck was attempting to rhyme and Keaton got really frustrated and yelled, "What are you saying, McKenna? I CAN'T UNDERSTAND YOU."

Keaton wanted McKenna to talk to him and she was giving the silent treatment so he asked mommy to say something to McKenna. "I love you, McKenna" was my response. "No, you don't talk like that" was Keaton's.

Keaton loves to play chase, but he calls it wrestling.
McKenna wants you to pet everything, so she pretends she is holding bugs or animals and tells you to pet them.
When McKenna wants to pray she says "Jesus" then whatever she wants to pray for. So an example and the thing she says most often is "Jesus Grandpa" when she wants to pray for Grandpa Bernie.

McKenna calls my dad Grandma Steve. She is able to say grandpa because that's what she calls Bernie, but for some reason my dad gets the female title.

In an attempt to stall and not have to go to bed Keaton will try to get you to stay in his room as long as possible. So when mommy leaves the room lately he will say, "Wait mommy, I have to tell you something. I love you." So I go back in, say I love you too, good night. Then he will say, "wait, I have to tell you something, Have a great day at work." It's so cute!

Yesterday Keaton wanted to call Grandpa Bernie who was working, so he left him a message. "Hi Grandpa, It's me, Keaton. Don't forget to close your garage door. K, bye, Have a great day at work."

Oh the things the kids say. Wish I would have saved all the texts I have been sending but hey, at least was able to remember a couple.

Weaning, Talking, Playing

2011-10-28T18:54:00.000-07:00

OH how I love being a mommy. I love waking up and singing "Good Morning to You" with and to the babies, and there stinky morning breath and the way they look at you with their half open eyes debating if they really are ready to get up. I love the fun things they say, the way the process the world and the way they try to manipulate. Kids are such a blessing.

Keaton is rambling all the time about something. He is really excited about Halloween (three days away) and keeps announcing to everyone that he doesn't have a costume yet, which is true. He walks around screaming, "We are going to go trick or treating and get lots of CANDDDDDYYYYYYY." And he loves reading the Halloween book and watching Charlie Brown's Halloween show with daddy.

Keaton is also really excited about Christmas. He goes from room to room singing Jingle Bells and talking about opening presents. He puts soap suds on his face and calls himself Santa.

He is really into music time and always asking daddy to play music on his Ipod. He loves the alphabet and wants to play with letters continually. He still insists on sleeping with his frog and sucking his thumb during naps. He has no interest in potty training. He has become quite the unhealthy eater but does enjoy fruit. He loves taking lids on and off things -Tupperware, bottles, etc. He loves Mickey Mouse Clubhouse, Jake and the Neverland Pirates, and Dora. And he gives great bear hugs when you tell him to squeeze.

Keaton squeals and screams when he gets really excited about things. He lately has been scared of the dark and starts saying, "mommy, I can't find you, where are you?" He does okay with strangers and waves at everyone at stores and screams "who is that guy?" But if a stranger is standing by us he screams "Noooo, he's too close to me." It's embarrassing but so adorable.

McKenna still is sleeping in mommy and daddy's room. She makes a clicking/sucking noise to put herself to sleep and requires her stuffed bunny to fall asleep. Actually, she always wants the bunny - in and out of bed. Mommy has been trying to teach her that she doesn't need bunny to be confidant - it's not working.

McKenna is a very shy girl, clings to mommy and daddy, and doesn't like strangers. She is aggressive, temperamental and knows what she wants. She bats her eyes, gives grins and little smirks and mommy melts and gives her whatever she wants - a habit mommy needs to break quickly.

McKenna is currently going through wean attempt number two. She has lost 1 1/5 lbs so far and can lose up to 2 1/2 lbs before she would have to go back to tube feedings. She is a careful eater, taking long periods of time to chew before swallowing and she insists on bites being completely mutilated before swallowing.

McKenna loves to dance and will put fist in air, shaking it and say dance, dance, dance. McKenna is very into animals, especially puppy dogs. She practically hyperventilates when she hears or sees a dog and starts screaming and squealing saying puppy puppy.

McKenna is afraid of the dark, thunder, lightening, storms, rain, snow, ice, vacuums, strangers. She is great at cuddling, dancing, stacking blocks. She loves Keaton's play lawnmower and will spend over 20 minutes a day pushing it from room to room, or in circles between the family room and kitchen. She likes to build houses with the blocks and throwing toys. McKenna will come up to you randomly and offer kisses and hugs. She will rub your back if you are sitting on the ground next to her. She offers you bites of her food and is good at sharing (for the most part). She has been attempting to count and sing nursery rhymes.

I love having twins. They are a lot of work, but they interact and are built in playdates. Keaton for sure plays the role of big brother. McKenna is one hundred percet the little sister. Oh how blessed I am to be a mom!

Minor Concussion

2011-07-23T18:02:00.000-07:00

While mommy was in the kitchen washing dishes she heard a thud and then Keaton screaming. He ran into the kitchen and out of no where had a huge bruise and welt on his forehead. I went into the family room to see what happened and the box of cars was next to the table and it looked like Keaton either fell of the box and hit his head or McKenna pushed him off and he hit his head.

Because of how quickly it bruised and the swelling started I freaked out and immediately called our pediatrician hot line since it was after office hours and was told to watch for signs of concussion, one which was Keaton puking 2 or more times in the next 36 hours.

Within ten minutes of the accident Keaton seemed fine. He wasn't screaming or crying, his eyes weren't over dilated, he wasn't pale or acting odd, so I figured we were in the clear. Then yesterday, 12 hours after it happened, Keaton puked all over in the car. He did only puke once but he also acted odd throughout the day and was not very active. He didn't show any signs for a major concussion, so we are just marking it as his first minor concussion and keeping an eye on him. Man oh man, it is one big bruise. Poor guy!

The Imagination of a Two Year Old

2011-07-23T17:58:00.000-07:00

I didn't realize that a child's imagination kicks in at such an early age. It is by far my favorite thing to watch with the twins. Keaton wakes up every morning and pretends his blanket has "tiny winy dinosaurs" all over. He pretends to smash them, play with them, touch or pet them. He also says there are porcupines and hippos eating watermelons, or he will act like he is eating the animals. It's so funny to watch his expressions and hear his voice inflictions.

Today McKenna started pretending as well. She got on the ground and jumped like a frog and then started to act like there were little frogs on the ground that she was smashing.

I am not sure if McKenna quite gets what she is doing or if she is just copying Keaton, as that seems to be her favorite activity, but either way it is adorable and fun to watch.

Swim Time

2011-07-02T18:01:00.000-07:00

What a great afternoon. My friend Shannon joined me and the twins for a day at the neighborhood pool, and unlike the time daddy took Keaton, both babies loved the water.

We were only there for two hours and of course right when it is time to get out so we can feed McKenna is the same time the twins started really enjoying the pool. Keaton was really into climbing in and out of the kiddie pool. He would only go to the first step (ankle deep) but Shannon taught him to kick his feet in the water which convinced him it was okay to sit on the first step while his legs were completely in water. He would get in, sit down, stand up, get out and then repeat it all over again - over and over.

Fifteen minutes before we got out of the water I held him in the water to his chest and he kept crying and saying he wanted to go to the stairs, so I said, "Okay Keaton, put your feet down and you can walk to the stairs and play on them." He agreed. He put his feet down, stood for a second and then saw a leaf floating in the water and decided to chase it instead, which lead to him walking in the water and he LOVED it. He was laughing and giggling and talking and chasing throwing the leaf to go get it. Adorable. He didn't want to get out.

McKenna did well in the water last time but preferred the big pool. Today was the same. She really didn't want the kiddie pool, but that's where Keaton was and she likes to be by his side if possible. For the most part she stood on the first step or right outside the kiddie pool. And then like Keaton the last fifteen minutes she actually started playing in the pool, going to the big pool and walking back and forth on the steps and at the very last minute agreed to stand in the kiddie pool which goes up to her chest. She did great.

We are excited to take the kids to the pool again next time. Although next time I will be bringing their swimming wings to make mommy feel a little more comfortable.

Fingers and Toes

2011-06-28T18:06:00.001-07:00

Tomorrow we head to KC for the feeding clinic evaluation. I am pretty nervous about what to expect and what the outcome will be. What if they accept us but McKenna doesn't do well with the treatment and we fail so are stuck on the feeding tube forever? If McKenna doesn't get accepted where do we go from here? How soon after evaluation will we know if this is an option for us? How long will she be on the experimental drugs...yes a ton of questions!

SO, to help us keep our mind off things while daddy is at urgent care with sick little Keaton mommy painted McKenna's fingernails purple. She looks so cute and was such a big girl sitting while I painted. Didn't fuss or yank her hand away. She wanted her toes done too but we ran out of time.

I have two outfits picked out for tomorrow - both brand new. One is green and white and pink, other is orangish pink and brown. And we have her glitter pink shoes set out too. So a new outfit, painted fingers and pigtails...if thatttt doesn't get her into the feeding study I don't know what will.

I just keep thinking tomorrow could be the day that changes our future. Maybe tomorrow they will have answers and options for us. Of course this is how I felt pre-wean and how I felt pre Chicago trip. One day at a time. Today she is still on a feeding tube and as I type this she is hooked up to a machine, laying in her crib in mommy's room and talking to herself. I love her so much and just want her to have the world. Is that asking too much?

Keaton's Fever

2011-06-28T18:03:00.001-07:00

Poor Keaton, woke up with a small fever. Didn't take his temp because within 10 or 15 minutes seemed to go away. We went to a friend's house because mommy thought Keaton probably didn't realllllly have a fever earlier, was just from sleeping with blankets.

When he woke from his 30 minute nap, yes that was a SHORT nap today, he had fever of 101.5. He felt so hot, was a tiny fussy but didn't seem to be sick. It's 8 pm and Keaton now has a fever of 103.6...the highest temp he has ever had.

Mommy has always been told don't call until 103, don't take in until 105. SO our urgent care closes at 8, so daddy rushed him there, got him in 5 minutes before they close and now we are just waiting to see what is wrong. I am guessing ear ache, we will see. My poor baby boy is so sick he didn't even cry or fuss when daddy turned off "Blues Clues" - his favorite show.

First Baths

2011-06-23T19:56:00.000-07:00

Well after over 26 months daddy finally gave the babies a bath. Mommy pulled her back out a couple days ago when picking a piece of paper up from the ground and wham that's all it took. Finally able to walk today, but still too painful to bend over, so daddy had to step in and wash the kids. He was so stressed out about it - pretty funny to watch. Mommy was able to get on ground and wash McKenna so daddy could see how to do it, but couldn't get Keaton to come to my side of the bath. The question is now that daddy knows how to wash his kids, will he ever do it again?

So Cute

2011-06-22T19:07:00.000-07:00

I can't help but wonder if other parents think their kids are as cute as I think mine are. I truly find myself laughing all day long, of course along with yelling and disciplining, but still...

This week Keaton woke up and was looking out the window and announced there weren't any dinosaurs outside. He seemed so surprised that he wasn't seeing any. And then when we were in the kitchen watching McKenna being tube fed he laid on the floor and saw a spot of water and started saying, "I see a snail." It's amazing to me his imagination. It's so fun to watch it take place. And then again tonight while looking out the window he told daddy that he saw a Brontosaurus. Spelling on that dinosaur I have no idea!

McKenna has really started saying "I love you," But it comes out "I wuv ewe". This week she learned to yell it REALLY loud and add mommy at the end. So she walks around saying "I wuv ewe mommy." The first part yelled, and mommy is spoken softly. Too cute.

Both kids are sick right now. They have runny noses and congestion which makes them nasal sounding when talking which just adds to the cuteness. Of course the whining and fussing that goes with the colds...that part I would love to trade in.

Special Moms

2011-06-18T18:33:00.000-07:00

Today I sat in a room full of moms with children that have special needs. Children with hearing or sight impairment, physical disabilities, cognitive delays, speech and feeding issues. I looked at each of the women and studied their faces that had smiles stretched ear to ear and watched as they laughed and talked with one another. They all seemed happy and hopeful. I kept thinking of the hours upon hours that they have invested in their children in hopes of seeing their child reach milestones or make improvement and literally caught myself on numerous occasions fighting the tears. They all seemed so strong and their burdens seemed so much greater than mine, and yet they were still pressing on and sharing with one another ideas and possibilities.

A feeding/speech therapist was there that I have heard wonders of from a friend and we were able to ask questions and the entire time I was on the edge of my seating praying and begging God to have this man share SOMETHING that would give me direction on how to help little Mickey eat. But time ran out, I had to get home to hook McKenna up to the tube and I came home without answers. The one positive, in addition to meeting amazing and strong women, is that the therapist told me to call next week and ask all my questions and he won't charge me for the call.

So next week I will call him and ask my million questions and see if he thinks there is something he can do to help McKenna before we financially invest in yet another therapist or doctor that claims he can help until he meets her and sees how complex her situation is and passes her to another person.

I am feeling very down tonight and helpless. Our pediatrician isn't on our side, our GI just wants to keep giving McKenna more and more meds, our therapists don't know what to do so they just hang out and talk or read her books and God, the one true Healer is apparently saying it's not her time to be healed yet.

So tomorrow we will be woken by retching most likely, and we will tube feed McKenna every three hours, and we will offer her food that she will ignore and refuse to eat or taste and we will hold the rag while she retches and pukes and we will play with her hair or rub her back to try to calm her, and we will debate what the next step is...we really just don't know where else to go from here. And yes...tonight I am having a pitty party.

The Gift of Speech

2011-06-12T17:59:00.000-07:00

McKenna's vocabulary has doubled in the past month. Beginning of May she was saying a few over 50 words. Today she is saying over 110 words and even putting two or three words together. She is very big on asking, "What's that?" or "Where daddy go?" While she probably understands most of what she is saying, sometimes I think she just repeats what she hears Keaton say and then she receives so much praise for talking she repeats over and over.

I love to hear McKenna say, "Sawee" for sorry, "tank ewe" for thank you, "peas" for please" "teeton" for Keaton, "damn awe" for grandma. She has a super cute little voice and she is so proud of herself when she talks. The difficult part is that sometimes talking causes her to retch. Not sure if it tickles her throat the wrong way or what, but it's so sad.

McKenna is starting to get more into books and today started trying to say a few of the words she had just heard read. We have been working a little with flashcards, and also trying to identify more stuff when we are being quiet and encouraging McKenna to repeat. She has to be in the right mood to agree to repeat.

Everyone says girls talk your ears off, so I am not in a rush to get her to talk, just want her to be able to communicate when she needs to. smiles.

The Cutest Sayings

2011-06-12T17:51:00.000-07:00

I don't want to forget the things that Keaton says. They are so cute and half of it is his delivery. He has the sweetest little voice and the way he raises and lowers his tones is so cute. So here are a few of the wonderful things he has said, though they aren't nearly as cute as when he actually does say them...

We were all in the car and out of nowhere Keaton said, "The car tooted."
Sitting in livingroom and Keaton was bored so he walked to mommy and said, "How about we go on a drive?" Yes, he said all those words at only 26 months old. Too funny.

On way home from church, mommy "Keaton, how much fun did you have? Did you have this much" (said in a tiny low voice and showing with fingers a small amount of fun. Keaton - "Yes, this much fun." Mommy - "Or did you have THIS much?" (voice loud and arms stretched). Keaton, "Yes, this much fun." Mommy - "Really? THISSSS MUCH?" Keaton, "well, no not THAT much."

Mommy, "Keaton, what do you want to eat? Chili, pasta, sandwiches..." Keaton, "I have an idea. How about cupcakes?"

When we go to Grandma Susie's house Keaton literally squeals out loud and starts to hyperventilate. He gets that excited. And every house we drive by or walk by, regardless if we are going there, he says "That's not Grandma's house, that's not grandma's, that ones not...how about we go to Grandma's? that's not grandmas....

Keaton threatens McKenna quite often that he will spank her bottom if she doesn't do what he wants. He is great at sharing until recently when he has learned the power of ownership. Every toy he sees he wants.

Keaton loves to hear books over and over and will recite them to you...he can learn most of a book after just a few times hearing it. If we go get in the car he asks to go to grandma's house or Andy's (frozen custard). If we go to Target he requests an Icee. He lvoes to walk around and tells McKenna to hold his hand. He is the sweetest most loving little boy. So blessed am I!

Keaton's First Day at Church

2011-05-22T18:12:00.000-07:00

While eating breakfast this morning I asked Keaton if he wanted to go to church with me. Normally mommy goes, daddy stays home with the kids just because McKenna's puking and retching and we don't want to risk someone ripping out the feeding button. So when I asked Keaton if he wanted to go he threw down his bowl of dry cereal and started shouting, "Go to church, go to church."

Keaton and mommy walked into church and he just kept asking, "What is this, mommy?" Was sad that he didn't even know what church was. We checked him in, got a nametag on him and mommy took him back to the Lamb Room, then the water works started. I was so proud of him. Luckily for mommy Amy Townsend was walking her son, Jackson, back to the Lamb room at the same time, and we saw Kristin's son there too, so mommy felt a little better knowing that Keaton had met two of the boys.

So we got to the door and my eyes were watering and we saw the puzzles on the table and I asked Keaton if he wanted to do a puzzle. He was so excited I almost dropped him as he squirmed out of my arms and into the teachers.

I couldn't really concentrate on the message during church because I was so nervous as to how Keaton was doing. But they said he did great. He got to color, go to the jungle gym, had a snack and made new friends. He was excited to see mommy when I picked him up, which made me feel good.

I am excited to take him to church next week, and excited for the day when McKenna gets to go too.

GJ TUbe

2011-05-16T10:05:00.000-07:00

Sweet Little McKenna, how I wish we could snap our fingers and the Lord would heal her. I wish He would speak the word of healing and I would love to see all the people smile in amazement at the mighty work of God. Well, we know His works are mighty, so maybe that is just me trying to manipulate Him into healing. Did it work? Truly though, speak it God and it is done...any minute now...we are anxiously awaiting.

