Thursday, December 31, 2009

Fake Coughing

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.

Monday, December 21, 2009

Sleeping and Talking

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.

Wednesday, November 25, 2009

Exhausted

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.

Tuesday, November 17, 2009

Teething

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.

Saturday, November 14, 2009

Scootin' and Pushin'

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.

Wednesday, November 11, 2009

Hanging On, Kind Of

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.

Sunday, November 1, 2009

Sitting and Grunting

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.

Wednesday, October 28, 2009

McKenna

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

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.

Tuesday, October 6, 2009

Surgery Has Begun

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.

Sunday, October 4, 2009

McKenna's Surgery

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.

Saturday, September 26, 2009

Baby Girl in Hospital Again

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.

Sunday, September 20, 2009

Thankful

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.

Thursday, September 10, 2009

Rolled Over

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.

Saturday, July 18, 2009

Making Progress in Areas, But Falling in Others.

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

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

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

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

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

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

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

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

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!!!

Wednesday, June 24, 2009

Follow-Up

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!!!

Tuesday, June 23, 2009

Doctor Appointment

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!

Friday, June 19, 2009

Baby Milestones











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.

Tuesday, June 16, 2009

Coming Home

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.

Monday, June 15, 2009

Seriously No Answers Still?

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

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

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

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

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

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

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.

Sunday, May 31, 2009

Nothing New

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!

Wednesday, May 27, 2009

Baby Girl in a Crib

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.

Tuesday, May 26, 2009

Struggles

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.

Sunday, May 24, 2009

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.

Friday, May 22, 2009

Poor McKenna

Poor McKenna. She is still having problems with her heart. Heart drops and sat drops yesterday and today she is having more sat drops. We are so sad for her and praying that it will correct itself soon!

McKenna is all by herself now at the hospital and that is really hard for daddy and mommy. We are taking turns visiting her while the other one watches Keaton, but you can't help but feel sad for her being there by herself and knowing that Keaton is at home and we can hold him any time. Praying that she has God's love and comfort surrounding her and that she can't feel the loneliness.

She had her feeding tube taken out this afternoon. Hopefully they won't have to put it back in her again. She isn't gaining weight this week which is nerve racking but hopefully tonight we will see a jump. She should have a weight gain from the blood transfusion if nothing else.

As for Keaton, he has his mornings and nights mixed up. He is exhausted all day, sleeps well and quietly and hardly can keep his eyes open for eating. At night he is wide awake, eyes open and looking around, and grunts non stop. We are trying to keep him up after his day feedings to see if then he will be a little more sleepy at night. So far we can't get him to stay awake THROUGH the feeding so to get him to stay awake after? Seems impossible.

We are glad to have our son home though. It's so nice to be able to hold him whenever we want, however long we want, and to finally be his parents.

Thursday, May 21, 2009

Our Son Is Home

What a blessing to have our son home today, and a very scary thought too!!!

Last night we roomed in at the hospital. We woke up every three hours, fed him, changed his diaper, burped him and laid him back in his crib. It was a test to see how he does without the nurses, and how we do without them. It was one of the longest nights we have ever experienced. Keaton didn't sleep well and kept grunting and moaning and making noises and we were scared that he was choking or spitting up and not able to turn his head to the side, or something was wrong. In addition to that we couldn't stop looking at the monitor for his heart the entire night. And it went off three times saying his heart rate was over 250 beats per minute and once saying it was under 60 beats. So we were a wreck.

Took Keaton back to NICU this morning for his discharge review. Found out the four alarms were false so that was comforting. And they think he probably was struggling to sleep because it was dark and quiet and he is use to a lot of noise with a lot of lights. So tonight we will try his sound machine and see if the white noise helps, and will use night lights and see if that is enough to make him feel more comfortable and at ease.

Thank you everyone for your prayers for this day. We are so blessed to have Keaton home and doing well and praying that McKenna can come home soon.

