Friday, November 2, 2012


Sheesh. It's November. I have not seen home since September 8th. Wow. Such a long 2 months. Amazing yes. Hard, definitely. Worth it, absolutely.
The latest....
Well, I talked to one of the picu doctors today and Noah is doing well. He is SLOW at getting better, but he is getting better. The Cath on Tuesday showed that his heart and the repair done to it are functioning well. His body has gone under so much trauma that it is trying to heal as best as it can but it is just taking a long time. Due to the cardiac arrest, I believe that is why we are having a slow time. None the less, he said that Noah's kidneys have gone through the ringer and are very damaged. Due to slow blood flow, which is normal in hypo plastic left heart babies, and all the medicines pumped through his little body, his kidneys have just taken a beating. They have taken him off of the lasix and backed off the diuretic, and tried to lessen other meds as well. Hopefully they will see some improvement in his kidneys soon. He is getting rid of fluids ok, but still needs to get rid of fluids in order to get weaned off the vent in a timely fashion and in general he needs the fluids off of him. He needs to really pee and get rid of excess fluid. They readjusted his right chest drain and got some more fluid out of it today, so that is good. He has some clotting, even on Heprin (blood thinner) and that can be normal in a hypo plastic heart baby as well. Not a good thing, but normal. His Oxygen saturation was real low the other day when I was up there, but seemed to normalize later in the day.
He has been off of the pacemaker since last weekend. That is very important and good! The Ventilator. He has been on a ventilator since the day he was born. :( This can be a big deal to get him off of. Please pray they can continue to wean him off of it. I don't want to rush or push that sweet boy before his time, but please pray that comes quickly. He needs to be off of that thing. It is a huge step to recovery. I think a lot of the things slowing him down over all will correct when he is able to be held and picked up. This can only be done when the ventilator is out and other tubes/drains taken out.Other than that he seems to be doing well. He loves his passy. He is so sweet and has great hair, a handsome face and precious eyes. (when they're open)Feedings have gone up, so hopefully that will help his systems. We'll see.

So, how to pray:
pray for total restoration of Noah's kidneys RESTORATION is the word of the night. both for momma and noah
pray for fluids to drain and drain, for PEE
Pray for gas to be released. yes, pray for Noah to toot his little heart out.
Pray for clots to be no more! For the heprin to work and then be able to be weaned off the heprin.
Pray for his chest drains to be taken out.
Pray for him to be weaned off the ventilator and for all stats to remain consistent.  (HUGE)
Pray to stay off the pacemaker
Pray for him to be able to be picked up and HELD.(this is for mommy too)
Pray for Noah to not have damage to other functions in his body due to all the trauma.
Pray for him to get relief from his bed sores he has on various parts of his body
Pray for him to continue to recognize myself and nick as we are not able to be nearly as close as we would like (holding him and playing with him)
Pray for him to not need as much pain and sedation meds as often
Pray for him to have all the immune support he can get.

So, most of you know that Ava has been running a moderate to high fever for 2 days now. I suppose it was a good practice fun for me to be reminded that when Ava has the slightest fever, she has to be taken to the dr and looked at. slightest of fevers could mean trouble for Noah when we're home. So, it was good practice. They ruled everything out and sent us home to treat the fever and see how things go. I think teeth, exhaustion and travel have caught up to her. :( I so long to be home again with her during the days. She does so well on a routine.  (as do i )
Pray for her to have full health restored
pray for her transition back to home this coming week
pray for her to be able to rest
pray for the next 2 weeks of me not seeing her again. :(

I can't even begin to think of all the ways I need prayer. I could post a whole new blog about that. maybe tomorrow. haha. just pray as you feel led. I'm tired, weary, holding on to every little bit of hope I can muster but trying not to feel let down when things don't happen the way I think they could. Pray for Nick as he endures and works. I miss him terribly. I cannot fathom life without him. I would just collapse from sheer exhaustion. He is just so wonderful and I miss him. a lot. all the thoughts and lessons on marriage through this time..that's a whole other blog as well.
Love you all. thank you for the prayers and for holding my arms up.

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