Daddy and McKenna are down in radiology having the G Tube switched to a GJ tube. Mommy was not brave enough to go. Watching your child scream and cry, seeing their eyes fill with fear, nope...can't do it. Tried to do it with her this week when they placed and IV. I had to leave room. Thought I was going to puke, the site of that with the blood? no thanks!

I pray that McKenna is not forever scarred by the medical history that she has had this far. I pray that this is just a small stepping stone in the right direction to getting Mickey on board for eating orally and off this feeding tube. I pray that McKenna uses these stories, these blogs, the tears shed for her, the prayers lifted on her behalf, the challenges thrown her way...I pray she uses it all for the Glory of God and one day we will look back and hardly remember the retching, puking, late nights, early mornings, fights, lack of sleep, nightmares, battles with food and drinks, etc.

Anxiously waiting for Daddy and Mickey to come back upstairs. They say this button is a good size bigger and sticks out a lot further from the stomach. Nervous about that. Nervous she will get it caught or snagged on something. Nervous she won't tolerate the J feeds or that she will tolerate them so well that they make us do 24 hour feeds. Worried about how soon we can get to only night feeds, no long stretched out day feeds. Worried, fearful, scared. Just ready for McKenna to be healed, well and prospering.

Speak

2011-05-06T11:57:00.001-07:00

Speak Lord, that's all you have to do. Speak it, and it will be done. That's my prayer today - speak that McKenna is healed, and she will be. I beg of you. Don't know what else to do, God. Please, please, please...

Potential Weaning

2011-02-02T18:05:00.000-08:00

So my dad told me last week about a distant relative's son that retched and puked so much the enamel on his teeth was warn away, and he had a feeding button. I was shocked and obviously wanted to know more because it seems like whenever I do research to try to find solutions for McKenna nobody has the same problem we do, or nobody has solutions. Not only that but I can't find a support group which is totally what I could use right now, a shoulder to cry on that is going through what we are going through.

I was further in awe when my dad told me about Jack, the little boy, being weaned off the feeding tube. He no longer retches and is eating 100% orally...no feeding tube. Can't even imagine that. So I emailed Krista asking if I can call and ask her a million questions and she was so helpful to send me a blog and two web sites along with details on the weaning process at home. I am dying and eager to start this weaning process, but planning to wait until we go to Chicago and do the swallow study and make sure that they are okay with us moving forward with a drastic approach like this.

Basically you take a week to decrease tube feeds and by day 6 you are off tube feeds completely. Babies lose average of 6% weight which means McKenna would lose about 1 1/2 lbs and they will allow baby to lose up to 10% but anything over that they make you get back on the feeding tube.

So yesterday I started doing more research, looking at blogs, watching youtube videos etc and it is so sad to see kids that can't eat that want to. They looked so confused and frustrated in the video and it made me question if I really will have the courage to go forward with this process. I want to try it but making McKenna go without food breaks my heart.

So, I am in prayer. We would like to wait to do it until the beginning of March. Who are we kidding, would be easiest to do it when daddy is out of town because he stresses so much about this stuff, but he won't be gone for several months so I am just praying that God give me direction and if this is something we are suppose to do that Kyle would be on board and we would start this approach by beginning of March.

In the mean time, I am giving McKenna cheerios throughout the day. She spits them out, chews them up and spits them out or just throws them, but she needs to be okay with playing with food, or more so IIII need to be okay with her playing. Also I have not really orally fed her for two days. I always give her purees but she doesn't like babyfood and it is so routine, so I am trying more of the weaning approach. Giving her solids like string cheese, crackers, cereal, pizza, etc and letting her play with it and put it in her mouth and chew it and spit it, etc. Hope doing this doesn't set her backward, but honestly we need to try something different at this point, so I am doing this, and giving her a sippy cup all day long to carry around with her. She took multiple drinks of water from it today and even took drinks from a play teacup. I was in tears. So grateful.

I can't even begin to imagine what it will be like when McKenna starts eating again. So many things we take for grantit, but I will be so grateful for my daughter not having to retch all day long, not waking up to retching, not sitting outside her bedroom during nap time until she falls asleep to make sure she doesn't retch, getting to go to church and put the kids in nursery, not having to send her to a special education classroom because of the retching and feeding tube, both kids getting to go to pre-school, mommy going out with friends before 7 pm because daddy would be able to feed both kids, going on playdates or running errands without scheduling it around a 2 1/2 hour return home to tube and oral feed at same time, not cleaning up puke from carseat every week, not changing 4 plus outfits on McKenna everyday from puke, not having to run laundry loads daily because of spit cloths smelling up the house every night, not having to stack up on carpet cleaner because of the puke...the list could go on and on...yes will be more convenient for me, but more importantly will be so good for McKenna. NO more painful retching, no more painful tube changes or cleanings or possible tearing it out, or risk of infections or fear of her getting sick because she is more at risk and suffers more from gagging/puking, no more sore throat and erroded esophagus from retching...please Lord, let this be a possible answer for us.

Braces

2011-01-26T17:44:00.000-08:00

Breathe...just breathe. Eventually if I say it enough times, will it allow me to gasp a big enough breath to get to the next one? Starting to feel like we can't catch a break. Well, have felt that way for a while, but then my daughter started walking. What a joy, a blessing, a miracle and answer to prayer...but of course it is followed by band news.

Three weeks ago McKenna started walking. A week after she started, Jean, our PT with Myer Center mentioned McKenna may needed braces to help her legs/feet straighten out. She thought we should just do exercises (tip toes and turning her foot on its side) for six months to see if we could avoid them. Today our PT with First Steps, Tara, confirmed that McKenna needs the braces and she doesn't think we should wait.

My heart breaks for McKenna. While these aren't long thick metal braces, or ones that go clear up to her knees, they are still braces - one more thing that she has to go through, one more thing she has to endure and has to have "fixed".

Grateful that McKenna's feet will be fixed through these braces. Grateful there is an answer and we won't be left wondering what to do or what's wrong. Grateful that she will only have to wear them for a few years. But if I am being honest my heart is aching and the thought of her having these put on everyday and the thought of one more thing she has to work on and one more delay she will have to conquer. Life isn't easy, I get that. But come on...can't ANYTHING be easy for her?

Discouraged, sad, frustrated, angry, feeling helpless and hurting for my little one. Ready God!!! We are ready...please, cut her a break! Let our trip to IL in a few weeks give answers to the retching. Make it so she can start eating orally or drinking her Pediasure orally at least. Let the braces be ordered and let them work quickly so she won't even require a size larger in six months. Help her to start speaking. And teach us what it is that you are trying to show us through all this, because I truly can't understand why else she is going through this other than to teach us something.

Theeeee Smartest Little Boy

2011-01-11T10:36:00.000-08:00

I truly think I have the smarted little boy in the world. He is so much fun to watch explore and learn. He loves his books and is always eager to go pick out a new one from the office to have daddy read to him. He points and the pictures and tells you what things are or the colors or asks, "what's that" only to follow it up with telling you what something is.

This week I have been wearing my Evangel University sweatshirt and Keaton points at each letter and tells me what they are. We have a Dr Seuss ABC book and he goes through and can identify almost every letter. He has a numbers puzzle and can tell you what numbers he is putting in the puzzle. He loves to color and stack and count and sing. He can tell you most of Jack and Jill, Twinkle Twinkle, Row your boat and several others.

And my favorite new thing he does is points and babies and calls them baby Jesus. He got this from the manger. Grandma would point and say baby Jesus so he now relates all babies as being baby jesus. So cute. Can't wait to see what the Lord does with this knowledge he so quickly is gainign and how he will use it to further HIS Kingdom.

She's Walking

2011-01-11T10:28:00.001-08:00

Finally mommy can take a breath. McKenna is walking. Over a month ago McKenna had taken steps for our PT, Tara, and was walking room to room without holding on to anything. I was the proudest mommy ever but within an hour of the therapist leaving McKenna stopped walking and since then has required the walker to move around or insists on crawling. It has been so discouraging and nerve racking watching and hoping that she will walk.

Then last week I decided I needed to really start investing more time in getting her to walk. We were going to be seeing the PT at Myer Center, Gene, in two days and McKenna had not made progress since her last visit several weeks prior. I held McKenna by the thighs with her throwing her body, screaming and reaching out to grab onto anythign she could touch but within five or ten minutes she did it...she took a step without holding on to anything, and then another, and then another...and today, almost a week later McKenna is walking. Yes she still likes her walker and holding to the table, but you give a loud cheer and she lets go and claps for herself and walks. I am so grateful for this huge milestone. She is 21 months old and finally walking without holding on to anything. Thank you God.

McKenna is also starting to attempt talking more. She now says Up, Help, and bubble. She is attempting to mimick words you say and if you refuse to answer or acknowledge her request until she says a word she will at least try to say it. This week she has started saying Uh Oh when she drops something, and she says apple and we are working on getting her to say this or that when she is pointing rather than the grunting and loud screaming she does.

McKenna completely stopped taking bites and drinks for multiple days. She would fuss and scream if you even attempted to feed her. This was due to the new direction and changes made by the Chicago team. So we have gone back a few steps and are now feeding her how we were originally because the new way obviously wasn't working.

We go to Chicago in a few weeks and I am just hoping and praying that God will give McKenna relief from the retching and that will allow her to eat/drink orally. Please God, please, please, please.

McKenna's First Steps

2010-12-07T19:07:00.001-08:00

Woo hoo and Praise the Lord...McKenna took her first steps today. A couple weeks ago she took 8 steps with the physical therapist, Tara, at our house while she held the ball popper stick thing, but this was all on her own, not holding a thing.

So this afternoon she refused to sleep. Last night she only got 4 hours of sleep. Mommy was/is exhausted but since M wouldn't sleep I took her into my room and decided to just read outloud to her and allow her to play on the bed or doze off. She chose to play of course and her game was "watch me stand without holding on to anything". This is somethign she has only done two times, but times at the Myer Center for Ms Jean but never for mommy and never at home.

So McKenna pushed herself to stand and then laughed as she stood there. I of course cheered, screamed, giggled and clapped and then she went back down. Every time she stood she was praised. As soon as she sat back down I would stop. She loved the game and I loved watching her stand without holding on to anything. What a blessing to see.

Then tonight daddy and I were discussing McKenna's health and whether or not to take her to Chicago to get further assistance and bam...she let go of the fridge and stood there laughing to get us to look. We praised her and then she grabbed the fridge. Same as before, we gave praise until she held something. Then we were silent. She did this for a good 5 minutes. Grateful for the progress but not content allowing it to stop there I encouraged her to take a step and long story short she did. She took one step forward two different times, without holding on to anyyyyything. Not even a toy in her hand.

Thank you God. I reallyyyyyy needed that today! Cheers and here is to hoping she is that brave again tomorrow.

Dancing Queen

2010-11-18T04:31:00.000-08:00

The cutest thing out there has to be sweet little McKenna dancing. It cracks me up and must be video recorded ASAP! She takes her hand and opens it up really big and then pushes her hand in front of her then pulls it back and does that over and over. Yes, I realize that description did not make any sense. She also takes her right shoulder, tilts her head toward it and raises shoulder up and down while her hand is open palm facing the ground. SO CUTE!!!

Yesterday while watching Glee a song came on and I swear McKenna was humming to the tune. I saved it on the DVR just to see if she will do it again because if nothing else it is a good dance number for her.

McKenna still isn't pronouncing any words but is finally starting to babble and Mommy is just tickled silly. Mickey has the cutest voice and sometimes when she is trying to say words or babble she gets air in her cheeks and and starts bobbing her head while talking and it is so cute. Yet another description that doesn't explain what she is doing at all, but trust me, it's so cute!

Cuddling is one of McKenna's favorite things to do and she is so great at it. She nestles up against you or will put her head on your lap and just cuddle for hours. And if she has her bunny with her? You are never getting her off your lap. I love having a girl!

Ranting Words

2010-11-18T04:23:00.000-08:00

Keaton is so much fun to watch grow and learn. He loves pointing at things and saying "What is that" or "what is this". He also points and identifies everything. Yesterday he was watching TV (shame shame Mommy, but it was a cold dreary day so a total TV day!) and as things appeared on the TV he would just point and say what they were (frog, milk, bug, car, etc).

Counting is by far one of Keaton's great talents and passions. Hahaha. Can babies have passions like that? Well he loves to count. He will put pillows on the floor and walk over them and count as he takes each step, or when he is going up and down stairs, or when he is stacking blocks, etc. You get the point...he loves to count count count. He can actually count all the way to 13 now, although he needs to work on pronouncing 11 and 12. Smiles.

Keaton is really big into jumping and climbing now too. I started an awful habit of allowing him on my bed and encouraging him to jump. Of course 19 months is a little young to jump lifting your feet off the ground but he bends his knees and says jump and goes up and down while saying jump. And he loves rough housing...especially if it is hitting him with pillows, or throwing him on the couch or anything really rough and borderline dangerous. It's kind of funny. Hope this isn't a sign he is going to be a bully.

Keaton is seriously the sweetest little boy. I don't know how there could be anyone sweeter. He says Good Morning when you get him out of his crib in the morning. He points to McKenna in his and says Mickey Sleeping when she is laying down. Keaton pats McKenna's back and puts his head in her face to check on her when she is retching. She loves giving him kisses which he isn't to fond of, but he usually goes along with it. He wipes his mouth and says yuck after you kiss him (one of his many "tricks"). He dances, and his favorite song right now is Drummer Boy. He even attempts to sing Ba Rumpa bum bum. So cute. I love having a boy!!!

First Steps

2010-11-18T04:17:00.001-08:00

19 weeks old and McKenna took her first steps yesterday. Praise the Lord. Mommy of course was in tears at this huge milestone and smiling ear to ear. Wouldn't be surprised if my children suffer from long term hearing loss due to my shreaking screams of joy.

The First Steps Physical Therapist, who I think is the hardest working FS therapist out of the group, came in and we put her right to work, hardly even allowing her to sit down before flooding her with information on McKenna's progress during the last month. Long story short I went to kitchen to get Keaton milk and the therapist calmly but loudly said, "Mom you want to come in here! Really...You are going to miss this, get in here."

I ran in to see McKenna holding a ball popper sticker handle and pushing it, no support from the therapist, Tara, and no support through the ball popper. McKenna was smiling and when I started screaming cheers she started going faster and laughing and walking. I counted 8 steps, plus she took a few before I got in there. SO PROUD!

Of course all night I tried to get her to do it again and she refused. She made it into a game, falling down when trying to stand her up and laughing really hard. She can stand on her own, she can walk, she can move...she is just too afraid for some reason. She does great walking if she holds mommy's hand with her right hand and really doesn't even use the hand for anything more than comfort. So this is the next thing we are doingm building her confidance so she will actually do the walking and standing. Either way, she did it once so we know she CAN DO IT!

Mickey and Therapy

2010-08-18T19:00:00.001-07:00

In NICU they continually reminded us with preemies they take one step forward and two steps back. It was a depressing thought, but we found it to be true and unfortunately it seems to continue to be the saying for McKenna.

We have been so blessed and grateful to post positive things and the wonderful improvements we have been seeing, but in the back of our minds we remains the long journey she still has, mainly with the feeding.

This week we were finally able to return to Myer Center for feeding therapy. McKenna has not had it for three weeks (therapist gone two weeks and then we were sick last week). To make a long story short the therapist was in agreement with Kyle and me that McKenna has not made improvement on the feeding side of things for a couple months. Well, she has made MINIMAL improvement is how she worded it. If McKenna was not eating solely due to an oral aversion the therapist things McKenna would be making more progress than she is currently making.

So what does that mean? Honestly we aren't quite sure. We are going to decrease feeding therapy at the Myer Center to every other week since weekly isn't benefiting her. The therapist is recommending McKenna go to a feeding clinic (closest one is in St Louis) which we are waiting to see if this will be covered by insurance and how long we would be there (looks like 4-6 weeks) and what all it entails. We still have not found a cure for the retching which could be a big cause to her not eating, and KC has failed as far as follow-up and direction.

We are a bit discouraged, overwhelmed and down that our baby girl is still having to face this battle. August last year she was still eating out of a bottle, was pushing herself up when on her belly and was happy as a clam. Fast forward to August 2010 and she is just now crawling (Though we are so grateful and proud of her for that) doesn't talk or babble and still appears to be in a ton of pain with the retching spells. God? I know you hear us...please heal our baby!!!

Oh Poop

2010-08-18T18:51:00.000-07:00

My kids loveeee bath time. Keaton always goes to the bathroom door and says, "Baf, baf" just begging and pleading to get in the water. It's adorable, but bathing two babies is a lot of work and we don't leave the house much so I still only give them baths everyother day.

Well tonight Daddy is out of town, we had spent time out of the house and at a restaurant which is obviously full of germs, Keaton had food in his hair and we were bored. So when Keaton asked for a "baf" I agreed. Little did I know that he would give gratitude for the bath by pooping on the floor once he got out. Not only was it on the floor, but on the carpet. I just need to be grateful it didn't get smeared INTO the carpet, right?

Then of course I got the babies changed, all ready for bed and put them in familyroom to settle down and McKenna pooped her pants and when cleaning her I managed to get it all up her leg. I think they are dirtier now than they were before their baths.

And yes, I DID just write an entire entry about stools. You're welcome readers.

Not Any Stronger

2010-08-12T13:05:00.000-07:00

Feel like as we face battles we grow and are strengthened but honestly I am at the breaking point and can't seem to pull myself back up. I want to cry everytime I see my daughter retch. The painful look on her face, watching her tighten her entire body and gasp for breaths between each gag, the feeling of her stomach tightening as the fights for each episode to end. And the entire time we can do nothing but sit and watch, oserve, talk her through it, act like it's not happening and pray that she will never have another.

The feeding is exhausting. She gets stuck in one place and can't push through and I don't know how to help her. Therapy does the same thing and has been doing the same thing basically since October which discourages me from wanting to take her anymore. But at the same time if I were to quit taking her I feel like that is me giving up. I want McKenna to know when she is older that I did everything possible to help her not have pain or discomfort and to help her have a normal life.

