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

Osteopenia

Biggun has been having a slew of great days. A few minor set backs are bound to happen, and he had low hematocrit yesterday and needed to do a blood transfusion. He responded very well to that, so there is no cause for concern.

They did however diagnose him with osteopenia. They said his bone density is down. So to counteract it, they will likely be adding supplement to my breast milk during feedings. The long term outcome is just having bones that are more brittle.

It's been a long week... I missed him so much while I was visiting the boys in Utah, so we have a lot of catching up to do with Harry Potter! Just wanted to write a quick update.

Check out his new love for the pacifier!

Much Love,
Rachel and Joshua

Handprint

Biggun is doing his best to grow and get strong. They are still concerned and say he's acting like a preemie, but he is maintaining the CPAP and they are almost done weening the hydrocortisone.

We are still worried about his eyes, because he was on such high oxygen for so long. All we can do is pray that his recovery this last week will help prevent some of that and his eyesight will just be bad versus close to blindness.

His oxygen is up to 30%, but they are optimistic that he can maintain the CPAP for awhile longer. Today, he seemed to be having some troubles sleep... We almost wondered if maybe he was having a nightmare. Then he threw a Biggun temper tantrum filled with the beautiful sound of baby cries that was music to our ears. He still doesn't like being moved or touched, but we are on book two of Harry Potter, and he seems to really enjoy that.

Each day is one day closer to stronger health and a bigger Biggun. For now, we thought we would help to show his size by posting a handprint.

Thank you for the continued prayers.

Much Love,
Rachel and Joshua

Kangaroo kare!

Biggun had an amazing day!

No big reports, so I'm going to let the pictures do the talking!!

Much Love,
Rachel and Joshua

Big day for Biggun!

I may have been quarantined from the hospital for a few days, but that hasn't stopped Biggun from being a rock star! This morning with Papa as witness, little Biggun had his tube removed from his throat and was switched to a CPAP line instead.
That means as soon as he shows he has responded well to the transition, we can HOLD him. They are telling us as early as tomorrow!

His x-ray looked fantastic. Still some unusual pockets of air, but the PIE appears resolved and his lungs look so dramatically better than they did even a week ago.

His feelings are now every 3 hours instead of every 6, which is also a huge change. As he tolerates it, they will increase the volume (and fatten that baby up!).

I hope my next update includes us holding him! Keep him in your prayers!

Much Love,
Rachel and Joshua