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Wednesday, November 20, 2013

He's Six

On the 13th of this month Nathan turned six. For most parents their child's birthday is simply a reminder of the joy they experienced the day that child was born, but for us it's a reminder of how strong our little boy is and how far he's come in six years.

It seems hard to believe that it was six years ago that Nathan was born and our nightmare began. We were first time parents with a very sick child. To say we were overwhelmed would be an understatement. That wasn't what we had prepared for when we first found out we were pregnant.

Then on the 14th we had a different anniversary, it was the sixth anniversary of Nathan's first surgery. He was first wheeled into the OR when he was less than 24 hours old. It was supposed to be a three hour surgery, the surgeon called us six hours in to get a verbal consent for a couple more things and told us it would be a couple more hours until it was all over. The surgery didn't go as planned and there had been a couple surprises, we later learned that this was just who Nathan was and he seldom had a surgery go as planned.

The 14th was also the day we got a much better idea of how long Nathan would need to be in the NICU and the result was devastating to both Matt and I. We were prepared for a couple weeks at most, we were told then that it would be six weeks - I laugh at that now, six weeks would have been great. It ended up being 12 surgeries, one 'get to the hospital now, he's really sick' phone call, and one flight to Boston or in real people time 20 weeks before he was discharged.

I'll never forget the day he came home. Matt left Boston first to drive our car and all our stuff home, I stayed to ride in the ambulance with Nathan. It was the longest ride ever and I felt like we'd never get there, but we did. They wheeled Nathan into our tiny apartment and just looked at Matt and I and asked where we wanted him, we had no idea. We had never been solely in charge of his day to day life before and this was new to us. He looked so tiny and fragile, who were we to make such a decision?! We settled on the swing. His equipment vendor was there getting things all set up and the paramedics made sure he was all setup before they left. Then his home care nursing arrived, what a nightmare they were. The nurse manager should have been a clue they wouldn't last long in our house. Then the nurse left and we were alone. Another nurse was coming at 11 for the night shift but we were on our own until then.

It was the first time we'd ever had our son at home and it was scary. I think all parents are scared the first time they're alone with their baby at home, for us that fear was magnified. We had been read the riot act by the NICU about what to go to the ER for (just about everything) and we didn't want to go back, but we did and we went back a lot that first year.

But here we are six years later. Nathan is in first grade, he loves to read and color. He loves going to school and playing with his friend. He's had a few more surgeries since he left the NICU. He's been in the hospital a lot but inpatient stays have become fewer and farther between as he gets older.

But on his birthday all I remember is the fear from that awful day. But no matter what else happened it was the day I became a mom and in the end that's all that matters.

Sunday, November 3, 2013

Too close to a year

So I was just setting up my March for Babies page and there was a link where I could add my blog, so I added my blog link. Then in an attempt to see if it worked I clicked on it and was appalled at what I saw, I haven't updated this blog in close to a year! Good grief, it's been way to long. So please excuse me if I have a lot to say.

Nathan is doing great. He will be 6 soon and is in 1st grade. He loves going to school and taking the bus. He likes to play "race" at recess, I have no idea why since he is slower than most other kids. He loves to read and is starting to read some chapter books. I'm not sure how much of them he understands since I don't think he reads them in the correct order but it makes him feel grown up so we go with it. He went to feeding clinic last November and it was a bust. He and I spent a month in New Jersey at a hotel while we went to a day treatment program, he spent his days learning to eat and I spent my days perfecting the art of sitting in a waiting room. He did great while we were there but the clinic had awful follow-up and we had some trouble keeping up with it without the support of the feeding team. Eventually Matt and I decided that spending hours begging and pleading with Nathan to eat wasn't worth it to us and we stopped. He will now eat yogurt, applesauce (a new addition to the food line-up) and pudding. He also likes to drink chocolate milk, I call all of it better than nothing so for me he's doing great.

Trevor is a beast, and I mean that in the best possible way. He is the complete opposite of who Nathan was at that same age. Trevor loves to run around, jump off things and doesn't understand why I won't let him climb the toy cabinet to get whatever toy is on top of it. He is all boy all the time. He calls his forehead his "boo boo" because more often than not he has a bruise or cut on his forehead from the latest tumble he's taken. Trevor loves to go to the bus stop with us in the morning and wave goodbye to Nathan while he goes off to school. Once we get home Trevor takes the back cushions off the couch and gets a blanket so we can do "snuggles" while he eats his breakfast (don't judge me, yes he eats in front of the TV and I love the cuddles I get because of it). He is at a great age right now. He also loves our cats, unfortunately the sentiment isn't returned and he is frequently hissed at. One of the cats swats at him all the time and he thinks the cat is playing a game with him. The other cat likes Trevor but on his own terms, he does let Trevor pick him up though - that's how I know the cat must be desperate for attention.

Matt and I are busy getting the nursery ready for baby girl, please read that as I'm giving orders and Matt is following them in an attempt to keep his pregnant hormonal wife from crying about nothing. We (ha, Matt again) just finished painting the nursery and are using the same furniture we used for Trevor so that will all be set up soon. I recovered the glider we have so it looks cute in a girls room. Now I just need to decorate and make a few more things, who knew one day I'd be able to sew a crib skirt without hesitation?!

OK, that's the update I have for now. Nothing all that exciting has happened lately. Well, unless you know that Nathan hasn't been to the ER in 6 months! I know to most people that's normal but for us it's huge and a cause for celebration. I'm hoping we can make it through this winter and make it 1 full year without hospitalization, thats a pretty ambitious goal but I'm hopeful.

I promise to update more often than yearly from now on.