In NICU they continually reminded us with preemies they take one step forward and two steps back. It was a depressing thought, but we found it to be true and unfortunately it seems to continue to be the saying for McKenna.
We have been so blessed and grateful to post positive things and the wonderful improvements we have been seeing, but in the back of our minds we remains the long journey she still has, mainly with the feeding.
This week we were finally able to return to Myer Center for feeding therapy. McKenna has not had it for three weeks (therapist gone two weeks and then we were sick last week). To make a long story short the therapist was in agreement with Kyle and me that McKenna has not made improvement on the feeding side of things for a couple months. Well, she has made MINIMAL improvement is how she worded it. If McKenna was not eating solely due to an oral aversion the therapist things McKenna would be making more progress than she is currently making.
So what does that mean? Honestly we aren't quite sure. We are going to decrease feeding therapy at the Myer Center to every other week since weekly isn't benefiting her. The therapist is recommending McKenna go to a feeding clinic (closest one is in St Louis) which we are waiting to see if this will be covered by insurance and how long we would be there (looks like 4-6 weeks) and what all it entails. We still have not found a cure for the retching which could be a big cause to her not eating, and KC has failed as far as follow-up and direction.
We are a bit discouraged, overwhelmed and down that our baby girl is still having to face this battle. August last year she was still eating out of a bottle, was pushing herself up when on her belly and was happy as a clam. Fast forward to August 2010 and she is just now crawling (Though we are so grateful and proud of her for that) doesn't talk or babble and still appears to be in a ton of pain with the retching spells. God? I know you hear us...please heal our baby!!!
Wednesday, August 18, 2010
Oh Poop
My kids loveeee bath time. Keaton always goes to the bathroom door and says, "Baf, baf" just begging and pleading to get in the water. It's adorable, but bathing two babies is a lot of work and we don't leave the house much so I still only give them baths everyother day.
Well tonight Daddy is out of town, we had spent time out of the house and at a restaurant which is obviously full of germs, Keaton had food in his hair and we were bored. So when Keaton asked for a "baf" I agreed. Little did I know that he would give gratitude for the bath by pooping on the floor once he got out. Not only was it on the floor, but on the carpet. I just need to be grateful it didn't get smeared INTO the carpet, right?
Then of course I got the babies changed, all ready for bed and put them in familyroom to settle down and McKenna pooped her pants and when cleaning her I managed to get it all up her leg. I think they are dirtier now than they were before their baths.
And yes, I DID just write an entire entry about stools. You're welcome readers.
Well tonight Daddy is out of town, we had spent time out of the house and at a restaurant which is obviously full of germs, Keaton had food in his hair and we were bored. So when Keaton asked for a "baf" I agreed. Little did I know that he would give gratitude for the bath by pooping on the floor once he got out. Not only was it on the floor, but on the carpet. I just need to be grateful it didn't get smeared INTO the carpet, right?
Then of course I got the babies changed, all ready for bed and put them in familyroom to settle down and McKenna pooped her pants and when cleaning her I managed to get it all up her leg. I think they are dirtier now than they were before their baths.
And yes, I DID just write an entire entry about stools. You're welcome readers.
Thursday, August 12, 2010
Not Any Stronger
Feel like as we face battles we grow and are strengthened but honestly I am at the breaking point and can't seem to pull myself back up. I want to cry everytime I see my daughter retch. The painful look on her face, watching her tighten her entire body and gasp for breaths between each gag, the feeling of her stomach tightening as the fights for each episode to end. And the entire time we can do nothing but sit and watch, oserve, talk her through it, act like it's not happening and pray that she will never have another.
The feeding is exhausting. She gets stuck in one place and can't push through and I don't know how to help her. Therapy does the same thing and has been doing the same thing basically since October which discourages me from wanting to take her anymore. But at the same time if I were to quit taking her I feel like that is me giving up. I want McKenna to know when she is older that I did everything possible to help her not have pain or discomfort and to help her have a normal life.
My 24 hours of being down as stretched out to be over a week. I am ready for you to heal her now, God. Please.
