Wednesday, April 29, 2009

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.

14 comments:

Marva said...

We are still praying and that is terrific news!

i just wanted to share that after we say our bedtime prayer with our premmie 3 year old twins boys, they always say God bless and they bless family and friends. Last night I told them a little about Gaines and how they were sick like him and God healed them. While say their blessings, they blessed "Ba by Gwaines".

I just thought that is so sweet! God bless you all!

Blessings from Alabama!!!

cheryl said...

Brittany,

So glad to hear your little man is improving!! The Lord has him cradled right in HIS hand!!

Could it be cor pulmonale that you are talking about? Since he's getting better...don't worry much about this. Sounds like he truly has turned the corner. You are right though, there will be good days and bad days. Just as with us.

Praying him right out of the NICU and home with your family!

Landon and Jen said...

The heart condition you are talking about is Coarctation of the Aorta.

My husband and I are praying for baby Gaines!!!

Ruthie said...

I am literally crying over those pictures. Seeing your pastor and good friend make such a huge effort to come and support you in person, wow! That kind of love just touches me and gives me goosebumps, and to think, the Love of our Heavenly Father is even greater! So thankful that the Lord has blessed you in such ways.

So glad to hear the good report about Gaines. Continuing to pray!

Ruthie

Gretta said...

We are still praying for Gaines & you both everyday. The encouraging news is such a blessing. I know it helps to lift the spirits! Keep remembering through it all to give God the praise & know that He is still holding you in the palm of His hands!

Sarah said...

So happy... glad you got to see good friends and get great support from Jay today. We will continue praying that Gaines beats the odds!

I know you've had other offers, but if you need a place to stay, our friends in Manassas Park, VA offered to let you stay there as LONG as you want. They are incredible hosts and will take wonderful care of you. Shoot me an email sarahatsarahdyessdotcom, find me on facebook or whatever if you want more info.

Collier Chronicles said...

I am so glad to hear the good reports for today! Continuing to pray for you! I know the Wolf family can understand what you are going through,on top of being your loving and caring pastor. I am sure that has brings you some peace as well.

Debra Davis said...

Brittany, my eyes filled with tears and my heart with joy when I read this most recent posting. I am so happy things are looking up for all of you. Please know that we are all still praying hard here at Alfa for Gaines and everyone in your family. We love and miss you.

Melody said...

Praise God!! He is so so good! I am so ecstatic to hear that Gaines is doing so well! My son & I have been praying for Gaines constantly (he always prays for him before our meals and before bed) and I am not surprised at all that he is making such great progress- God is answering the hundreds of prayers that are going up on Gaines' behalf! I'm so glad you're having a better day!

Sarah said...

SO HAPPY to hear the good news. :) Yay for no coarc! And possible extubation soon??? Go little Gaines, go!

Giggles said...

God is good! Still praying for you all:)

Footprints Ministry said...

"In your strength I can crush an army; with my God I can scale any wall.God’s way is perfect." Psalm 18:29

Praise the Lord! So glad to hear he's making improvements! Gaines can do anything with the Lord by his side! Praying!

Jess said...

Awesome, encouraging news!

I remember you guys saying a while ago that you did not read too may others' NICU experiences; because obviously Gaines is his own unique case; that is understandable.

However, I wanted to share with you that over the past couple of months I have been following another preemie boy's story..praying for him...and feeling like I've truly witnessed a miracle. He was actually born 2 weeks gestation EARLIER than Gaines. I think (not that I am any kind of expert) that this baby had some of the same obstacles as Gaines. And he just came home!

If you still don't want to hear about other babies, just ignore me. But I thought I would share just in case, particularly if you are looking now to connect with other parents of preemies. Their blog is prayingfortrey@blogspot.com

Keeping you in my prayers,
J

Kristi J said...

I love seeing such great news! I will continue to pray for precious Gaines, but it is so good to see things looking up right now!

God bless!