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.