Friday, February 21, 2014

July 2012-January 2013- Our story, updated

After Noelie was born he spent almost 2 months in the NICU. It was so hard to leave my baby there everyday and just come to visit. All you have to look at is the monitors, your baby, and the staff. There is only so much you can do with your baby that is hooked up to all kinds of machines. We couldn't even hold him till he was a couple weeks old. All we could do was put our hand though the hole in the "incubator" and hold his hand.

He needed a feeding tube in his nose, IV's in his head or belly button, and some of the time he needed a tube down his throat or in his nose for oxygen. He was 5 days old when he had surgery to put a shunt in his head. This helps keep the fluid in his head regulated and draining.

I spent 2 nights in a room near the NICU, with Noelie, before bringing him home. The staff does this for a lot of parents to make sure they feel confident to take baby home. If you need help they are just a push of a button away. I made it through those 2 nights and we were ready to go home!

We were so happy! We were going to be a "normal" family. I knew it was going to be hard but nothing could prepare me for how it really was. Noelie never learned to suck and swallow, so he come with a feeding tube in his nose. I had to take it out and switch sides every 3 days. He had issues with keeping food down. He would eat over an hour. I would have to stay awake during that time and for about an hour afterward, in case he threw up. He was at high risk for food getting into his lungs so I had to suction him out if he did throw up. I would get an hour of rest then have to start feeding him again. This was 24/7. It was hell. I got very little sleep and became very irritable. I hated my baby.

2 weeks at home he ended up get aspirated phenomena and was hospitalized. We decided to do a surgery to twist his stomach (so he can't throw up) and put a tube going right into his stomach. This eliminated the tube in his nose and having to suction him out as much. This was the best thing we could have ever done. I could get more sleep and fell in love with him again.

Every month after that (till the end of January) he was in the hospital for something. He would still get aspirated phenomena. He also had kidney stones that needed to be removed and were too big to pass on his own. He got a viral infection. He was always there. Coming from the NICU, and not being able to stay with him, we were used to leaving him and just visiting. We became very familiar with the staff too. Actually, I miss them now.

The end of January was his last un-planned hospital stay. He had to wear a helmet for a couple months to correct a flat spot, but doesn't have to wear it now. He has been through a lot and is doing as well as he can be. We have gotten him to a good place with his health. He is growing well. We have gotten used to his feeding tube. He only eats twice during the day but is hooked up all night. He is off oxygen during the day. He had a sleep study done and is on a bi-pap machine at night with oxygen running through it. There is a lot of time, during the day, when he is not hooked up to any tubes. Just like a "normal" child!

Now that I have pretty much caught you up on our story, I want to focus on what it is like raising our special boy. I hope to shed light on this rare genetic disorder. I hope to give others with special children a reason to keep going. To offer advice to get through the day. To encourage them. To share in the little steps that are a really big deal.   

Please feel free to share my blog with someone you may know, or follow it for yourself. I can't wait to hear from you and get to know more people that are raising amazing, special children!

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