Cayleigh is 9 days old
Nic & I made the journey to St. Joseph's hospital this morning. We arrived just in time for her 12 o'clock feeding and got washed up. A short, stocky woman with very short gray hair opens the door for us. From the next room (which is connected to ours through a big opening in the center of the rooms) we hear that we can't bring our drinks in with us. We have Starbucks. The short lady tells us, with a laugh, we can't drink it unless we brought one for her. Nic and I say that we were just talking about how we both were thinking we should bring them a coffee. We really were. I was telling him I thought we should have gotten them a Starbucks card - but didn't know if they could accept it. He was telling me we should've bought them one but didnt know what they liked. Irony
As for the short lady, we didn't catch her name but she tells us that our nurse is on lunch right now. We say okay and walk over to get washed up. Cayleigh is moving her arms a bit and we're happy to see that sight. Nic asks the nurse if Dr. Glasses (ok, Chang) is in because we were supposed to have a family meeting. Another nurse, Linda, tells us from the next room that she wasn't sure if he wanted to meet with us today. The short, stocky nurse tells us she will go get him anyhow. Nic and I walk over to Cayleigh and touch her sweet little arms and legs. We begin working on flexing her elbows and knees. One, two, three, four, five...ten times. She becomes very relaxed and easily moveable unlike her typical stiff disposition. We note this to the nurse who says, yes, she too has been noticing that Cayleigh is moving alot more. She also notes that Cayleigh keeps sticking her tongue all the way out of her mouth too. We look at her and, just then, she does it.
The nurse, Cynthia, who has long, sandy blonde hair, tanned skin and is a grandmother herself, comes in. Hi Mom, Hi Dad. She's got a bubbly personality and isn't afraid to tell you what she thinks is going on with the baby. She's got big, blue eyes and a warm smile. She tells us Cayleigh has had no residuals. They've upped her 20 mls and she's handling it beautifully. Whoo Hoo. *PRAISES*
We say hello. Nic asks her if we'll be meeting with Dr Glasses and she says more than likely. He heads over to talk to Linda, the short stocky lady and Cynthia. They're talking and I'm at Cayleighs side, laying my head on her bed next to her and praying over her. Telling her that we believe and trust in the Lord that she will have improved flexibility and motor skills, improved and strong reflexes and good eating. I stroke her body, her arms, her soft little legs, her belly, her hair, her face. I'm very close to her with the side of the plastic bucket down. I love the smell of my baby.
I hear Dr Glasses voice. Nic is talking to him. He comes over and interrupts me and Cayleigh. He tells us the news again.. the genetic test is normal. He's talking to us both and all I hear is that he says something is still not right. That there are still abnormalities they want test for. They'll have a neurologist look at Cayleigh. She'll need an MRI. Something about a tube. An IV and Oxygen. I'm not listening anymore.
I look at Cayleigh and get close. I tell her Do you hear him? Ignore him. He's wrong Cayleigh. Jesus has healed you. You are going to prove them all wrong. Make them eat their words. We're not claming any of that. You get strong. Eat good. Start moving all over. Cry for us.
The doctor asks Nic if he wants to see a book. Nic says yes. A book for what I ask. Nic says to see what he is talking about. The doctor comes back. He sections off a small area of pages in the front of the book. He says this is what we tested for and it was normal. He references to the entire remainder of the book. These are chromosomal issues that could still be abnormal. I see a picture briefly of a baby with feet turned inward. Thats not my Cayleigh I think. I look at Cayleigh. He's wrong. I tell him what he thinks is wrong. When is she going to be transfered to a better hospital. He tells us that they have steps to take:
1. Over the next 3 days she is going to complete her IV fluids
2. They will then wean her off of O2
3. They are going to get her up to taking 45 ml of food
4. He'll form a team of specialists. One will be a neurologist. One Physical Therapist. Him.
and blah blah blah
I turn back to Cayleigh again. I tell Dr Glasses that the Lord will heal her and she'll be doing all of those things before they get the chance. The doctor says something to Nic. Then the nurse and Doctor Glasses are standing asking Nic and I what insurance she will have. We tell them her 2 insurance coverages. Then she'd be transfered to UCSF. I ask if they have rooms for NICU parents. The nurse, Cynthia, says her cousins step daughter had open heart surgery there. They'd given the family vouchers for a hotel nearby.
Ok I say. Thats good to know.
Nic and the doctor walk off near the nurses. I am standing with Cayleigh and begin to change her diaper. I clean her umbilical cord. I pull the diapy down and am happy to see lots of pee. Thats good stuff. Her billirubin is down to 10.2 today. For her weight it'd be good to have it more at 6. I say then the high billirubin levels would still be causing her to be drowsy. That makes sense. Cynthia smiles. She tells me that Linda and her are both Christians. That they got goosebumps when they saw Cay sticking her tongue out of her mouth. She wasnt doing that before and now she is. Thats huge progress.
Nic asks her if she is going to measure Cayleighs belly. She is going to . I step aside. Nic tells me he is going to hold her first. He didnt get to hold her last night he reminds me. I know. I do a pouty face. The nurse tells us that we oughtta try to put her to the breast to encourage suck/swallowing. I ask if I should put my nipple in her mouth. She says sure, why not. I ask if its ok if she actually gets milk in her mouth. Couldnt hurt. Nic says that I should hold Cayleigh then. Get naked and put your boob in her mouth. Thats him for ya. The nurse laughs. Men
I sit down and get ready to hold my dumpling. Daddy is standing right next to us. The nurse hands me Cayleigh and we do skin to skin. I love my baby. The nurse must've asked him four times if he wants a chair. He didn't. He just knelt down besides us. He reads "where the wild things are" to her. She seems a little sleepy. We finish the book. That book sucked he says. I agree. So did the movie I tell him. Cayleigh begins using her tongue to touch my nipple, several times. Not constantly, but according to the nurse, its considered a successful session. We sit with the light off thanks to Daddys great suggestion. She has one eye open. Not really staring at anything. I put her hand up on my chest and she is totally relaxed. I even stroke her hand to open it. I lay it flat against my body. She keeps it there. No clenched fist. *PRAISES*
We talk to Cayleigh. We pray over her. She tongues some more. I have a little let down. She got some milk in her mouth. Then, I freak out a little bit. Her body tenses up and I put her out in front of me, head up in my hand. Her heartrate goes down just slightly for a second and then back up. O2 is normal. The other little number at the bottom of the monitor is normal. she's still tense. I'm watching her. I say "excuse me Ma'am" loudly. Cynthia comes over. She says she's fine. I tell her she had milk in her mouth. I dont see it anymore. Cynthia saw that and spit. Nothing is there. She swallowed it. It freaked me out - but *PRAISES*
The best gifts aren't always handed to us in a pretty 5x5 wrapped box with a big ribbon. Sometimes you gotta dig in the dirt, pull out a rock, hit it with a chisel and crack it open to find the gem. In other words, get freaked out a little bit (even though that's how it's supposed to happen) before you get the reward. Fear not for I am with you.
We wrap things up. Daddy kisses her. I kiss her. I kiss her again. I pick up her blanket and take a deep breath. Mmmmmm Cayleigh. Daddy laughs. I know, deep down and if the nurse wasnt looking, he woulda took a sniff too. He touches Cayleigh and say she is a little cold. Cynthia says ok, we'll get her warmed up. The plastic tube lid starts coming down. I get a little sad. I loved that time with her, freak out session and all.
We leave you with this... because it's one of the last images in our minds too as we left.
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