Sorry For The Delay!

I know that it is mid afternoon and this is our first post today. It's been a busy day...a good busy. We visited Gaines this morning and then spent some time with our pastor which was really a blessing. We also had a close friend visit today so between all of that we've just been busy. However, in the middle of all of this, we got a great report on Gaines.

We took our pastor and friend (Golson) up to see Gaines around lunch and ended up talking to an attending doctor (actually the head of the NICU), Dr. Ali. He told us that recently they've had two other babies with the same symptoms that didn't make it. So when Gaines came in and had his first bad night he said "it was a horrible, horrible nightmare". Now that Gaines has made so much progress he said that he is no longer worried about him.

His oxygen was down to 35%, his nitric oxide was down to 10 and they were weaning his oscillator settings some. Dr. Ali actually said that he wanted to extubate Gaines tomorrow or the next day and move him down to the CPAP machine. My mouth about fell open. I wanted to ask if he was sure he had the right baby. He says that its really up to Gaines but the fact that he's moving so much means he wants to try and breath on his own. I'll keep you posted.

As for the heart issue, we talked to the cardiologist this morning. He talked to his partners and they still can't conclude anything from yesterday's test but he did say that there were some reassuring views of his heart. Also, Dr. Ali talked to us about it this morning. I'm almost afraid to believe I heard him correctly but he doesn't seem terribly concerned that there is a problem. As I understand it (and I'm terribly afraid I'm wrong here), Gaines had a problem of needing high oxygen levels and having bad blood gas levels. They thought the cause of this was pulmonary hypertension but nothing they were doing to treat that cause was helping his problem of high oxygen and bad gases. So, they started to look for another cause...his heart, and they ordered the echo. Dr. Ali seems to believe that since they hypertension is getting better, it was the cause of the high oxygen and bad gases (which are now much better)...not this possible heart thing. You can certainly have both but since one cause seems to explain the problem (the heart thing) while not ruled out, is less of a possibility.

Hopefully some of that makes sense. Bottom line is that we feel better about the heart thing...I really wish I could remember the name of it. I know it starts with a C and sounds sort of like cork. They will do another echo tomorrow and we pray that we'll be able to completely rule it out.

We also found out that if Gaines does have this problem, he would not have the surgery right away. It would still be in the near future but they'd wait until he was stronger, bigger and more stable. They'd give him a medicine to keep the PDA open until he was ready for the surgery.

Please continue to keep our family in your prayers. Gaines has made so much progress the last couple of days but he still has a long road ahead of him. Getting off of the oscillator will be so exciting but very scary. Today has been a much better day for me emotionally. Our pastor Jay gave us several important anchors in the Bible to get us through this storm. I really feel like from today on we are going to be ok. We'll have our share of less than stellar news, we'll have low points and we'll have times when we want to scream and cry but we WILL be ok. Below are some pictures from today's visits.

Love to all,

Brittany

This our wonderful pastor, Jay Wolf. One of the nurses told us that when Jay prayed with us at Gaines' bedside, Gaines' sats levels shot up during the prayer.

Beau, with our friend Golson. Golson flew from AL to see us today. He and Beau have been friends for more than 25 years.