My 24 hours of being down as stretched out to be over a week. I am ready for you to heal her now, God. Please.

Down and Frustrated

2010-08-05T18:16:00.000-07:00

When my mom is down or discouraged she always says, "I am going to allow myself 24 hours to feel this way, then I am done. I am not going to stay here long." That's the attitude I need to apply to my life right now. Feeling really discouraged and down about McKenna's lack of progress with the feedings. She started opening her mouth, which is a huge step forward as everyone reminds me, but that was several months ago. She still spits out any food that goes in her mouth and swallows less food with an open mouth then when her mouth was closed. I feel frustrated and tired of trying to feed her everyday and I know tomorrow I will once again sit her down three different times, get out several different foods for her to taste and she will fight me on opening her mouth, or will open her mouth and spit out all the food. Doing my best to be thankful for the progress she has made. Trying to focus on the thought that when she moves forward in one area (crawling and sitting up) she will go back in another (eating) but that doesn't really encourage me. And she really hasn't gone backward, she just is maintaining where she has been the past few months.

So, something positive, today she tasted chocolate milk and didn't gag or retch on it. She took over 30 sips of it and although they were very small sips, they were still sips and I am grateful for that.

McKenna doesn't open her mouth wide, but she is at least cracking it open and although that has been happening several months now it is still a step in the right direction and something that she needs to do inorder to get to the next step - swallowing food.

McKenna isn't swallowing the food, but she is trying new flavors - chicken, green beans, broccoli...which is a great step too because she shouldn't be stuck on apple/blueberry mixture forever.

So there are positives, and she is truly doing her best and I know that. I just need to allow myself to be down for 24 hours and cry and vent and then move forward knowing tomorrow could just be the day the Lord choses to heal her.

Our Blessings

2010-07-24T04:58:00.000-07:00

Lately God has really reminded me of the amazing blessing we received when our fertility treatments worked. Several friends (three now) have gone through the process once, twice or sometimes even three times and have come back with negative results and it breaks my heart. I can relate to the desire to be a mom, to the desire to carry a baby and feel it kick and move and watch it grow as my belly expands. I can relate to wanting the stretch marks, back aches, vommitting throughout the night, labor pains, weird cravings and everything else that goes with pregnancy. I can relate to the desire to be a mom and hearing the words that you most likely won't be able to have kids and the pain and stress and frustrating and heartache that comes with infertility. But, I can't relate to paying thousands of dollars and coming back with negative test results, or the pain of knowing that fertiility treatments won't work. All I can do is cry for these friends and pray for their miracle to come, whether through their own conception, other fertility treatments or adoption. My heart goes out to these couples and at the same time reminds me of what miracles we have been blessed with!

Just Like That

2010-07-19T08:05:00.000-07:00

Can't help but laugh when I think about the blessing God gave us yesterday. Was completely unexpected and left me laughing and crying and shouting for you. McKenna learned last week to sit up from the laying position. This is a huge step forward as most kids are doing this around six to eight months. Then last week at therapy, Jean said we were going to start working on rolling to get to things, and crawling although she anticipated it would be a while before McKenna was able to crawl.

So yesterday afternoon Kyle went to take a nap and I was sitting on the floor playing with the kids. Keaton started throwing our DVDs everywhere and one was out of McKenna's reach. She leaned forward to get it. Couldn't reach it still, so she leaned forward more and then started pulling her butt forward, or scooting it, while pulling her body with her arms.

Immediately I started screaming, "She's crawling, Kyle, She's crawling." Kyle ran out and just as he reached the living room McKenna got up on her knees, with her butt still really close to the ground and started moving each knee one at a time forward - probably only an inch at a time, but it was crawling. Yes, yesterday my daughter crawled for the first time. And she did it a couple other times later throughout the night. One of the times I even managed to get on video to send to grandparents.

So after fifteen months my daughter is finally attempting to crawl. Can't believe that just last week she learned to sit, this week is learning to crawl and then next wouldn't be surprised if she started walking. Things are starting to click for her and come together finally. She is watching Keaton continually move around and it seems like she finally wants to move around herself.

Then, in addition to an evening of crawling, McKenna took bites/tastes of chicken with chicken gravy baby food. This one I am completely shocked at because she really doesn't eat anything but the blueberries/apple mixture. But the speech therapist said we need to start introducing other tastes and get her eating other things. So this week we have tried sweet potatoes (She will do occasional bites of them if they are not warm but she really doesn't like them), chocolate yogurt, blueberry yogurt and pears. And she licks mommy and daddy's ice creams. Will try the chicken mix again today and then hopefully tomorrow can introduce a green vegetable.

I think it's important to note when I say she is eating these other foods she is not really "Eating" them. She will open her mouth, allow the food in and then spit most of it out. BUT at least she is opening her mouth and I just keep think that eventually we will find a food that she likes so much she doesn't spit it out.

Still praying for her to start eating. We want that Mic-Key button gone! Unlikely, but praying that we can have a miracle and it will be gone by December when we go home to MT for the holidays, but hey, miracles DO happen. Also praying the retching stops. She is averaging 4-5 a day. Her numbers have gone back up due to the increase in volume during each feed, and each feed takes an hour, but she only has one night feed, which was our goal, but now we just have to pray for her to learn to tolerate the food enough to allow her to not retch.

Nice

2010-07-16T04:34:00.000-07:00

OH my goodness, how adorable is my son? Not sure if I included the word "Nice" in the list of words that he says, however it seems to be one of his favorites.

McKenna's favorite thing to do is "pet" Keaton. She rubs his head, taps his shoulders, touches his face. She is very gentle with him (other than the times she does that to lead into pulling back on his collar to choke him - no joke). So when she is doing these sweet gestures I say, "Yes, nice McKenna. McKenna be nice," to help reminder her that choking is not the necessary next step.

Well Keaton has picked up on it. So he now goes around gently slapping McKenna in the face or on the arm and saying, "nice, nice." It's hard not to laugh and to decide whether desciplining is in order. Can't tell if he is trying to be nice or is being mean and thinking he can cover it up with the word.

So yesterday, I decided to face my fears head on while an itsy bitsy spider dangled over Keaton's highchair that he was sitting on. Yes, i killed the spider...with my barehand. I slapped it against the wall. If I didn't do it right then I feared it getting away or landing on Keaton. And right as I did it Keaton yelled out "Nice!" whether he was meaning nice as in nice job or nice as in be nice mommy, it was hilarious and made me forget that I had actually just killed a nasty eight legged insect.

Then last night Keaton kept getting into the cabinet under the kitchen sink and I couldn't find the childproof tool he had hidden so I told him if he opened it one more time (he takes out the carpet cleaners and wants to play with the bottles) I was going to slap his hand. Of course, being a baby Keaton went right back to the cabinet and opened it so I followed through with my threat and hit his hand. "NICE...NICE...NICE" Keaton started to say so stearnly. Yes, this time I knew he was meaing for me to BE nice! He is so cute.

Few other words he is obssesed with are up, off and mess. He is continually wanting to be picked up (which I absolutely love), wanting to shut the lights off, close the door "off" (yes off instead of shut), or take the rings off the stacker". And Mess - he points at his tray during meals and says mess over and over, and does the same thing when looking at McKenna's tray, or when he comes in livingroom and sees his toys all over. Guess mommy needs to cut back on saying that term. Don't want him becoming OCD or thinking messes are a bad thing.

Big Week, FINALLY

2010-07-14T18:23:00.000-07:00

Wow, what a great week it has been. It is so rewarding when you work toward something for so long and finally start to see progrees. So here is the latest with my little twins...

Keaton, oh he is so big. A few weeks ago he weighed 22 lb 6 oz. He has grown and is the sweetest little boy. He gives kisses when requested (which is really just opening his mouth and then full force face into yours) and is a great hugger. His tantrums are getting a bit worse, so this week we implamented time-out. Yes, he is only fifteen months, but it has to start sometime, right? So when he throws his tantrum I usually just ignore him but this week a few times I picked him up and put him in his crib for a minute, or until he calmed down and that seemed to work. I don't expect it will continue to work, but hey, willing to keep trying.

Also this week Keaton decided to start walking. While he has taken steps here and there or from mommy to daddy he really hasn't gotten the drive to walk from object to object or place to place. Then Monday it all just clicked for him. He is walking everywhere. Don't get me wrong, he does still crawl a majority of the time, but he will pull himself to stand and walk to the couch, tables, tv, etc and he loves standing on his own too. He gets so proud of himself and has the largest grin. Man my son is adorable.

Keaton also decided this was the week to expand his vocabulary. If you tell him to say something, he does his best to repeat it or really tries hard to sound it out. He says night night, bu bye, nice, mess, oh man, frog (Which sounds like the "F" word), book, no, meow (sounds like mauw), mama, dada, nana, chef, fork, bite and a few other words...so he has really picked up a lot.

And McKenna, she has been pushed so hard lately with switching to Myer Center for therapy and we are finally seeing rewards. This week she pushed herself up into sitting position from her belly a few times. Then today all of a sudden she was doing in repeatidly. I even found her sitting up in her crib during nap time - she couldn't figure out how to get back down. So proud of her.

And her speech is improving too. She still doesn't talk, other than mama, but she is starting to babbly a little more, which is such a blessing to hear and she has the cutest little voice.

This week McKenna also decided she is done with afternoon naps. That's right, she thinks that an hour morning nap (two if I am reallllly lucky) is enough to get her through the day. She is cranky and tired around 6 pm which is way too late for a nap, so if she doesn't sleep at 3 then she is forced to stay up until 7:30 or 8. Wouldn't mind that as much if she slept better through the night. She actually has improved on sleeping through the night now that she only gets one feed at 10 pm and then is done by 11, but she still tosses and turns quite a bit until around 7 am, when Keaton wakes up, and then she sleeps until 8:30 or this morning it was until 9.

And, drum roll, McKenna ate a couple cheerios today. Gave her a cheerio and lately she will touch it to her tongue. So I gave her one and walked away to do dishes and she started gagging/Retching. Ran over to her and she had put the whole thing in her mouth, it melted and she was trying to get it out before she had to swallow it. But after that little episode she grabbed another cheerio and put it in, only this time she sucked it until it desolved. That's huge. And she did it two other times. SO excited. The feedings are so draining and I really needed her to do that! Even if it was only tonight.

So what are we working on still with McKenna and therapy? This week we are trying to get her rolling more for objects. She knows how to roll, but she lacks motivation. SO we are rolling, rolling and rolling some more. We are working on her sitting up from laying down position. This includes from back leaning to the side and sitting up, and from belly scooting back to one knee and pushing up. Currently (meaning today only pretty much) she can push herself into a W and work her legs around one at a time.

We are also working on crawling. Poor lil Mickey wants to move around so bad. She is finally breaking out of her comfort zone of sitting straight up and has started leaning forward and leaning to the sides so the therapist thought it would be good to start working with her on crawling. So rolling, sitting, crawling and standing. Getting her to stand from a knee stance to feet. And on top of all that, which takes at least a few hours a day of hard work, we are trying to get her to eat still, so we are implamenting new foods this week - pears and chocolate yogurt so far have been doable. Will hopefully try a vegetable this week and see how she does.

Keaton we are still working with increasing his vocabulary, his walking/standing on his own, fine motor skills like putting coins in a slot and on sharing which he really needs to learn.

I feel like such a blessed mother today! Grateful for my babies! Grateful for the chance to raise these two beautiful kids and for a husband that allows me to stay home with them all day.

Another Change

2010-06-24T19:29:00.000-07:00

McKenna's retching continue to increase and so does our stress. We are fed up with the episodes and feel completely helpless when it comes to resolving this for McKenna. We want answers and can't seem to get any from doctors or research. And the only answer that does seem to continue to show up is slow down the feeds, decrease the quantity.

So with her retching nearly doubling over the past few weeks, today I caved in and have agreed to slow down her feeds so it will take an hour for her to receive full feed. It is really hard for me to do that and makes me so sad, but every time she retches I just want to cry, so willing to slow it down if this could possibly help.

I am not caving in altogether though. While I did slow down the feed I increased the quantity. She was getting 160 ml at 280 ml/hr three times a day with a six hour night feed of 210 ml. In an attempt to help her feel and understand hunger our goal is to eliminate the night feed completely. So today while changing it to an hour long feed I increased the quantity to 200 ml she will get at 220 ml/hr three times a day with a 10 pm feed of 120 ml over about 45 minutes. So she should be completely done with her night feed by 11 pm. I am anxious and nervous to try this. Hopeful this will increase appetite and help get her going on eating, but a little fearful as it is always scary to try something new.

If nothing else, we are hoping that the cord not sticking in her belly all night will help her sleep better. McKenna still is not sleeping well and that is such a crucial part of development...good sleep.

Their First Swim

2010-06-21T13:56:00.000-07:00

The inlaws have a neighborhood pool and I have been itching to take the babies in it since they both love bath time so much. Planned to go when my mom was here, then when Ashlee was here and neither of those times worked and Susie offered to watch a baby while I took the other one swimming. While this wasn't ideal to do it one at a time, I was willing to do whatever needed to get them in the water.

So, today it's 95 out and the sun is scorching down on us and Susie watched the babies while I ran errands. When I got home she asked if we were going to do the pool today, so I jumped at the opportunity. Got the babies all ready after their lunch, loaded the sunscreen and met Susie at the pool to find her wearing JEAN capris and a tshirt. I assumed she wouldn't do a bathing suit, but was surprised she was wearing jeans.

Anyhow, we got up to the swim area and they have a covered table area and she laid a towel down and said she would sit with one baby while I took the other to the pool. I feel bad because I was a little rude, but it's 95 DEGREES and a baby sitting out in the shade in that weather just wasn't acceptable to me, so I said, okay well let me get McKenna use to the water, then I will come grab Keaton and just take them both swimming at the same time. Susie agreed.

Luckily though within a few minuets of me having McKenna in the water susie was sitting with her feet in the water and holding Keaton between her legs so he could sit in the water too. SO long story longer, we got both babies in the pool at the same time. They loveeeed it. They kicked, splashed, cooed, and had a grand time. We only stayed there about 45 minutes but it was perfect. I am so blessed to have a mother-in-law that is eager to help and that loves her grandbabies so much! Can't wait for our next pool trip.

What a Month

2010-06-15T08:17:00.000-07:00

This month has been crazy busy and filled with a lot of joy, stress, and sickness.

Mom and Mandie came to visit mid-May. It was great to see Mom and the kids ate up every minute and word she shared with them. She laughed the entire time at all that they do; she helped with changing diapers, feeding the kids, and tiring them out for good naps. She even was able to witness Keaton's first steps.

Mandie was "sick" the entire time, so she slept most of it, spent her time outside or working on a contract for her daycare. It was a real disappointment to us that we flew her here and then she hardly spent any time with us. Praying she gets better by Christmas so we can enjoy her.

Keaton got sick and had a temperature of 103 for four days. He puke all over the living room floor a couple times, ate little food, was fussy and didn't sleep well. He lost a few ounces which doesn't sound like a lot but it really thinned out his belly. Luckily after the virus passed though he was back to his playful energetic self.

Keaton loves Kraft Macaroni and Cheese and eats huge spoonfuls, sometimes not even taking time to chew before swallowing. He loves breakfast bars too - his favorite is blueberry. He still eats yogurt continually - vanilla bean fluffy is 160 calories so we do that to help him maintain his weight. He will occasionally eat spaghettios although he is getting sick of them. And that's about the extent of his diet...mainly because I have no idea what to feed him and I am not that healthy of an eater, so we really need to work on that. May try Chicken strips this week, although a bit nervous he will choke on them.

Keaton took his first step mid-May and loves the challenge of learning to walk. He smiles ear to ear, claps his hands and giggles when he takes a step without holding on to anything, or if he stands without holding. Last night he took 6 steps and daddy was even there to witness it.

Keaton is starting to get very possessive and jealous. He doesn't like it when McKenna gets a toy, book or attention. Apparently he thinks we should ignore her and pay attention to only him. He fusses, cries and throws a little tantrum which we just ignore. And occasionally he goes over and hits McKenna now...luckily for her though she is starting to get the drive to fight back, so I don't imagine he will continue bullying her for long. But that's a tricky thing...do I let him take toys from her and hit her because she needs to learn to stand up for herself, or do I punish him? I end up doing a little of both. My mom says we need to spend more time teaching them to share. I say they need to learn that if they want something they should go for it. And McKenna getting to play with a toy and Keaton trying to take it, well shouldn't she let him take it so she learns to share too? The tricks of parenting...hmmm.

Keaton is our little comedian. He is so funny and makes us laugh on a continual basis. The way he eats, facial expressions, noises, laughs, games, aggression...just about everything he does he seems to be looking for a positive reaction from it.

McKenna is a spitball. She is very stubborn, just like her mommy. She knows what she wants and fusses or whimpers until she gets it. She has a devious grin and always looks like she is plotting something. She raises just one eyebrow to get her point across. It's very comical.

McKenna still retches a lot (average 5 times a day) and it's stressful on us that there hasn't been any improvement with that. We are working on cutting out her night feed to see if that helps since a majority of her retches are during morning. To do that though it means increasing quantity during day feeds and that doesn't go over well with her. Is causing a few more retches than normal, but she is also sick so that could be why retching has increased. But currently we are doing feeds every 4 1/2 hours...8:30 am, 1 pm, 5:30 pm, 10 pm, 2:30 am...makes for a long day/night.

McKenna is doing a lot better on her bites. She is taking 35 breakfast, 45 lunch and dinner. Bites are getting a little bigger to where i would call them bites, not just tastes, and she is actually starting to open her mouth for a majority of them. Although she still spits most of the food out of her mouth rather than swallowing it. Again, since she is sick right now is struggling more with the bites. Only was able to get her to take three bites this morning and she retched after each one, so we stopped.

