Over 5lbs!

Carter is now bottle feeding regularly on Neocate and doing well – his stomach continues to stay small. He is propped up quite a bit right now so that he doesn’t reflux, which has been causing him a little trouble and leaving him congested. At the moment, this only has caused his breathing rate to increase, and the doctors do not seem overly concerned because he has maintained his sats. At the moment, he weighs 5lbs 3oz, the largest to date!

Usually, Steve visits carter right after school and Liz goes in the evenings after dinner – but we are waiting anxiously for Carter to come home so we can be together as a family in one place for the first time ever! Claire seems increasingly aware of her new little brother – especially when we look at pictures on Facebook! For now we are just trying to be patient and counting down the days until our little guy comes home. 

Negative!

So incredibly happy to write that Carter is doing great! First news, Carter tested negative for Hirschprung’s Disease, thank the Lord! The doctor thinks that Carter has allergies, more specifically a milk protein allergy. Carter is now on Neocate, a hypoallergenic formula. His belly is between 26 and 28 cm now! He had a few enemas and a bowel irrigation and things are better now. The barium contrast study did show narrowing of the bowels but they can’t explain why. So, looks like we are going to be having feeding/BM issues for awhile!

The doctor even said, “Wouldn’t it be nice if he came home before his due date??” I wanted to scream and jump up and down all at the same time!

Oh, and did I mention Carter is back in his crib now and completely off of oxygen?? No cannula and satting at 100!!! After a ‘hard on the heart’ kind of week, we are feeling so blessed!

Thank you for your prayers! : )

Prayers for Carter

Just want to give a quick update on Carter today. As you’ve probably read, Carter’s stomach (more specifically intestines) have always been a problem for him. Doctors have tried a number of things to try and relieve some of his discomfort while we wait to see if this passes. The most recent attempt was for me to eat dairy free to see if Carter had a milk protein allergy. His stomach size decreased by 4cm within 12 hours of this change. We continued to feed him dairy free milk but as time went on, his stomach continued to increase. Monday morning his stomach was measuring 35 cm at his first assessment, the most it ever has. He was also having trouble breathing and keeping his blood saturation levels where they needed to be. Doctors decided that it was time we get to the bottom of the stomach issue.

Carter was moved from the intermediate nursery back to his first room in the NICU. He was put back on the CPAP for breathing help, they stopped his feedings and are feeding him TPN (the vitamins/minerals), he is receiving 3 antibiotics, and is having some tests done today. This morning he had a barium contrast study done to see how things are moving through his bowels. We know there is some bowel movement because he is stooling and it can be heard when the nurses listen to his bowels. After the results from the contrast study he will probably have a biopsy done to check if Carter has a disease called Hirschsprung’s Disease. This is a genetic disease, totally unrelated to him being premature, and means the nerve endings in the intestines are not working. What we are told is that this means he can’t pass bowels completely on his own. If he does have this disease he will need surgery and the technique they use will be based on the severity of the disease.

This afternoon Steve is meeting with the doctors to go over the results of the contrast study. We should know more within the next 48 hours. Please pray for Carter as he has a, what we hope, minor set back to his homecoming!!! : )

34 weeks 6 days

We are pleased to write that Carter is doing great still! Here are a few quick updates:

1. My dairy free diet is continuing to keep Carter’s stomach down in size. It still remains over an inch smaller than it was before I went dairy free. Yay!!

2. They have been trying to wean Carter completely off his oxygen but he is holding onto it like a security blanket! A few times he’s had the oxygen off for long periods of time (when he wears the cannula around his neck or sucks on it like a pacifier) and done just fine. Other times they take him off and he starts desatting right away. Most of the time babies are off oxygen by 34 weeks (which would have been last Monday), or so we are told. If he continues to need oxygen after 36 weeks he is considered to have chronic lung disease: http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/respire/cld.html

He currently receives 100% oxygen (from the wall – but only about 30% reaches him) at .15L. You can barely feel the oxygen blowing out on your finger it is such a tiny bit. They have talked about him possibly needing a little oxygen when he comes home but we are optimistic he can still be weaned off it in the next few weeks.   : )

3. Carter is sucking down bottles like a champ!! Today Steve fed him his entire feeding by bottle. YAY!! He’s doing just fine and remembering to suck, swallow, and breath! He is being bottle fed twice a day and the other feedings are still by tube.