Wednesday, May 20, 2009

Successful Transfusion

What a difference the blood transfusion has already made for McKenna! She was wide awake this morning, took her whole feeding and has her spunk back. We are thrilled to have our baby girl feeling a bit better. If she keeps up with this energy she will have her feeding tube taken back out before we know it. Doctor's predict she won't be home until 40-42 week gestation which means 4-6 more weeks for her in the hospital. Sad she will be away from Keaton so long and that Kyle and I will take turns seeing her, but glad that she is in good hands and the nurses will take good care of her.

Keaton is having his car seat test right now. To pass it he has to sit in a car seat without any sat or heart drops for at least one hour. If he doesn't pass the test he will be required to ride in a car bed until pediatrician says he is okay to ride in the seat.

Finally got the nursery cleaned up about thirty minutes ago. The bassinet is set up, diapers and wipes stocked (thanks girls for getting all those!!!), crib put together and milk supply overflowing in freezers (thanks grandma and grandpa Dana for the storage space). So, we are as ready as we will ever be and getting excited to bring our son home tomorrow. Until then though, we have a night with him in the hospital and an eye and ear test for Keaton today as well.

Thanks everyone for the prayers. Our tinys are having a good day.

Tuesday, May 19, 2009

Keaton's Coming Home - McKenna's Getting Another Transfusion

What a crazy and wild day this has been! We had been told Keaton would be going home this week most likely but they hadn't told us a day yet. And no matter how many times we try to get an answer we are left guessing, until this afternoon.

We were trained with CPR, watched the required videos and then had the home apnea monitor training (his heart monitor). So it was a full and busy day. And of course right before the apnea training the nurses drop on us that we are suppose to do "Room In" tonight and take Keaton home tomorrow. Just like that...no notice or warning or 24 hour plan ahead. Luckily we convinced them to let us do it tomorrow and if all goes well, Keaton will be coming home Thursday. Room In is when you stay at the hospital for the night with the baby and it allows parents to see how they do with the baby and the baby to see how he/she does outside the NICU. A bit scary since Keaton has been taken care of by nurses and professionals for the past six weeks and now we are finally allowed to take him home.

Poor Ms McKenna has had a rough couple days and they just keep getting harder on her. Lately she has hardly opened her eyes at all. She is very lethargic and exhausted after only a few minutes into her feedings. She is usually feisty and lately she hardly makes a peep. So, tonight they decided after four heart drops, dozens of sat (oxygen) drops and several feedings where she couldn't even take in the minimum amount that it is time for her to get her feeding tube back in. McKenna has done great and kept it out for several days but with the lack of eating she will lose weight quickly if they don't put it back in. And in addition to the tube, they are putting in an IV (which her body doesn't seem to hold those well) and giving her another transfusion tonight. Hopefully this transfusion will help her gain strength and energy to eat and digest her food, will decrease number of heart/sat drops, and give her overall wellness. We are worried about our baby girl and just praying that God would bless us with a miracle and allow this to be the thing that pushes her to improve.

Please pray for Keaton that he doesn't have any more heart drops, continues to eat well and digest his food, keeps gaining weight (is up to 4 lb 9 oz) and does well at home. We are excited he will finally be here, but again, a little overwhelmed and nervous as we are first time parents.

Please pray for McKenna that the doctor's get the IV in on the first attempt, that the transfusion goes well, that the food tube doesn't irritate her and she handles it okay, that she gains weight quickly, has a decrease or eliminates the heart/sat drops altogether, and for overall health and wellness.

We appreciate the prayers! Keep them flowing.

Monday, May 18, 2009

Pretty Much the Same

There really haven't been any updates in the past two days. McKenna's tests all came back negative. They are keeping her off the meds for now, although she had a heart drop today and has been having more oxygen drops, so we won't be surprised if they put her back on it in a few days. Her heart rate remains high when awake or active.

McKenna's blood count is back down to the number it was during her last blood transfusion so we expect she will get another one soon. They are waiting to see if it goes back up on its own due to the iron vitamins they are giving her.

She weighed in tonight at 3 lb 7 oz and 16" long. Such a big girl. She is finally starting to fill out and looks adorable. She has piercing blue eyes that will steal anyone's heart. And she has been doing well with her feedings taking anywhere from 25 to 35 ml every three hours.

