Tuesday, June 22, 2010

Bye, bye hotel hospital...

For one week, we've enjoyed our stay at Hotel Hospital! They mix the formula, take Noah's vitals, give fresh linens, provide pink pjs for little boys, clean the bathroom, set you up with free wireless and cable tv...come on, why would be want to go home? Well, there is the cost of the cafeteria for the grown ups, the parking charges and the fact that either Jared or I miss sleeping in our own bed. So, it is a good thing and a perfect time to go home.

We are happily preparing to take Noah home tonight. The Drs. and nurses (and his parents) are pleased at how well his feeds are going - he did a bottling session with Occupational Therapy this afternoon and while he still only chews on the bottle, he willingly participated!

His g-tube site needs a lot of cleaning and care and he cannot yet bathe, but things are so much easier with feeds. Noah must feel better too - all he does is laugh and smile. He slept from 8pm to 7am last night. He is taking 140ml at each feed.

Our many thanks for the blessing of family and friends seen through prayers, support and love. Your acceptance and encouragement of Noah's special care strengthens our every day with him. We don't know how long Noah will need the G-tube. For now, he is 100% tube fed for liquids and he may try solids in a few weeks. We don't know when or if he will take liquids by mouth but we will work with all the lovely professionals helping us to give him the opportunities. It is better for us that we (or anyone else) don't put a time frame on the use of the G-tube. Noah will show us what Noah can do when it comes to drinking and eating. In the meanwhile, we are enjoying his darling personality, his development of skills and his smiles!!

Take good care,

Darlene, Jared & Noah

Sunday, June 20, 2010

What a guy!

OUR HAPPY BOY IS BACK!! What a little guy, smiling to everyone on the unit. It is so much fun. He is sleeping fairly well in the nights, napping is still tough but it is happening.

FEEDS: I really can't believe how well it is going. We are at a two hour feed frequency, one hour to drip in 75m of formula, and then an hour break. There is no sense that Noah is uncomfortable, he hasn't retched once and the best part - no barfs! He is leaking a bit of formula out of his stoma (the G-tube site) but we are keeping an eye on it and just changing the gauze regularly.

Jared and I are so grateful for all the help. A special thanks to the staff and students at FFCA for the generous gifts they blessed us with yesterday. Noah even got to meet his cousin Maddie on Skype today - what a fun experience.

This is such a different experience than when Noah was first born and lived at the Children's. Perhaps it is mostly me...I feel like myself, visiting with nurses, cleaning staff, other parents. We ran into 2 other tube feed babies today and I was even able to encourage and give support to parents just starting the journey of tube feeding. Aside from Noah being mistaken for a girl (thanks to the pink pjs - good thing Oma gave him a nice blue bathrobe for his hospital stay) all is well and at peace with us!

Mom D. shared this verse with us today - I think it is a good way to sum up the weekend:

Psalm 28:6-7
Praise be to the LORD,
for he has heard my cry for mercy.

The LORD is my strength and my shield;
my heart trusts in him, and I am helped.
My heart leaps for joy
and I will give thanks to him in song.

Thursday, June 17, 2010

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

Tuesday, June 15, 2010

Surgery update

Thank you for your prayers!!

Noah has arrived back from recovery. The surgery took about 5 hours. He is of course very sleepy. The surgeon was pleased with the procedures. Here are a few pictures to document the journey thus far. The last 2 photos were taken yesterday (I put them in the wrong order and I'm not changing it now!)


Jared, Darlene & Noah

I've been listening to Chris Tomlin's "Our God is Greater" today. Here are some of the words:

Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome and power
Our God, Our God…

Monday, June 14, 2010

Surgery Time

The surgery time is set for 7:40am tomorrow. It will last approximately 6 hours.

Noah is as happy as always - charming the pants off the nurses and Drs!

Thursday, June 10, 2010

Ode to Evelyn and last NG tube change (here's hoping)!

