Almost Home

Just waiting for the neurosurgeon to do his rounds but we expect to be sent home today. Nora is doing well and I think we can say that the surgery was a success. She is pretty much back to normal. Her CT scan showed the pressure relieved in her brain. We are going to have to backtrack a bit with her PT because her left side is now not working as well as her right, but everyone says that it will come back over time with some work. Now we will just have to follow up with MRIs periodically and monitor her head size to make sure the fluid is still escaping properly over time.

It was one year ago at this time that we first found out about Hydrocephalus. In the end of October last year we first met with the genetic counselor and the perinatologist and had them reassure us that everything would be just fine and that these things are so rare that they were sure it would turn out to be nothing. We have been through a lot since then. One thing we know for sure is that these doctors don't have the answers to everything. They are just people trying to do their jobs. We will just have to wait and see what is next...

Out of the PICU

Andy was busy with Nora during the night. She started smiling and acting more normal but still was having trouble keeping down her bottles. Good thing we have that spare security blanket because they have both been the targets of her vomit over the last couple days.

I washed one of them and brought it with me this morning when I arrived at 7 am. Since then things have been pretty smooth. She has been moved to the regular Children's Hospital section where things are quiter and seem more fun. The nurses and staff are all dressed up for Halloween and the Child Life Specialist (I read her nametag for that title) stopped by and gave us a Duckie Halloween costure that will fit over her IV paraphanellia. A Duck is perfect since "Duckie" has been her nickname that Andy and I call her since she was really little.

She was up for a couple of hours, ate, played a bit and did a PT/OT session. So just like home! The therapists were no surprise. She has some delay issues with her left side now. She seems less coordinated with her left hand and leg and is slow to respond. She also doesn't look to the left as must as too the right. It is also affecting her balance so she is a little wobbly when she sits. It is not too bad though. Probably a setback to her PT work, but she will be able to work through it and should be back to full strength in a few months.

After all that she was pretty tired so she is napping now. Grandma and Grandpa Forester stopped by with a nice packed lunch for me which I am finishing now. Thanks! Hopefully she will wake up in time for the Halloween parade at 1 pm. Busy busy!

Day after surgery update

Today Nora had a busy day. She was very sleepy most of the day. She has been on a string of pain medications trying to find just the right combination that makes her comfortable and does not make her sick. When I left her tonight, she was sleeping in her crib pretty soundly so I am hoping she is on the right stuff now.

After her surgery she had a tube sticking out of her head called a ventriculostomy. Today the doctor came an removed the tube and tied up the stitches in the hole in her head. As you would expect, this was not her favorite thing to do.

Overall though, she is handling things well. She is not much of a crier in the first place, so I think the nurses and techs comment about how good she is being, but I know that if she is wimpering she is probably not feeling so hot.

Her left side is still not too active. It is ok since she can move it, but it may take a while. Her brain has gone through some trauma with the surgery, so it will just take time. We will start working on it with her physical therapists once she is out of the hospital. She may have to put her crawling on hold for a bit.

She is in the PICU again tonight. Maybe will move to the regular Children's area tomorrow? I doubt she will come home tomorrow, but maybe on the weekend sometime.

Sorry this post isn't too eloquent or organized. I am pretty tired and going to bed as soon as I hit submit!

Thanks to everyone for their thoughts and prayers. I will update again tomorrow. If you want more frequent updates, get on facebook. I am posting there throughout the day.

Nora's Surgery Day

Nora minutes before her surgery.

Nora's surgery went ok today. It took a little longer than expected and the neurosurgeon was a bit surprised by what he saw in her brain. There was less pressure in the brain than he expected from looking at her MRI's. As a result, the membrane between the two sides of the brain was not as thin and week from being subjected to pressure as he had thought. So, it was a little thicker than normal during this procedure and took longer to cut through. Also, since it was thicker, he had to apply a bit more pressure than normal which tugged on the inside of her brain more than he would have liked. Also, when he got a chance to look around the left ventricle, it was clear to him that the left side of the brain is abnormal as well. We had been somewhat operating under the theory that the right side was not draining properly thereby putting pressure on and squishing the left side. The doctor said that the left side is not just squished, but that the walls of the ventricle appear abnormal. This doesnt really mean anything specific and there isn't really anything we can do about it. It is just "interesting." I guess we are back to the "What To Expect" theme of this blog! It never really goes away!

Her recovery took a little longer than normal as well. Actually, she is still recovering now! In the recovery room she just slept and wasn't moving around much at all. The doctor and anestesologist both examined her and said that they think she is just sleepy and to just wait. She has been sleeping ever since.

She has woke up wimpering a couple times since we have been settled in her room in the PICU and I have called the nurse to up her morphine. Hopefully she will be closer to her old self in the morning.

Tomorrow is the Big Day!

Nora is scheduled for her surgery tomorrow at 9:30 am. She should be at the hospital for a few days, then will recover at home and should be back to herself in a week. I will update the blog after her surgery to let you know how she is doing.

Yesterday she did her first crawl! Well, it is a Nora-style crawl. She lies on her belly, hikes her butt an inch or two off the ground, then scoots herself forward like an inch-worm. Maybe not the most efficient method of communication, but effective. She also has successfully moved herself from sitting to belly without crashing onto the ground. I hope she continues to practice this and gets better soon. It will save her plenty of bumps on the head as she dives headfirst to the floor to get her toys!

Here is a photo of her at Gene's pumkin patch. It was a quick trip as it was cold outside. Her pumpkin is sitting on our front porch now. We also got some squash which I cooked when we got home and Nora loved!

More tomorrow!

9 month photos

Well, 9.5 months at least. I am a couple weeks late.