That's just her

Wednesday, March 30,2011

Today was better than yesterday. Nic and I headed up to the hospital to see Cayleigh around 10:30 this morning and stayed with her until 2:00. We gave her a bath in her crib and she really enjoyed it. I cleaned out all of her crevices and creases and then gave her a rreally nice rub down/massage with her baby lotion. She did really well the entire time except right at the very end when she desated - BUT she brought herself up all by herself.

I asked Sue if it's normal for babies to desat and then bring themselves up on their own. She kind of got this look on her face and then she said that she's learning about Cayleigh as she cares for her. That her situation is unique and that, in regard to her secretions, desats and little quirks, "that's just her". She is her own, unique little puzzle and we are piecing her together, figuring out what works for her, what she likes, what she doesn't like, what she needs and so forth. I will say that when she desated I didn't freak out for the first time. I just sort of watched her and then was prepared to suction her. That's a big step for me. I'm ready for this challenge - through Christ who strengthens me and gives me wisdom. Please pray that my husband and I be blessed with wisdom, patience, peace and a real sense of what Cayleigh is needing - as only He knows.

We left her be without picking her up because we wanted her to get some rest. Her heartrate was still a little bit high today. We asked the nurses about this, and also the neonatologist, but they all didn't seem to have any real reason as to why it's higher. The doctor mentioned that by the time they start to find out why it's higher it ends up going back to normal. Although that doesn't seem good enough to me - I am going to go ahead and just accept the answer so that I have one less question in my mind.

We did meet the neonatologist that is on this week. He came up while we were talking to the nurse, Sue, who has been taking care of Cayleigh the last 2 weeks. The guy just stood there, looking like he wanted to interupt us, until I said hello to him. He introduced himself to Nic and me (he had, apparently, met Nic briefly before) and talked about wanting to sit down and talk with us. ANOTHER meeting. This one is going to be Monday at 11 am. Meetings make me nervous, really nervous .. but, you just have to bite the bullet.


So Nic and I came back to the house and made some lunch for ourselves, then headed up to our room so I could pump and he could rest his ankle. He's been having alot of pain and it's catching up to him with all of this walking around. We do walk..alot. Everywhere we go - but its so, so much better than driving. I sit in the passenger seat and get road rage. The people here ... well... it's just crazy. If you've never been here you wouldn't understand. If you have, then you do. That's all I can say - its just crazy.

We headed back up to the hospital at 4 and saw our Cayleigh laying there. This time, though, I felt like I had an answer to all of the questions I've been asking myself, and doctors, over the past few weeks. in the past several weeks I've been doing extensive research on all of Cayleighs many symptoms. I didn't know what was going on with her as far as what she has, what can be done to help her right now or what her future is going to be. I told Nic today that there have been nothing but questions for me since she's been born. TODAY...yes, Today, I was pumping and doing more research and then I found it. Yes, the it that has answered my questions (as far as I'm concerned). It is called Worster-Drough Syndrome. It brings together all of her many symptoms and ailments..and it gives me some hope. And so, I wrote down everything about it and I took it to the hospital with me. As soon as I got there I asked to talk to the neonatologist. She came down and I explained everything about it. She had never heard of it - but took all of the information I'd found and said she was going to look into it. What's funny is that I found the information on a UK medical hospital website. I feel like I'm not so alone anymore. Mind you, only 1 in 300,000 babies have been diagnosed with PMG. So anyhow - I guess this will come up at the meeting on Monday to see whether they think this could be whats ailing her.

Nic called to check on Cayleigh a few minutes ago. She's doing okay. The nurse Liz said that she's had a few desats since she's been on. She was changing her diaper right now and her heartrate was 180. She said she had to suction her stimulate her. I wonder if she is even giving Cayleigh time to bring herself out of it. Sue, the nurse who is on during the day and has had Cayleigh a few times now, allows Cayleigh time to bring herself up. It's a little disheartening to hear - so please keep her in your prayers.

So this is a basic rundown of her day - she's doing good as far as I'm concerned. We are going to ask for continued prayers for our sweet Cayleigh. Please pray that she have stable heartrate, stable oxygen saturation and that she breathes easy. She's our sweetheart and we adore her.. so please keep her in your prayers.

Please also pray for us, for God to sustain us, keep us close and as a united force. That we have patience, peace and wisdom.

Please pray for the doctors and nurses who care for her to have wisdom and compassion.

Please pray for the kids as they prepare to come here to stay. That they have peace, that they know they are loved, that they feel secure and that they are well behaved.

Thank you all for your prayers!