Friday, August 27, 2010

Grandparents are special!




Dear Grandpa and Grandma D:

You drove all the way from your farm in Ontario to my house in Calgary. That was really special. Thank you for spending so much time with me: going to the zoo, taking me and my parents on our first big drive to the mountains, helping my parents get organized for a big party, reading me stories, teaching me to say "ahhhhh!" You were very brave when I retched and helped me to feel better.

I love you. Hugs and kisses,

Noah

ps. Here are some pictures and videos I thought would be fun to share with our readers!



On no: in this video with my mom I am having fun and then just about to retch!


video video video

Thursday, August 5, 2010

Brutal truth


Our dear Noah was born November 24, 2010 at 8 pounds, 13 ounces. He seemed very healthy. He was easy-going, loving and unusually agreeable. But his mommy knew something wasn't right. She was told to "relax", that new moms were nervous and that he would feed in time. I had buckets of breastmilk and a child who seemed totally underinterested in eating. He only ever ate enough to eliminate the edge of his hunger.

We lived in worry that Noah would not eat enough to stay hydrated and it was obvious that he was not eating enough to grow. I remember the day that our doctor at Children's first talked about “supplemental feedings”. The idea was so foreign and unnatural. To be perfectly honest, I don’t think that I really comprehended what she was talking about and how much it would eventually consume every waking and sleeping moment of our lives.

So, 2.5 weeks old, my son was tube feed via NG Tube and evenually a G-tube. He vomited large portions of his food, day and night. People told me he would be fine, he looked so good, he was a fine weight. I heard endless stories about other kids who were small. I smiled politely because I had such severe depression I didn't know how to even respond. Soon enough, I just starting asking if these other children were feed via a tube, and since they weren't, the comments slowed.

The Drs. said Noah would get the energy he needed through tube feeding to drink better. I worried about his oral skills from day one but was told there was no reason to expect Noah to have any kind of aversion. Then, it started happening. It was a slow process. For a while, he would take a bottle. Then he stopped. He tried purees. Then he stopped. Now, he won't eat or drink anything. He is determined, figuring out every possible way to avoid eating.

He had an extreme treatment for reflux via surgery. The first week went great. Then he started retching. And hasn't stopped.

I hunger for the day we will no longer function in survival mode with stress, lack of sleep, and worry about Noah's medical needs and his relationship with food. Everyone keeps telling me he looks great....he does...I get it....but that isn't always enough to get through the day.

We are learning how to deal with the day-to-day. But honestly, right now, I'm just pretty scared of the journey to come. I desperately want to help Noah but no one seems to know how to do that, least of all me. I lean more and more on my faith in God and the understanding that He is great healer. I sit and stare at my boy who is full of life and fun. I get recharged.

In some ways, we are eternally grateful for the medical technology to help Noah thrive on a feeding tube, and in other ways it was the beginning of many heart-breaking complications. Our normal lives have revolved around the clock feedings. It has been a constant balance of how to maximize the calories we can get into Noah. We've had several hospital stays, and a myriad doctor consultations with every pediatric sub-specialty. He is strong, determined, and amazing.

We have fought for Noah and he is finally on the normal growth chart at the 2nd percentile for weight. This milestone might be the biggest accomplishment in his life and the lives of both of his parents. And, it brings us to our next challenge over the years to come: how to wean a determined, bright, 100% tube dependent baby. For now and probably for a while to come, I have to leave the idea of weaning on the backburner.

Despite the many moments of darkness, the endless frustrations of tube feeding, and the virtually non-existent sleep, we recognize that we would do it all a million times over for Noah. He is the delight of our world.

Sunday, August 1, 2010

The little blue suitcase (oh, and home again!)


So our little guy is back home once again. We have follow up appointment with Drs. and GI specialists in the weeks to come. In the meanwhile, we try to help Noah through his retching and give the Neocate trial a run for its money (no pun intended). Jared and I came up with an idea to tote around the pump and bag. Jared created the little blue suitcase complete with diaper bag storage and emergency g-tube kit pockets. Works well even in the car, baths, sleeping etc. Noah is still awake for a few hours at night whimpering and retching so that remains very tiring for all 3 of us. You would think he'd make up for the lack of sleep at night by napping more in the day but that isn't the case. However, I take whatever napping he gives and sleep him more like a 3 month old than an 8 month old!

The plan: have a simple life with our Noah. Take baby steps. Ask for help. Do everything in small chunks. Enjoy family and friends (Grandma and Grandpa D. are coming to visit in a few weeks!!!!!!!!!!!!!!!!)


The little blue suitcase - aka bluey!


Green Avocado Monster!!! Not a bite went in his mouth but doesn't he wear green well?

Our fun place to play and read stories.


Noah's probably wondering how he got suck with these two crazy parents!


Kijiji is great for used toys!

The little car that could!



Noah loves this margarine container - or maybe his parents do?


Noah and his buddy J enjoying some beach fun - such pals!

Noah splashing around at Miss Jen's birthday party - this was in between our last admissions.

See you around!