Happy Birthday, Dad!

Today is daddy Biggun's birthday! Biggun decided he wasn't super thrilled with kangaroo care because he was wet, but he kept stealing glances at me. I would talk, sing and coo to him and he just looked at me with those beautiful eyes. He really is so AWARE.

He is now a whopping 2 lbs 10 oz. they have him on genkomyacin for acid reflux. He was bumped up to 26 ml per feeding, but he still has issues keeping it all down.

He is responding well on CPAP, so we are thinking he might get to stay on that until he's big enough to have it removed completely! Hematocrit is still low, but they continue to compensate with blood transfusions.

Keep the prayers coming!

Much Love,
Rachel and Joshua

Growing

So I am currently sitting at the hospital, with a little Biggun in my arms, and I swear I can FEEL him growing! He's nuzzled right into my shirt against my chest and peeking around at anything and everything. While his eyesight isn't great, he's still managing to try!

They said he will still need a blood transfusion because his hematocrit is low, and they still have not determined his blood type because he was receiving so many blood transfusions that it made the read inaccurate.

Next week he is due for a thyroid test , scheduled for another eye exam. He is also starting vitamins and iron to help him grow. His cries sound like the most precious squeaks I've ever heard. But to hear him cry is music to my ears.

They are just now changing his isolate and he got a nice bath, so everything is clean and fresh. They are a little concerned about a hernia in his intestine due to straining while trying to potty. He looks like he is developing one and they say it's more common in boys.

But otherwise, he is growing famously! Please keep up the prayers! They are so obviously working!

Much Love,
Rachel and Joshua

Visit from the Squadron

Biggun had an eventful day! He got a nice visit from SMSgt Kile and LtCol Barnett today during kangaroo care. They came up to see how he was progressing and how he has been doing. It was nice to see the dramatic changes he has made in progress since first arriving at Lucille Packard. Even his color is looking amazing.

One of the things the nurse recommended today was that while it's too early for Biggun to be able to breastfeed, if I were to do kangaroo care without a bra or with a nursing bra, he might play around to get used to the idea of breastfeeding. He still hasn't mastered sucking, breathing and swallowing yet, but this would be great to prepare him for when the feeding tube comes out.

He is still having issues with his hematocrit levels, so they are still needing to do blood transfusions to keep his levels in check. His feedings are also up to 25 ML every three hours, which means he has a great appetite and is tolerating my milk well. It's definitely nice to feel like I can contribute to his care!

He is still rocking the CPAP, and he had a few more desats today than usual, but it's probably because we were handling him so much. His oxygen intake was up to 40% when we left, but it isn't necessarily a step back as long as he can bounce back from it.

Keep the prayers coming! Even though he's still needing transfusions and is still desatting, all of this is AMAZING forward progress.

Much Love,
Rachel and Joshua

PS He sure looks like he is having a great dream, no?

Baby Exercises

Today was an eventful day for Biggun. He is still requiring quite a few blood transfusions to compensate for a low hematocrit level, but his oxygen is still at 30% and his O2 saturation remains between 85-95. He received an eye exam dictating his eye sight is not great. He can see maybe an inch from his face, and maybe some shape recognition. They say this is normal and what he would have in the womb. He will continue to have eye exams every week for the duration of his stay.

Today, the developmental team supervisor came by to show daddy how to do some exercises to simulate how he would move in the womb. Long story short, I spent the day in the ER getting treated for a bacterial infection (all fine! Have antibiotics and not contagious!), but daddy stayed behind to discuss some pretty key facts about the baby.

The first thing he told us is that there is no reason to believe Biggun will not have the same IQ as myself and Joshua. When we expressed that we thought this was untrue, he said there was no study that indicated lowered intelligence in micro preemies. The only time they follow brain development is in the instance of brain bleeds, but Biggun's bleed resolved on it's own and they feel very strongly that it shouldn't affect him long term. This was GREAT news!

He showed Joshua an execise to simulate the womb, and said he would be back by tomorrow to show us some additional exercises that we would likely find invaluable. He said that babies like Biggun only have developmental problems because the world treats them as older than they are. For instance, he was born in January, but he was due in April. So his body is going to respond like a baby who is due in April, but the world expects him to act like a baby born in January. This becomes more of an issue as he gets older and we start to consider milestones like when he starts to crawl, walk and talk. But as he gets older, he will catch up. And it helps he has two great older brothers to follow lead to!