4. As we said before, Carter had a little bit of liver damage from the prolonged use of TPN (nutritional supplement). The signs from that seem to be going away. He’s had normal baby stools, finally!!, and his skin color looks much better. He’ll have labs drawn again on Monday to recheck those levels to make sure the liver is healing.

5. Speech therapy and physical therapy visit Carter once a week to check in on him. Both have said he is doing great! Physical therapy still wants him laying flat on his back to help with his head shape though.

6. Carter now weighs 3 pounds 13 ounces and will be leaving his little isolette and moving into a crib in the next two weeks!

6. Just a side note, we’ve started to receive hospital bills from Carter’s stay at Hotel Edward. So far we’ve only received bills from the neonatologist (no lab, xray, tests, respiratory, therapy bills just yet), and each day costs $888 (He’s been there 73 days so far!). Luckily, thanks to my insurance it will hopefully all be covered!! I had switched over from PPO to HMO 1 month before I was put on bed rest. Had I stayed on PPO we would be paying 20%. EEK!! Thankful for great insurance!!

Thank you again for the continued prayers, meals, and support you have given us. We are incredibly busy with a 1 year old, working full time, Steve coaching cross country (that just ended on Thursday), and nights spent at the NICU — we couldn’t do it without all of you, so thank you!!

 

33 Weeks, 60 days in the NICU

I think we finally have some answers! (Let’s hope!)

Carter has had a lot of trouble feeding from the very start. There were many times where the nurses had to stop his feeding altogether because he wasn’t doing well. In fact, it wasn’t until a week or two ago that Carter reached the maximum feeding for his weight and gestational age; he will be 9 weeks on Wednesday. This last Wednesday the doctor approached me and said Carter may have an allergy to milk protein. So..what does this mean?

This means that I have to eat dairy free to see if Carter’s tummy decreases in size. To give you an idea of how big it is, Carter is almost 15 inches long and his tummy has been measuring about 12 inches (30 cm) around. The doctor said that we would see a decrease in his stomach size if I went dairy free and he was truly allergic. What this means for me is I basically can only eat fruits, veggies, and meats. I never realized that dairy is in just about EVERYTHING! Who knew they used milk protein in almost everything we eat?! So anyway, I have been dairy free since Thursday and after 12 hours of Carter feeding on dairy free milk – his stomach decreased by 2.5 cm!!

They are also weaning Carter off of his oxygen. He is now at 2L (had been at 5L fore-v-e-r) and hovering right around room air, 21%. They will decrease the liters by .5 every other day. Soon he won’t need the nasal cannula he currently has and will switch to a different type that’s hooked to the wall. I believe that it’s just a constant flow of oxygen, but I’m not exactly sure.

He is still weighing about 3 pounds 2 ounces. They are fortifying his milk due to low calcium and potassium levels in his blood. Due to the diuretics he also had low sodium and ?something else?, can’t think of the name now, so he is receiving some electrolyte mixture to help with that. Carter is also maintaining his temperature and his isolette temperature is almost as low as it can go. Once he puts a little more weight on then he will be in a crib instead of the isolette!!

Other than that Carter seems to be doing well at 60 days old, 33 weeks gestation. Thank you for your continued prayers and support!! We’re feeling better now that it seems like we have some answers about his stomach issues. Please continue to pray that we have found the answer!! Thank you! : )

32 Weeks!

Carter is now 32 weeks, or 55 days old! With that comes new tests for new milestones. He had his eyes dilated for his first eye exam to check for retinal detachment. So far the eye doc just says his eyes are immature (no surprise there) and no signs of retinal detachment yet. Today was also Carter’s first day of physical therapy. The physical therapist comes weekly to check and make sure Carter continues to meet physical milestones. She said he is ‘symmetrical’ and moving arms and legs together. We are going to work on making him grab our finger and keeping his hands by his mouth. Other than that she says he looks good!

Carter is completely off the TPN (supplemental nutrients he was receiving because he wasn’t reaching his maximum feedings). He is on 8.5 mL of breastmilk every 3 hours, almost 8 ounces a day. Wahoo! Carter’s labs show some liver damage from having the TPN for too long, but luckily the liver is pretty resilient and they said it usually improves on its own.

His belly is still HUGE. It has usually measured around 25 cm around and today it measured 28.5 cm. The GI doc came to check him out because he has a history of issues with his bowels and tummy and his stomach is still inflated. The doctor was not alarmed when he came to check him out and said that because of his history of an inflated tummy, he might just be a baby that is going to have an inflated tummy. I’m not sure they quite know what is causing it other than just immature bowels. He is still being watched to make sure he doesn’t get NEC.