So McKenna has the cold Keaton had a couple weeks ago. Her temp has been around 102 and it is going on day three. I think her fever is finally breaking, but she cries when she coughs so most likely has a sore and swollen throat.

It has been difficult because for the first 12 months we were discouraged from bringing them in public or having people over. Now we are allowed to do that stuff, but if we do it we know they are going to be sick all the time because they haven't built up an immune system. SO, we will continue to bring them out, although Kyle would prefer we don't, and hopefully by the time we get to Flu Season Fall we will have a little more cushion and they will be stronger.

McKenna started sessions with the new Speech Therapist last Friday at Myer Center - No more Oxford Home Health. During the evaluation I did the feeding, and then again during the first session. Curious to see if that is how it will always be. Makes since for me to do the feeding since I am the one that does it at home, but the woman didn't give me any direction or advice, other than to follow what First Steps is telling me to do. Not sure what her thinking is behind that, but hoping to get courage to say something if that is how it is again this week. Don't really care to waste our time, energy and money if all I am doing is taking her to a different location so I can feed and someone can sit and watch without helping. She is suppose to be the best...not sure who has deemed her as that.

We start with the new Physical Therapist on June 22 so we are really excited about that and one of our friend's sons sees this PT and says how amazing she is, so that makes me a bit more hopeful than I am about the ST.

The kids went to their first bday party for a friend. It was a lot of fun, but a lot of work getting them there and out. Not sure how I could have done it without Kyle! He was a trooper and a huge help. And THAT has been our month. Hoping for a healthier and more productive next thirty days

Cute Things

2010-05-21T19:23:00.001-07:00

McKenna has started patting her chest with her hand. It's adorable. It's like a gorilla, only she does it softly. She squeals and she she does a growling noise that is almost scary sounding, but it's so cute.

She grabs her feet and sucks her toes, or at least attempts to. She gets really excited and starts breathing hard trying to get them in there.

McKenna picks at everything. She finds hairs wherever she is and grabs them, pulls on them, wraps them in her fingers...they are her favorite toy. Discusting, but fun to watch her hunt for them. And she does the same with fuzzies, crumbs, or anything small.

Keaton stands on his own, without holding on to anything, and gets the biggest grin on his face. He is so proud of his accomplishments and looks at you as if to say, "hey, look at me, can YOU do this?"

He loves books and will go off to the side of the room and spend twenty plus minutes flipping through a book and looking at pictures and is so proud of himself turning the pages.

Keaton loves reaching up to touch the light and fan in the ceiling when daddy is holding him, and he thinks dad is the coolest for letting him do it. He claps when he drinks out of his sippy cup by himself, or when he looks at an object you tell him to look at, like tree or ball.

And he is the cutest eater. He tries to chew with his front teeth and puckers his lips trying to get the food to stay in his mouth. And if the food starts to fall out, he uses his entire palm to shove it back in...as if his fingers couldn't put it back in.

I have the cutest, most funny, adorable, loving and beautiful babies in the world. Grateful for our blessings!

Opening Her Mouth

2010-05-19T18:46:00.000-07:00

What a blessed evening yesterday. I went to feed McKenna as usual and put the food on the spoon (apples and blueberries) and not thinking just put it in front of her mouth and held it there waiting for her to open her mouth. I was on the phone so a little distracted. And, to my surprise she opened her mouth. A fluke, right? No, she did it again, and again, and before I knew it McKenna opened her mouth for over fifteen bites. She spit out the food, or a good portion of each bite, but I don't even care because her mouth opened. And I think that I have heard that a lot of babies spit out food when you first start feeding them, don't they? they have to learn to swallow it and how to actually eat. Opening the mouth is the first step.

Then this morning I nervously put the sppon up to her mouth to see if she would repeat the same thing and open her mouth...SHE DID. Not only for breakfast, but for lunch and dinner too. And normally I feed McKenna 30 "tastes" each meal. Breakfast and lunch though McKenna opened her mouth for 40 bites. That is huge.

I feel so grateful for God giving McKenna this progress. We really have been discouraged lately and this is just what we needed. Now if we could just get her to swallow the bites, and to eat even half of a jar of baby food. And a food that is higher calories. She has to eat 120 calories every four hours. The jar of blueberries and apples, and the jar of pears are only 50 calories for a stage 2 jar. So we would benefit from her eating bananas or chicken or something like that.

Thanking God today. Excited to see what he allows her to do tomorrow.

Milestones

2010-05-15T18:45:00.000-07:00

What a great week of growth for the babies. Keaton took his first step yesterday. My mom was here visiting and standing Keaton up and told him to walk to me. He moved one foot forward. Did it two different times. I think that's considered his first step, right? Even though it was only one foot? Either way, I was so proud of him.

We still struggle to get Keaton to eat without puking if there is any texture or if the food is too thick, but this week Keaton ate a half of a banana for my sister, without it being diced really small. He also ate some spinach quiche I made, diced tomatoes, a few french fries and a couple bites of a McDonald's cheeseburger. I was smiling ear to ear and so grateful. And Keaton is holding his sippy cup on his own and has even learned to tip his head back to get the milk to go in his mouth. He is usually still too lazy to drink it on his own, but we are working to encourage that more.

McKenna has had a great week too. She has been talking and making more noises this week, and even started her B's. So she now says mama and baba. She is currently mouthing papa but hasn't fully gotten the noise out.

During McKenna's evaluation Wednesday toward switching therapists she rolled from back to belly for the first time. I was so proud, but knew that she really only did it because she was SCREAMING for a solid hour and just so mad. But then tonight, of course while Kyle is outside mowing and nobody is there to see it but me, McKenna rolled back to belly, belly to back, and then back and forth multiple times. I was screaming for joy with her. It was so encouraging to see. I really needed that!

McKenna's bites and retching have not improved, but hopefully this week the motility specialist from KC is suppose to call and give a phone consultation. I am sure he will say he needs to see her, but hopefully we can get some kind of direction or answers via the phone.

Now if I can just get McKenna to turn into sitting position on her own, push up on her elbows/hands/knees on her own and for long periods of time, crawling, belly creeping, walking, babbling, eating, stop retching...the list goes on. But again, grateful for the steps forward today!

Growing Up Too Fast

2010-04-01T19:09:00.001-07:00

I have been so sad all day just thinking about how quickly my babies are growing up. I am nervous I am not holding them and cuddling them enough. What will happen in five, ten, fifteen years when they don't think it's cool to hang with mommy anymore and they just want to be with their friends and dating and running around? I knew that I would love motherhood, but the reality of it is that it is far more than I could have ever imagined. I am so blessed to have two wonderful, beautiful babies that are alive and breathing without machines, and cognitive, and loving...they are so sweet and loving!!! They smiles, and laugh and act like life is perfect.

Thankful for my babies. Thankful to be a mom. Thankful for another day that I can hold them, hug them, squeeze them and tell them how much mommy loves them!

My Bestest Friend in the Whole World

2010-04-01T19:01:00.000-07:00

This time last year my best friend was visiting from Chicago and we were painting pictures for the nursery. Sharon ate junk food with me, laid on the couch and bummed out. She didn't complain about a laid back trip or that she was bored or anxious to get home. She was supportive, loving and acted totally interested in all my boring stories and thoughts about the babies.

Kyle was out of town for business, so Sharon went with me to the doctor to do an ultra-sound (was having them every couple weeks) and it was that visit that we found out McKenna was not growing as fast as Keaton and there was possible cause for concern.

I went out of the ultra sound room to the waiting room while we waited to discuss with the doctor what was going on and I couldn't help but cry in fear of what the future would hold for my babies. So grateful Sharon was there to comfort me and make me laugh through it all.

God has truly blessed me by bringing Sharon into my life. I can't imagine what life would have been like if ten years ago He didn't make us roommates. It is just another daily reminder for me that He sees the big picture and all we have is a small glimpse into what each day holds.

Thanks Sharon for being my bestest friend in the whole wide world.

New Feedings

2010-03-25T18:58:00.001-07:00

Speech Therapist, Robin, brought a book for me to read on feeding McKenna homemade "forumla" which is really babyfoods or pureed foods through the tube. Book is several hundred pages, so only read a couple today, but started this afternoon by putting applesauce in with her forumla to see if her belly can handle applesauce. She is getting 1 spoon applesauce for every ounce of milk. That's more than book suggested but I think she will be able to handle it. curious to see if this helps her retching. She had four yesterday, four retches today.

And today on tummy time McKenna held her head up for 1 minute 45 seconds. I was the most pathetic proud mommy ever and was sure she knew it.

Blue Gums and a Fever

2010-03-25T18:54:00.000-07:00

My poor lil man...101.9 fever and I didn't notice it until tonight. Wonder how long he had it. Hopefully not the entire day. And he is getting a tooth (which is hopefully the cause of the fever rather than a virus) and the upper gum is black and blue where the tooth is coming in. Looks really painful. Anxious for the night to see if he makes it or wakes crying and miserable. And praying that when he wakes in the morning the fever is gone, bruising gone and tooth has popped.

She's Trying

2010-03-24T13:25:00.000-07:00

McKenna is trying so hard to say MaMa. It's fun to watch. She will put her lips together and move them like she is trying but 99% of the time forgets to add sound to it. Today though she finally added sound and said mama several times. It was so cute. Of course I do realize she has no idea what it means yet, but I am just so excited to hear her make a noise and one that isn't her just saying ahhhhhhhhhhhhh or squealing.

We have yet ANOTHER tummy time tool that First Steps brought for us. It's called Squiggles, I think. Basically it is a padded flat thing she lays on and then they put a tube noodle under her chest to encourage her to push up, velcro her but and legs down so she can't squirm out of it, and padded things around her knees so she can't move them. Honestly I don't think it has done much good. But then again I only used it once Monday (While therapist was here) and once Tuesday. Have been trying to use the thing I got from Walmart that is a floating disk she lays on and she can spin herself around. That works sometimes. She like spinning herself but doesn't hold head up very long. Really anxious for her to strengthen this area so she can eventually roll and crawl. She still only rolls from belly to back, not back to belly, and doesn't even do that very often.

She had only two reallllly bad retches yesterday, which is great! Kyle is in NY this week for business, so I am back to practicing my ignore her retching and act like I don't hear or see her doing it to see if it helps. She has only had two bad ones so far again today, but it's only 3:30 so won't be surprised if she has more, but grateful if she doesn't!

Can't believe they are almost a year old. Last year I was feeding the babies every three hours and it took 45 minutes to an hour to prepare food/feed and change diapers per baby, so sleep REALLY didn't happen. Grateful that last night for the first time in a long time I got a good night of sleep. McKenna still doesn't sleep well, so that means I don't either, but it is still way more sleep than I use to get, so I can't complain.

Crawling and Chatting

2010-03-23T07:55:00.000-07:00

Wow what a week for Keaton. He has done so well. We started really working with him crawling instead of just belly creeping just last week. Then yesterday it clicked and he is crawling more and more. Of course he still loves his creeping, but it's fun to see the crawling happening more each day.

Keaton started babbling more too. He still says just the mama, dada, baba, nana but he goes on and on with it and thinks he is having a conversation. It's so cute, though it does get frustrating when he decides to talk with a mouth full of food. Actually lately he hasn't been eating well either. We have to turn on a show "Brainy Baby" to distract him from playing enough to sit down and drink a bottle. Then when it comes to food he fake gags and throws tantrum when we try to feed him. So difficult and a little nerve racking since we have one kid that doesn't eat. Praying he doesn't become like McKenna with food.

So THIS is what it's like?

2010-03-19T05:12:00.000-07:00

Wow...tears in my eyes...only ONE retch yesterday and only a couple "gags" throughout the day. We are so grateful, especially after last weekend being so extremely horrible.

Speech Therapy came Wednesday - Holly with Oxford - and got McKenna to take several larger tastes of peaches. She was able to shove the entire spoon in McKenna's mouth without causing her to gag or retch. Most of the food fell off onto McKenna's mouth and chin, but she was allowing the spoon in with less resistance then normal. What a joy it was to see, although frustrating that McKenna won't allow mommy to do that. Of course when Holly left I attempted to do the same thing that night and was not successful.

Yesterday, Thursday, Speech Therapist Robin from First Steps came to work with McKenna and I reported how well she did for Holly. I think the competitive side of Robin came out because she was more forceful with McKenna than normal, which I was actually grateful for. And, to my surprise, she allowed it. Gagged small, very fake sounding gags only twice during the feeding. She showed me a new technique to try and when I attempted feeds at noon and in the evening it worked. She took several tastes for me and last night even opened her mouth twice. Wish I would have had more on my spoon during those two times. Hahaha.

Excited to try the feeding today and see if that plays a role with the retching. Perhaps having actual food in her belly rather than just formula helped decrease the quantity? (of course as I am typing this she just started retching, sigh...)

Several people have emailed or texted that they are fasting for our baby girl, which is such an amazing and humbling thing to hear. Brings me to tears to think that people have such faith and trust that God will heal her and truly puts me in my place. So, Sunday decided if others are doing it, I should no doubt do it as well. Monday started my five day fast for McKenna's retching to end, eating to start and tummy time to improve in order to give her back/shoulder/arm strength. I don't expect things to get better overnight due to fasting. Or even over the next week or two. Truly doing it just to show God I have faith in HIM that in HIS time McKenna will be healed, and I am putting full trust and faith in HIM. Ready for my baby girl to be healed, to crawl to daddy and try to eat his food, or to roll over to Keaton and pull the toys out of HIS hands for once instead of the other way around.

Bad Weekend

2010-03-15T08:56:00.000-07:00

Wow, it has been such a difficult weekend. Want to do nothing but crawl in a ball and cry ALL DAY LONG. McKenna's retching has gotten really bad again. Had improved a little for several weeks and then this weekend it went downhill and didn't seem to get any better. It has actually been getting worse the past week but then today it just got even worse. Her retching is worse, no improvement on eating and doing really bad on tummy time. SHe can't roll over, can't push up and just has to sit or lay there. It is really difficult to be happy or grateful for where she is at developmentally. Grateful that she has gotten better and truly improved from where she was at eleven months ago, but she is almost a year old and still can't do half the things a four or five month old can do. SO today I am going to sulk, and be depressed and allow myself to cry.

Have decided to keep her on her tummy all day long for a week. Starting today if she is awake she will be on her tummy. It is so depressing to see her just lay there while Keaton and I play, but maybe this will influence her to push up on her tummy? As for the retching I give up. NOt sure how to help her, what to do or what will make her better. Ignoring her retching doesn't help. Changing her position or feeding quantity or speed...none of it helps. SO yeah. again, just really discouraged today. Praying tomorrow will be better.

He Stood

2010-03-05T18:59:00.001-08:00

While playing with the babies tonight I turned my head for only a minute and when looking back at Keaton he was standing. I could hardly believe my eyes. Yelled for Kyle to come look. Keaton had pulled himself up by holding on the coffee table and was standing there playing with the notebook on it. He acted like it was no big deal, but mommy and daddy were so proud.

Actually daddy was like, "Now you REALLY have to watch him" (as if I don't watch his every move already). And then he got sad thinking how far behind McKenna is. Keaton has done awesome and really advanced quickly in the past few weeks. He started saying NANA this week, which is really good. And he has been pulling himself up to standing while holding on to us, but to do it to a table is an entirely new step forward.

McKenna did great today with talking and started saying DADA more frequently. She is still sleeping very poorly, which is getting more difficult each night. She has been crying for over thirty minutes as I type this, which is probably a good sign I should just get up and rock her, but wanted to make sure to record Keaton's milestone.

Growing Too Fast

2010-02-27T19:28:00.000-08:00

I can't believe my babies are getting so big and almost one year old. My how the time has passed.

Keaton learned to sit up this week. I was visiting with a friend in the family room and Keaton (who belly creeps everywhere and very fast) was over by the fireplace. Turned my head only for a minute and when I looked back at him he was sitting up and playing with the metal curtain in the fireplace. When he went down for a nap that day he was sitting in his crib when I went to get him. Needless to say we lowered the inside of the crib that night.

Keaton is into everything. He LOVES to push the buttons of the stereo and open the cassette holder part and crank up the music (which actually scares him...he just likes turning the knob). We have been putting a pillow from couch in front of stereo to protect it from breaking. This doesn't work. He pulls the pillow out of the way or his latest thing is crawling onto the pillow so he can touch the buttons even better. When I say "no" he turns, looks at me with a smile like "what did i do?" and then starts trying to get to stereo again. Hard not to laugh or smile at how cute he is but man is it tiring pulling him away from it for hours on end.

He loves to be hung upside down, tickled, thrown in air, or any kind of rough housing given. He is possessive of toys and if McKenna has a toy you can bet he will want it. He could have same toy in his hand, but will want the one she has.

Keaton says Dada and this week started saying Dat when trying to say dad. And he says hi dad. Well at least it sounds like it and he will mimic you saying it too.

He loves clapping and will do it on command, or if you say good job he claps and if you sing "If You're Happy and You Know It".

McKenna had several good days of low retching - only three retches per day. But today was back at six and one had pretty good size spit up with it. She is still not any closer to eating food or drinking (other than a few sips daily from sippy cup of water). We are anxious for the day she will take a bite or drink juice or milk from a bottle.

She is doing a lot better with reaching forward to pick stuff up off the ground and McKenna's latest trick is to pick something up, throw it forward then reach forward to get it. It's so cute to watch and she looks at you with the biggest smile to let you know she is so proud of herself.

She started taking her fingers to her mouth when saying ahhhh this week so it makes that broken ahhhh sound. It's so cute and great to watch. She occasionally will do a da da sound but for the most part just says ahhhhhh for long periods of time. Maybe she will be a singer someday.

She still doesn't like her tummy time and doesn't do well on it. But if you position her arms she can roll over from belly to tummy (can't do it unless you position her) and if you put her on tummy on a blanket and pull the blanket like a sled she looks up.

