11 Months Old Today

Harlie is 11 months old today. Hard to believe. I remember what it was like when Murphy was 11 months. He was so close to walking, eating table food, no more bottles and no more formula. Oh, how different it is with Harlie.

Yes, we've had a couple of crazy days. Just when I think we are getting a handle on things, life goes out of control. This has definitely been one of the more difficult hospital stays so far.

To recap:

We were getting Harlie ready to go to the pediatrician's. She was having a lot of trouble breathing and turned blue. It seemed to take all her might just to take one breath. I didn't want to call 911. I dialed, and hung up. I just wanted to believe that she would get better on her own. But I know what respiratory distress looks like, and that was it. They called me back (since I hung up) and I felt like a tool. Told them what was going on - trying to keep my voice from shaking and they said they were on their way. It only took a few minutes for them to get there. And we left.

There was a lot of confusion at the ER. Luckily, a nurse who knows us really well was there. They thought they were going to have to put her on a vent, but finally they got her straight. Then the whole helicopter transfer happened. I tried to tell them that wasn't necessary. I just felt like it was overkill to tell you the truth. I guess I just didn't want to believe that it was happening. I just wanted to take her home. But, they said it was too risky to do anything else. Without knowing what caused her distress and considering it had only been 24 hours since she was discharged from a hospital, it was the safest thing to do.

The ride was way cool. Too bad it was under those circumstances. Yes, I sat in the co-pilot seat. And as I have been asked by a few, I got to wear the headphones with the talking piece. I wish I had my camera. Harlie did great. The guys were really nice and the pilot pointed out things to me throughout the trip there. We got to DC in less than an hour. She was admitted to the PICU. You can't sleep in the PICU. Since I had no way to the RMH, I slept in the waiting room. It really wasn't that bad. (it was bad, actually, I'm just trying to make myself believe it wasn't that bad.)

Friday was a very busy day. I don't even know where to start. As far as what got us here, my theory is that the breathing treatments she was on (every 4 hours) dried up her secretions too much. I think she had some mucus plugging. After some time with no breathing treatments, her secretions slowly got back to her normal and she really seems fine now. The funny thing is that I was going to call Pulm. that very day to ask about that because I thought at the time that she was too dry. I am really learning to trust my instincts.

I've spoken with her pulm. docs up here, and they agree with my theory. So now she is on Pulmicort only twice a day. They stopped the other one completely. So, I guess since we're back, for some reason, everyone seems to want to take care of this whole O2 requirement and lung wheeziness for once and for all. They believe that her reflux has caused her to aspirate, causing damage to her lungs.

She went over 31 hours with no food and her lungs sounded better already. So, she had a CT scan of her chest, upper GI, and they put in an N-J tube (nasal to jejunum) tube. Next week as soon as they can, they are going to change her current G-tube (which goes into the stomach) to go into her jejunum instead. This will put food straight into her small intestines, which will reduce her vomitting by making it harder for it to come back up. Hopefully she won't vomit at all. I really can't imagine life without her vomitting.

At first, I was very sad. It just seems like instead of things getting better, we are learning more bad stuff, and going farther and farther from normal. But, if this keeps her from aspirating and saves her lungs, which will make her a better candidate for the Fontan (next heart surgery), well, then, I guess it is a good thing.

And I know that there has to be a down side to this. You have a stomach for a reason and bypassing it must have a consequence - but I guess we'll have to cross that bridge later.

Unfortunately, something went wrong with the machine and the CT scan didn't come out. So, they are going to repeat it today. The upper GI was normal. And the NJ process was terrible. He said that it normally takes him about 2 minutes to place one. It took almost one HOUR!!! He tried 3 separate times, and on the last one he said if he didn't get it, it wasn't going in. But they really wanted her to have it so she could be fed again. Luckily it finally went in.

She was so good. I know it is hard to believe, but she is so darn good. She just lays there and waits for them to stop. It breaks my heart that she's so used to this kind of life.

So, next week she'll have to go in the OR to have her g-tube changed to a g-j tube. Hopefully we'll get everything straightened out and it will be only a temporary thing. She's supposed to have a milk scan done as well. I think once that's all done, we'll be able to go home.

My mom came up yesterday to help me so I could leave to shower and eat, etc. Then today, Tom brought Murphy up. We will stay at the RMH tonight and let Tom stay at the hospital with Harlie (she's now back in the Heart and Kidney Unit).

Today while my mom stayed with Harlie, Tom, Murphy and I took the Metro to the Smithsonian. Murphy absolutely loved riding the metro. And he enjoyed the dinosaurs and the shark 3-D Imax movie. (not for very long though, because he fell asleep - and I did, too.)

The whole time I was there I wished that Harlie could be with us, too. I see so many families with their children and I just wish things could be different for us. I wonder what Murphy thinks when he sees other families with their babies, while ours isn't with us. I just have to hope that the next few months will bring her and us more freedom and more normalcy.

Well, we have to get back to the hospital. I'll try to update more later.

Take care,
Christy