Up and Down, Up and Down

Oh my! The other night when Justin and I were driving home from the hospital, I commented with a sigh, "it can only go up from here, right?" One thing is for sure- there are a lot of ups and downs with this thing. It has not been that fun of a ride for us. I have to keep reminding myself that trials are supposed to be "trying" and this has been a far cry from easy. The words,"Just Hold On....the Light Will Come." (song by Michael McLean) keep running through my head.

And that's easier to do on good days. Yesterday was basically an up day...

She had an eye exam, which that is not fun to watch and is stressful for her. However, when the Dr. reviewed results with me, her vessels seemed less engorged and had grown about 1/4 cm (He likes about 1/2 cm/week growth, but something is better than nothing.) Since they did not get worse and we saw a little improvement, he let us hold off for another week to see if things progress in a positive direction before deciding on the Avastin injection. I felt good about it. It answered our prayers in a small way.

 

Reese weighed 4 lbs. 13 oz. She's been on a weight gain lately. That's good to see her growing- she's more than double her birth weight now. I got to put her in her first set of clothes (that belong to the hospital, but still..). Preemie clothes really will not fit her now- she's pretty head to foot in this one. They ordered for her isolette to now be raised up and have her keep her own body temp (dressed and swaddled). I got to hold her, my friend stopped in to see her. I had a nice discussion with another NICU mom about how our babies have been off of meds for a nice stretch now. We were talking about how if we could get the eye problems figured out, it seemed like we were getting on our way. Reese took a full feeding out of a bottle. Yesterday was exactly one month until my supposed due date. Seemed perhaps that the worst was behind us.

I left the day on a pretty good note. This is how little sleeping beauty looked when I left her for the night. She was settled in, quiet and comfortable. Overall, it was a good day.

 Today....well, its been more of a down. Last night when I called to check in on her, the nurse said she was breathing rapidly. They had to bump her oxygen up to 4.5 liters (which gives her more flow- it's like an fan blowing up your nose on that high). She has been on a 4 liter flow, so going up is not that good. She was requiring about 39%  and last night she was up as high as 55%. This is not progress either. So....there were a few things I was suspecting 1. She hadn't pooped all day, which affects her oxygen, 2. I knew her blood counts had been border-line low, which affects her oxygen 3. Wondered if her nose needed suctioned out (they had already tried that) 4. Wondered if she was stressed a little adjusting to the isolette being raised. So...I went to bed last night worried/wondering what's causing the rapid breathing.

 

Today when I arrived, it was confirmed that she needed a blood transfusion. I'm not afraid of blood transfusions- she's had probably 15 of them already so far, I've lost count. These little ones have a hard time creating red blood cells. Transfusions help her do what her body can't keep up with very good yet. It will help her. It's just discouraging for one more thing to happen to her, especially because we're really wanting to focus in on her eyes. Every other thing that happens, you wonder how it will affect what's already going on with her eyes. And I'm already freaking out about the eyes! Plus to get a transfusion requires a cut in her feedings- she will now only get about 1/4 of her full feeding, it also requires 2 IV's that they had to get started in her. It takes 4 hours to pump it through and it's just overall exhausting. On top of that, they are giving her Viagra every 6 hours. Yes, viagra to my 2.5 month, 5 lb. baby. It's to help relieve pressure from the vessels in her lungs- they think this will also help her breathing along. I know its all to help her, but I cringe when I think of all that has to be done.

I felt so bad for her today. She was restless and uncomfortable in her isolette. Her oxygen was all over the place and she kept requiring more. I attempted to hold her to see if I could comfort her, but then her stupid IV started leaking all over the place. So...we put her back in he isolette, changed her clothes and gave her a little sponge bath, set her under the warmer for a bit, changed her diaper, readjusted the IV, sucked out her nose and got her some warm blankets. She seemed to feel more comfortable after that and then I held her again and she settled in nicely. Poor baby. They started her transfusion shortly after that. This cute bunny hat was given to her by a grandma of a former NICU graduate. People are nice.

So....up and down we go. Where it stops...no one knows. Hoping that this blood perks her up a bit and that we start seeing some progress soon. Please keep praying for her.