We are trying a few new techniques with McKenna this week to help her "map out" her body and hopefully it will help her with her sensory issues. Doing something called brushing. They give you a special brush and you brush arms, back, hips and legs without ever picking up brush. Is suppose to make her aware that her body is all connected and for her to feel the different parts of her body. Also doing mouth sweeps to help her feel her mouth out better.

McKenna loves large rings, pacifiers and spoons to play with. She loves watching Keaton play and scrunches her nose and breathes in and out really fast and loud when fake laughing. She is very ticklish on her sides and feet and has learned to take the blanket off her head during Peek-a-Boo or "Where's McKenna" as we call it.

McKenna has been a challenge with sleeping at night - waking up around 12:30 in the morning and will scream every forty minutes to an hour. Have tried everything we can think to do to get her to stop but so far haven't found an answer. Just praying she catches up on sleep sooner than later. The more sleep she gets the better she is with development and strength to grew.

Accomplishments

2010-02-15T08:34:00.000-08:00

Keaton is creeping everywhere! The other day I put him on the floor in his bedroom while I ran his trash to the garage and when I came back he was in the bathroom. If I walk out of the family room he will be on one side of the room and when I come back he is usually on the other side of the room, behind couches, pulling on picture frames or tying to poke at outlets. He is fast.

Keaton is starting to do more babbling. Saying dada, baba and occasional mama. He laughs at the simplest of things, like being hung upside down, tickling, saying achoo or boo, shaking your hair in his face...He has become very clingy and wants to always be in your lap while still moving around. He wants you to hold him while he plays with toys. He loves books, ripping pages and the sound of music. He is getting on his knees more and more and rocking forward and backward, in attempt to crawl. He still takes two naps a day, although they are shorter each day. Occasionally they are only thirty minute naps and that makes for a long day. And he loves to crawl over things - McKenna, pillows, laps, toys...

And my favorite thing to watch Keaton do lately is clap. If you tell him to clap, show him clapping or if he hears clapping he does it. And he gets this look on his face like, Did you see that? look what I am doing. It's adorable and truly we get just as excited as he does.

McKenna has really worked on her motor skills lately too. She is now able to reach for things on ground while sitting up, which is just amazing to see. She will roll from belly to back if her arms are positioned right, but if her arms are to the side and head flat on ground she doesn't know how to do it. She is starting to try to push up a little bit more on her belly and can occasionally hold her head up for twenty to thirty seconds, which is a big improvement for her.

McKenna sings all the time, and by sings I mean she just says AHHHHHHHHHH for long periods of time, over and over. She is learning to do an occasional dada noise, although for the most part it is just the singing noises. She is starting to finally look up at objects that are held slightly above her head, which shows she is gaining more head/neck support. She reaches for things high in the air finally too, although that doesn't always happen.

She still isn't eating, but occasionally will allow a syringe of less than a half ml to be put in her mouth (really it's forced into her mouth) and food squirted in or a spoon with hardly anything on it put on her lips. She takes sips of water from the sippy cup throughout the day, although she doesn't always tolerate the sips and we can't give her too many or she will retch, and we can't seem to get her to take anything other than water from it.

She now holds balls and will occasionally McKenna will put them in a bucket or where you tell her to put them. She is averaging only five retches a day for the past couple weeks which is HUGE. We are nervous to think that maybe they are truly decreasing, but hopeful. She still gags throughout day in addition to retching, but hey, we will take gagging over retching any day! It's hard for us to not be discouraged though or scared that she is getting worse again when she has more than five now.

We are so grateful for these twins and excited to see what the Lord is going to do with them. How will God use these babies to win the lost, reach out to the hurting and further his kingdom? I think He has already used them in such amazing ways and for that alone we are grateful.

Girls night out

2010-02-13T20:02:00.000-08:00

Second girls night out since the babies were born and it was more difficult than I thought it would be. Was excited to see friends, eat mongolian BBQ and shop. Friend Sarah came to pick me up and as I was walking out of the house I looked at McKenna's face and she looked so sad I was leaving. It made me feel really guilty. Keaton looked confused but wasn't too concerned.

We got to the restaurant and found out that it was going to be an hour wait, so we walked the mall and the entire time I kept thinking about the babies and wondering how the babies were doing and what they were doing and if Kyle was giving them adequate attention and blah blah blah. Made it a little over an hour before texting to check on Kyle. Started crying during dinner because I missed the twins and actually had a little bit of breathing problems and separation anxiety. If it is this bad being away from them for five hours, not sure how I will make it when they go to school. Grateful for the blessing and opportunity to be a mom!

First Wreck

2010-02-04T19:13:00.000-08:00

Needed to run to the grocery store today just to pick up one single item. It was raining ice but with Kyle out of town I really felt like I had to be the one to go. Didn't want to ask his mom to help. So, packed up the tinys and ran to te store and all went smooth.

Have had a tiring and rough week so figured I would reward myself by stopping off at Andy's for a frozen custard, and by stopping off I mean going completely out of my way for a treat my stomach and hips were telling me not to eat.

Of course getting to Andy's means taking the most dangerous intersection in Springfield, literally. So I pick up the phone to gab to my mommy while driving there, and yes it is still raining ice at this point, and get to the intersection and go to to turn on Campbell and WAMMMMM. A woman rearends me. I immediately freaked out, got tears in my eyes and thought to myself, I am really goign to have bad whip lash. Babies aren't crying. Are they okay? Do thy realize what happened?

I jump out of the car, open the back door and see both babies just starring at me like, hello woman, shut the door. It's freezing. SO shut the door and the woman that hit me is out of her van by now apologizing. I am shaking and saying, I HAVE TWINS, MY TWINS ARE BABIES, WHAT IF THEY ARE HURT? Look over the car and see the tiniest amount of damage. The screw holding her licsence plate made the perfect circle in my bumper.

SO we get in our cars, drive a half mile up the road to get out of traffic and exchange information. Get in my car, am crying telling Kyle how awful I feel that I put my babies through such trauma (even though the babies couldn't have cared less) and all he can say is how I should have just called his mom and I could have avoided it all. Oh and he is glad I am okay. Men are so funny.

Got home, called insurance places, made my report and just now calming down and realized I didn't even ask the woman if she is okay. Debating if I should call and check on her. Although again, it was her fault.

Da Da, Ba Ba

2010-01-13T19:58:00.000-08:00

Keaton started babbling this week. He now says "DaDaDaDa" and "BaBaBa". It's so fun to listen to him making more noises and to see him watching our lips trying to mimic what we say or concentrating to learn words. Hopefully soon he will be doing "MaMaMa" too.

Keaton weighed 18 lb 5 oz today. He has been the same weight for a week. He is weaning himself from nursing, but not taking well to the bottle, so we are struggling to get him to gain the daily half ounce they recommend. Need to call the doctor to verify he should still be gaining that much at this stage.

He tried peaches for the first time today. Didn't seem to dislike them, but you could tell he wasn't a huge fan. The smell of baby food is awful. Can't imagine the taste is much better.

Today Keaton started creeping over to me and pulling himself up on my leg. He is trying to hard to stand it looks like, but when I try to stand him up against the couch or just holding only my fingers he doesn't know how to hold himself up. He has been really loving and affectionate lately too and will creep over to Kyle and me and lay his head on our legs or cuddle up next to us. Soooo sweet.

She Drank Water

2010-01-06T18:50:00.000-08:00

What a great day...Speech Therapist with Oxford, Holly, got McKenna to drink a few sips of water from her sippy cup. Mommy was so proud of her and smiling ear to ear with tears filling the eyes.

Holly said to try the cup numerous times throughout the day, so tried again this afternoon and she drank out of it a small sip. Anxious to see how she does tomorrow. She also was putting the spoon in her mouth with mixture of cereal and sweet potatoes. She took a couple tiny tastes but no huge bites. She did so well.

Depending on how she does with the water the rest of this week, Holly will try formula in the sippy cup next week. Finally feeling a little hopeful.

Tummy Creeping

2010-01-05T19:01:00.000-08:00

GO Keaton, Go! Mommy is smiling ear to ear today, tears in the eyes and just so proud to see her son "creeping" across the floor. The Physical Therapist with First Steps came out yesterday and worked with Keaton a little on the tummy creeping and then came out again today and he did it all on his own. He puts one arm out and then pulls the opposite leg to the side and scoots across the ground. Tried getting him to do it later this afternoon and he still did it, but he was pulling both legs up under him at same time instead, and rolling to get places. SO, was still doing it, just not as well. And Kyle got to see him doing it later after the therapists had left and he was so proud and in shock. I don't know what was more fun, seeing Keaton creep or Kyle get so excited. Either way, I am so proud.

Fake Coughing

2009-12-31T05:37:00.000-08:00

Keaton has developed this new habit of fake coughing in the mornings. Not sure where he would have learned it since we don't ever cough really. He will wake up about thirty minutes before I get him out of the crib and just fake cough and talk until I go to get him. It is so cute and silly. As I type this though I am getting a little nervous wondering if maybe it is an actual cough or attempt to clear the throat and he is struggling to. Hmmm, will have to bring this up at his nine month check up.

Physical Therapy came yesterday and Keaton was screaming while I was working with McKenna so she offered to put him to bed for me. SO sweet and helpful, so I said yes. Then in the afternoon I noticed he had a scratch on the back of his head, which is a really dry spot of skin too. So I think she may have accidentally scratched him with her watch. Poor guy.

McKenna did really well with her PT yesterday. The therapist decided to try to help her with eating. So she sat McK in her highchair and putting rice cereal all over her hands and face and mouth, and much to my surprise, she allowed it AND she even sucked her lip in and put her cereal covered thumb in her mouth a couple times. I nearly started crying I was so proud and excited. She did gag once but it was such a small gag I hardly think it counts.

She also set an all time low yesterday with retching only four times. Of course two of them had spit-up and one of them was a decent size spit up, but hey, there were only four and we are grateful for that. It's not even 8 this morning and has already had three REALLY bad retches so I think yesterday was just a special blessing.

Alright, McK has really bad hiccups, Keaton is talking and coughing trying to hint he is hungry and ready to get out of the crib, and my house is a wreck. Guess those are signs I should start my day. Praying it's at least half as successful with improvements as yesterday.

Sleeping and Talking

2009-12-21T19:31:00.001-08:00

My favorite time of night is when McKenna's feeding bag has to be changed. I drag my feet out of bed, turn off the feeding maching, hook her venting up and head to the kitchen knowing that once I hook her new bag up I can stare over her and watch her sleep and then sneak into Keaton's room to make sure he is still breathing and jpeaceful.

Keaton is the cutest sleeper. He sucks his thumb and looks like he is at such peace. Each time I sneak into his room he is in a different position and a different area in his crib. I imagine that if I were to record him one night I would see him tossing and turning. The cutest part is when he is laying on his tummy with his bottom up in the air, arms trapped under his tummy and mouth open drooling. SO so cute!

Keaton now has two teeth on the bottom and he makes a whistle type noise trying to talk. He still doesn't babble any words. But he sure does try. And he has the most adroable laugh. It's contagious. He loves to be held upside down, to do the airplane on mommy's knees and when the word "Peas" is sung. Yeah, not sure why but he does.

Keaton isn't crawling yet, but he certainly is trying! He floats on his tummy, swims his legs and hands in the air and grunts as if that will help his body move. First Steps has taught us to push on one knee at a time to help encourage the crawling but so far it has not helped and just frustrates him more than anything.

McKenna finally found her voice today. She has been making a deep "Cat call" type noise all day. It is hilarious! SHe has been doing raspberries a lot lately, but for her to put a noise with the raspberries, or a noise other than grunting because she wants something is awesome. Brings tears to my eyes and a smile across my face.

McKenna struggles to sleep. She can't really nap well during the day because she has to sleep in the room that all the activities are goin on in due to the retching. So napping is a struggle. ANd at night not sure what it is but she usually wakes up around 2 or 3 and cries loud screams the rest of the night every twenty minutes, making it difficult to get much sleep. But the past week she has had a couple good nights of sleep. Not nights in a row, but still, they are nights of sleep non-the-less. So we are very grateful for that!

McKenna takes after her mommy and sleeps with her hand on her face, or near her head. SHe doesn't do well without something to hug on, like a blanket or stuffed animal. And though it takes her a while to fall asleep, she is the cutest little sleeper you could ever see.

Feel so blessed to be a mom. Even with all the difficulties we have had I still reflect on this year and thank God a million times over that we have our babies, and they are alive. Excited to see the journey God has for them and what they will do, who they will be, where they will go.

Exhausted

2009-11-25T04:39:00.000-08:00

Life has become exhausting. I love it, don't get me wrong. But each day I wake up hoping and praying for a miracle for my baby girl. Each day comes to an end with me still waiting. And each day I am continually reminded that MY timing is certainly not GOD'S!

McKenna has done great since she got back from KC. She has improved in so many areas and I am so proud of her. She is sitting up - with support of course - and can even "balance" on her own for up to ten seconds at times. Her head support has improved so much. When we came back she couldn't hold her own head up when sitting or being held. She still can't hold it up after short periods of time because she gets so exhausted but the increase on time she holds it up is great.

McKenna can now play with toys infront of her when laying down. She is enjoying the playmat and pulling on the things dangling in her face. She still can't grab things or really reach out for things when sitting, but occasionally she can do this too and those days are exciting to see.

She is still not eating, but at least she is allowing us to touch her mouth and she makes a game out of it. She sticks her tongue out occasionally too, allowing us to touch it. Speech Therapist says this is great step forward. She also has told us though that each day she doesn't eat is that much closer to her never eating again. And that eating issues can cause speech issues. Talk about pressure to get her eating TODAY.

The thing is that there is so many areas that McKenna has improved but so many areas she still needs to grow or strengthen. Each day I wake up and go through a list in my head of what she needs to work on, how I will work on it, how many therapists will see her that day, what will the follow up be, what will her response to them and treatments be and will we see any improvement. It grows exhausting and depressing. I want to enjoy my babies. Want to hold them, cuddle them, play with them and let them know that life is good, but instead feel like I am continually shoving information and techniques down McKenna's throat just trying to get her one step closer to where Keaton is or where the babies should be with development.

Keaton in the mix of this seems to get ignored a little bit during the day. I do my best to spend time making him laugh, helping him sit, play with toys, but so much of my focus is on getting McKenna better that sometimes thirty minutes will go by before I even notice that I haven't worked with him on anything. It's difficult juggling two babies.

I am so grateful to be a mom and even with the exhaustion of the day - emotional more than physical - and the people coming in and out of the home, and the ongoing activity and craziness I absolutely love my babies, love being a mom and love that God has blessed us by being parents to these two gorgeous children.

Teething

2009-11-17T19:35:00.000-08:00

Woo hoo. Last night Keaton started cutting a tooth on the bottom front. It has broken skin but it doesn't really show yet, you can just feel it. What an exciting thing to discover. He hasn't been too fussy until this afternoon/evening. So we gave him a little Tylenol. He has been really tired all day though and seems warn out. Excited for the teeth that show. He is going to be adorable with them.

Scootin' and Pushin'

2009-11-14T14:53:00.000-08:00

Poor little Keaton wants so badly to crawl, get around on his own and be independent. He can't even sit up yet on his own but is already trying so hard to scoot and reach things. First Steps is teaching us how to help him learn to crawl or grab things. Really it seems to frustrate him more than anything.

Keaton talks all the time now. He grunts so loud when playing and interacting and his laugh is the most wonderful sound a mother could hear. He is a true joy to watch and play with. We are so blessed.

We are working on a few different things with Keaton. Sitting up is the main one. He can sit on his own for about five seconds. Daddy says it's just mommy balancing him, but I still consider it "sitting". We are working on him crawling too, standing, talking or saying coo words and much more.

Keaton weighs 15 lbs 8 oz. He is eating oatmeal daily and we will give him baby food starting this week. He is 25 inches long and can finally use his toy that helps him stand on his own if we put pads under it so his feet can rest flat. It's fun to watch him on his own.

McKenna is doing better too. She is more energetic and reaching out for toys more. Still not doing much on belly time. She doesn't have back or arm muscles really, but you can see her trying so hard to push herself up to see what's going on.

McKenna has the most amazing smile. She scrunches her nose and opens her mouth like she is going to bust out laughing. It is contagious.

We are working currently on McKenna sitting up, standing with support, belly time and lifting her head on her belly. Also doing sit ups to build the arm and back muscles and trying to get her to use her left hand more - she is very right side dominant. It is so fun to watch her growing and to see how quikly she is catching on to things.

McKenna currently weighs 13 lbs...yes, she hit 13 lbs last night and we were so excited. She is 23 inches long. She eats special formula but is still fed through a feeding tube. Can't have anything in her mouth without it causing her to gag or retch, but when we feed Keaton oatmeal each day we offer her water on a spoon so she learns that she is suppose to eat. Occasionally that makes her gag too but for the most part she keeps her mouth shut or just grins at us as if to say "goodness no...you ain't gettin' that in here". Yes, her grammar is amazing.

Hanging On, Kind Of

2009-11-11T19:56:00.000-08:00

Have never felt so helpless, stressed, sad for my baby girl. Watching them dig a hole into her stomach with scissors yesterday, without pain meds or numbing cream, was heart breaking and makes me feel so guilty. Not sure what else I can do to help her or how to make her feel better or get better or move forward with a healthier future and it is so frustrating that doctors here have no answers, doctors in KC don't care, and we are left here as parents helpless with no direction or hope. Praying tonight is the night of miracles and that God heals our baby and that this is just one more stage to her testimony.

Sitting and Grunting

2009-11-01T11:01:00.001-08:00

McKenna is really making improvements. She is starting to sit up better with support and hold her head up a bit more. Still not looking around very much when laying flat or when sitting.

She is starting to moan and make more noises too. Her laugh is more often also. These are all great things to see. We are so excited for her to be a babbling baby.

However, I think McKenna may be overheld a bit. She fusses when she gets really tired or when she wants to be held and it is pretty loud. The second mommy picks her up though she is a happy girl and shuts her eyes right away.

