The best day of the year…

11May06

I’ve debated writing this post. Quite frankly, I don’t feel like I have the writing skills to adequately express what I want to express. I’m not sure that I can do it anything close to justice. But, I’m going to try…

Today is my niece’s birthday.

Five years ago, my sister was 25 weeks pregnant and here for a visit. Everything was cruising along normally. But, on the day she was leaving, she began feeling some discomfort in her stomache. It didn’t seem like a huge deal.

She went to the hospital when she got home, and they initially told her that it was most likely a gall bladder issue. But, the doctor she saw didn’t like the look of some of her numbers. He transferred her onto a bigger hospital in a bigger city. Thank God he did. There were two doctors on duty that day, the other one is notorious for trying to do everything himself and he would have been unlikely to transfer my sister. And this would be an entirely different kind of post.

The bigger hospital ran all their tests and my sister was diagnosed with HELPP syndrome. Don’t worry if you haven’t heard of it. Be thankful. It was the first time I had heard of it too. It is something that is allegedly rare, and usually occurs much later in pregnancies.

The amount of time that passed next is a bit sketchy in the fog of “Holy shit…” that is my memory of that period in time. But, before long they were giving my sister steroids for the baby’s lungs. I really didn’t know what that meant at the time. It wasn’t long before I found out.

I hadn’t even thought much about being an uncle yet. I realized it was going to happen, but my sister wasn’t even showing at the time. I was excited in theory, but it was still seeming a bit hypothetical to me.

Suddenly I was thinking a lot about it. And it wasn’t just the baby in danger, my sister’s “numbers” were getting really bad.

My parents were rushing to the hospital. For reasons beyond my control at the time, I couldn’t go.

I hadn’t cried since I was nine years old. And even then they were tears of anger. My older cousin was beating me up. (Nothing serious.) I wasn’t going to rat, but I wasn’t big enough to do much about it.

But, I cried that day when I heard that the baby had to come out. It was such a foreign feeling. A strange, foggy sense of helplessness.

A lot of my initial thoughts were on my sister and her safety. We fought a lot as kids. More than you can imagine. My Dad recently told someone that he was sure that when we grew up that we’d never speak to each other. At some point that went away and we eventually got along fine. Though we are a small family – I only have the one sibling – we aren’t at all touchy-feely. Not a lot of hugging. Not a lot of talk about anything remotely related to feelings. Granted, it is possible that everyone else was doing it and I just didn’t know. But, on this afternoon I was paralyzed with fear about my sister’s well-being. (To this day, we’ve never discussed this part either.)

As the day stretched on, the doctors kept a close eye on my sister’s numbers. They were waiting for the best possible time that would provide as little risk to my sister as possible, and as much hope as possible for the baby.

I remember praying a lot. Praying and negotiating.

Then the call came from my Mom. I had a baby niece.

It hit me. Hard.

This little one was suddenly the most important person in the world.

This is where I really wish I was a better writer. It was a life-changing moment. I loved this little girl SO much and I hadn’t even met her yet.

Reality started to sit in as my mother gave me more details. My niece weighed 1 lb, 6 ounces.

1 lb, 6 ounces.

Even now, the number staggers me.

Our little squirt was going to have a tough journey ahead of her, but she was here now.

My memory gets a little fuzzy here. I had a rough evening in here someplace. It involved much shortness of breath and many chest pains. It also involved me screaming like a lunatic at a nurse on the phone. “No one is answering!!!! Why is nobody calling me?!? There is nobody left in Cape Breton!! For the love of God, you HAVE to get someone there to talk to me.” The nurse found my patheticness amusing and went to my sister’s room and gave them all a much needed laugh by telling them what I said.

Now, I’m not sure if my breakdown was because I just hadn’t had updates on how my sister and niece were doing the first night, or if it was because of what came next…

Three days after my niece was born, they discovered that she had a perferated bowel. And they were going to have to do emergency surgery.

The news was just so jarring to me.

How could this possibly happen after all she’d been through already? How could they operate on someone who weighed 1 lb, 6 ounces?

But, operate they did. And she fought through that. She ended up with an ostomy bag on her right side. (Something that was later reversed in yet another operation.)

After surgery she LOST weight. She was down to 1lb, 3 ounces.

This is one tough little squirt.

I remember clearly my first visit to see her in the hospital — where she spent 3 months or so, working her way up to the 5 lb mark needed for her to go home. She was in her little incubator. SO tiny. Words can’t even express. It is something that you literally need to see to believe. And even then, you can’t wrap your mind around it.

She had all kinds of little tubes running everywhere. And I was in love.

I froze in my tracks when I stepped in front of the incubator. I was all scrubbed up and wearing a gown. I couldn’t speak. Finally I managed to blurt out, “Hi. I’m Uncle Pete. I’ll buy you a pony.” My Dad cracked up next to me.

Only two people were allowed to go in and visit her at a time. The rest of my family quickly realized that I wasn’t going anywhere, and they took turns being the other visitor. I just continued to stare at her.

I guess it was a couple months later – when she was a little over 3 lbs – that I first got to hold her. I was so afraid. She was so little. But, my sister put her in my arms. Even though weight-wise it felt like I was just holding a blanket, it was one of the greatest moments of my life. I didn’t ever want to put her back down. Of course, I was so afraid to hurt her that I sat perfectly still and my arms were beginning to cramp. (I am smiling like an idiot typing about it even now.)

My sister spent most nights sleeping at the hospital at first. Her husband was working crazy shifts and then driving 2 hours to see his pride and joy at every possibile opportunity. My niece’s parents were as strong and impressive as their little girl. (Something else I’ve never told them.)

When she was just a little bit under 5 lbs, my niece was allowed to go home. After only spending a night or two at home, my sister surprised me by bringing my baby niece to visit me. I couldn’t have been more excited. I spent the first few hours of her visit, in a chair, holding the little punkin close to me. Again, just staring.

I also remember the first night my sister and husband went out to a social event. I stayed in with my niece. She was in her little crib dealie, with a fully pimped out monitor that kept an eye on everything but her taste in music, and I sat there for hours watching the display. If her heart beat sped up, so did mine. If it slowed… well mine sped up again. Even with this high-tech piece of equipment, I’d get up every ten minutes to go look to make sure she was still breathing. I did this by watching the blankets move, of course.

I’d like to say that in five years I’ve become a little less over-protective. I’d like to say that… But, the truth is that I’d throw someone down a flight of stairs for looking at her the wrong way. I’m not kidding.

I call my niece every single day at 6 pm. I don’t care what is going on. Everything else gets put on hold. I don’t care where she is or where I am. I call her every single day. I ask her if daycare was fun. I ask her if I’m a pain in the bum. (Always gets a “Yeeeah!!”) We practice counting to ten. It is my favourite part of the day.

My niece has Cerebral Palsy. She can’t walk. She can only say a few words. (“Unc” is one of them!) Little things that most people take for granted – like picking up a toy block – are so much work for her. And she really does work at it. She is still the toughest person I know. It is impossible to tell how much developing she’ll do or how long it will take. But, she is smart. She is funny. She has the cutest little evil sense of humour. And we are the luckiest family in the world to have her.

My niece is five years old today. And I love her very much.

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