The feeding is exhausting. She gets stuck in one place and can't push through and I don't know how to help her. Therapy does the same thing and has been doing the same thing basically since October which discourages me from wanting to take her anymore. But at the same time if I were to quit taking her I feel like that is me giving up. I want McKenna to know when she is older that I did everything possible to help her not have pain or discomfort and to help her have a normal life.
My 24 hours of being down as stretched out to be over a week. I am ready for you to heal her now, God. Please.
Thursday, August 5, 2010
Down and Frustrated
When my mom is down or discouraged she always says, "I am going to allow myself 24 hours to feel this way, then I am done. I am not going to stay here long." That's the attitude I need to apply to my life right now. Feeling really discouraged and down about McKenna's lack of progress with the feedings. She started opening her mouth, which is a huge step forward as everyone reminds me, but that was several months ago. She still spits out any food that goes in her mouth and swallows less food with an open mouth then when her mouth was closed. I feel frustrated and tired of trying to feed her everyday and I know tomorrow I will once again sit her down three different times, get out several different foods for her to taste and she will fight me on opening her mouth, or will open her mouth and spit out all the food. Doing my best to be thankful for the progress she has made. Trying to focus on the thought that when she moves forward in one area (crawling and sitting up) she will go back in another (eating) but that doesn't really encourage me. And she really hasn't gone backward, she just is maintaining where she has been the past few months.
So, something positive, today she tasted chocolate milk and didn't gag or retch on it. She took over 30 sips of it and although they were very small sips, they were still sips and I am grateful for that.
McKenna doesn't open her mouth wide, but she is at least cracking it open and although that has been happening several months now it is still a step in the right direction and something that she needs to do inorder to get to the next step - swallowing food.
McKenna isn't swallowing the food, but she is trying new flavors - chicken, green beans, broccoli...which is a great step too because she shouldn't be stuck on apple/blueberry mixture forever.
So there are positives, and she is truly doing her best and I know that. I just need to allow myself to be down for 24 hours and cry and vent and then move forward knowing tomorrow could just be the day the Lord choses to heal her.
So, something positive, today she tasted chocolate milk and didn't gag or retch on it. She took over 30 sips of it and although they were very small sips, they were still sips and I am grateful for that.
McKenna doesn't open her mouth wide, but she is at least cracking it open and although that has been happening several months now it is still a step in the right direction and something that she needs to do inorder to get to the next step - swallowing food.
McKenna isn't swallowing the food, but she is trying new flavors - chicken, green beans, broccoli...which is a great step too because she shouldn't be stuck on apple/blueberry mixture forever.
So there are positives, and she is truly doing her best and I know that. I just need to allow myself to be down for 24 hours and cry and vent and then move forward knowing tomorrow could just be the day the Lord choses to heal her.
Saturday, July 24, 2010
Our Blessings
Lately God has really reminded me of the amazing blessing we received when our fertility treatments worked. Several friends (three now) have gone through the process once, twice or sometimes even three times and have come back with negative results and it breaks my heart. I can relate to the desire to be a mom, to the desire to carry a baby and feel it kick and move and watch it grow as my belly expands. I can relate to wanting the stretch marks, back aches, vommitting throughout the night, labor pains, weird cravings and everything else that goes with pregnancy. I can relate to the desire to be a mom and hearing the words that you most likely won't be able to have kids and the pain and stress and frustrating and heartache that comes with infertility. But, I can't relate to paying thousands of dollars and coming back with negative test results, or the pain of knowing that fertiility treatments won't work. All I can do is cry for these friends and pray for their miracle to come, whether through their own conception, other fertility treatments or adoption. My heart goes out to these couples and at the same time reminds me of what miracles we have been blessed with!
Monday, July 19, 2010
Just Like That
Can't help but laugh when I think about the blessing God gave us yesterday. Was completely unexpected and left me laughing and crying and shouting for you. McKenna learned last week to sit up from the laying position. This is a huge step forward as most kids are doing this around six to eight months. Then last week at therapy, Jean said we were going to start working on rolling to get to things, and crawling although she anticipated it would be a while before McKenna was able to crawl.
So yesterday afternoon Kyle went to take a nap and I was sitting on the floor playing with the kids. Keaton started throwing our DVDs everywhere and one was out of McKenna's reach. She leaned forward to get it. Couldn't reach it still, so she leaned forward more and then started pulling her butt forward, or scooting it, while pulling her body with her arms.
