What a Girl!!

Well, we survived CT scan day. I was looking forward to today, but also dreading it. I was looking forward to getting to talk with the plastic surgeon, and getting to meet the other neurosurgeon, but dreading Gabby being put out for the scan.

So we get down to Children's for a noon radiology appointment. Gabby couldn't eat anything for 4 hours before the appointment. They also recommended sleep depriving her. Great I thought when I heard this. How am I going to get her to not sleep the whole drive down to Milwaukee? And just because she did not nap does not mean she will be put on the table and just fall asleep for them, especially when she is starving. So I decided to go the other route and just see what happens. In order to do the CT scan, you have to lay perfectly still. They prepared us by saying that most babies have to be sedated to have the scan done. Scary. I thought I was ok with it until we got there. We tried to get her to lay on the table for them, as they have the babies try first, before sedating them. Gabby was doing really well, but they didn't think she would be still enough, because she was awake, and had her nook- which they would have to take away. So they had the nurse come in and talk about sedation options. I almost start crying, but hold it in enough to hear the options. IV and have her wake up right after the procedure, or oral and have her sleepy and have to be monitored for 2 hours after the scan? I am thinking oral so she does not get poked, Mark is thinking IV because the medicine is out of her system quicker. I agree with the less meds in the system thought and we go with IV. BAD IDEA. They have a hard time finding a vein in her tiny arm, and finally attempt, only to fail. I am trying to comfort my screaming child, all while trying not to lose it myself. They then try her ankle only to fail there too. NO more we said and they agreed. Gabby was going to have to do the oral after all the trauma already. I felt awful. It took them quite awhile to get the MD orders for the other meds and in that time, Gabby fell asleep in my arms- after she continued to cry and do the baby shudder thing they do. She was wiped out- they agreed to let us try again to have her lay down since she was now asleep- and guess what?! It Worked!! I layed her down, they did the adjustments, even slammed the door ( I was ready to punch someone at that point!) and she stayed asleep- even let me take the nook out! All because she had to be still for- get this--- 5 SECONDS. 5 seconds. You would think someone would invent something that could hold a child still for 5 seconds so you would not have to knock them out! Thank God we did not have to!!!

So after this we met with the neurosurgeon who will be doing her surgery- Dr. Kaufman. He is wonderful! He walked in and was so personable. I know that is not necessary for a surgeon. I just want them to know what they are doing and have steady hands! But it was still nice. He told us to pull up chairs next to the exam table and started drawing pictures of skulls on the exam paper- I can't say I ever had a doctor do that before! He walked us through everything and really explained the surgery, which I could understand now after doing some research. I guess the coronal suture that Gabby has fussed is less common than some. The most common form of craniosynostosis is along the saggittal suture, or the babies with elongated heads. The doctor said the out of one hundred surgeries they do, about 95 are saggittal, 4 are coronal, and one is metopic, or along the back of the head.

We got to see the CT scan. Wow. That is amazing that in 5 seconds they have such an awesome view of her whole head. They spin it around and show all views, view without the top of her skull on, and bottom up. You can really see where the misshaping of her skull is though. That is where Dr. Jensen came in- the plastic surgeon. He does most of the surgery. He opens her up and the neuro takes the skull off for him pretty much. I had a list (a long list) of questions I wanted to ask all scribbled on a paper. Mark took it out and Dr. Kaufman took the list and started answering all the questions. It was really nice, but I was kind of embarrassed too, because 1. it was really, really messy and 2. I was not sure if I should ask all the questions (ie: will her whole head be shaved- um, she has no hair yet!). Regardless he answered some and handed the list over to Dr. Jensen so none of those questions were missed. So I now know that I can see her an hour after surgery and don't have to leave her again, and 2. yes she can still be nursed (probably didn't need a neurosurgeon and a plastic surgeon to tell me that!!).

Now we just have to wait for their secretary to call us with the surgery date. Dr. Jensen agrees with the 6-8 month age range. In fact he said he likes them a little on the older side because then their bones are getting a little harder and when you hear them "crack" into place that is good. Something about the bones staying in place better. I told Mark those plastic guys can keep there cracking commentary to themselves. I really don't want to hear about it. Though it is amazing what they are going to do. He will be using absorbable stitches and plates. There are plates he will be using in her skull which in a years time just absorb. That is crazy. After surgery she gets seen at 10 days, 3 months, and 1 year. At one year they will do another CT scan to make sure all the sutures are doing what they should be doing I guess. I just hope I can get her to lay still for 5 seconds!!!

Some good news!

Mark just called to say the PA from Dr. Lee's office (neurosurgery) called (Finally!) to say that Mark and Gabby are a match- they are both A positive. Yeah!! They both had blood drawn last week to check to see if Mark could be the donor for the blood transfusion Gabby will likely need during her surgery. I did not realize that as the mother, I cannot give blood to her. I believe they said that babies develop antibodies against their mothers blood in utero(sp?)- something to that effect. So now that Mark matches we don't have to move on to getting our family members tested to find a match.