Other than those updates Carter is still trucking along! He is weighing in at 2 lbs 15 oz and about 15 inches long still.

Here are some pictures of Claire and Carter from Halloween.

You can really see how tiny Carter is when he’s next to a debit card!

…and there she goes!

Happy Halloween everyone! My pumpkin was filled with sugar water this year!

Hmm…now how can I rip the oxygen out??

She would only cooperate for pictures if I let her run around and chew on the suction thing!

First Halloween!

How funny that it’s both of our kids’ first Halloween today! HA! Claire was the cutest little elephant. She went to the kindergarten Halloween party with Miss Liz and then came to visit my classroom party. She doesn’t mind all the kids one bit. She squirms to get down and then starts going through all of their bags and desks, she is not shy at all. Claire didn’t get to go trick or treating this year, we think she’s still a little young. Plus, I’d have to eat all the candy she would get and that would just be awful. : ) (Can’t wait for next year!! : )  ) I’ll post a picture of her soon.

Also, Miss Liz made the CUTEST Halloween picture with Claire’s footprints. We’re so lucky to have her watching Claire for us, she is the best! (And Pam too!! : )  )

Now…onto Carter. Carter wore a Halloween costume that the NICU nurses made for him: a Neuqua running suit. I can’t escape it. Everywhere I turn it’s more running!! Oh well, guess I’ll just have to get used to it. Here he is in his costume:

Good luck at state NV cross country!

Also, found him the cutest little cloth pumpkin at Build A Bear (it is just his size) that the nurses filled with some sugar water treats for him! We’ll take pictures of him holding his pumpkin tomorrow. It made my day to go visit Carter Sunday night and he was wearing clothes!! It brought tears to my eyes. I got to hold him for over an hour with NO episodes! He made these little newborn noises that melted my heart! Monday night when I held him in my arms he stared at me with eyes wide open for 15 minutes straight sucking on his pacifier. It’s moments like these I wish he was home so I could snuggle him all night!!

Carter pulled out his feeding tube and oxygen! The tape on his face is a special type of tape so it doesn’t get on his delicate skin.

Mommy got to dress me in this outfit. This was the first time she dressed me!

The nurse has to suction fluid from his nose. This happens from the nasal cannula.

My family is always with me!

“Noooo, not another bath!!!”

All snuggled up!

Carter is currently doing well. He’s still having feeding and bowel issues but I guess that is pretty typical. His blood work came back and showed that a few numbers are pretty high (not sure what exactly). The just of the issue is this… Carter has had a lot of trouble tolerating his feedings. Since he cannot swallow, he is fed through a tube down his nose into his stomach. They try different types of ways to feed him to see what he tolerates best. They first try feeding him like a newborn, the entire amount of food every 3 hours. Then they try feeding him continuously, let’s say 6 mL every hour, with 1 mL going in every 10 minutes. Something like that, you get the jist! When they have the feed going in continuously it is hard to vent his stomach. The oxygen is still at 5 liters and because of this, too much air is pushed into his tummy. This causes his belly to inflate. He cannot tolerate the bolus feedings (being fed all at once) because it is too much at one time. So they must do the continuous feeding for now. This means inflated tummy and more episodes where his blood saturation drops as well as his heart rate. The nurse will have to stimulate or rub him to get him to breath again. This is just one part to the feeding issue.

The other part to the feeding is that he had to get his nutrients through an IV since he wasn’t up to the total amount of mL of breast milk that they would want him to have for his weight. They don’t want babies to be on this type of thing for long. In fact, he just got his PICC line out yesterday, YAY!!! No more huge IV in his arm = no risk for infection from it anymore!! Anyway, some numbers in his blood test came back high which could mean one of two things. One, his bones are not absorbing calcium properly or two, his liver is not working properly – which from what we understand, can be caused from the supplemental nutrients he was getting and the fact that he was extremely, extremely premature. So what does this mean? His milk is now being fortified with nutrients to help this along. It seems we won’t find out why exactly those numbers were high for awhile.

Also, the poor little guy is starting to have a rectangular looking head with a skinny long face. This is caused from him laying primarily on his sides and tummy. To try and correct this the nurses will try and see if he tolerates laying on his back. Babies prefer being on their tummies, he has more episodes when placed on his back.

