Sunday, May 06, 2007

10 Weeks Old!

The sun is shining bright here in Chapel Hill, where our sweet boy turns 10 weeks old today! I find myself amazed in looking back on all we've gone through so far &, in spite of so many obstacles, how much Isaac has grown. His red hair has filled in nicely since his grand entrance with a mullet in February. As the sedation meds continue to slowly wean, his personality shows through a little bit more each day. Mr. Personality, he's quite a charmer. But there's no room for guesswork when he's upset or irritated - Isaac lets you know!

On the road to recovery, Isaac is experiencing some speed bumps today. His pH continues to be low & acidotic, causing fatigue & strain on his heart. Respiratory therapy has gone up significantly on his vent settings to compensate. His central line no longer draws back & has begun to leak, so we're hoping to thread a new cath over a wire. Once Isaac is successfully feeding through the G-tube & IV nutrition is no longer needed, he'll only need a peripheral IV instead of a central cath line. Hopefully we can last just a few more days on the line he has as the PICU team has been given the green light to start feeds through his G-tube today. However, Isaac continues to become more edemidous with minimal urine output over the past 24 hours. His liver is somewhat enlarged as well. Isaac's body temp has been low today, so blanket & a neo-natal warmer are being used to help. The concern, however, is that this may be the temperature drop before a fever spikes. Much to pray about.

Isaac has come a long way, but he still has quite a ways to go. Our goals/hopes for today is to rewire the central cath for adequate access & blood draws, establish slow feeds, bring his pH to normal levels, & get him to pee out a lot of excess fluid. Lots of area for prayer. We're so grateful to our awesome God for the time He's given us so far with our sweet boy & for bringing him through so much already. Five surgeries in only 10 weeks of life - that's a lot for anyone to go through, let alone a newborn. We have seen God work in miraculous ways in Isaac's life already & are asking Him to do it again.

19 comments:

Anonymous said...

I'm still praying for Isaac. God's in control, he can make miracles happen.

Anonymous said...

Oh the grace and peace that our mighty Lord bestows on us through the pain and joys of life- I am still praying and know that our sovereign Lord will carry your sweet family through. Love you!

Sue said...

We continue to pray for a miraculous healing... tolerate feeds, balanced Ph, more pee/less edema, and ultimately for his homecoming. Bless you both as you so unselfishly share your journey and sweet boy with the world. Praise be to God for all he's done and what he will be doing in the future. lylJ!

Kristian said...

I'm am praying 4 baby Issac 24/7 hope that he continues to do well and be able t become a world changer for god!

Emily said...

We're praying those kidneys go into overdrive and he pees off all of that fluid. Even with the puffy look he's cute as a button.

Anonymous said...

HAPPY BIRTHDAY ISAAC !!!!!!!!!!!!!
What a glorious day and the sun is shinning here too. God is in control and He is going to do amazing things before us. Isaac is going to begin peeing his little head off and his edema is going to improve. God is being glorified through little Isaac and through your allowing us to share this journey with you. We continue to pray for all the needs expressed and also for you and Jordan to get rest when you can. So many people are praying and fasting for you. I bought a new book while at LU by Dr. Towns "Praying the Psalms" I am praying them daily for Isaac and you both. May God hear our cries and completely heal your little Isaac. He is SO ADORABLE!!!!!!!
Love you so much...BB

Rhonda said...

We are still praying for your little man. May God bless your family everyday.
~Rhonda Pearce & Family

Anonymous said...

WOW HAPPY BIRTHDAY ISSAC! We are all still praying for you.

Jim & Stacie said...

Prayers for the baby from Our family to yours.
God Bless you.

The Bruggers

Jim & Stacie said...

We are praying for your dear sweet little one...
and sending our love to your family.

Anonymous said...

We're with you, every day!
Praying, Believing, Praising!
Happy Birthday, Isaac.
RKNBE

Anonymous said...

Still praying for Isaac, you and Jordan everyday.

Love in Christ,
Taneha

The Atkinson 6 said...

"O, Lord God, Behold you have made the heavens and the earth with your great power and outstretched arm. There is nothing too hard for you"
Jeremiah 32:17

He is omnipotence!
He is omnipresence!
He is omniscience!
He is immutable!

Love and Blessing,
David and Erika

Gina Witcher / Runnermom4 said...

Father, we lift up Baby Isaac to you today. We love you and praise you for all that You've done and all that you are going to do.

We ask tonight that you continue to help Baby Isaac's body to stablize since his trach has been put in. You know all the things the doctors hope to accomplish today... but we ask that you would accomplish even more. We pray that you would surprise us and them, even if it is just a small miracle.

We know you can Lord... You who create where nothing is created...
Give Isaac, Jordan, and Patience sweet and peaceful rest tonight, and give them many blessings tomorrow. Let them see someone choose to follow you tomorrow because of what this person has seen through this family and this child.

A. Ballard said...

There is so much to be thankful for this far with your wounderful baby boy!!!I am so proud of all of you and I continue to pray for all of you daily.My heart goes out to the three of you and just to read about this makes me feel like
I am there too.I have all hope that are Lord will put his hands around your family and continue to make changes and progress that go with his plan.You have a sweet boy and I pray that everything goes good and I will pray,more pee less fluid!I am so proud of Issac and his strong mom and dad!

Anonymous said...

He is beautiful!!!and God is the God of miracles and we are trusting Him with your sweet,sweet boy,PRAYING!!!!

Anonymous said...

Hi, Cindy Sampson again, daughter of Lois, (miracle child-like Isaac)- full trisomy 13 who is now 6 years old!). Due to Lois' cleft palate(as wide as they get) and intestinal issues, she was on a nasal gastric tube(went in thru the throat/nasal cavity for the first 2 months of her life. Then, we tried squeeze bottle feeding-a nightmare; she had awful reflux and fought her feedings. At 18 months, she had the feeding button inserted in her stomach and eats by tube that way. She has not thrown up once; just has retching(dry heaves) at times. I wish that we had done the stomach tube to start with. It is portable and we even feed her in the car. I think that you will be happy with it and you will know that Isaac is getting the nutrition he needs. But, we won't give up hope and prayers that God will heal everything completely and he can! If you have to insert a feeding tube, we clean around it each day with baby shampoo and a cue tip as it gets a bit red/bloody, with all of her twisting around, etc. We also have her wear shirts that are long enough to cover the button as she would pull on it-she's a rascal! My husband changes the feeding button every 3 months(I'm not brave enough) but our Gastrointerologist would do it in their office if we wanted. May God Bless you and little Isaac. Cindy, Brad, and Lois Sampson, Seffner, Fl.

Anonymous said...

What A little doll. My prayers go out for the little angel. May each day bring him closer to the best of health. Hugss for Isaac.bless

Anonymous said...

What a sweetie! I wish him the best and I hope all continues to go well. It's amazing to me how fortunate those being born today are compared to just 30 or 40 years ago. Not only do newborns have a better chance at life, they also have the fortunate opportunity to look back when they are adults and see how lucky they are at being alive, and to realize how precious they really are to everyone who loves them.