Saturday, April 28, 2012

The New Reality

Seeing Michael doing so well is like a breath of fresh air. I woke up this morning knowing my little guy has been loving on his nurses. The nurses get so excited when they work with him. They also get bummed when I walk in the door just before a feeding because that means they don't get to cuddle and feed him. He's going to be a little heart breaker when he grows up. The girls are already loving him.
Today was the first day Jaron and I started cleaning up the house a bit. I've been able to keep up with dishes and laundry here and there and get some sweeping done but today being a Saturday and it's Spring!! I wanted to get some nice cleaning done. And we did! We woke up early thinking it was Sunday of course, our days are so mixed up. So we stayed awake and got an early start. Knowing Michaels nurses has been great and made me a little more relaxed to wait until later in the day to come see him. The house needed our attention.
I got to blow bubbles with Zoey out front and she loved spending the day with us at home. She's relaxing as well and I am SO excited to introduce her to her brother this Tuesday. She finally gets to meet him after a full month. She is going to love him! After a month of still hugging and kissing the "baby" in my belly I'm hoping after she sees him that she'll realize that the baby is here. It's going to be weird getting into the new reality at home. Changing diapers, bathing him by myself.. Midnight feeds! Oh my! Does the hospital rent out nurses? or could I maybe take one with me when I go home? Children's Hospital is Amazing! I couldn't be more comfortable knowing they've got control. The back and forth trips have definitely been difficult and the drive is long but again I am thankful for living so close. This has brought so many communities together and our families have never been closer. I heart my life :)

Oxygen off

 The last 2 days have been very good for Michael. He has been weening down on things all week, and today he finally got his oxygen off - for the first time since surgery! He looks awesome! All he has in is a feeding tube now. They are feeding him every couple hours through the tube and they are also starting to try bottles. He is handling everything really well. He looks at us and responds to our voices when we talk. The fear and worry about another surgery seem to be contained for now. His arrhythmia looks like it's under control. He has been in a normal sinus rhythm for a about a week. I think the only thing he is on now is the arrhythmia medicine, everything else has been turned off. His oxygen is still in the 90's and his respiration doesn't look as bad as it did last week. He also got to wear his first piece of clothing today. We are both getting excited to finally take our little boy home.
The reality of having a baby with a heart condition is starting to worry me a little bit. I don't know if I will ever feel comfortable going on a road trip again. I don't think either of us are ever going to sleep. I don't know if I will trust anyone to watch him or take care of him. There are just so many things to worry about, but I also don't want him to be the bubble boy. I want both my kids to have a life full of experiences and adventures. I am hoping this mitral valve will just grow with him and start functioning better as he grows. I am so excited to see him and Zoey together. This is a roller coaster ride.