Other than that – our little 1 pound 11 ouncer is up to 3 pounds!! He’s also grown almost 2 inches since birth, putting him at just under 15 inches. Go Carter, go!!

A HUGE thank you to everyone for meals and gift cards for meals. It has helped our family tremendously. Please know that we are extremely busy and while my intentions are to write each and every one of you a thank you note for your thoughtfulness, I am not as prompt and timely in doing so as I would like to be. When we catch a few free minutes we just want to sit and do nothing! Please know that we are extremely grateful for your support. It has helped more than you know!

And, once again, we end an update with how good God has been to us. If he brings you to it he will most definitely bring you through it. And, like I always try to remind myself, if everyone threw their problems into a pot, you would take yours back!! : )

Updated pictures!

I was able to take some pictures tonight of how big Carter is getting! One of the pictures is of him at two days old and the rest were taken today, 10-22, at 40 days old. Amazing how far he has come!

Carter, day 2

A big yawn!

Carter is moved!!

Today I walked in to visit Carter and his bed was gone!! The nurse asked if I was looking for Carter because he’d been moved to the next room! There are 3 rooms. One for the most intensive care babies, one for stable babies (this is where Carter is now), and one for the grower/feeder babies just waiting to go home. I couldn’t believe it, tears of joy streaming down my face!!!!

Carter now weighs 2 pounds 11 ounces, he’s gained a pound since birth. He will be 6 weeks old on Wednesday! If he were still in utero he’d be 30 weeks. He is now being fed 8 mL every 3 hours and the goal is 21 mL every 3 hours. They go up 1 mL everyday. All of his brain scans came back negative and his bowel X-rays show no signs of NECC or a bowel obstruction. They continue to look for signs of those until 34 or 35 weeks. He looks great and is getting so much bigger! His features are changing as well. Hope to post new pictures this week.

Also, the doctor told us there was a 100% chance Carter would need to be back on the ventilator at some point because his lungs would collapse. I’m happy to say he hasn’t been back on the ventilator and the nurse said he wouldn’t need to be unless he got sick! Yay Carter!! : ) Sometimes medicine and science don’t have all the answers. God can do so much more and we thank him everyday!

Steve Holds Carter for the First Time!

Carter continues to look good!! He’s been having a week much like the week he had 2 weeks ago when they had to stop his feedings and closely monitor his bowels and stomach. At that time they were watching closely for NECC. This time they are watching for a bowel obstruction. It happened a few days ago when he had an episode where it took the nurses 10 minutes to get him stable again. The nurse at the time thought Carter might be getting sick. So they drew blood to test his white blood cell count. All numbers came back normal but they gave him a blood transfusion since they still had blood leftover from last time. Since they upped the oxygen, it was at 23-25% before and they upped it to 35%, his belly started to become inflated. This sets off an alarm to the nurses to watch him closely. They ordered x-rays for his bowels and again they were distended. The doctor had the pediatric surgeon come on a few different occasions to check him out. The recommendations were for them to stop Carter’s feed and x-ray his bowels daily to check for changes. So far there have been no changes to the bowel in the x-rays. He continues to remain stable with very few episodes a day. The doctor seems to think he doesn’t have an obstruction since he is able to poop on his own without a suppository (yay!). So besides monitoring his bowels right now, the next big goal is for Carter to continue to tolerate his feedings. This is normal for a 24 week-er but still frustrating for everyone involved! What seems to happen is they continue to up his food until he can’t tolerate it, tummy becomes inflated, he has a major episode and then the above happens. Before they stopped his feeding he was getting 6mL in a 24 hour period. The goal for his weight and age is 6 mL an hour. Needless to say, he’s got some work to do! But we knew that his digestive system was going to be significantly underdeveloped and are not surprised by this. Carter also had his CPAP removed and now just has a nasal cannula, I can’t remember if we updated on that or not. This is a step up from the CPAP and is great news! The doctor said he would most likely need to be back on the ventilator within 2-4 weeks after birth. He was 4 weeks yesterday, so we are proud of him!!! At some point we are expecting his lungs to collapse and then he’ll have to be back on the ventilator. Being born so early he will eventually get tired. Last week Steve got to hold Carter for the very first time!! (and boy is it a production to take him out!!) Carter is now 2 pounds 4 ounces (was 1 lb. 11 oz. at birth) and 14 1/2 inches long (13 inches at birth). We celebrate each day that he continues to grow and are so proud that God chose us to be his parents! Here are some pictures below.