Keaton loves his little gym mat and is reaching out to touch everything. Grabs noses and mouths when being fed. Starting to tug on his feet more.

He is more and more interested in McKenna and hates nap time more each day. He is actually to the point he starts breathing hard when we take him over by the crib because he knows he is going to have to sleep. Then he will scream for a good while until he falls asleep. Will be funny when he is a teenager and loves sleep.

McKenna

2009-10-28T20:33:00.000-07:00

McKenna, you are the sweetest most gentle baby I have ever known. You have the most amazing smile that lights up the room and is contagious. You crinkle your nose and stick out your tongue half the time when smiling and you look like you will bust out into laughter at any moment. It's adorable.

You are great at laughing. You don't talk much, but if you find something funny you don't hold back. Usually pulling your arms out of sleeves or socks off the feet is all it takes to get you going.

You are just learning to make noises. You love spitting and making "raspberries" with your mouth. And your talking is more of a grunting or groaning. Daddy always thinks you are crying when you talk because it sounds very similiar to your fussing.

You hate dirty diapers and you are sure to let us know when you need to be changed. You actually have a gagging episode half the time if you poop. Not sure why, but it is helpful either way.

You love to lay on your left side. We try sleeping you or laying you on your back for play time but you roll to your side almost immediately. And you don't really move around too much once on your side. You are content to just lay and observe.

You are really good with a rattle, especially if it is in your right hand. There is no doubt you will be right handed.

You love your Pooh Blanket Bear. You try shoving it in your mouth and get really excited when you see it. You love soft blankets too or anything cuddly.

You are the best cuddler. You don't care who holds you, as long as you are held. You lay your head on mommy's chest and fall asleep instantly. You just started clinging to clothing too when being held so you rest your head, but hold on for dear life with your hands. It's so cute.

You have such a sweet spirit. We are so blessed to have you as a daughter and thank God daily for you.

Keaton

2009-10-28T20:27:00.000-07:00

Keaton, wow you are rolling like crazy. You started rolling yesterday from your back to tummy and now refuse to be on your back but fuss if you are on your belly more than two minutes. You are active and love to stand and get irritated when we aren't holding your hands to help you stand. And if you aren't standing or rolling you will settle for sitting up (with support because you can't do it on your own yet).

You are a morning baby and love for mommy and daddy to come and get you out of the crib. You wait patiently every morning for us to come in. Sometimes we don't even realize you are awake because you are so quiet and just enjoy sucking your thumb while you wait. But once the morning starts you don't want to stop.

You hate nap time and scream the second you hit the bed. We throw a pacifier in your mouth and one in each hand hoping that will give you peace but it usually doesn't do any good because your thumb is really what you want and you would prefer to be held to fall asleep.

You are a great cuddler when tired or after eating, but only if it's your idea. You don't like to be held down, so mommy shoving your head on her shoulder to get hugs makes you really mad. You love story time and try to turn the pages yourself. You love music and you put everything in your mouth that you see. You are a true blessing and delight and we are so grateful to have you as our son.

Surgery Has Begun

2009-10-06T06:14:00.000-07:00

The surgery has begun. The nurse came in the room at 6:45 am and told me they were on their way to get her. Tears filled my eyes as I started thinking about the pain she is going to be in from the surgery, the difficulty comforting her since I won't be able to lay her chest to chest for a week or two, the long recovery road she has in front of her. I rushed over, grabbed my purse and pick my baby girl up into my arms and laid her head on my chest. Swaying side to side I said my prayers and sang worship songs over her.

An hour past and they still hadn't come to get her. By then my emotions had died down a bit. I am eager for this procedure to be complete and for us to move forward in life as a healthy family. Excited for the possibility of my baby girl not spitting up or choking every time she eats and getting heart monitor off. Excited for my daughter to be a baby and feel well.

Walking down to the operating room all the nurses were eweing and ahhing over McKenna and how gorgeous she is and how incredible her eyes are. We got into the pre-surgery room and the nurses flocked to her and just babbled on and on about her and fought over who could be in recovery with her. Makes a mom happy and feel good, that's for sure! I know that she is going to be in pain but at least she will be loved on when we can't be with her in there.

Anxious to see my baby girl, pick her up and love on her.

McKenna's Surgery

2009-10-04T19:25:00.000-07:00

It's day ten in the hospital and things just seem to get harder here. I feel so sad watching my little girl suffer like she has. Her body tightens up, her face goes red, her eyes tear and then the loud violent noise of gagging occurs. It's heartbreaking! And in two days she will have the fundo surgery and will have to suffer the pain of her stomach being cut open and recovering from that. The best way to comfort a baby is to put them on your chest, but I know she will be in too much pain for that since that would require her tummy to be against mine. And she is getting the feeding button and that will be poking out of her tummy so that will cause pain too.

Kyle and I keep reviewing the procedure and trying to think of alternatives but we know there are no other options or we would do them. Meds, formula switching, spacing out feedings...none of it helps. She continues to vomit and to be in pain.

McKenna looks really sad today. Not sure if she is just exhausted or if she knows that something is about to happen. Or maybe she is just mad at me. Kyle, Grandma D and Keaton came to visit for the weekend and I keep going to the hotel so I can nurse Keaton. She could just be upset that I keep leaving.

All the nurses in the hospital go crazy for her. If they have watched McKenna even one shift they always come and visit during other shifts and try to get her to smile, which really doesn't take much - she is a super happy baby. They all comment on how gorgeous she is and adorable, and how amazing her eyes are. She really does have the most amazing blue eyes. Even the doctors comment on how sweet she is during their daily rounds.

Keaton is at the hotel with Grandma and Kyle and McKenna and I are getting ready for bed. I go through crazy withdraws being away from Keaton. I miss him so much. He is so cute and happy all the time and I miss hearing his laugh and cooing. And I miss seeing him smile with his mouth wide open and eyes squinting. He has to be the sweetest little boy.

Excited for this week to be over. Want to be a family again with us all together under the same roof and McKenna healthy and well. Praying that this procedure is the answer and doesn't end up causing more complications or problems in the end.

Baby Girl in Hospital Again

2009-09-26T14:08:00.000-07:00

It is so sad to see little McKenna in the hospital crying in pain. Who knew that acid reflux could cause such severe pain and problems. Looks like surgery will be necessary to fix it but we are praying for a miracle.

McKenna is starting to coo a little bit here and there, and she LOVES to blow bubbles with her mouth. She is a very smiley baby and loves attention. She looks like she is on the verge of laughing out loud most of the time. She loves to be held and cuddled, but this usually causes her to spit up, so we don't get to cuddle as much as we would like. Hoping if she does the surgery she is still a cuddler and we can do that more.

Daddy is bringing Keaton to Kansas City since we haven't seen him since Wednesday (brought McKenna to KC Thursday morning). Can't wait to give him kisses and hugs and love on my son. He is growing up so fast and laughing and cooing like crazy and talking more and more so being away from him has been so hard. So excited to see him. Curious if he is making new noises or if he even notices McKenna and I are gone.

House has been really stressful lately. We are eager for McKenna to get better and for us to be able to play the role of normal parents without continually having to worry about health issues with the babies. If she does have to surgery we are hopeful that this will be the only one she ever has to do and hoping that it will be as easy as doing a surgery and then being healthy from here on out.

Thankful

2009-09-20T09:36:00.000-07:00

While reading a friend's blog today was reminded to count my blessings rather than concentrate on the difficulties of life. Kyle and I have been struggling because of McKenna's health seems to be deteriating before our eyes. We are heart broken she has the tube in her nose and seems like she is in so much pain, but among it all we need to remember to countour blessings.

Thank you Lord for a roof over our heads, that Kyle has a job, that I am able to stay home with our babies, that we have a good marriage, that we have an amazing support group of friends and family, that we have our health, that we are blessed with two gorgeous children and that they have made it through so much, and for their site, hearing, touch, tastes and all the senses they are blessed with.

Thank you that we have today and the opportunity to bless your name. Thank you for doctors and nurses that are doing their best to help, for food on our plates every night, for all the people that have blessed and helped us or offered to, for your undying love and that today we are able to do the best we can.

Our prayer is that we can continue to see Jesus through these hard times and keep our focus on him.

Rolled Over

2009-09-10T17:30:00.000-07:00

Woo hoo...Keaton rolled over today on his own. Has been a while since he has done that, so I was super excited when I turned around for a second and looked back only to find that he had rolled over.

Keaton is a delight. He is full of smiles, laughs a lot and talks none stop. He is adorable and interactive. Every time I see him my heart melts at what a little angel Keaton is and how blessed I am to have a son. Can't wait to see what he will do for a living, what he will be like when he grows up, who he will marry, where he will live...the whole works.

McKenna is really improving on tummy time. She is lifting her head more and holding it up for longer periods of time. She is starting to coo a little bit when she sees Keaton, but is still a pretty quiet baby unless you make her mad. Wow does she have a scream then.

She has the most incredible smile and loves it when we say "boop" and touch her nose. She loves to be held and talked to. She stares at Keaton and is eager to get his attention. She is content most of the time and very laid back. What a blessing to have a daughter that is so sweet, loving and wonderful from the start. I love waking her up to see her smile and she makes me laugh all the time. I never knew how funny a baby could be.

Motherhood has been more amazing than I could have ever imagined. Waking up each morning and hearing or seeing the babies makes me smile ear to ear and makes life feel more complete. We are truly blessed.

Making Progress in Areas, But Falling in Others.

2009-07-18T15:34:00.001-07:00

Great news, McKenna weighed 6 lb 14.5 oz Friday. This is a huge weight gain and we are really excited about it. Hopefully she will keep up with the gaining. The nurse is planning to come out once more and if she has another huge gain we won't need her coming here any more. Of course with as paranoid and worried as we are we will still probably take her in once a week for weight checks if nurse doesn't come here.

McKenna went eight days without a heart rate drop and then this morning she had one during a feeding. Nothing more scary then seeing your child turn dusky colored and hearing an alarm sound. They are planning to take away the monitor mid-week assuming she doesn't have any heart rate drops outside of feedings. Scary to think that they will take it away since the one she did have was during a feeding. Grateful for the eight days she went without drops and praying the one this morning was the last one.

Both babies are still having choking episodes during the night. Setting them up in car seats has worked decent but not well enough to prevent the choking. Doctor put Keaton on medicine for the acid reflux and if nothing else it seems to have calmed him a bit more after his feedings - not as many screaming fits following eating. They didn't put McKenna on the medicine because she really isn't fussy, but spits up a lot and the medicine doesn't help that part of reflux they say.

Keaton is sure gaining weight. Eating 4 1/2 ounces every three hours and then at night will go with a 4-6 hour shift or two. What a blessing that has been. We were so thrilled when he went the six hours without waking but that has only happened once. Working on increasing that. He is almost growing out of his newborn size clothes though and in the next week or so should be getting closer to wearing the 0-3 mos clothes.

McKenna is getting bigger too - obviously with her weight gain. Tricky part for her is that she is almost 20 inches long but super petite, so the clothes that fit her length don't fit her width. Either way she has graduated from preemies this week and finally able to wear the adorable newborn gear.

First Steps came this week and worked with McKenna. They will work with Keaton their next visit. She thought McKenna was doing better with feedings and seemed more alert in general. The thing we will be working with her on during the next month is getting her to turn her head the other direction (she always turns it to the left) so she doesn't get stiff neck and more tummy time (2-3 times a day only so she doesn't burn too many calories).

Keaton always turns his head to the left, so we need to start getting him to turn his head to the right more. We put the babies on different sides of bassinett in each room to encourage them to look other direction. Works for McKenna but not really for Keaton yet. So, we are encouraging his head to the right to look at his sister more. We are also working on more tummy time (he rolled over twice earlier this week), more awake time throughout the day and helping him find his hands with wrist rattles. Will be fun to see what First Steps tells us to do with him to help him advance.

Had the babies been born at their due date they would be a month old now. Can hardly believe they are 3 1/2 months old. We are so blessed and are sure to count our blessing daily.

Please keep the family in your prayers. Pray for their overall health (McKenna was sick this week), McKenna's heart rate drops to go away and her feedings to improve and for growth. Pray for Keaton's continued growth and for his acid reflux to go away.

Not Much to Update

2009-07-18T15:33:00.003-07:00

Really isn't much to update everyone on. Nurse came to the house Friday and according to her scale McKenna had gained less than one ounce in four days. Seeing as how they want her to gain a MINIMUM of half an ounce a day, but really would like her to gain a full ounce daily, that wasn't good news. The other thing to consider though is she has a different scale than our doctor's office, so we are hoping the lack of weight gain is due to that. For now the nurse will come out once a week to check on her weight and any other concerns we have.

Both babies still seem to have reflux. We have been putting them in their car seats after feedings for thirty minute minimum for the past 24 hours to see if that will help. So far it hasn't really made much of a difference. If Keaton remains fussy after feedings they will put him on meds and the nurse is going to talk to the doctor again tonight because McKenna is still dry heaving even when sitting in her car seat. If they put her on meds for it then this will mean she is on iron, a vitamin, and reflux meds. That seems to me like a lot of meds for a young lady that is only 6 lb 1 oz.

First Steps (a developmental program) starts this Thursday. They are going to concentrate on helping McKenna with her feedings, helping both babies with their head shapes, helping Keaton's feet to not turn in so much, and teaching us baby massage. They will come twice a week for the time being and as they get older they may come more often depending on their needs. Currently it is just an occupational therapist coming, but with time this program could include a speech therapist, physical therapist and occupational therapist. They will address any developmental concerns we have as we go along. Really excited about this program and hoping it helps the babies catch up to their age quickly.

Thanks everyone for the continued prayers. Will update you Friday with the weight gain. Hope you are all doing well.

Weight Check

2009-07-18T15:33:00.001-07:00

Got a call from doctor yesterday and they are concerned about McKenna's low weight gain. Because of this, they have arranged for a nurse to come out to the house a couple times a week to weigh her. Apparently taking her to doctor once or twice a week is burning too many calories so they would prefer to come out here. Also, since they don't want her around kids/babies, taking her to the doctor's office is putting her at a risk of getting sick, so no more trips to doctor until their four month check up in August. Of course that is assuminng that she DOES gain the necessary weight and doesn't show signs of needing more blood work.

If McKenna does not improve her eatings she will have to get a feeding tube. This is something Kyle and I would be trained on inserting and we would have to put the tube in after each feeding if she doesn't do a certain amount. Praying it doesn't get to this point.

Last night was rather difficult with McKenna's eating. She didn't meet her minimum for two of the feedings and struggled to wake up for the feedings too. She did a lot better this afteroon. I had to take off her clothes and feed her in just her diaper to get her eating, which in the past has not been okay because it burns too many calories for her to stay warm, but when she is struggling to eat even an ounce, I think it is probably better if she is warming her body and burning calories instead of burning calories she is not even taking into her body by not eating.

Keaton has been fussy off and on still. We have tried the gas drops, tiring him out, letting him sleep, holding him, not holding him...he just is requiring a lot of attention right now. If we hold him or sit holding the pacifier in his mouth for hours then he seems to be alright.

He is back to his eating every three hours at night. It was nice while the four hours between feedings lasted, but that was very short lived. Hopefully he will start back up on that agaiin soon...we are ready for him to sleep through the nights and going from three to two feedings a night really did help a lot.

Thanks for all the prayers everyone! We really appreciate them!

Answers Please

2009-07-18T15:32:00.001-07:00

Nothing more stressful than spending an ENTIRE day going back and forth to doctor's and walking away without answers and feeling completely helpless. It has to be the most difficult thing for a parent to watch their child suffer or go through things and knowing you can't help them or find answers for them. So, here is what we "found out" if you could really call it.

McKenna's heart drop was legit yesterday. Turned out she only had one, but her heart rate (normally 160s) got down to 40. SCARY! It was outside of a feeding which other than after her two month shots she hadn't had them outside of a feeding since she was born. After reviewing monitor report they think she most likely was choking on spit up or pushing really hard to stool and holding her breath too long. Her suggestion is for us to elevate McKenna after feedings and see if that helps.

We are encouraged during the next two weeks to have McKenna OFF the monitor as much as possible. If we are with McKenna and watching her she should not have the monitor on. The doctor thinks we are geting so use to having it that we won't be able to part with it comfortably when it is time. So during feedings we are suppose to have it off and just watch for cues as to if she is having heart drops. And when we are with her just suppose to watch her color and all. Basically only time she should have monitor on is if she is sleeping, we are sleeping or we are in the other room. In two weeks they will download monitor again. If no heart drops outside of feedings we will have monitor taken away.

Oxygen monitor last night went off only a few times during feedings, but the doctor didn't think it was enough to require oxygen during feedings. That is great news for us since it required Kyle to be up with McKenna's feedings last night too - too difficult for me to carry two monitors plus a baby.

McKenna weighed 6 lb 1 oz (she drank 1.5 ounces right before being weighed so she probably weighs a little less) meaning she gained 4 ounces this week. They like to see around 5 oz weight gain weekly, so she is a little lower than usual but they are comfortable still with her weight gain. She is not eating well the past two days and has struggled to eat her minimum (1.5 oz every three hours) so we are a little worried about that, but they don't have any suggestions on how to get her to eat better or be more interested in the white cheddar smelling formula. We will be going one or two times a week for weight checks until her four month check-up.

McKenna's blood counts are basically the same as last week. This is good news that they haven't dropped, but bad news that they really haven't gotten any better. Since our Pediatrician was out of town today we won't know until later in the week when we need to go back to see her or have more blood work done.

We are still not able to have babies around other babies or kids due to their weak immune systems. The doctor will re-evaluate this at four month check-up.

As for Keaton...he is a tank. Gaining weight like crazy, sleeping well and doing two four hour shifts at night, meaning we are down to two night feedings. Woo hoo.