Grandpa Keslar came down for an amazing visit, and we were sure sad to see him go. We look forward to the next time we have family/friends visit. It's always wonderful to see a familiar face. In this place, it can get lonely and it constantly feels like it drains you. I'm participating in a study called "Promoms" about coping with babies born in the NICU and different relaxation techniques, and the sessions generally leave me feeling drained because of the discussion topics. I appreciate all of those who continually pray for me and send me messages to check up on me. It means a lot to me, and I can't tell you how much I really need it!

We've also been able to get other things sorted out in the background. For instance, there was an issue with Biggun's social security number not being filed that we had to remedy before we could sign up for medicaid. We also had to get some releases taken care of so the American Red Cross can get any and all information they need to pertaining to JDs hospital visit. It's been a long process, but everything is starting to come together. It's frustrating though, because I feel like I don't get to see Biggun as much while we run around trying to accomplish these things.

Please keep the thoughts and prayers coming. Again, I cannot tell you how much the generosity has helped, and we would have never made it had it not been for the kind people out there who care so much for us. Words will never express how truly grateful I am to you.

Much Love,
Joshua and Rachel

Graduating slowly

Biggun is slowly graduating to the intermediate nursery. His lungs are looking MUCH better, the brain bleed has begun to resolve itself, and his heart has recovered amazingly from surgery. The pneumothorax has resolved itself. They still notice some  haziness in his lungs and still call it a PIE - Pulmonary Interstatial Emphysema, but the diuretic has helped tremendously with that.

He has been completely weened off the hydrocortisone, morphine, versed and even the IV fluids are being weened. They pulled his PICC line and are moving to higher feeds now to compensate. He's now up to 15 ML of breastmilk per every three hours.

I asked about whether he'd be able to bottle feed anytime soon given that he's taking a pacifier really well now, but they said they master that around 33-35 weeks. They're getting him used to it by giving him a pacifier with the feeding tube to get him used to sucking while his belly is being full.

We are beginning to do kangaroo care each day. Josh is able to snuggle with the baby and I get to do it as well. He really responds well to both dad and I reading to him, especially while snuggled up against one of us.

First opthamological exam is tomorrow to test his eyesight and see how the high doses of oxygen affected his eyesight. They want to try to get him off the CPAP before they can even consider moving him, but right now he's sitting around 35% on CPAP flow. He still has quite a few destat episodes, but they keep saying that is to be expected. It's a little scary to be holding him and have him stop breathing, but the nurses just walk up and start massaging his back to get him breathing again. It's heart stopping, but I guess for them, it's fairly normal.

They are going to be doing an MRI next week as a baseline to measure his brain development and determine whether there is tissue damage. We still need to meet with the developmental team to discuss what to expect with regard to long term developement and what to look for. He's also now 13.78 inches long now, so he has grown a quarter inch since his arrival, and now is 2 lbs 6 oz, so up a half pound since his birth.

More to come... We will talk to the doctor more in depth tomorrow, but so far it seems like the prayers are doing AMAZINGLY well for him! Keep them coming!

Much Love,
Rachel and Joshua

One monthaversary

Biggun had an eventful day. They moved him from room 3 into room 4. It's a little more secluded, and there are 4 babies to each room with two nurses to watch over them.

I was able to hold him, but he destatted a few times and I got drooled on. Grandpa Keslar made his debut complete with some Texas Rangers pacifiers, and Biggun seemed content enough to sleep through it.

He finishes his nitric gas study today, so that will be one less machine to clutter up space. He's also up to a whopping 2 lbs 6 oz!

I wanted to say thank you to people who have donated, given their special thoughts to me, and the unending prayers. We would not have made it had it not been for your generosity and love. We are extremely fortunate to have been able to stay bedside with the baby and I owe it all to generosity and prayer.

He's also graduated to a bigger size diaper. He's no longer in micro preemie, but just preemie. He's also accumulating a butt that is definitely from my side.

Thank you for the continued love and support. He is tolerating the CPAP and still needs substantial help with his lungs, but it isn't grave like it was before. We are so lucky to have such a fighter.

Much Love,
Joshua and Rachel

PICC line

Weighing 2.4 lbs, Biggun is getting his PICC line out today. They use the central line for fluids, but he appears to not need that anymore. Huge victory for us!

We received an unfortunate dose of reality last night while visiting him when one of the other babies there, Jackson Charles, passed away. They cleared the room so the family could say goodbye, but it was so heart breaking. It reminds me that every day is a miracle and we are so lucky to have a wonderful God watching over us and a strong little guy who knows how to fight.

They are increasing his feedings to 15 ml every 3 hours, a huge jump from the 2 ml he started at! And now we can hold him twice a day.

The prayers are working. Please keep them coming so he can grow and come home!

Much Love,
Rachel and Joshua