Keaton weighed 4 lb 8 oz tonight. He has been gaining weight each night, even if it is just grams, it is still a weight gain so we are happy about that. He is taking 35 to 50 ml every three hours and usually wakes up before his next feeding and is fishing around for a bottle. He chews on his hands and his blanket trying to get milk but it doesn't seem to provide it for him.

Tomorrow we are being trained on the home apnea monitor that Keaton will be sent home on. We are also doing the Infant CPR class tomorrow. Will be a busy day. We still anticipate him coming home this week though they haven't told us which day yet. We remain very anxious and nervous for this to happen. Seems like there is still so much we need to do before he gets here. We ordered the bassinets finally and they should be here tomorrow. The nursery still needs a few more things done to it before it's ready, but for the most part it is set up. Keaton's clothes are washed, we have diapers and wipes and all the bath supplies. I know we are forgetting something but I suppose we won't know what it is until we need it. Hahaha.

Thanks everyone for the prayers and continuing to check the updates. What a blessing to have prayer warriors. Love you all!

Sunday, May 17, 2009

New Pics






A few new pics of the babies

Saturday, May 16, 2009

Blue Babies

We are ready for the day to be over. It has had quite the fill of events.

Started with McKenna's heart being so high that they did all the tests. So far all the tests have come back negative. Still waiting for the EKG results, but assuming that comes back negative then we are at a loss as to why it is so high. Is possible that is just McKenna being McKenna.

Then this morning while feeding McKenna she choked and it was actually so bad that she turned blue - literally. Luckily the nurse was right there and ran over, patted her back, turned her to the side and got her breathing again.

Tonight McKenna was doing a little better. She ate her full bottle, is wearing her first sleeper and seems to enjoy being held. Yes, we FINALLY got to her again. Her heart rate was still high, but once she was held and eating it slowed back down to normal. I think it was the Tina Turner song I was singing her that kept her calm. Hahaha.

Keaton was doing well this morning. Doctor told us that as long as he didn't act up or cause problems we would be taking him home next week. I think he heard her and so tonight he decided to stir up problems.

While feeding Keaton he choked tonight, and just like McKenna, he turned blue. Only he was REALLLLLY blue. And we were all alone in his little isolation room so we were yelling out to the nurse to come help but by the time she finally got there she was blue and her heart rate was down to 62. Because of this, we didn't feed him his full feeding. He was 3 ml short of eating his minimum.

Because of the heart rate drop we are back to at least three more days with him in NICU. We are completely fine with that and at this point a bit nervous to take him home since he seems to be choking a lot on his feedings lately. We want to make sure that he is safe and secure and it is just so convenient to have the nurses and monitors there. Plus they say McKenna will be in NICU at least 4 - 6 more weeks, so the thought of her being there by herself for that long, alone without Keaton or her parents able to visit her whenever we want.

Please keep the babies in your prayers. We are going to watch the nurses feed tomorrow and have them watch us to see what we are doing wrong and why they are choking so much lately. And we are a bit overwhelmed with McKenna's heart rate and that the doctors don't have an answer or a way to fix it.

McKenna and Her Heart

Please pray for McKenna today. Her heart rate is so high they are doing more tests today. They have taken her off the meds that tell her brain to remember to breathe. They took her off those last week to see if that would decrease her heart rate. It didn't and she was having so many apnea spells, or heart rate drops that they put her back on it. So they will take her off it again for a few days to see how that effects her.

They are also doing an EKG, ultra sound, blood count tests, chest and gut x-ray. This will be to see if she has an infection and to make sure her heart murmur is okay, and that she isn't having problems, and to see if they can find anything. They did a few of these tests last week and didn't find answers, so they are retesting again today to see if they can figure it out. It is possible that it is just how she is. We are praying they can fix it either way, because a heart rate that gets up to 240 is not normal or healthy.

They are also taking McKenna's isolate temperature down and putting her in clothes to see if that helps. They are thinking maybe she is just warm blooded and her body temp a little cooler will help.

Please pray for answers, direction and wisdom for the doctors and that they can help our baby girl. We are a nervous wreck today and anxiously awaiting results. Hopefully we will get some answers tonight, but most likely will take a couple days.

Thanks everyone!!! Will let you know what we find out.