Baby steps!

Good evening!

I'm perched on a stool next to Noah's crib watching a syringe push in 8ml of pedialyte per hour. This is progress. We've been getting some great email questions so here is my attempt at another Noah Q and A!

How did the surgery go?

Better than we hoped. Noah was in surgery for 5 hours, Dr. Wong apparently completed his fasted fundo ever (the quicker they are out of there, the better). Noah has 4 surgical sites for the fundo, all of which look great. The upper thigh site is also healing well.

Pastor Ed, Julie-Ann and Oma were there with us during the surgery time and post-op. Noah was given an epidural (our choice), morphine, Tylenol and Advil for pain. He was on oxygen but only needed it for 24 hours. To our surprise, they inserted an NG tube for drainage. I thought the last one Jared inserted would be the very last!

Strangely Noah was only comforted by the soother (a newborn one nonetheless) for the hours after the surgery. Jared stayed with him that night and was able to sleep from 1am onwards. During the night, the NG was accidentally pulled, as was his catheter but we elected to keep the NG out and wait to start feeds through the G-tube. He is voiding well so there was no need to re-insert the cath. All little blessings!

How is Noah feeling today?

It is really hard to know - he was really frustrated and upset this morning once we started a 10ml an hour drip. Auntie Julie-Ann worked really hard to make him happy. We had to drop it back down to 5ml and since then he has moved on to 8ml an hour. His belly is soft, when I vented (released any air) from the G-tube there was little to be found. This means he is tolerating the slow amount of clear liquid well. He has been sleeping on and off since 6pm tonight. He also had an excellent sleep last night despite some very noisy neighbors. We were in a shared room with an unruly 2 year old - I simply asked if there was a chance for a private room and within an hour we had moved. Good thing since I had to download a white noise sound from the internet last night to help Noah sleep. Ahhh, technology.

Auntie Terri came this afternoon and we discovered that Noah is perfectly satisfied when being walked in a stroller. It takes a bit to manage all the tubes but he loves sitting or lounging and going for a walk. I think I know what I'll be doing tomorrow!

I cannot tell you how amazing the nursing staff, cleaning staff, Dr. Wong, the residents etc. have been. Nothing but the best care. Nurse Auntie Anika, you would be impressed!

What is the plan for the next few days?

We take it a little feed at a time right now. Noah is on a continuous drop of pedialtye until we think he might tolerate some formula. That will start slowly on a continuous basis as well. The goal is to get Noah to take a "bolus" or full feeds every 3 to 4 hours (I'm hoping for 4)!

How is it going with the G-tube.

What a difference between the NG and the G tube!!!!! First, Noah is free to rub away at his face to his heart's delight. Everyone says how much he looks like I did as a baby. That's not something I heard before with his NG in place. I've been caring for the G-tube cleaning and its pretty straight forward. The G does leak (stomach contents, gunky stuff and even formula will come out) so you need to clean it at least once a day. We use gauze and saline to soften the "gunk" and carefully clean it. Once his stitches are out, we will turn the bolster over the skin. We have Noah's G covered with burn netting so that his little hands don't play with it. We also tape it to a safety pin secured to his diaper. It will get easier to lift him once his IV is out. The G tube is straight forward - flush it, eye ball the length to ensure it is in place and feed. It has a med port and a feeding port. We've had all our teaching now with the home nutrition clinic and it was much less traumatic compared to NG training. Back in January, we had to do 3 inserts in a row - brutal for Noah. We have some new supplies but many of the supplies are similar or the same to NG. We had to learn what to do if the tube is pulled out. We have a kit that we will take everywhere Noah goes. That's the only "scary" part for me so far. I believe the G-tube is going to make a big difference in Noah's quality of life.

Well, that's it for tonight. I should sleep while I can. We welcome you to visit Noah for a short time, but it is better for us if you email or call our cell first. So much is unknown right now as we begin feeding. Just let us know if you would like to come by.

Last night, Noah and I listened to this song by Casting Crowns to help us fall asleep. Musics comforts him as does watching his "tv" (aka the morphine, NaCL, tube feed and med machines - see picture one!!!) Blessings to all.

The sun cannot compare to the glory of your love
There is no shadow in your presence
No mortal man would dare to stand before your throne
Before the Holy One of heaven
It's only by Your blood
It's only through Your mercy
Lord, I come

I bring an offering of worship to my King
No one on earth deserves the praises that I sing
Jesus, may you receive the honor that you're due
O Lord, I bring an offering to you