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.
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.
8 comments:
Oh Jodi, I had no idea. I am sure it must be scary and difficult to watch your baby go through tests and surgeries. Hang in there! I'll be praying for you guys. Gabby has such a great spirit. She'll pull through wonderfully, I'm sure.
I'm glad you started a blog to keep us updated! I love reading friends' blogs. I'll keep reading.
Thanks Gina. It is quite scary to think about so I thought doing this might help.
Hey Jodi, I was thinking of you all day yesterday wondering how things were going. I will continue to pray for Gabby. I'm sure it must be so hard but just be strong. All will work out, I'm sure.
Hello sister!
Just remember who Gabby's parents are -- between you and Mark, Gabby is bound to be one tough, stubborn girl!! After all this is over, she won't remember a thing, and she'll get to bask in everyone's love and attention (like she is lacking in it now...!)
Love you guys,
Mandy
Jodi,
I am so sorry for what you guys are going through. Please let me know if you need anything.
Hi Jodi-I am so sorry to hear of your news. I had no idea this was happening. I will most certainly keep your family and Gabby in my prayers. I'll continue to check back here for updates too. Hang in there and let me know if there's anything you need!
Hey Jodi,
I know we talked about this the other day, but I wanted you guys to know that Dyan and I are praying for you. Putting this out there for everyone to see is a testament to your strength of spirit and courage. If there is anything that we can do for you guys, we are only a phone call away.
Jodi, Mark,Alex and Gabby... You guys know you have ALL of our prayers.We are here for you..always have been, but I can just imagine how worried you guys are.. but remember you have an angel up there who is with you all the way...OHH OHH spaghettiO's!!! Gabby is a strong lil peanut and she has a lot of people praying and sending positive thoughts her way.. all will be ok!! I love you guys!
Tricia, Mike and Jamison:)
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