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

No being sick!

Well, I did that thing you're not supposed to. I managed to get sick while Biggun is in the hospital, and because it is viral, I've been banned from the NICU until Saturday and only if I am better by then. Everything is okay.. I had to go to the ER this morning (thank you Papa for taking me) because I was severely dehydrated and having some tachycardia, so they hydrated me and I requested to go home so I could rest.

Papa Greg is ensuring Biggun has someone to watch over him. So far, Biggun has been on 22% oxygen and very nearly off the oscillator. The last X-Ray that came back was showing a partial lung collapse, so it sounds like they might not be able to take him off the oscillator as soon as they had hoped, but he is still responding very well to lowering the amplitude and percentage of oxygen he is receiving.

They are still weening him off the versed and hoping to supplement ativan as needed when they need to keep him calm. He's also tolerating the breast milk really well, and the ultrasound they did on his kidneys show they are in perfect functioning order.

Missing the bug so much, but Papa has been sending me pictures to keep me company. It's definitely harder when I'm not there to see and hear all the latest news, and calling for an update isn't nearly as effective.

Thank you for the continual prayers.

Much Love,
Rachel and Joshua

CPAP

Today was another good day. Biggun's lungs have done really well healing, and his oxygen intake is tapering down. They are trying to ween him on amplitude on the oscillator and if all goes well, he will be on a CPAP before the end of the week. For those who aren't familiar, that is no tube and a hose under the nose to help with oxygen instead! Which is one step closer to being able to hold him in our arms!

His feedings are going well. He's getting 2 CCs every four hours for four days and then he will move to feedings every three hours.

They are monitoring is carbon dioxide intake through the skin now instead of through a blood gas so there is no continual poking him later. They are also trying to ween him off his heated blanket to try to help him regulate his body temperature.

He is still on Versed to help with keeping him calm and still, but everything else is looking great. Even his x-rays are coming back indicating the PIE is almost resolved.

Keep the prayers coming!

Much Love,
Rachel and Joshua