In it to win it

It's been a long week.

Really, it started last week and just continued into this one. Robbie got a cold in the middle of last week. Of course, thanks his crappy lungs, a cold is never just a cold in our house. Tuesday night he was sniffling, Wednesday he was doing a throat clearing cough. Thursday morning I was debating which ER we needed to go to- the close one or the one at the better hospital in case they admitted him. I ultimately decided to go for the better hospital, but since that's 35 miles away, I'd do a breathing treatment at home first, buying us enough time to get there and get in.

Thankfully, that breathing treatment cleared him right up. I was very surprised, but relieved. He woke up wheezing worse than I've ever heard him, which is saying something. I put in a call to the pediatrician and she added oral steroids to the inhaled steroids & pulmicort that we keep stocked at home. We kept him patched up, but when he developed a low fever on Friday night, we went in on Saturday. The pediatrician on call debated sending him for a chest x-ray to check for pneumonia but decided that despite his considerable wheeze, he was moving enough air to be safe. We did win ourselves an extra dose of oral steroids & an antibiotic, though.

As much as that sucked, it did highlight an interesting fact. This was the first antibiotic he's been on since December. She went back through his chart to see what has worked in the past, and sure enough. it's been 8 months since his last dose. That goes back to his constant ear infections before he got his tubes. My, how things change.

Of course, while this was going on, his eating tanked. I tried to just relax and recognize that even typical eaters don't want to eat when they're sick. Just go with the flow. The hardest part is that he will eat great at daycare, but not at home. We even had a few days of crying before I could get him into the high chair.

On particularly frustrating day, I tried to let him self-feed some yogurt (something he has only done once, but it was worth a try) without success. When it was time to take him to daycare, I packed up the uneaten yogurt and sent it with him. While I was there for the drop off, Katie pulled him into her lap and offered a bite of the yogurt. He immediately opened his mouth to take the bite, looked over at me and promptly clamped his mouth shut. Katie looked stunned. I tried not to cry.

Before I'd driven the 20 minutes to work, Katie called to let me know he'd eaten as soon as I left. I wasn't surprised. It's me. He doesn't want to eat for me. I have no idea what to do about it. We had this 2 week period where he just didn't fight, actually seemed to enjoy eating. That time has clearly ended. Being sick only exacerbated it.

Fortunately, the sickness has waned. His eating improved a bit, though he still won't let me feed him really at all. I've just been focusing on table food, which has it's ups and downs.

I did find some items at Whole Foods to experiment with. He seemed to like a chicken nugget without corn in the breading today. And the sweet potato fries were a big hit. I'm hoping that once this round of antibiotics is done with, he'll improve a bit more. (He's on Augmentin, which is notoriously hard on the stomach and certainly has caused him some digestive issues.)

The combination of fighting lung & feeding issues really had left me feeling a bit defeated. (I'm sure the lack of sleep wasn't helping build a positive disposition.) Prematurity just seemed to be getting the best of us.

Then two things happened. One was small, but brightened my whole Tuesday. Robbie had physical therapy at 11 that morning. I was working slightly earlier hours, so it happened that I was taking Robbie to daycare at the same time. His physical therapist, Jenny, pulled into the driveway at daycare maybe 20 seconds ahead of us.

While Jenny was gathering her stuff in the back of her van, I unloaded Robbie and we started to walk in. Robbie was holding my hand, walking towards the door merrily until he realized we were leaving Jenny behind. He started to whine and pull at my hand. I assured him that Jenny was coming to and to just go in the house. He wouldn't hear of it. I picked him up and carried him in. He was hysterical. As we walked in, both of his caregivers looked shocked. Why was he so upset?

I explained the situation and that Jenny would be in shortly. Robbie was still upset and since he has a cold, that meant not only did he have a stream of tears down his face, but now his nose was running like mad as well. I sat him down so I could get a tissue just as Jenny came in the door.

It was like magic. Instantly, there were no more tears. He actually started to giggle. He ran over to Jenny, staring up at her, clearly overjoyed that his friend was there. We all started chuckling. I casually asked Jenny if she remembered the days that he used to whine when he saw her come in the door. She said she certainly did. She knew he was thinking about all the tummy time to come.

"Yes, what a difference a year makes," I said.

As I drove to work that day, I really was reflecting on the difference in a year. This time last year, Robbie couldn't even roll over. Today I can barely keep up with chasing him. He hasn't had a formal evaluation yet, but Jenny is fairly certain he's going to graduate from PT with his next IFSP meeting on September 9. It's amazing.

Then a few days ago, I was offering some encouragement to a friend who is attempting to tube-wean her daughter. My friend is obviously nervous and skeptical. My heart went out to her. While Robbie isn't completely tube-weaned, I remember clearly the feelings I had before we started to truly work at it. I didn't think it would ever work.

Certainly, we have a long way to go, but when I told her of our experience from our tube-free weekend, I told her that in April, he wasn't drinking anything at all. But that first weekend in May when we went tube-free, he drank as much as 12 ounces one day. I mentioned how far he'd come in the last three months.

It hit me, then. THREE MONTHS. Three months ago, he would drink nothing. He could very, very slowly eat foods which essentially melted in his mouth. He was being tubed 3 times during waking hours.

Now he eats plenty of crunchy snack items and actually chews them. He loves hot dogs and french fries like most American kids. He even occasionally picks up a cup and drinks out of it. He did it this weekend, drinking maybe 2 oz of water two days in a row.

With the exception of a little bit of water for hydration when he was very sick last week, and a little puree out of desperation a few weeks ago, he hasn't been tubed during wake hours since April. That fact alone has changed our lives. We're now free to go out during the day without packing equipment and figuring out how to keep things cold or how to prevent tubing from disconnecting. It's incredibly freeing.

So yes, we are still at war with prematurity. Sometimes it even wins a round or two. It's easy to get lost in the day-to-day battles; how much did he eat today, how is his breathing, will he drink anything, he still isn't really talking. But when I stop and really step back and look around, I'm amazed by how far we've come. A little perspective is amazing. We've come a long way. This is a slow, dirty, tedious war, but we're in it to win it.

--Trish