Immediately I started screaming, "She's crawling, Kyle, She's crawling." Kyle ran out and just as he reached the living room McKenna got up on her knees, with her butt still really close to the ground and started moving each knee one at a time forward - probably only an inch at a time, but it was crawling. Yes, yesterday my daughter crawled for the first time. And she did it a couple other times later throughout the night. One of the times I even managed to get on video to send to grandparents.
So after fifteen months my daughter is finally attempting to crawl. Can't believe that just last week she learned to sit, this week is learning to crawl and then next wouldn't be surprised if she started walking. Things are starting to click for her and come together finally. She is watching Keaton continually move around and it seems like she finally wants to move around herself.
Then, in addition to an evening of crawling, McKenna took bites/tastes of chicken with chicken gravy baby food. This one I am completely shocked at because she really doesn't eat anything but the blueberries/apple mixture. But the speech therapist said we need to start introducing other tastes and get her eating other things. So this week we have tried sweet potatoes (She will do occasional bites of them if they are not warm but she really doesn't like them), chocolate yogurt, blueberry yogurt and pears. And she licks mommy and daddy's ice creams. Will try the chicken mix again today and then hopefully tomorrow can introduce a green vegetable.
I think it's important to note when I say she is eating these other foods she is not really "Eating" them. She will open her mouth, allow the food in and then spit most of it out. BUT at least she is opening her mouth and I just keep think that eventually we will find a food that she likes so much she doesn't spit it out.
Still praying for her to start eating. We want that Mic-Key button gone! Unlikely, but praying that we can have a miracle and it will be gone by December when we go home to MT for the holidays, but hey, miracles DO happen. Also praying the retching stops. She is averaging 4-5 a day. Her numbers have gone back up due to the increase in volume during each feed, and each feed takes an hour, but she only has one night feed, which was our goal, but now we just have to pray for her to learn to tolerate the food enough to allow her to not retch.
So yesterday afternoon Kyle went to take a nap and I was sitting on the floor playing with the kids. Keaton started throwing our DVDs everywhere and one was out of McKenna's reach. She leaned forward to get it. Couldn't reach it still, so she leaned forward more and then started pulling her butt forward, or scooting it, while pulling her body with her arms.
Immediately I started screaming, "She's crawling, Kyle, She's crawling." Kyle ran out and just as he reached the living room McKenna got up on her knees, with her butt still really close to the ground and started moving each knee one at a time forward - probably only an inch at a time, but it was crawling. Yes, yesterday my daughter crawled for the first time. And she did it a couple other times later throughout the night. One of the times I even managed to get on video to send to grandparents.
So after fifteen months my daughter is finally attempting to crawl. Can't believe that just last week she learned to sit, this week is learning to crawl and then next wouldn't be surprised if she started walking. Things are starting to click for her and come together finally. She is watching Keaton continually move around and it seems like she finally wants to move around herself.
Then, in addition to an evening of crawling, McKenna took bites/tastes of chicken with chicken gravy baby food. This one I am completely shocked at because she really doesn't eat anything but the blueberries/apple mixture. But the speech therapist said we need to start introducing other tastes and get her eating other things. So this week we have tried sweet potatoes (She will do occasional bites of them if they are not warm but she really doesn't like them), chocolate yogurt, blueberry yogurt and pears. And she licks mommy and daddy's ice creams. Will try the chicken mix again today and then hopefully tomorrow can introduce a green vegetable.
I think it's important to note when I say she is eating these other foods she is not really "Eating" them. She will open her mouth, allow the food in and then spit most of it out. BUT at least she is opening her mouth and I just keep think that eventually we will find a food that she likes so much she doesn't spit it out.
Still praying for her to start eating. We want that Mic-Key button gone! Unlikely, but praying that we can have a miracle and it will be gone by December when we go home to MT for the holidays, but hey, miracles DO happen. Also praying the retching stops. She is averaging 4-5 a day. Her numbers have gone back up due to the increase in volume during each feed, and each feed takes an hour, but she only has one night feed, which was our goal, but now we just have to pray for her to learn to tolerate the food enough to allow her to not retch.
