7.23.06: Avery, home for a year

.. and whoa, what a year! How far Avery has come, ... yet how far he still has to go before we can consider Avery "healthy".

I can only vaguely remember what life was like one year ago, although without having to look back through this journal, many things still stand out from our first few months after bringing Avery home.

I remember Avery crying nearly 90% of the time due to a number of reasons -- mostly from difficulty breathing, reflux, and overstimulation. We were giving him breathing treatments every few hours, including at least once in the middle of the night.

Avery couldn't handle eating very much at a time so we were feeding him often, including about every 1.5-2 hours throughout the night. We recorded every single milliliter and the daily total was always so disappointing. I remember times where it seemed like Avery was having a good feeding because he appeared to be sucking away, yet when he was done and we turned the bottle over, not even half of the two ounce bottle was gone. The more difficulty he was having breathing, the less efficient his suck and swallow. We had to try so many tricks to help him ... every person who cared for Avery had a special way to hold him or hold the bottle or other kind of touch that we thought worked to allow him to eat as much as possible. It seemed like we tried everything we could. I remember getting excited every time Avery had a good feeding, occasionally finishing his entire bottle. Inevitably though, he'd bring half of it all back up. It was very rare that anyone in the household, babies and adults alike, wore the same outfit for the entire day.

Caring for Avery was VERY draining and could be very frustrating at times. Mary and I had to learn how to recognize when the other parent had reached her limit and it was time to switch babies.

Getting used to Avery's gear -- the O2 concentrator, the monitors, multiple medications, the mobile oxygen tanks -- took some time. Having a baby who was tethered to at least one machine at all times also took some time to adjust to. Even with extra help, we found ourselves exhausted from the stress and sleepless nights. I remember being so tired one morning that I poured formula in my coffee. I guess it could be worse, .. at least I didn't pour vanilla creamer in a baby bottle!

In his first year at home he attended 103 (wow!) medical appointments! This includes pediatrician visits, specialist appointments (ophthalmologist, pulmonologist, cardiologist, ENT, gastroenterologist), home therapy appointments, ultrasounds, a bronchoscopy, an endoscopy, and home visits from various nurses. This doesn't include his 6 ER trips, or any same-day appointments or chest x-rays that never made it to the calendar. Avery also experienced one surgery, one ride in an ambulance, and had 2 hospital stays (28 days with bronchiolitis and 5 days recovering from the gastrostomy). Wow, ... no wonder we're so tired!

So, where are we today?

After sitting here to write and reflect on the past year, things don't feel nearly as overwhelming. Sure, the daily routine includes a lot of work, but at least we have a routine. A year ago we were no where near anything that resembled a routine.

From a physical standpoint, ... a year ago Avery was 9 lbs and 7 oz and today he is 17 lbs and 2 oz. He's gone from 21 inches to 28 inches.

In many ways things are easier, but a few things are more challenging.

Avery is a super happy guy and that makes life so much better. Compared to a year ago, he feels good much more often, so it's common to find him smiling and playing now. Believe it or not, when my family visited for over a week in May they never even witnessed Avery cry!

Avery is still on 1.5 liters of oxygen, but we anticipate starting to slowly wean off once Avery has weaned off his current dose of steroids. He's currently still taking 6 medications, but he's being allowed to grow out of his dose of most of them, so he shouldn't be on more than 1 or 2 before long.

Avery continues to be seen by a physical therapist and a developmental teacher once a week. The NANI Project nurse and the public health nurse each pay us a visit about once a month to check on Avery's (and Mason's) progress and to make sure we're on track and plugged into the system of services.

Our newest concerns and challenges are directly related to what happened when Avery spent that month in the hospital in the spring. His damaged left vocal cord should heal on its own, but it will likely take years. He may always have a scratchy voice. Meanwhile, after having been fed through a nasal gastric tube for several months, it's a very slow and gentle process to teach him to eat orally again. For now, he's only being fed about 5 mls. of tastes of purees or yogurt. Having the gastric feeding tube allows us to get calories in him, but even that isn't as easy as it sounds. We've had to make several adjustments to his feedings (type of formula, quantity, rate, etc.) to find what he can tolerate without spitting it all back up. His growth has been very slow since he had the gastrostomy 3 weeks ago.

Because of the g-tube and being on a continuous feeding at night, this now means Avery is hooked up to three things while in his crib (... feeding tube, oxygen and the pulse oximeter). Because he's now a more active sleeper, it is challenging to keep all the tubes from getting all tangled up. Even though Avery rarely wakes up in the middle of the night, we're often up due to alarms coming from the nursery. Either his feeding pump is flashing an error message due to a kinked line or his saturation monitor is throwing erratic numbers because the strap has come loose. We usually have to detach at least one of the lines and untangle everything, turn Avery back around in his crib and set everything back up. And if we're lucky, we do all this without waking Mason.

Avery today, ...

... can almost sit up on his own, can roll over both ways, can feed himself with a spoon, and replaces his cannula on his own when it comes out.

... recognizes some objects by name, although hasn't yet spoken or signed any words.

... loves books, music, playing in the water, making noises to entertain people and playing peek-a-boo with a blanket.

... loves animals, being outdoors, and wearing hats.

... loves watching Baby Einstein videos so much he nearly bounces out of his seat.

... loves to eat even though it's a struggle for him. His favorites are yogurt, mashed potatoes, melted cheese, sweet potatoes and carrots.

Avery is very social, extremely tolerant, surprisingly trusting, intently observant and emotionally genuine. He loves to explore new things, meet new people and see new places.

But, in the big picture, I expect we'll look back at all this a year from now and realize just how far Avery has come and how much easier life is. A year from now, it would be great if Avery no longer needs oxygen or monitoring. Likely, that will happen. Less likely, but still very possible, Avery will no longer need his feeding tube and will be able to take in all his nutrients orally again. Once Avery is stable off of oxygen, we'll be able to challenge him more with oral feedings. For now, we're just trying to keep him interested in food.

I expect we will get an official diagnosis of cerebral palsy at some point in the upcoming year. Avery clearly favors his left side, displaying a bit more strength and coordination on that side. He still uses his right side enough to give us hope that we'll be able to work through the weaknesses over time and maybe the CP won't impede Avery's ability to lead a very normal, active life.

Avery has such a precious little personality and it's exciting to see him continue to learn and develop. He seems to already have a "glass-is-half-full" attitude despite all the hurdles he's faced and that's bound to help him in so many ways. His smiles just brighten our day, and each smile and each day gets brighter and brighter.