The worst news of my life...

The following are excerpts of some posts I put up on one of my mesageboards:

7/26/07

I DID get to hold Cady yesterday for an hour. It was so nice, but still not enough. (Yes, I'm being greedy.) I wanted to touch her skin and let her feel mine, but I had to hold the oxygen tube over her nose the whole time. It was still AWESOME though. :)

I just called and her oxygen is back up to 30-40%. It was down to about 24 yesterday. But they said they tried putting her in the nasal canula last night and she didn't tolerate it too well so they put her back in the hood. I guess that pooped her out so they had to raise her oxygen level. That's ok though. They say sometimes it's two steps forward and one step back, so I guess she digressed a bit. However, she is getting there, just very slowly. Her last x-ray showed some progress, though there is still a bit of meconium in her lungs. Right now it's just a matter of waiting for her to get better.

The biggest thing that has me concerned right now is that they noticed she hasn't been very responsive. They said this could be indicative of some brain damage due to the knot in her cord causing a lack of oxygen to her brain while she was in utero. However, they said that she was fiesty and responsive when she was first born tells them that it is most likely that she is just worn out from fighting so hard to breathe. I am hoping and wishing and praying that that is all. I am an absolute nervous wreck over it.

7/27/07

I don't even know how to type this. I got to the hospital today just as shift change was ending and they let me in the NICU not realizing Cadence was having an echocardiogram. So, after scrubbing in I waited off to the side for the tech to be done. After like 10 minutes, the head neonatologist came over to me and asked if we could talk. She took me to a private room where we were eventually joined by two social workers and another doctor. She basically told me that she, the nurses and the other doctors were all concerned about Cadence's behavior. They said there were two things that specifically raised some red flags: she holds her thumbs inside her hand (not sure exactly what that means or why it's a concern) and when you tap her forehead between her eyes, she should blink and she doesn't. They said it could be any number of things. It could be nothing - that she is still just very sick and out of it. It could be she has an infection like meningitis, although the doc felt this was a very unlikely scenario. It could mean she had some compression on her brain as she was coming out and she broke some blood vessels. This would be a great prognosis as it will resolved itself over time. Or it could be she suffered some brain damage due to the knot in her cord cutting off her oxygen supply.

They said we won't know more until she gets better with her breathing (which is slowly improving). They said anything it could be they are treating her for already (antibiotics) and so they will just wait until she is better to further examine her. They said they will do a CAT scan to look at her brain and a spinal tap to test for meningitis. They also said they will have her evaluated by a pediatric neurologist. They even said they'd have an eye doctor look at her because she might have a problem with her eyesight. They said she can at least see lights as she reacts to lights in her face, but they aren't sure beyond that.

I am sick over this. I got to the hospital with only 45 minutes to visit. By the time they were done talking to me, it was just about time to go. I stopped by her bedside quickly to say hi and then had to go. I couldn't bring myself to go back this evening. I can't eat. I can't sleep. I can't do anything but cry and think of my poor baby and pray she is going to be ok. Corey went there after me and talked to the doctor as well. She told him to reassure me that this was nothing I did or in any way my fault. Rationally, I know that is true, but it doesn't stop me from thinking it was. My heart is broken right now and I don't know how to deal. I look at my other two kids and I find them to be even more of a miracle and a blessing than I did just one week ago, but yet I am too sad to enjoy them.

I admit to not being a very religious person. This is by no means meant to be a religious debate, but just so you know where I stand, I guess the best way to describe myself is a non-denominatioal, non-practicing Christian. I believe in God and his son Jesus Christ, but that's about it. I don't know what form of Christianity I believe in and I haven't bothered to figure it out. Whenever someone here is asking for support, I don't like to lie and say I will be praying for them since I am not the praying type. Instead, I offer my PTs and send out well wishes. Well, let me tell you - praying to God is all I've done the last 10 hours. I have begged, pleaded and bargained for a miracle. I am now asking all of you who believe to do the same. If not, all the support and positive thoughts you can muster up are just as welcomed and appreciated.

7/30/07

First and foremost, I want to say thank you to everyone who responded to my last post in this folder. I don't even have the words (and I am a writer!) to tell you all how heartwarming and humbling it was to read all of those responses and personal e-mails. Your words of prayer, encouragement and support truly did help me get through the last few days. For that, I am immensely grateful. You are all so kind and wonderful and on behalf on myself and my entire family, thank you a million times over.

Ok, now on to my sweet Cadence. I got to the hospital today and was told Cady had her CAT scan a few hours earlier. My stomach turned. I was consumed with anxiety and fear. They told me the attending would be over to talk to me soon. Long story short, I was told Cadence has a small spot on the CAT scan that could be one of two things: a bit of brain damage or a spot where she moved her head during the test. She said once Cady got better, they would have her evaluated by a pediatric neurologist and she would likely have an MRI. She said the part of the brain where they saw the spot is called the caudate nucleus and it is an important part of the brain (I looked it up and found it is the part of the brain that controls learning and memory), but we have two of them. She also told me infant brains are very "plastic" and often times when there's damage to one part, other parts will sort of pick up the slack and take over for the damaged area. She said she would most likely go into Early Intervention and be monitored by a neurologist for at least the first 18 months of her life to see how she is developing. She said while we don't know just what we are dealing with as of yet, she believes we can be "guardedly optimisitic."

ETA: I had only read a few sentences about the caudate nucleus prior to posting this and it seems it is involved with a lot more than just learning and memory (voluntary movement in the brain, body movement and coordination. Also, a malfunction in this part of the brain is believed to be the cause for OCD...sigh). I am just hoping if it IS damaged, it's not going to effect her too greatly and, like the doc said, other parts of her brain will make up for it.

I've been told by another doctor and some of the nurses that Cady has been a bit more alert and responsive and while there is some concern about her muscle tone, it seems to be a bit better than it was. She has an occupational therapist working with her, although I don'tknow how that is going because she was supposed to have her first session earlier this evening and the nurse knew nothing about it when I called at 9. Everyone seems to want to give me reason to have hope, but they just can't be sure yet what we are dealing with. On Saturday when I was visiting with her, I was holding her and she appeared to be looking at me and all around us. One of the drs., the one who made it a point to tell me last week that my baby was "very sick," walked by, looked at Cadence and became very excited. She said, "Oh my gosh! She is looking at you!!" I said, "Yeah, I thought so but I didn't want to get my hopes up if she was just looking in my direction," and the dr. said, "No, no! She is looking at you. She is really looking at you!!" Considering how pessimistic she had been prior, it made me feel really, really good. Then on Sunday, I ran into my midwife and she was surprised to see us there. When I told her what was going on, she told me there were some tests done on the cord blood after she was born that looks for any evidence of where she might've had some lack of oxygen and it all came back normal. That also made us feel better.

As for her breathing, she is slowly getting better. She's in the nasal cannula now and has been since Friday (no more hood). Her resp. rate is still high, but going down. She was taken off the UVC (a small tube that feeds her through her belly button) tonight and put onto an IV for food. The nurse suspects she will start feeding in a couple more days. She had the spinal tap today, but we haven't gotten the results back yet. Also, she is done with the antibiotics (unless the tap shows something there in which case she might stay on them a few more days). Still no word on when she can come home, but I am guessing another week or so.
I am still a nervous wreck, but somewhat more relaxed. I know we are not out of the woods yet, but I do feel much better. Please, if you can spare them, keep the P&PTs coming. They are so, so appreciated. HUGE, HUGE HUGS!!!! <3>