We were also able to get all the appointments next week on the same day- the 19th now. We are going to meet with Dr. Kaufman, the chief of neurosurgery, to see about doing her surgery. We have decided as long as the plastic surgeon agrees, we will do the surgery in the beginning of January. 2008 has not been the best year for the Danen's and starting with a clean slate sounds good. Also, having things normal around here for Alex for Christmas will be good to. Anyway, by doing it in January, Dr. Lee will be on maternity leave- this is why we are meeting with Dr. Kaufman. Well, that and the fact that the more I thought about it, the more I did not really want an 7+ month pregnant lady operating on Gabby, no matter how good she is. You just never know what can happen.

I am really happy- I found a support group for craniosynostosis. It is called Cappskids. It is a great resource for me. It has been really nice to have a place to go to read about other families stories about their kids who have the same issues that we are dealing with.

So I have to share a neat story that happened right before we went in to meet with the doctor last week. Mark had gone to get a drink of water and I decided to say a little prayer for Gabby and asked Grandpa Danen to be watching over her too. Well, I should back up a little here. The night before Ralph went in for his knee surgery Mark, Alex, and I went out to dinner with Kay and Ralph. On the way home Ralph was making Alex roll with laughter time and time again by saying "Uh Oh, Spagettio's" . For what ever reason, Alex thought it was great and Grandpa Danen kept doing it for him, even after it was getting old. So back to the doctors apt. I realized after I said my prayer and looked to Ralph for some help from above- that I was saying to Gabby over and over was-"Uh Oh, Spagettio's"!! Now, I never say this, and have no other reason for pulling that out at such a time when I was so darn nervous! As Mark walked back in to the room is when I realized what I was saying and I just got goosebumps. So that was Gabby's sign that Grandpa Danen is watching out for her!

Gabby's Story

Gabby is 5 months old today. We finally got some answers today. We have been waiting for 5 long months to get these answers.

Gabby unfortunately did not have smooth time coming into this world. She had her umbilical cord wrapped around her neck two times causing some swelling in her head. She also had jaundice for which she had to wear the bilirubin blanket for several days. After all this was cleared up, we started to tell that her right eye was a bit larger than the left and it appeared that she was missing her eyebrow on that eye. Her daddy lovingly nicknamed her Popeye:) Gabby's pediatrician has been watching her and as she pudged up her eye has become less noticeable, but there was still some misshaping of her head. At her 4 month appointment it was decided it was time for her to see a pediatric neurosurgeon at Children's Hospital in Milwaukee.

Today we had that appointment. Gabby was such a trooper! She slept the whole ride down there (2 hours). She had to get x-rays first. For this she was held down with bean bag type weights and her head was in a foam positioner. They had to tape her head down then to hold her still. She did not like this very much, and neither did I! It did go quickly and she was back to smiles as soon as they had her off the table. Next we had our appointment with the pediatric neurosurgeon. The conclusion was that indeed, she did have craniosynostosis. What is this you ask? Here is what Children's Hospital has to say:
The normal skull consists of several plates of bone that are separated by sutures. The sutures (fibrous joints) are found between the bony plates in the head. As the infant grows and develops, the sutures close, forming a solid piece of bone, called the skull.
Craniosynostosis is a condition in which the sutures close too early, causing problems with normal brain and skull growth. Premature closure of the sutures may also cause the pressure inside of the head to increase and the skull or facial bones to change from a normal, symmetrical appearance.

Gabby specifically has plagiocephaly - Plagiocephaly occurs the most often and happens in approximately one out of every 2,500 births. It involves fusion of either the right or left side of the coronal suture that runs from ear to ear. This is called coronal synostosis and it causes the normal forehead and the brow to stop growing. Therefore, it produces a flattening of the forehead and the brow on the affected side, with the forehead tending to be excessively prominent on the opposite side. The eye on the affected side may also have a different shape. There may also be flattening of the back area (occipital).

So what are we to do about this? My baby has to have surgery. We go back to Children's Hospital on the 20th to get a CAT scan done and to meet with the plastic surgeon. The neurosurgeon takes the skull apart and the plastic surgeon puts her back together I guess. I am trying to tell myself that this is good we finally have answers, I am trying to tell myself that thank God she has something that is able to be fixed and is not affecting her development (she is not at risk of this the doctor said). But still this really, really sucks. The doctor said for them this is a "routine" surgery- they do about one every week. Still, when it is my baby they are going to be cutting it is not routine. I just pray that the surgery goes as well as they say, and that we can get through the coming weeks strong for Gabby.