Hospital Stay Part 2

Matt said when I update the blog I should name the post "Hospital Stay Part 2".

I'm just going to dive right into it. Gwen had a seizure on Friday. I didn't know what it was at first. I was praying and panicking and trying to console her. It came to me to question whether it was a seizure. I called my mom and left a message. Called my sister and she advised looking it up on webmd.com. When I did I just started bawling! I knew. Then Mom called me back and confirmed it too. After serious deliberation and advice, we took her to the ER at Children's Hospital and Medical Center. Not knowing at all what was going to happen next Gweneth was admitted over night.
They did an ultrasound on her head which of course confirmed her ACC, but it told us that she had complete agenesis. There is no portion whatsoever of her corpus callosum. Next was a lumbar puncture. They wanted to test the fluid around her brain for infection, without taking it directly from her head. So, through the lower back where the fluid drains. They made three attempts and got nothing. So they finally let me feed her and lay her down. It was emotional waiting to be able to feed her. She cried so I held her. Then I cried so I had to lay her down. But I held her on my lap facing me at one point, and just talked and talked, and she was quiet listening to every word I said, staring up in my direction. It was a special moment and a comfort to us both.
Matt eventually left our side to go retrieve Zeke and Reid from my visiting teacher's home. Apparently Zeke had developed a fever! Goody, more struggles.
The next morning I followed the staff down to the MRI room, carrying Gwen. That was loud! After putting ear plugs, headphones, braces on each side, straps to hold her down, and tape to keep her head covered, you couldn't see her hardly! Despite the noise, I kept dozing off during the test. Oops! But it was such a draining night.
Well, there was a doctor came in to update what she could, but she said the MRI didn't show anything that we didn't already know. Unless the neurologist said something different. Doctor Oliver, the Pediatric Neurologist (who strongly reminds me of the character named House), came in and told us he doesn't want to try another lumbar puncture, because she hasn't ever shown a fever or anything that suggested infection. Gwen was still treated as an isolated patient though. He did want to do a urine analysis testing for an infection newborns are especially susceptible to-though I cannot remember the name. He did want to do an EEG to check out her brain waves. He did want to do an ECHO (an ultrasound on her heart). He did want to keep us until Monday to monitor her. He did want to try a chromosome analysis to try finding out why she has ACC. It doesn't test every chromosome, so Matt isn't confident they will find anything. I don't know the scientific reason for her birth defects, but I DO know it is Heavenly Father's will for her. So as much as this test fascinates me, I'll be OK if it is unproductive. They drew blood with difficulty for the chromosome test, but got it. Had to draw a second vile on Monday.
The boys came with Matt to visit on Saturday afternoon. Of course they didn't make it further than the waiting room, so they couldn't see the baby, but they were content to see me I think.
Well that was Saturday pretty much, unless I'm forgetting something. Sunday was uneventful since they ordered all the tests for Monday.The boys visited again, but Sunday was a day for me to adjust. Having all the personal things that Matt brought me made Gwen's stay feel too permanent. Not to mention the shower in the bathroom, the washer dryer on the floor, and the casual nature I took on in walking to the cafeteria in my socks. The nurses were phenomenal. Amazing women. Many of them were moms. There was a teenage volunteer that came in so I could do some other things, and she was really excited because it had been a long time since she got to hold a baby THAT small.
Sunday night pretty much stunk. Gwen couldn't decide if she was hungry, sleepy, gaseous or wide awake. Two a.m. came and she finally decided she was sleepy. 5:30 came and so did the lab techs to take the second blood sample. It failed. She sent someone back up to try a second time, and that failed. Seven a.m. came and they were ready for her EEG. I hopped out of bed quick and threw clothes on so I could be with her. It went well.
Gweneth never really cried too much. Was constantly praised for that. Also they appeared to love her name and think she is adorable. That won't get old.
Just before lunch, the ultrasound technician came in to do the ECHO. There is a doctor team that goes around to talk about procedures and options and stuff. If you don't want to hear them in that setting, they come to you either individually or in smaller groups to talk. They came during the ultrasound, and I didn't want to miss it, so the doctors came back later.
So every test we came to do was done except for the second blood draw for the chromosome analysis. I was told that that wouldn't hold us back from discharge later that day. But the first of the handful of doctors-who was a pediatrician, came in and said it would be cheaper for us to do it while in the hospital than to do it outpatient. So I crossed fingers hoping they'd have better luck than that morning! Discharge now became contingent on that.

TEST RESULTS

In no particular order, I will do my best to tell you about the test results. The urine analysis tested free of infection so she was taken out of isolation Sunday night after I asked about it.
The second blood draw was successful for the chromosome analysis. But results for that take weeks or months.
The Echo showed no heart murmur but the little hole all newborns have. It appears to be closing up nicely, and blood is flowing in all correct directions.
The EEG came back normal. No seizure activity and therefore no need to put a two week old on medications. I asked if that made me a liar or paranoid and they said no. Just because they saw no seizure activity in that 20 minutes, doesn't mean it didn't happen. That seizures are just a moment in time with a start and an end. Also, we prove that she will just be prone to seizures regardless.

The MRI proved that the prenatal diagnosis of hydrocephalus was wrong. She doesn't have it. However, she does have colpocephaly. This link will send you to the wiki page, but there are other more informative links for sure. Her brain's ventricles, which run from the front to the back, are malformed. They are bigger in the back than in the front. This is caused because the corpus callosum is not present, so other parts just kinda grew differently. The right ventricle (I believe) is not as large as the left, so there is extra fluid around it to compensate.

I think I covered all the test results. Gwen has a follow-up appointment with neurology at the beginning of next year, and I have to schedule an eye appointment for her too.

I had mentioned sickness among the boys. They appear to be getting better. They were surprised mostly to find ME as the parent home when they woke up today. Glad to be home.

~Hoveys