Michael is doing good, we can hold him whenever we want now, and he is pretty stable. We have a couple new neighbors in here though. They are in the same situation were in a couple days ago, one of the babies is a bit older and they have to keep giving him shots. You can tell this place freaks him out and he does not like getting poked. There is also an older couple here with a brand new daughter, she has issues similar to Michael's and she had her surgery this morning. Her parents were able to see her for the first time around 9pm. I tried to warn her father about the 'accessories' but I don't know if you can really prepare anyone to see their brand new child like that. Just walking past her little room, I started crying again. It's so hard to look at a sweet little soul going through so much right when they come into this life.
I appreciate every one of you following my families journey through this. I would like to ask you to please pray for this sweet little girl tonight, she still has all her doctors around her, including one of the surgeons. I can't imagine the fear her parents are experiencing now. This is a hard place to stay, even though Michael is doing great. It's so hard to see other families going through this. Please keep your hearts open for this little girl and her parents. I don't know any of their names and have only talked to them twice, but I know they can use all the extra strength they can get right now.
Monday, April 9, 2012
Michael has been hitting all his goals today! They took him off the high-flow, took him off his blood pressure medicine, and took out one of his lines. They also re-arranged his little area so it does not look nearly as scary as it did before. We are able to hold him and feed him now. They let me hold him for the first time since he was born, it was awesome! He is such peaceful little guy. He just sits there and koos like a little puppy. He started opening his eyes about 30 minutes ago, he was looking all around and very calm. He is so awesome! Bryttney is just loving him, she needed this moment. He is doing great and the nurses said he is exceeding all expectations. Part of his right lung is a little collapsed but they said that is pretty normal for this type of procedure. They have him propped up so that side is a bit higher. We will probably be moving him out of intensive care tomorrow or weds. Will keep updating as he continues to progress. Thank you so much for all of your support.
Today was planned for Zoey. We'd planned a day at the Butterfly Pavilion and a normal night at home in bed with our little girl. Last night we received a call from Grandma that Zoey had started running a fever of 102. Up until now I've felt pretty put together. A little guilt was already in the back of my mind because I've been at Children's more than at home. My gut reaction was to run home and hold my little girl to help her rest with her Mommy. The next moment I was stopped. What if it's something contagious? Would I be able to risk going home to Zoey with the possibility of not being able to come back to Michael? Now my world is torn. I have to chose which of my children to take care of? Really? Zoey is old enough to know if I'm there or not, and Michael is recovering (fast) but needs to learn how to eat and I'm finally going to be able to hold and feed him this week. My breakdown, My children. I need both of them and both of them need me right now. Where am I supposed to be? Jaron began to pray for me as I was unable to through the sobs. Shortly after we were both able to fall asleep and it was probably the best sleep we've had since we arrived at Children's. We called Grandma this morning to check in and decided it was best to have her take Zoey into urgent care to have her scanned for and bronchitis or pneumonia. Until we hear back to see how our little girl is doing we've decided to stay here with Michael.
Milestones have been made today. We arrived at his bedside to see that only the picc line remained in his left arm for minor medication and a small amount of O2 through his nose. They removed the bandage from his incision so all that's left is the glue holding it together that will chip away as it heals. He had his first bowel movement which surprised the nurses. She said he was healing like a champ! He began to eat again last night but they'd like to see him taking in a little more before I begin to breast feed - Tonight. They wanted me to hold him which made me nervous. What if I bend him wrong? What if he's uncomfortable? The nurses decided it was best so we moved a chair right up next to his bed so the cords could reach.
As I held him he coo'd. It was a scratchy sound but it meant comfort. This was my first moment to really "see" my son. Check his fingers - check his toes - see how fragile his little hands were but at the same time feel the strong grip he had. I felt his ears and caressed his nose and rubbed the peach fuzz on his head for luck.
His eyes were trying to open and his mouth was searching for food. We warmed the bottle to feed him and once he got it he began to chug it down. He drank it so fast the he started to choke on it. I freaked out and started turning for a nurse at the same time trying to pat his back without bending him or moving him. He quickly recovered and started looking around the room. This only lasted a moment before he was back asleep. He'd had enough and was comfortable again. The OT's (Occupational Therapists) came down that same moment. They see how his coordination is doing after surgery and to make sure his throat is healing after the breathing tube. They also wanted me to burp him. This was a no no in my mind. No way am I going to sit him up to burp him, or lay his chest to my shoulder. They helped sit him up and he started to fuss so they started moving him to my shoulder. I patted his back a couple times and he began to cry. I told them I was done and I wanted to lay him back down. They were happy with the progress he's made and gave me the ok to breast feed later on in the day. This also means I'll be working on his latching and coordination throughout the night. The night I intended to spend with my beautiful daughter.