Friday, July 16, 2010
Nice
OH my goodness, how adorable is my son? Not sure if I included the word "Nice" in the list of words that he says, however it seems to be one of his favorites.
McKenna's favorite thing to do is "pet" Keaton. She rubs his head, taps his shoulders, touches his face. She is very gentle with him (other than the times she does that to lead into pulling back on his collar to choke him - no joke). So when she is doing these sweet gestures I say, "Yes, nice McKenna. McKenna be nice," to help reminder her that choking is not the necessary next step.
Well Keaton has picked up on it. So he now goes around gently slapping McKenna in the face or on the arm and saying, "nice, nice." It's hard not to laugh and to decide whether desciplining is in order. Can't tell if he is trying to be nice or is being mean and thinking he can cover it up with the word.
So yesterday, I decided to face my fears head on while an itsy bitsy spider dangled over Keaton's highchair that he was sitting on. Yes, i killed the spider...with my barehand. I slapped it against the wall. If I didn't do it right then I feared it getting away or landing on Keaton. And right as I did it Keaton yelled out "Nice!" whether he was meaning nice as in nice job or nice as in be nice mommy, it was hilarious and made me forget that I had actually just killed a nasty eight legged insect.
Then last night Keaton kept getting into the cabinet under the kitchen sink and I couldn't find the childproof tool he had hidden so I told him if he opened it one more time (he takes out the carpet cleaners and wants to play with the bottles) I was going to slap his hand. Of course, being a baby Keaton went right back to the cabinet and opened it so I followed through with my threat and hit his hand. "NICE...NICE...NICE" Keaton started to say so stearnly. Yes, this time I knew he was meaing for me to BE nice! He is so cute.
Few other words he is obssesed with are up, off and mess. He is continually wanting to be picked up (which I absolutely love), wanting to shut the lights off, close the door "off" (yes off instead of shut), or take the rings off the stacker". And Mess - he points at his tray during meals and says mess over and over, and does the same thing when looking at McKenna's tray, or when he comes in livingroom and sees his toys all over. Guess mommy needs to cut back on saying that term. Don't want him becoming OCD or thinking messes are a bad thing.
McKenna's favorite thing to do is "pet" Keaton. She rubs his head, taps his shoulders, touches his face. She is very gentle with him (other than the times she does that to lead into pulling back on his collar to choke him - no joke). So when she is doing these sweet gestures I say, "Yes, nice McKenna. McKenna be nice," to help reminder her that choking is not the necessary next step.
Well Keaton has picked up on it. So he now goes around gently slapping McKenna in the face or on the arm and saying, "nice, nice." It's hard not to laugh and to decide whether desciplining is in order. Can't tell if he is trying to be nice or is being mean and thinking he can cover it up with the word.
So yesterday, I decided to face my fears head on while an itsy bitsy spider dangled over Keaton's highchair that he was sitting on. Yes, i killed the spider...with my barehand. I slapped it against the wall. If I didn't do it right then I feared it getting away or landing on Keaton. And right as I did it Keaton yelled out "Nice!" whether he was meaning nice as in nice job or nice as in be nice mommy, it was hilarious and made me forget that I had actually just killed a nasty eight legged insect.
Then last night Keaton kept getting into the cabinet under the kitchen sink and I couldn't find the childproof tool he had hidden so I told him if he opened it one more time (he takes out the carpet cleaners and wants to play with the bottles) I was going to slap his hand. Of course, being a baby Keaton went right back to the cabinet and opened it so I followed through with my threat and hit his hand. "NICE...NICE...NICE" Keaton started to say so stearnly. Yes, this time I knew he was meaing for me to BE nice! He is so cute.
Few other words he is obssesed with are up, off and mess. He is continually wanting to be picked up (which I absolutely love), wanting to shut the lights off, close the door "off" (yes off instead of shut), or take the rings off the stacker". And Mess - he points at his tray during meals and says mess over and over, and does the same thing when looking at McKenna's tray, or when he comes in livingroom and sees his toys all over. Guess mommy needs to cut back on saying that term. Don't want him becoming OCD or thinking messes are a bad thing.
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