Well, the time has come to say good bye to dear Evelyn. Her help has been vital. Her attitude, a blessing. Her love for Noah leaves me without words. We sincerely thank her for all she has done. Don't be a stranger Evelyn - we'd love to see you soon!

We changed Noah's NG tube for (hopefully) the last time. If it stays in, we'll be good until Monday's admission to hospital. I've posted a few pictures to say farewell to the NG tube (if you look carefully in a few of the photos, you'll see some of a "NG Tube Free Noah"). I snapped a few while we were waiting for Jared to come home and complete the insertion. I pulled the tube early so Noah could mess around with food and have a swimming bath!

I'll attempt to blog updates regularly during our hospital stay, so please check in from time to time if you would like to see his progress.

It is a busy weekend for us. My dad (Grandpa V.) is visiting, and we are attending a memorial service for my dad's brother Jack who passed away earlier this year. I'm happy to be busy and have less time to think about Monday/Tuesday.

Wishing all our readers a super weekend!

Friday, June 4, 2010

Surgery Q and A

Weekly photo gallery! In the first picture you'll see Noah's buddies J and E who came to visit (with their lovely mommies). However, Noah had his first crib nap of 2 hours (YEA!) so his missed them entirely. Haha.

I've been listening carefully to questions we've been asked lately so that I can try to post a response. I'll do my best to answer, but please keep in mind there are a lot of unknowns for us right now. I'm really glad for the questions - keep them coming!

Question: Does Noah have a diagnosis?

Noah has Gastro-esophageal Reflux Disease (GERD). This refers to liquid and/or food that is in the stomach moving back up to into the esophagus. He has some low muscle tone. He does not have the ability to bottle a sufficient amount by mouth. He has oral aversion which results in his unwillingness to eat/drink a significant amount.

Question: What is a g-tube?

A g-tube is a gastrostomy tube. Noah will have this inserted by the surgeon by making a small incision in the skin and stomach lining and placing a tube within the stomach.

Question: What is a fundo?

The surgeon will improve Noah's natural barrier between his stomach and esophagus by wrapping a part of the stomach known as the gastric fundus around the lower esophagus. This prevents the flow of acids from the stomach into the esophagus, and strengthens the valve between the esophagus and stomach, which stops acid from backing up into the esophagus as easily.

Question: What is the muscle tissue removal for?

There are still "wonderings" about why Noah had an incomplete suck. He was never able to properly nurse, and he was very ineffective on the bottle. He chews rather than sucks. While his MRI was clear, they want to test his thigh muscle tissue for other neurological diseases that wouldn't show on the MRI. It will take 3 weeks to get the results. We really struggle with having this procedure done - Noah was hypotonic (exhibited low muscle tone) but he is at the low end of normal. He is sitting up by himself!

Question: Will Noah eat/drink after the surgery

Noah's ability to orally eat and drink in something we think in terms of months and years, not days and weeks. We will continue to offer Noah the bottle, cups, pureed foods etc. What he does will depend on his oral aversion, his pain management, etc. etc. It is a marathon, not a sprint run.

Question: Will Noah be "better" after the surgery?

Noah will still have reflux, but he won't be able to throw up. He will still require medication. The fundoplication is not a cure for reflux. We tried all medication options before we considered surgery. It may prevent Noah from vomiting, but the urge to vomit is likely to remain, resulting in him retching. That is where the G-tube comes in, for venting/feeding. We hope that will lessen the amount and severity of retching.

Question: When is the surgery?

Noah will be admitted on June 14 and the surgery will take place on June 15. They tend to perform infant surgeries earliest in the day. He will be in hospital a week or more. It all depends on how quickly he can tolerate his feeds. He will lose some weight in all of this because they will fast him for the surgery and it will take time to get his feeds up.

Thanks for your support and prayers!! Noah is a bundle of sunshine with his smiles and giggles. He is working on his first tooth (sometimes I forget to document the routine baby things) and is doing a beautiful job of sitting up on his own.