Day 79

Jaxson is 79 days old today. He weighs 7 lbs 9.2 oz! He is my little porker! He has continued to get good reports the last few days. He is getting a special formula called EleCare. The pharmacy in the hospital makes it for him. It costs $100 a day, which we don't have to pay now since it will be included in his hospital bill. However, we are hoping he doesn't have to come home on this formula. I talked to our insurance company yesterday and we would be responsible for paying for it up front. We have to buy it by the case, which is $600 weekly. They will reimburse us 80%, and I am calling to talk to someone about the possibility of Medicaid covering the remainder. He is getting 15cc (=1/2 oz) every 3 hours. Yesterday, the doctor decided to try giving it to him through a bottle if his breathing was less than 70 breaths per minute. The doctor said he would like to try to have him up to enough food by the end of the week to remove his PICC line (the IV where he gets his supplemental nutrition). We are keeping our fingers crossed and saying extra prayers for that to happen. He is going to continue giving Jaxson antiobiotics until Thursday, but says he shows no real symptoms of infection/sepsis. His platelets are continuing to increase on their own. They were at 77 yesterday. His GI doctor came by today, and said they are starting him on Reglan to help with his reflux. Reglan is the same medication they use with many pregnant women to help with acid reflux. It was the first medication they tried me on when I was having morning sickness. Essentially, it moves food through your body faster, so it doesn't just sit in your tummy and make you feel sick. The thing I'm worried about is it doesn't allow your body to time to absorb all the nutrients it needs. Hmm... maybe the reason I continued to lose weight while pregnant... I don't want Jaxson to miss out on valuable nutrients. I sure the doctors know what they're doing, and lots of babies take Reglan. I guess I'm just worrying about it a little too much. Anyway, I asked his GI doctor about the possibility of him starting on breastmilk, since we have almost 900 bags stored up and counting. Dr. Mestre said they are just going to watch him for the next 3-4 weeks and see how he does on the EleCare, and maybe they'll switch him to breastmilk before he comes home. If I understood everything correctly, he might get to come home by the last week in July or the first week in August! At least we have some sort of goal now! It makes me excited! He will be about 18 weeks old, and if he continues to grow about the same rate he's been growing, he'll be 12 1/2 lbs! It's a good think I left the tags on most of his clothes. Looks like I'll be taking some more stuff back to exchange for big boy stuff!!!

They also turned him down to 1 liter on his oxygen. If he had to come home on oxygen (which we're praying he won't), this is the kind he would come home on. He was completely off oxygen for several days before, so we hope he can prove himself again! He hasn't had any A's and B's for almost 2 weeks now, so he has already completed the 8 day countdown. Preemies have to go at least 8 days without dropping their heartrate and having apnea episodes. He won't have to complete another countdown for that, so now we're just waiting on his feeding to get better!

We bought him some toys this week. That gives him something to do during the day. Many people think babies who are born early are often developmentally delayed, but I think it's because they're not stimulated enough. Even full term babies can be developmentally delayed if they don't have any think to stimulate development. We took him some toys and the nurse said I could bring his bouncy seat and his Bumbo for him to sit in. We don't want to limit his potential because he's in the hospital. Lots of smart people were preemies... Albert Einstein and Isaac Newton are two great examples!

We love you all so much, and thank God for each prayer that is prayed. From young to old, we know He hears them all! We hope our little sweetie continues to touch your lives as much as he's touched ours. He continues to impress us every day! Thank you so much for following Jaxson's story.

Good reports!

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Jaxson is continuing to impress us with his weight gain. He is 7 lbs 2.2 oz! By the way, he's still not eating. After a scary weekend, he has definitely had some big improvements. He was put back on a ventilator Friday because he aspirated. They took him off the vent Saturday afternoon and put him back on his canula. His blood cultures came back positive for infection last week, so they are continuing to treat that with gentamycin and ampicillan. He is also getting lactobacillus to replace the "good bacteria" that is being killed. He also had a positive test result for clostridium difficile. This is because he's on so many antibiotics. But they are treating his c. diff with Flagyl. His CBC showed that his platelets were up to 71 today, which is a huge improvement. That's the highest they've been without him having a transfusion. Hopefully, that's because everything is starting to get better! He also had good reports on his KUB today (tummy x-ray). Dr. Bruce said he was impressed with Jaxson's numbers today.
I just spoke to his nurse a few minutes ago. She said his eye exam came back clear, and he no longer has ROP (retinopathy of prematurity). We are very thankful for that! Now, he won't have to have another eye exam until he's a year old. Dr. Bruce is not planning to feed him today, and Dr. Bierd will be here starting tomorrow. We're not sure when he'll get to eat again, but he doesn't seem too upset or hungry.

The never ending roller coaster ride!

I cannot even begin to tell you what a roller coaster ride the NICU is. Jaxson is 9 weeks and 3 days old. Friday, we celebrated his 2 month birthday! I can't believe he's already two months! We brought an apple pie for the nurses in labor and delivery and sugar cookies with sprinkles for the NICU nurses. Our friends Lee and Leah brought him balloons for his party. Saturday, when we got there they had taken him off his nasal cannula and his bed warmer. This meant he was breathing fine on his own, and he could regulate his temperature. They also had him dressed in clothes for the first time. He started bottle feeding last Tuesday too! His platelets were coming up on their own, and he seemed to be digesting his food with no problems.

