Hoping for Another Bright Day!

Thursday March 20
7:15 a.m.
We took a nap yesterday evening, and then woke up around 1 a.m. to go back over to the hospital. We were told we could hold Cayman later in the evening yesterday. So we decided to take a nap in the late afternoon and then go back to the hospital late in the night. Doing this schedule would help Mike get his body ready to return working the night shift this weekend. With so much excitement we went to the NICU, but found out we couldn't hold her yet. She had been very agitated all evening and the nurse thought it best for her to not have any extra stimulation. It's an entirely different world in the NICU. Normally it's always so healthy for babies to be held and be stimulated, but that's not always the case when a baby is in the NICU. They have so much happening in their tiny bodies...healing, drugs, etc. that holding them can actually be a negative experience for them. So we disappointingly but patiently wait till we can hold her. Maybe later today. Her body is going through a lot of adjustments right now: healing from 2 surgeries, getting fed for the first ever, decreasing her Morphine, the fluid draining in her head, breathing on her own without the ventilator, etc. Once she is resting more comfortably, less agitated, then we can hold her. We want what's best for her, and like I've said before, we want to hold her at a time when she'll enjoy it too! I know there's a lot of people praying for her and specifically prayed that her shunt (drainage tube in her head) would work and drain that fluid off her brain well. She must have received too much prayer because the shunt is working so well that the Neurosurgeon has to readjust the valve in the shunt to slow down the drainage because it's draining too quickly! :o) The shunt is working so that's awesome. You can see such a difference in her forehead and the top of her head where her soft spot is. I'm not sure if this is something you can identify if you've only seen her in pictures and as much as it's very evident in person. We could definitely tell she seemed fidgety last night, like she was uncomfortable or something. The nurse changed her wet diaper. She really does not like having wet pants. She doesn't cry, she just squirms a lot. Then it was time for her dose of Morphine. But she was still fidgety and fighting sleep. I gently placed my hand on her forehead and started to sing to her. Cayman shut her eyes and went right to sleep. I love that mother-daughter moment we had! It felt so good to be able to comfort my baby.

2:00 p.m.
Cayman's Morphine was decreased some more and her feedings increased. She's up to 4 ml an hour of breast milk...still a very small amount. She's doing so well. We haven't held her yet. There's a lot of visitors in the NICU today and she's a bit sensitive to all the noise especially now that she is so much more alert not being doped up on all that Morphine. The nurse (Debbie) said she has been quiet and sleeping most of the morning, and right when Mike and I got there she woke up and was very alert. It's so incredible how well she knows us! The nurse said she suctioned her mouth to get out all the spit and mucous and Cayman got mad! She can't really cry right now because her throat is sore and hoarse from the ventilator being in there for so long. But she went through the actions of a mad cry and turned all red. She was taken off her antibiotic today.

4:00 p.m.
We finally held Cayman! It had been 10 days since we last held her! She loved it! She went right to sleep in our arms! She wasn't sure about the rocking motion . Her eyes would pop wide open whenever I would rock her. But then she got use to it and it seemed to soothe her. 7:00 p.m.
Tomorrow Cayman's bandage on her head is coming off! From Neurosurgery's side of things, she's ready to go home. We're having a meeting tomorrow with the Social Worker and the rest of Cayman's doctors (she has so many it seems) to discuss from their perspective when is Cayman ready to go home. We're so excited to hear the medical people starting to talk about it. It's one thing that Mike and I have not inquired much about. Things can change so quickly and we were always afraid of having a time in our minds and then it might not happen, the disappointment feels that much greater. So we've taken things a day at a time...accomplishing each hurdle as we go. It's so exciting to me to think that the best scenario of Cayman's stay in the hospital we were always told would be 2 weeks. It sounds like we're very close to having it be there. She's so incredible. Besides all her birth defects...or maybe I should say in spite of all her birth defects, she is a very healthy baby. She's strong and handles things so well. Thanks for all the prayers, love, and interest in our little girl! I have to believe that is what has been carrying us through this time!

11:00 p.m.
We got a pacifier into Cayman's mouth! It was not easy! She would push her lips together so tight when we'd try. We tried dipping the nipple into water and that helped some but she still wouldn't open up wide enough to get the thing in there. We want her to practice sucking so hopefully oral feeds will go well for her. Finally how we got the pacifier in her mouth is, I put a glove on and worked my finger into her mouth until she opened it and Daddy quickly stuck the pacifier in her mouth before she had a chance to tightly close the gates on us. She had it in there for only a few minutes before she spit out. She seemed to suck on it but it was pretty weak, so we'll have to keep working on that.