Keaton has been really fussy lately though. Not sure if this is just him missing Grammy Deb, is from reflux or just gas. Either way, praying that goes away soon. He has been spitting up A LOT lately after feedings. Doctor said we should tilt his bed up so his body is down angled after each feeding to help prevent spit up. If that doesn't work we can consider adding cereal to his milk, which I would really prefer not to do at this point if possible.

Prayer requests are for Keaton to stop with fussiness, continue sleeping longer through the nights and learn to sleep through entire night, and for his reflux to go away.

For McKenna, please pray that she learns to suck/breathe/swallow when eating, that the added iron doesn't constipate her (yes, i know that is a weird prayer request), that she never has a heart drop ever again, that she starts WANTING to eat and we don't have to force her to eat, that she gains weight and for overall health and wellness.

Thanks everyone...has been a long day so if you called for updates or sent texts, sorry we didn't get back to you.

Not a Good Day

2009-07-18T15:31:00.002-07:00

McKenna has slowly started going backward again. Past couple days has been really tired, not interested in feedings, eating less, and zoning out quite a bit. She is pale and seems to be getting paler. And this afternoon she had two heart rate drops outside of feedings. Think it goes without saying that we are worried sick and truly at a loss as to what to do at this point. Doctors seem to pass everything off as being a preemie, but now that she is nearly three months old, or 3 weeks past her due date, it doesn't make sense that she keeps going backward. And if she truly is no longer having blood in her stools than she should not being needing more transfusions, right?

Tonight we are doing the SAT monitor to see if she is low on oxygen throughout the day, or during her feedings, which could cause the drops. As said before though, they have done these monitors on her a million times and we have yet to see her oxygen low.

Tomorrow the heart doctor is going to look her over and exam to see what they can find out due to the drops today. Then we will be meeting with the pediatrician in the afternoon for more blood work, weight check and overall examination because of the drops today. Of course our pediatrician is gone again tomorrow, so we will have to see one of her partners.

We are completely lost on what to do, how to help her, or what needs to be done for her to get better. Please pray for wisdom for us with the doctors, wisdom for the doctors, and for a miracle for our baby girl!

Results

2009-07-18T15:31:00.001-07:00

We got the results yesterday from the blood work and McKenna's levels have gone down again. Not sure why since she has not had blood in her stools for nearly a week (praise God). So we have been waiting all day for doctor to call us to see when we need to go back for another blood test and to see if another transfusion is needed at this time.

Pediatrician and heart doctor both think that it is okay to wait for transfusion. The confusion is that the pediatrician is telling us to wait a month before we do next blood test and heart doctor said we need to wait one week before more tests. Nothing more stressful and confusing than two doctors calling you and telling you contradicting information or scheduling so we are frustrated, as usual.

SO, we are waiting until Monday now to see if we should do a blood test next week or wait the full month. They have both agreed she needs more iron, in addition to what she is currently getting. So we are starting her on an additional med this evening. Hoping this will help her out. She is really tired out and not wanting to wake up to eat again lately, which has been a sign in the past for needing a transfusion.

The heart doctor is sending out ANOTHER monitor Monday which will determine how much oxygen she is getting. We will have the Sat Monitor on her for 24 hours and htey are trying to determine if the heart rate drops are because of low oxygen. Of course they had this monitor on her in NICU and there wasn't oxygen problems, and when she was in the hospital for five days following the NICU they had it on her and there wasn't low oxygen at that point either. So really it is just another expense and more of a hassle than anything else. It seems like they can't come up with a reason she is still having the drops so they decided they will just keep running the same tests to see if they get a different results. Sure would like to see our doctor's house after all the expenses we have...it must be huge. Glad we were able to get him an upgrade.

Keep praying for our babies please! Especially McKenna.

Going Up

2009-07-18T15:30:00.002-07:00

Babies are gaining weight. Well, Keaton hasn't had a weight issue since the beginning, but McKenna is finally gaining weight too.

Keaton weighed 8 lb 5 oz today. Almost three months old makes him seem small, but really he is just 18 days old corrected age, so that's great. He hasn't rolled over again or really done much as far as milestones go lately. He has improved on eye locking though. He will look at you and make eye contact for longer periods of time finally. And he is more responsive to sweet voices lately too. He lovvvves Grandma Deb's voice and just stares at her.

McKenna is up to 5 lb 13 oz. We are thrilled about the 8 oz increase this week, although she was just weighed after a feeding, but that would mean she still would have gained at least 6 oz. She looks bigger to us too. She enjoys staring at Keaton as he fusses and looking at herself in the baby mirror. So cute. She has kind of decreased on her feedings yesterday and today and seems really tired. This has been a sign of a need for transfusion in the past. Hoping she has just been overstimulated with all that is going on and that she will be more energetic and have her appetite back tomorrow.

McKenna had her blood drawn and we will hopefully find out in a few days if she is still losing blood and if she needs a transfusion or is starting to produce blood on her own.

We will keep you posted with what we find out, but thanks for the prayers on her feedings and weight gains!!!

No Blood

2009-07-18T15:30:00.001-07:00

Woo hoo...what a praise report...no blood in the stools for five days now. We are thrilled, but still nervous and waiting for blood to appear.

McKenna goes in tomorrow for a weight check. She has been doing great on feedings, hitting almost two ounces every three hours with an occasional two and a half ounces. She also had her intake increased to 24 calories (normal is 20 cal, she was at 22 cal). Hope all this helps her gain the necessary weight.

She had a heart drop during her feedings yesterday. She still has a few a day during feedings, but yesterdays was so low the monitor went off. Made us thankful we still had the monitor on her. I think the drop was due to her being so tired and not having the energy to eat.

McKenna is also having blood work done tomorrow to make sure her blood levels aren't still dropping and to verify another transfusion is not needed at this time. Keep prayers coming. We REALLY APPRECIATE THEM ALL!!!

Bu Bye Monitor Number One

2009-07-18T15:28:00.000-07:00

We got rid of Keaton's heart monitor. Yipee! We are thrilled that we can now pick up our son, carry him around the house or change his diaper or give him baths without carrying a machine with a super long cord everywhere we go. What a joy.

McKenna still has her monitor and will have it until things clear up with her bloody stools and we are sure she won't be needing more transfusions. We are more than okay with her still having hers because she is still so tiny looking that it makes us feel more comfortable and safe knowing she has it on.

The blood in McKenna's stools has gone away. She hasn't had it for two days - woo hoo- and that is while being on the "affordable" formula. We are not getting hopes up too high though. There have been days where she doesn't have blood in her stools and then it ends up coming back. So for now that plan is to keep her on this formula until she has blood. If she has blood, we immediately switch her to the more expensive stuff and she will go straight to KC.

We are temporarily able to avoid the KC trip Monday. The pediatrician thinks we will get there and they will tell us to try the other formula two weeks before doing the scan, so we are going to wait. If by miracle she truly doesn't have any more blood, we won't have to go to KC at all, so that is obviously our prayer.

Tuessday we take McKenna in for a weight check and another blood count to make sure a transfusion is not needed. So until then, those are all the updates we have. Thanks everyone for your prayers, love and support. As always, it is so wonderful knowing you all are holding us up in prayers. Thanks!!!

Follow-Up

2009-06-24T18:38:00.000-07:00

Kyle took McKenna in for her blood work today. Numbers are not low enough for a blood transfusion. We will find out tomorrow when her next blood count will be.

The new formula she is suppose to be on is not available in Springfield. We will have to purchase it online, and in a case rather than individual containers.

We are waiting for confirmation tomorrow but looks like Monday we will take McKenna to KC for conferral with nurse practitioner. Then will do a follow-up and scan with doctor at a later date. If we don't go Monday we will have to wait until August to get into the doctor. The longer we wait the more blood our daughter loses which means we will need more transfusions.

McKenna had her formula increased to 24 calorie instead of 22 calorie, but she has decreased her feeding amounts. She is only taking about 1 1/2 oz now instead of the 2 oz she was up to.

Please pray McKenna gains weight, starts to do better with her feedings, doesn't need any more transfusions, only goes to KC if we really need to and that scheduling is all figured out. Happy my mom will be here this weekend so if we need to go to KC we will have the help and my amazing mother-in-law will help with Keaton so he can stay home! Thanks moms...you both are amazing!!!

Doctor Appointment

2009-06-23T17:50:00.000-07:00

Both babies passed their hearing tests today. We are so excited and grateful for this as we were a little concerned about Keaton's hearing. Apparently he just tunes us out. That's scary. Can't imagine how much more he will tune us out over the years. Hahaha.

Doctor's appointments went as expected. Keaton's hernia is okay as long as it doesn't get hard and we can continue to push it in. Keaton now weighs 7 lb 10 oz. He is SO big we just can't get over it. We no longer have to add formula to breast milk for calorie increases, which is huge too. And, we can go one 5-6 hour break between feedings at night. That's so exciting to us. Now trying to figure out how to convince him at night he can go that long without eating rather than sticking with his three hour feedings at night too. This will hopefully be a huge help and allow us a tiny bit more sleep.

McKenna...what's there to say? Still has the blood in her stools so they are having us switch to the more expensive formula. We already figured that would be the case, so we weren't surprised by that news. Assuming that this new formula doesn't work we will have to go to KC for the scan.

She only gained 5 ounces this week, so is 5 lb 5 oz. Keaton is now over two pounds heavier than her. She is going to have to see a nutritionist next week to see how we can increase her weight at a faster rate.

Called Friday for blood count results but they didn't have them. Monday called to find out we needed to call the heart doctor because he for some reason had the results not our pediatrician. Of course when we call the heart doctor he is out of town until Wednesday. We were rather frustrated because if she is losing blood at a high rate they decided they would have us go to KC rather than playing around with this other formula.

We got home this afternoon from a day of doctor appointments and got the call from the doctor that McKenna's blood count has dropped so quickly that we need to do another blood count tomorrow. Our pediatrician is out of town for two weeks so we are seeing her partner during this time, and the heart doctor is still out of town until tomorrow. So, we are working with a pediatrician we don't know and just hoping she knows what we are suppose to do and at what speed.

Tomorrow we plan to get blood drawn again and expect it will be a few days again before we get results. We are hoping that she won't need a transfusion again this week, but certainly want what is best for her. Trying to figure out how we will do the KC trip with Kyle's work and hoping he will not have to take too much time off work.

Please continue praying. We need prayers for McKenna's blood to start working and building on its own. Need prayer the blood in the stools goes away. Praying she starts gaining weight as needed. Praying for direction and help on scheduling everything. Thanks everyone. Love you all and we will update you once we get the results, but please note it will probably be a few days. Thanks!

Baby Milestones

2009-06-19T18:12:00.000-07:00

McKenna grabbed her stuffed rattle today three different times in a row. She would eye it, reach out and grab it. She was able to bring it to her face one time, but seeing as how it is the size of her head that's about all she could do is bring it in one time.

She is rather fussy today. I think I have been holding her too much, but she is so small and fragile and I just want to make sure she knows that even though she is sick right now she is still loved on. Keep thinking that all the love she is getting from her mommy and daddy will help her get better. So far hasn't helped, but it is comforting to me at least to know that we are doing all we can.

Keaton hit a milestone too. Looked in bassinet and he was head butting McKenna by throwing his head side to side since he was not comfortable. Moved him to the other side of the bassinet and he was laying on left side of his body. Before I knew it he rolled over from his left side to his back (no biggie) then to his right side, THEN HIS BELLY. My baby is rolling over. I am so excited for him to make this big jump, but scared as belly sleeping is a huge cause of SIDS. Praying protection over him and I am sure he will be fine.

Feel like I blinked and Keaton grew. He is now fitting into several of his Newborn size clothes and I can no longer rub his entire back with the palm of my hand. He has really filled out and is rather broad. He is starting to look more and more like my baby pictures every day. Was really hoping that he would look like a mini Kyle, and he totally did the first several weeks of life. Will be fun to see what the babies turn out like as they continue to age.

McKenna looks a lot like her cousin Taylor did at birth. What a pleasure to see that. She is still so tiny and fragile looking, but has the most amazing and sweet eyes that just pierce through you when she looks around. She has brown hair that has a hint of red to it right now. Not sure where the red comes from. She is just perfect and I love to watch her all day long.

We are so blessed and grateful to be the parents to these twins. What an amazing gift the Lord has blessed us with.

Coming Home

2009-06-16T09:19:00.001-07:00

Well, here goes attempt two at bringing our baby girl home. She is being discharged this afternoon and we are just praying that she will be okay.

The heart drops and apnea spells...because the hospital monitor was set at a higher setting (low heart rate of 80) they are not concerned now about the spells. So, they are sending her home and their thought process is that she will continue to grow out of it with age and that she will slowly just get better and better. If she has a spell at home outside of feedings and turns color we are suppose to call the doctor before rushing her back here. They don't want her in the hospital if they can avoid it, due to all the germs and sickness.

The bloody stools are still there this morning so we are sticking with their plan to keep her on Nutramagin formula for another week. If the stools continue we will move her to the more expensive one for two weeks, then a GI scan if continue after that. We will follow up with our doctor next week to see if we are doing any better.

Blood counts miraculously went up. That is awesome and we are so excited to hear that. Thursday she will have to come back in for blood work, and then will have to get it once or twice a week until bloody stools go away. Will require blood work more often if the numbers begin to decrease too rapidly.

McKenna is slowly gaining weight, and not quite quick enough to make the doctor happy. So, we are meeting with a nutritionist before we leave to see if she should increase calorie intake or volume. It is tricky to get her to drink even an ounce and a half, so I am sure we will lean toward the calorie increase, but will just see what she says. We go next week for a weight check and will determine more at that point. She is still five pounds this morning.

We are eager to get home and play with Keaton and see daddy, but nervous as to how she will do at home. Guess we can only do so much, so we will do our part and plan on God doing the rest.

Keaton is meeting with First Steps (development program) this morning to be evaluated on ways we can help him grow mentally and physically. They will make recommendations as to whether speech (for feedings), physical or occupational therapy is needed for him and how often he needs to see the therapists. The nice thing about First Steps is they come to the house, so we don't have to get them out in the germs. And it is very similar to Parents As Teachers where they will show us what WE can do to help him along rather than always depending on them to do the work. McKenna will be evaluated in the next couple of weeks as well.

Daddy is concerned Keaton has hearing problems, so we are anxious to get his hearing tested and hoping this program can help him if he does. We are also concerned with how much his feet turn in toward his body and he doesn't have great neck or back muscles yet.

Thanks everyone for the continued prayers.

Seriously No Answers Still?

2009-06-15T15:18:00.000-07:00

If these updates had sound you would hear deep sighs and tired and worried parents trying to voice frustrations but clinging on to hope. Anxious and eager for the day when both children are home HEALTHY and we are not worrying about their day to day well-being.

Pediatrician was unsure what to do about continued blood in stools so talked to specialist in KC. The specialist still believes it to be an allergic reaction to milk protein. He is requesting we stay on this new formula for two weeks total (have already been on it five days) to see if the blood goes away. Assuming it won't we would then be put on a much more expensive formula (didn't realize that was possible) for two weeks to see if THAT clears up the bloody stools. And then, assuming that one doesn't work either they would move forward at that point with a GI scan to see if she has a fisher or polyp that is causing the bleeding. They are doing what they can to avoid the scan because she is so small and it would mean more radiation.

Because she is still losing blood several times throughout the day she will still require blood counts to make sure she is not losing too much or requiring another transfusion any time soon. She will have blood work done in the morning to see how quickly her numbers are decreasing. If they are decreasing too quickly and/or it looks like this is going to cause the need for another transfusion then they will do the scan sooner than expected. We are still not sure if we would have to do the scan in KC or be able to do it here in Springfield, but for the time being we do not have to go to KC or St Louis for hospital stay. And the KC GI Specialist actually comes to Springfield once a month to see patients, so that would be a huge help if we were able to be seen by him.

As for the Apnea spells during the night, looks like they were minimal apneas that didn't last quite twenty seconds. Doctor said the nurse should not have stimulated McKenna and should have allowed for her to hit the twenty second mark before doing anything to see if she would have come back on her own. I voiced my concern to the nurse that she is having more of these and that she is going backward on the apnea and heart drops and asked her to convey the concerns to the doctor sense he was not able to visit us here today. Hoping tomorrow he will stop by and I will not hold back on the concerns we have!!!

So for now the only real update is to continue as is. Stay on formula, no trip to KC or St Louis for at least another week or two, blood work in the morning to see how blood count is, and act like child not breathing is normal and no big deal. Guess it is already time for Mom and Dad to retake CPR training.

Thanks for the prayers everyone!

More Trouble for Our Sugar Bag

2009-06-15T05:51:00.000-07:00

It's so easy to get on here and complain or talk about all the negatives that our poor little girl is going through, so today we are going to try to start out with some positives.

McKenna weighed in at 5 pounds this morning. I wanted to cry with joy. She is officially the weight of a bag of sugar and is truly as sweet as one too. This is a huge step forward, especially since she had started losing weight when she first checked in, and since she had only gained four pounds when she was home for a week.

Yeah, that's pretty much the only good news. Nurse came in this morning and asked how McKenna was doing. My reply was that she was just sitting there stooling blood for them. He commented that it looks like she will be going to St Louis or Kansas City becaues Springfield just doesn't have the specialists needed to deal with this stuff. While the trip would be a good thing and maybe we could finally get some answers, we can't help but be negative and think that all the tests ran here have come back negative for problems, so what will a specialist find? Also, we are rather frustrated that NICU felt it okay to release her under these circumstances when we have had three pediatricians now tell us how alarming it is that she has been stooling blood for such a long time and that it was just blamed on a fisher.

Also, during the middle of the night McKenna had an Apnea spell. This is where she stops breathing for over twenty seconds. That's a long time for anyone, let alone a five pound baby. It happened while she was sleeping and the nurse ran in, observed her and started stimulating her - rubbing her back rather hard and talking to her. It was so scary to watch. The nurse told me to go get some sleep as she was doing this. ARE YOU KIDDING ME?!?! Our child is not breathing, you are breaking her back trying to get her to "come back" and you want me to sleep?