So, yesterday we're back to square one. He's back on the cannula, platelets decreasing, back on his bed warmer, no clothes, and NPO (just fyi that means no food). The only reason they gave us for not feeding is that his stomach x-ray was not 100% normal. The doctors finally admitted, they don't know why his platelets are low. He has never been moved to an Isolette. Being in an Isolette is a step up from the open bed he is in now. Plus, it would keep him from being exposed to so many germs and bacteria and help eliminate some of the noise in the NICU. Babies usually spend most of their time in the NICU in an Isolette, and then move to a crib right before they get to go home. The doctors and still unsure when Jaxson will get to go to an Isolette. One of his nurses told us he may be there for a few more months. He will definitely be the biggest baby in there! He is already 6 lbs 6.4 ounces. I have taken back almost all of his preemie clothes and swapped them for bigger sizes. He is getting so big!

Last week, he got his second eye exam. The doctor diagnosed him with stage 1 ROP (retinopathy of prematurity) in zone 3. This is pretty common in preemies. Most likely it will clear up on its own and his vision will be normal. He will have a follow-up visit a week from today.

Since we know he'll be there for at least 6-8 more weeks, we've contacted a few other hospitals to see about having him moved closer to our house. We are driving about 200 miles a day! Also, at St. Vincent's we cannot visit with him at night until after 8:00. If we stay for an hour and a half, we don't get home until after 10:00. I should find out more info about whether or not we are moving him by tomorrow.

Please keep praying for our little sweetie! God has already answered so many prayers, and we know he will continue to answer so many more!

Not again!

Jaxson hit the 5 lb mark this week! He is 5 lb 2.5 oz as of this morning. It looks like I will be taking some of his preemie outfits back! He was up to 15 cc of the Alimentum formula per feeding on Monday. Yesterday, we got a phone call saying they were stopping his feedings again. Apparently, the doctor thought he was having too much food left in his tummy after each feeding. He was having 1-2 cc of residual after an hour and a half. The doctor was concerned because his white blood count is back up and his platelets are still down. He got two transfusions (35cc each) of platelets last night and today. They started him on antibiotics since they think he may have an infection. They think the infection he has is due to his PICC line. This is the line where he receives his lipids, proteins, etc. After doing a little research, I found out it is very common to get an infection in PICC lines and most hopsitals make you sign a release before they will start one. Hopefully, he'll get over this infection pretty quickly and can start moving on to the next step. A lot of people think Jaxson should be able to come home now, but it will probably be another 6 weeks to 2 months before he is able to come home. He still has lots of stuff to do! He has to slow down his breathing to less than 60 breaths per minute before they even start trying to feed him from a bottle. He has to be over the infection and off antibiotics. He can't have any slight decreases in his heartrate or oxygen saturation for at least 8 consecutive days. His platelets have to be above 100,000. He has to be able to maintain his own body temperature and has to be taken off the caffeine they started giving him when he was born. He also has to get his shots up to date, and be circumsised before he gets to leave. He has another birthday coming up in little over a week! I'm trying to figure out how to make this party bigger and better than his one month party!

I love you guys and thank God for every prayer that is prayed for our family!

Up and eating again!

Sorry it's been a little while since I've posted an update. My day is spent driving (4 hours), visiting Jaxson (4 hours), working (7 hours), pumping (4 hours), taking a bath and getting ready for work (1 hour), sleeping (4 hours). That being said, I don't often find time to update his blog or respond to emails and phone calls. I try to set aside some time each week for those things.

Anyway, Jaxson is growing like a weed! He is up to 4 lbs 12 oz! Pretty good for someone whose diet consists of lipids and proteins through an IV. They are starting his feedings back today, and we are praying everything goes well with digestion! On Tuesday of this week, we were told he might not be eating for another few weeks (until he was ready to be bottlefed), but apparently they changed their minds. He won't be bottlefed just yet. Instead, he will have the OG tube that he had before. It is a tube that feeds directly into his tummy. I think they are planning to start him out at 3 cc an hour.

He came off the CPAP on Sunday and has been doing great on the cannula.

He hasn't needed any blood lately, so that is another plus. His platelets are in the 30's, but they haven't mentioned transfusing again.

Please pray for the 3 of us. Eric and I are getting so tired. And it doesn't help that we feel like nothing is being communicated clearly to us. We have tried to equip ourselves with as much medical terminology as possible, but apparently knowledge is offensive to some of the nurses. This is our son, and we want to give him the best care possible. Please pray that God will show us what he wants us to do. We have thought about moving Jaxson to a hospital a little closer to home, and it seems like God is pushing us to do that. We love you guys so much and appreciate everything you do for us!

We hope that we can someday be helpful to each one of you!

Day 37

A little update on Jaxson...

He is doing better. He is still on the ventilator, but will hopefully be off in the next day or two. When he kept dropping his heart rate last week, they decided he had to go back on something. They avoided the CPAP to give his nose a chance to heal. The nurse practitioner told us his nose is one of the worst ones she has seen. He's had these machines on there for so long, that his nose is like an open wound. It's starting to look better though. He is on several antibiotics to fight off his infection. They are treating him for NEC (necrotizing enterocolitis). They don't necessarily think he has NEC, they are just being prophylactic. His platelet count is still low. He's running in the mid 40's, but he seems to be feeling much better. He is up to 3 lbs 15 oz! He doesn't seem to mind the fact that he's not getting food again, seeing how he keeps right on gaining weight!

Please keep us in your prayers! He gave us quite a scare last week!

I was reminded last week of this song I learned as a kid:

He's still working on me, to make me what I ought to be
It took Him just a week to make the moon and the stars,

the sun and the Earth and Jupiter and Mars.

How loving and gracious He must be,

cause He's still working on me.

New Prayer Request

Baby Jaxson has a very bad infection. They are unsure what kind of infection it is at this time. He had a blood transfusion today. He was just put on a ventilator (he was breathing with a nasal cannula only). Lisa is unsure why he could not have gone to the c-pap instead of ventilator. She is upset and very concerned. He just turned a month old yesterday. We'll keep you posted on any updates.

Brent