So I get rolled to the room and they inflate the bed again like a life raft. I look around this small room and I'm happy to see they have a moderately sized 'comfy' pull out couch thing for Nic. We also have a large flat screen tv and private bath. It's like a little apartment .... except for all the machines and nurses and people bothering you all the time. Oh, and then there are the sounds of babies crying all the time. That, in itself, was the very hardest thing to deal with. I'd be torn between being stricken with sadness when I'd hear a baby cry & talking myself out of it and into praising God for that new life. There was alot of praying.
I got the smallest amount of sleep I've ever had while in the hospital. Literally a nurse would come in, then a welcome person, then a birth certificate person, then the person taking my order for food, then the blood draw person (saw them more than I wanted to), then housekeeping (they want to fluff my pillow) and whoever else decided they wanted to walk their happy a##es into my room in just enough time to prevent me from ever falling asleep.
I don't remember at what point I heard, I think it was from Nic, that the doctor had sent off for testing for Trisomy 18 for Cayleigh. I hear that 90% of babies with this horrible disease do not live longer than 1 year. Many do not make it through the first week. Nic had the nurse give him a print out - which I didn't read - and he'd brought it to our room. I rebuked it, and I still do. I claim Life over my sweet baby girl. I have never been so certain in all of my life but to trust in God and that He didn't have this disease in mind for our Cayleigh. Despite the pain, I went to go see my sweet girl that first day in NICU. They wheeled me up and I fell in love with this tiny little bundle. Despite all of her valves, wires and pipes she looked perfect to me. I hear the words 'she doesn't look right' and 'she has low set ears, the forehead doesn't look right' and things like that over the next day. I finally meet her doctor. I look at him and say "Low set ears? You mean like this?" and I move my hair to show my low set ears. I say "Small sloped forhead? You mean like this?" and I point to my small sloped forhead. They were also concerned about her left leg. They say the bones may be stiff or fused. That didn't look normal - but we prayed.
With the help of an outstanding nurse (TJ) who showed us some physical therapy we could do with her leg, her leg has since become completely normal. (PRAISES) Cut back to the doctor standing near my babies plastic incubator. I give him a look as if to relay the message "do NOT speak about my child like that". I put hands on Cayleigh and I pray. I claim life for my child, I talk to her and tell her to get healthy.
While I visit my daughter I learn she has jaundice. The level is 14 and normal range high is 10. They put a small UV light over her 'chamber'. She has on these little black glasses and I laugh... I immediately here the chorus "I wear my sunglasses at night" and I make up a song. It is to the same tune but the words are a little different.. " I wear my sunglasses at night, so I can, so I can be in the billirubin light". The next day her level goes up to 15.2. They add a Billirubin blanket. this little glowing blue pad that lay under her in the plastic kingdom she currently resides in. It makes her pee glow when I change her diaper. I lay hands on her and pray. The next day its down slightly to 14 again. As of this current moment they haven't received results back on her current levels. We're certain it will be low again and then completely resolved sooner than later.
For the first 2 days they tell me she doesn't need to be feeding yet because she has an IV. The third day and after she will get her feedings through the 'green tube' because she doesn't have a sucking reflex (yet). The tube goes into her mouth and down to her stomach. I hate the green tube. I take a picture of daddy feeding her for the first time. It's a process to get her hooked up. Initially, the nurse or us would hold the little tube to determine the rate at how fast the food is intaken. Then nurses change. I notice that each nurse is giving her the food at different rates and it bothers me. My husband speaks to the Dr and suddenly she's on a machine that determines the rate & time it takes to dispurse the food. I feel better about that.
As she's in her little plastic bed they decide to start laying her on her belly. This way she gets some therapy in bending her legs, etc. The first day they do so I notice that she has several bruises and scratch marks all over her back. From her neck to her upper butt. Bruises and scratch marks? The nurse tells me they've been there since her birth. The doctor. He had pushed so hard and whatnot that he, apparently, bruised and scratched my babies sweet back. Anger. Fury. Prayer.
From that Friday through Monday I go through a buffet of narcotics. I'm given a variety of medications for pain. We're talking I started with a morphine drip *click here for lala land*, then I asked that be removed so I could go see my baby. They start me on Viocodin, Motrin 600, Percocets, Ultram, Morphine Liquid, something that started with a T via shot and more. They keep mixing it up because they don't want me to go over my 'aspirin' intake. I don't reject the pain meds. I'm in alot of pain.
They come check my wound semi-often. They push on my stomach to check my uterus, the look at the incision. They always give me an AB Pad to absorb the moisture. Let's face it, when you have had 4 c-sections, there's a little extra skin down there and it can get a little sweaty when you move around unintentionally. It's nothing 5000 sit ups cant fix again, but for now it requires me and my AB Pad to become close.
The food. well, it sucked. Next paragraph
The date of release. Monday, February 23. To Be Continued
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