Please keep praying. We are worried sick, and if St Louis or KC is the next step then we will have to figure out what to do because there is still our little baby boy that needs one of us to take care of him, and Kyle has taken SO much time off work already that we really don't want him to take any more off, and if only one of us goes with McKenna, that means that the other parent doesn't see Keaton, and the one that doesn't go doesn't get to see McKenna. All very nerve racking!!!

Waiting for doctor to come in this morning and tell us the next step.

Another Night

2009-06-15T05:50:00.002-07:00

Sweet Little McKenna, another night in the hospital. She has had a few heart drops outside of feedings, which has not happened since the beginning of life for her. We are rather worried about those. Drops with feedings are easy to correct, although nerve racking. If she has one outside of the feedings we are not always standing right there or aware of what is going on, so we are scared about how often she will have them. Doctor says these could be false alarms. They will download monitor tomorrow to determine if they were actual alarms.

While talking to doctor this morning he said we need to let McKenna have her heart rate drops even when we are not feeding her. We are not suppose to stimulate her...just sit, watch her stop breathing and watch her turn color. Let the alarm beep several times, check out the baby and note her color, calmly check her pulse...ARE YOU KIDDING ME was my response. How in the world is a parent suppose to watch their child turn blue and just observe as they stop breathing?!?!?! His thinking is that she cannot learn to come back on her own if we don't allow her to do this. Also, they need the data. If we don't allow for her to come back on her own the monitor can't tell the doctor what is going on so he has no way of correcting it. Guess we will "try" to refrain from immediate stimulation, but I still refuse to wait until she needs CPR!

McKenna is still having blood in her stools. They suspected it was a fisher (tear in rectum) but after three weeks of bleeding decided it must be something else. She has been put on special formula to see if she has allergic reaction to milk protein which would cause bloody stools, but since the blood started again today we suspect that it is not due to milk protein.

The doctor is going to talk to a GI specialist tomorrow and possibly do an upper GI scan to see what is going on and if there is something visible as to why she is having the stool problems. For now, that is what is keeping us in the hospital.

Please pray for McKenna's brain to develop and remind her to suck, breathe, swallow. Pray she doesn't have heart drops outside of feedings either and that her heart and brain are strengthened. Pray for blood in stools to go away, body to develop, lip swelling to go away, body to stop having "preemie trimmers", and overall health, wellness and development.

I was able to run home while grandma Dana watched McKenna and give Keaton hugs, kisses and a much needed bath. He did pretty well and only fussed a little bit. His diaper rash seems a tad bit better but is still pretty red and feels like it is scabbed over. All I can say is Desitin, Diaper Doo, and A&D Diaper Cream don't work. Trying Butt Paste now and hoping that helps. We'll see.

Keaton still seems to spend most his days eating then sleeping which makes easy for caring for him. He slept today while Grandma watched him and daddy mowed the yard. He gave grandma a smile too while she was talking to him. Still not sure if it was an actual smile or just gas but either way I am sure he was just loving be held by his grammy.

Grandpa Dana got to feed Keaton this morning while daddy went for his run and he seemed to do well for him. I think the twins already have the grandparents wrapped around their fingers.

Please pray for Keaton's motor skills to develop. He gets irritated often and shows signs of overstimulation. Doesn't do well with eye contact lately or interaction. Tuesday First Steps comes out to observe him and tell us if he needs occupational therapy, physical therapy, speech therapy (for feedings). So we are excited to see what their thoughts are and to learn things we can do to help him develop.

Please pray for Keaton's overall health as well. Pray that he doesn't get sick or infections. Pray for growth and strength and continued good feedings.

Two more weeks and Nana Deb is heading out from Montana to help with her grandbabies. We can hardly wait to show off the twins and have them loved on by her. Praying McKenna is well enough and home by then.

Another 24 Hours

2009-06-15T05:50:00.001-07:00

Kimberly just called and informed me that McKenna will not be released today as we planned. She ended up losing 2 oz yesterday which for a baby that only weighs 4 lbs 13oz, that is big! Doctors are going to proceed with another transfusion as I type. This is her third and hopefully last. You always wonder if the blood they are putting into your child is free and clear of impurities, yes, I know they run special screens, but the thoughts still cross your mind. Hopefully this transfusion will give her more energy so that she can stay awake during her feedings and actually eat the amount she needs to in order to gain weight.

Problems at Home

2009-06-15T05:46:00.002-07:00

This is Kyle writing at the request of my wife who is tied up at the hospital with McKenna for the past 24 hours. It has been difficult for Kimberly to keep up with the care pages ever since McKenna has come home. Managing two children is definitely more than we had expected but we are learning the ropes and managing well with the help of family and friends. We are adjusting to life with no sleep.

It all started yesterday when we took both children to the doctor for a check up. What started out as routine ended up taking 3 hours for which we were grateful for a doctor that was willing to take all that time to answer our questions. We had several concerns for McKenna's development and why she was so far behind. At the conclusion of the appointment the doctor gave both children their vaccination shots. McKenna had another heart drop during the shots which gave us quite a scare because she turns a dusky gray and goes limp....enough to scare any new parent. When we got the kids home, Kimberly called me over to look at McKenna...she appeared to be breathing irregularly at which point the alarm on the monitor sounded that she was having a heart drop. A heart drop outside of a feeding is even scarier. So Kimberly rushed McKenna off to the hospital where she had was admitted and has been ever since. McKenna still has blood in her stools, a very low blood count (possibly needing another transfusion), some kind of growth on her lip, and of course the heart drops. She will be undergoing various xrays and tests today and tomorrow morning and hopefully that can find out what the problem is.

Keaton is still doing quite well. I have managed to take care of him by myself now for 24 hours for which I am very pleased. We are getting along well. He is eating well and seems to enjoy peeing on his father during the diaper changes which was funny at first but not anymore! Our only concerns with him currently are a pretty nasty diaper rash and his umbilical hernia appears to be getting larger.

Keation weighed in at 6 lbs 9oz at the doctor and McKenna weighed in at 4 lbs 13oz. We were expecting McKenna to have picked up more weight than that since leaving the NICU but the doctor did not seem overly concerned.

We hope that you will continue to pray with us for a complete healing and restoration for both children, especially tiny McKenna. We have so much appreciated all the comments and support from everyone out there. It is so encouraging to read your comments and your prayers give us much needed strength to get through the long days.

Finally Home

2009-06-15T05:46:00.001-07:00

So sorry everyone for the delay in updates. The past few days have been exhausting and trying to find time to get on the computer has been difficult.

Friday we got the call that they were going to send our baby girl home. We were thrilled but nervous as could be. They decided to send her home even with her low blood count, severe anemia and daily heart drops. Apparently they thought she would do better at home.

The doctors had increased her iron intake due to low iron and not producing blood still, but the iron (she receivved it orally) was causing her to choke and have heart rate drops, so they have put a stop to the iron until she sees her pediatrician and then the doctor will tell us at what point to put her back on it.

Heart rate drops - she still has several a day with feedings. The night of discharge we had to feed her before she left and she had three heart rate drops during that one feeding alone. They suspect it is still just due to immaturity. As she ages this should go away.

Her blood count is low and she is very pale, but it was not quite low enough to do a transfusion. The pediatrician will most likely retest her count at her two month check-up this Thursday to see if a transfusion is needed yet. She is 4 lb 9 oz, so we will get to see what she weighs now too.

We are so grateful for all the prayers and love and support. You are so amazing! Our children are home today because of people like you standing in prayer for us. THANK YOU a million times!!!

Please keep praying, and as I am able to find time will try to update the page. Currently getting about 45 minutes of sleep every three hours, so exhaustion has prevented updates the past few days.

Prayers for McKenna is for growth and maturity. Pray that her brain develops and she remembers to breathe while eating. Pray for increase on quantity she takes of food. She is so wonderful and it is such a blessing to have her home!

Keaton is doing well. He is getting huge and we are excited to take him to doctor Thursday to see how much he weighs. I am guessing seven pounds at least. hahaha.

Keaton is taking up to three ounces of milk every three hours now. We are hoping doctor will tell us we are okay to go longer at night between feedings but we will see.

The babies seem to enjoy each other. They haven't really done much together but lay there, but they take turns watching over each other. One will sleep while the other looks at him/her and vice versa. This morning McKenna started fussing a bit and by the time I finally got up to feed her she was asleep and resting her head on Keaton's hand. It was so cute and looked like he was comforting her. A protective big brother already. Love it.

Please keep praying for overall health and wellness for Keaton as well.

Close to Going Home

2009-06-15T05:44:00.000-07:00

McKenna is getting close to coming home. She is 4 lb 8 oz tonight. Wow, can hardly believe it. Her face is more full, her eyes more focused, twitches less and overall looks great.

McKenna is still having one or two heart drops each day with her feedings, but today she has been heart drop free. Hopefully a sign that she is on her way home.

We signed papers today for her heart monitor for when she comes home. Tomorrow she is having car seat testing which we assume she will fail. And she is having blood work tomorrow too to see if she is producing her own blood yet and what her blood count is. Her count will determine if she needs another transufion. We are hoping that if she does need another one that they are able to do it in the next few days so she will be healthy and well when she gets home. They did increase her iron vitamins to help her produce blood.

McKenna has not been eating as well lately and they have determined it is most likely due to the nipple they are using. They switched to a different one today and we are hoping that will allow her to get more milk in a faster time period and will require less work for her.

Doctor today said that she is doing well. Has less heart drops than before, isn't sick, and overall health is looking up, so she is basically ready to come home when we are confidant in feeding her with the heart drops. So we will see what doc says tomorrow, but we assume she is coming home in next couple days.

Keaton is doing awesome. He was circumcised today - poor guy. It looks so painful and he has been rather fussy all day, so I am sure he is in pain. We were hoping to get a chance to weigh him before the procedure, but we walked into the room and saw the little bed they strap him down to and all the knives and stuff and I think we were both too overwhelmed to think about weighing.

Keaton goes to the heart doctor June 25 and will see if he still needs his monitor or if he is well enough to go without it. They will also determine at that point if he is able to go into a car seat or has to stay in car bed for now.

Keaton was sweet today and peed all over the nursery wall, the changing table, his clothes, and everywhere else you can imagine. Luckily it was daddy changing him and not his mom, but if you know Kyle, you can imagine how bad he freaked out. For sure a fun story and memory to record in his baby book.

Please pray for McKenna that she begins producing her own blood, that she stays healthy and well, that she begins eating better, that she stops having heart drops, and that she adjusts well when she comes home.

For Keaton, Please pray for overall health, for pain to go away from procedure today, for increased feedings, and for adjustment having McKenna home.

Nothing New

2009-05-31T15:05:00.000-07:00

Not really any major updates. McKenna is still having a heart drop or two per day which are usually with her feedings. She is still immature and struggles with the suck/breathe/swallow concept apparently and this causes her to choke or not breathe altogether with feedings. She occasionally is drinking two ounces per feeding but for the most part hangs around an ounce and a half.

Mckenna has done well holding her body temperature, so she is still in her crib and bundled up. She has been 4 lbs 2 oz for the past three days and only gaining a couple grams per day. We are hoping today she will hit the 4 lb 3 oz mark. The nurse commented today that the main thing keeping her in the NICU is her size. Of course she can't go home with the heart drops, but she is VERY petite and the preemie clothes still seem to swallow her.

We are continuing to pray for brain development for McKenna and that it would help her learn the suck/swallow/breathe concept. We are praying for weight gain and maturity of the body. Also praying for overall health and wellness. She is such a perfect little angel in our eyes and we want her to be healthy and thriving.

Keaton is doing great. His wellness visit Thursday was wonderful. We really like the pediatrician we chose (Dr Hampton) and she said his overall health was good. He is up to 5 lb 5 oz already. We were able to ask our questions (poor doctor...there were a lot of them) and felt good by the time we left.

He still struggles to burp for us, but one of the NICU nurses told me to just sit him up and rock him a bit...no patting or rubbing and that has allowed for at least one burp per feeding it seems. He is just so sweet and seems to really only get mad when we are changing his diaper, when he needs it changed, or if he isn't fed enough.

We are trying to give Keaton plenty of tummy time when he is awake to strengthen his neck muscles. He does pretty good with turning his head the other direction while on his tummy. Well, if we put it the direction he doesn't like then he turns it the other way but we figure that's a good way to get him to do it.

We are praying still for Keaton's overall health. He gets circumcised Wednesday and even though they say he won't remember it I cringe at the thought of him going through all that pain, or thinking about how hard he will cry when going through it. So we are praying also that procedure goes well.

Also please continue praying we learn the proper way to burp the babies. Not burping them is causing spit-up and gas pains.

Your prayers and love and support sure are appreciated! We couldn't have made it through the past seven weeks without all of you, and we certainly rely on you and your prayers for the future. Thanks everyone!

Baby Girl in a Crib

2009-05-27T19:21:00.000-07:00

Mixed feelings today. McKenna is four pounds today. Woo hoo. We are so happy. She is finally double her birth rate. What a big girl, and she looks bigger too. Her face has really filled in and her body looks longer. And today they put her in a crib. This is a big step up and a step closer to her coming home. We are really excited for her to be home soon, but nervous as can be because her heart.

McKenna has had heart drops daily lately. She had one earlier today and then this evening when I was feeding her she had another. Her face turned pale, eyes lifeless and body just goes limp. It's so scary. Poor girl. We are so worried about her and scared they are going to send her home with these drops. Their rule normally is that the baby has to not have a heart drop for at least 72 hours before they send her home, but talking with the nurse tonight she said that is not always the case. If heart drops occur with feedings they sometimes send them home anyway. SCARY!

Please pray her heart is continually strengthened and her brain reminds her to breathe.

Keaton is doing good today. He has been waking up about 45 minutes before his feedings and is hungry. We are trying to keep him scheduled with his feedings every three hours like they did at NICU since it will be so difficult to do every two hours with two babies home, but not sure how much longer he will allow for that. He is sleeping better at night but still does a lot of the grunting and moaning throughout the night.

Keaton's heart monitor went off last night saying he had a high heart rate (over 250). Not sure if it was a legit alarm or not because it only went off once, but we are hoping not. We are so worried he is sick and every little thing we tend to over read. He goes to the doctor tomorrow for his first "real" appointment and we have a million questions. Anxious to meet his doctor and see how she is. Also anxious to see how much he weighs.

Thanks for all your prayers.

Struggles

2009-05-26T13:46:00.000-07:00

McKenna is still struggling to control her heart. She either has too high of a heart rate or is having heart drops. Had a heart rate drop yesterday and two again today. She is just really struggling it seems and it is so hard to sit back and watch her go through this knowing we can't do anything to fix the problem for her. We are so grateful she is a fighter and such a strong little lady. Look forward to the day where there aren't any heart drops, sat drops, high heart rates, extreme exhaustion from her feedings, etc. She is up to 3 lb 13 oz now so she is getting closer to Keaton's weight.

Keaton is struggling with his feedings. He has been spitting up lately which isn't something he did while in NICU, so I imagine it is something we are doing. He struggles to burp too. We will often go over fifteen minutes of patting and rubbing his back and still won't get even the tiniest burp out of him. We realize that can cause spitting up, so hoping to learn new way of burping. We have an occupational therapist (OT) coming over this afternoon to help us with this.

The OT will be helping us with many things to speed up Keaton and McKenna's growth and help them to be where they should be for their age. They will help with physical therapy, things to increase movement and sleep and feedings, and also with speech and therapy. And the best part is that they come to the house. We still can't really take Keaton out because he is in the car bed and someone has to be back there with him at all times.

Keaton has picked up more of a voice. He cries about thirty minutes before his feedings, cries when he is having his diaper changed and does a lot of groaning and moaning when sleeping, stretching or if he is not in a deep sleep.

McKenna has increased her feedings to nearly two ounces, which is what Keaton drinks currently. She is really trying to catch up to her brother on the weight thing I think. She is a loud eater and gulps down her food but has done well at pacing herself lately which is great since her feedings is often a time when she has heart rate drops.

Please continue to pray for the babies. Doing our best to update this daily, but seems that there aren't always updates unless it is just to say McKenna has gained weight and now weighs x amount. Will do my best to update though as changes occur. Looking forward to our baby girl coming home and having the twins back together. This Friday will mark seven weeks since their birth. Can hardly believe it.

2009-05-24T19:16:00.000-07:00

Got a call last night from NICU that McKenna had blood in her stools. They did a bunch of tests and more x-rays and so far everything has come back that there isn't anything wrong, which is awesome. Doctor thinks it is probably just a side effect from the transfusion last week. Hope she is right.

McKenna FINALLY gained some weight. She is up to 3 lb 11 oz tonight. Woo hoo. Getting closer to the 4 lb mark. She is still very immature. She isn't able to control her eyes and body much, so there is a lot of shaking that goes on with her. We are praying that with weight gain she will be able to control these movements more and that her heart rate will correct itself or slow down with weight gain.

Keaton is doing pretty well at home. We struggle to determine if he is warm enough or cold enough. We try taking his temperature at least once a day, but he hates that being done so it isn't always the most accurate. He also hates his diaper being changed. Didn't seem to be a problem until the past couple days and now he cries uncontrollably when we change him.

We took Keaton to the doctor this morning because he sounded really congested, isn't burping well and has been a bit fussy past two nights. Turns out we were right about the congestion. It's really bad. All we can do for him is saline spray (thanks Liz for the suggestion to get that stuff before we went home) and humidifier that we are suppose to leave on 24/7. Hoping that we will see improvement for him with these changes. Have been sucking out his nose all afternoon and it looks like it's a bit irritated from the sucking. We did find out though that he is now 5 lbs. We are so proud at how big he is getting.

Keaton is still immature but he is showing some great signs of growth. He is starting to make good eye contact, holds his head up at times, and responds to noise. We are excited for McKenna to get home so they can interact together.

Please continue praying for both babies, and especially for McKenna's growth and mental and physical growth. Thanks everyone. We love you all and are so grateful for the continued prayers and love.