Addison – Sagittal

3It was a week after you were born we took you to the doctor for your jaundice check she said you looked fine and she wasn’t even going to test you. There was something she was concerned about though and it was the shape of your head. She tried to assure me it was probably nothing and that some babies just have odd shaped heads when they are born. But I had a feeling too that the shape of your head wasn’t right. She referred us to children’s where a craniofacial doctor could double check and make sure your head was ok. The doctor came in with his assistant and asked our concerns.  We put you on the table and immediately they started talking among each other about how this was a classic case and how when they do the CT scan you can just picture what the skull was going to look like/  They kept talking to each other “and when we do the surgery we will just go in and take this bone out,etc.”  He then realized what he said and looked up at us and said yes I think your doctor was right for the concern. I think she has Craniosynostosis.  He said it is when the skull bones fuse together too soon and we go in and take a inch and three quarter piece out along the middle of the skull. I was terrified, what my gut was telling me the whole time was true…. her head wasn’t right. I have never heard of Craniosynostosis before having Addison and we have four other kids boys and girls none of them had it. The doctor told us to come back in a month and we would do the CT scan.  He said they usually wait to do surgery somewhere between four and six months, they like to stay closer to six because otherwise you have a chance of the skull fusing back together and then she would have to do another surgery. He said unless we see a lot of holes in the skull on the CT scan then we would try and do it sooner, closer to four months.

We went home, made the appointment and for the next month it was all I could think about. Deep down I still had hope, maybe they will do the CT scan and see that she doesn’t have it and that her head is just odd shaped. I did a lot of research on the internet about it and the different types, looking online at the pictures… I knew she did have it and from what I could tell it looked like she had Sagittal. Looking at the pictures of the babies after surgery I felt sick to my stomach seeing the babies with the cut ear to ear scar and knowing that would soon be my little girl.

A month later the CT confirmed that she had Sagittal and it was worse than they thought, the CT showed lots of holes in the back of the skull. The doctor said make an appointment with the neurosurgeon and make sure he agrees with what the craniofacial doctor was saying.  We met with the neurosurgeon later that week and he agreed her skull was fused and only surgery would correct it. He said they would be in touch with scheduling the surgery when all the surgeons could make it work. In the meantime as days went by, Addison became fussier and fussier, she didn’t like to be moved, never wanted her head touched or she would scream, and when she would lay on her back her head would flop to the side because with her head being so lopsided she couldn’t hold it in the middle. She had an area on the back top of her skull where you could actually feel and see where the bones fused together, they stuck up even and the bigger she got the bigger the bump in the back got. You could also notice looking at her from the side that her forehead was starting to bulge.

They finally called with a surgery date about a week later and said how about December 29th? I said to the nurse there was no way she could make it that long, that she was crabby all the time and didn’t even like to be moved. She put me on hold and said let me see what I can do, she said to do the surgery sooner it may have to be a different neurosurgeon are you ok with that? I said yes I didn’t care as long as they could get the surgery sooner. She came back on and said October 29th? I said that’s perfect, but when hanging up the phone I realized that wasn’t much more than a month away, the days went by slow and the surgery just hung over your head, it was like you wanted it done soon but yet you didn’t. Finally the day had came.  It was the day before surgery, she had a pre-op surgery appointment we went in and they checked her out and weighed her and took her blood. They sent us home with two blood bands on both of her legs that said don’t remove these needed to be on in surgery so depending on how much blood she lost they would give her a blood transfusion. Her doctor had explained ahead of time that most all babies need the blood transfusion because they are so small that it doesn’t take much for them to lose most of their volume of blood. Knowing this ahead of time we found a family friend that donated the blood, I don’t know why but I somehow felt better if I knew the person she was getting the blood from. She had eating restrictions that she couldn’t eat after 3 am I was quite nervous about this because during the night she usually woke up every two or three hours to nurse. So I set my alarm that night to wake up every two hours to feed her until 3 am, my plan was maybe if I can stuff her that she wouldn’t be as hungry and stressed the morning of surgery. The morning of surgery we waited until the last minute to wake her up before we left, she was all smiles talking to grandma and didn’t even act hungry. We had an hour drive there and she did great, slept the whole way there. Got to the hospital and she still was doing great all smiles, looking around. Seemed like forever before they called us back. They called us back and took us to a room, gave us a gown for her and a pair of socks and said put this on her and when the doctor is ready we will come back to get her.  It was still about 45 minutes until 9 am the time of her surgery so dad walked her up and down the halls of the hospital and she was as calm as ever (I have to mention though that she had all our friends, family, and church family praying for her hundreds of people) and you could totally tell she was covered in prayer. Never would she be that calm and just looking around smiling when she was hungry. Finally the nurses came back and said they were ready for her.  It was the hardest thing ever to have to hand my little girl off, after many tears and kisses I had to hand her over,  and they walked away. Addison wasn’t even crying. My husband and I broke down, we knew this day was coming but nothing prepares you for it.

We sat in the room hugging and crying and about a minute later our pastors/friends showed up, we all prayed and immediately we could feel the peace of The Lord come over us. The surgery would take anywhere from four to six hours and that felt like the longest four hours of my life!  You just look at the clock and you feel like it had stopped since the last time you looked at it. I am very thankful our pastor and his wife came, without them, I think we would have just sat there quiet not saying a word just staring at the clock. When we got back up to the waiting room we looked at our card for Addison’s number on the board and it said surgery was still in progress. Ugh, still it was about 11am, then about a minute later a guy came up to me with a piece of paper and said are you the parents of Addison? We both said yes, he said the surgery room called while we were gone and they wanted to talk to us, he said I can take you over to the phone and we can call back to them. Immediately you go into a panic, oh no is something wrong, what happened, your mind just starts to race. It felt like it took forever to get someone from the surgery room on the phone, the guy on the phone stated his name and said that he was assisting in the surgery with Addison and all I could hear was blah, blah, blah, I didn’t care what his name was or what he was doing I just wanted to know if my baby girl was ok. Finally I heard the words come out of his mouth, we just wanted to call and let you know surgery has started and she’s doing great, I could breathe again! Finally about an hour later the numbers on the board said surgery was finishing, I was relieved! The gentlemen came back and said the surgery was finishing up and he would take us back for the doctor to come talk to us. I think we waited back in that room about 15 minutes again I’m not sure because it felt like a lifetime. The doctor came back and reassured us she was fine and did great, said there was minimal blood loss for this surgery but they still did need to give her a transfusion. He said they were finishing up and when they were done  they would take her straight to the ICU and after they got her all settled in there we could come see her. We then headed up to the fourth floor ICU and we were going to wait in the waiting room until they called us back, when we got up there someone was going back to the ICU so the doors were open so we decided to go in (otherwise they are locked).  We waited at the desk for about ten minutes and no one came. All of a sudden I looked down the hall and I saw them rolling Addison back into her room. I told my husband I don’t care if they want us to wait or not I can’t just sit here now that I seen them wheel her back. So I walked down the hall and I saw four doctors and maybe six nurses in the room hooking up wires and getting her settled. I asked one of the nurses if we could go in, she asked the doctor and said yeah it’s ok come on in. Nothing can prepare you for that moment, looking down at my little girl she looked like a different baby. I started crying, she was pale, moaning in pain and awake (I did not expect for her to be awake) seeing your baby laying there in pain your whole body just aches I would have done anything to take her place. She had an IV coming out of both her arms and both her feet, she also had a line which goes straight into her arterial artery. Once they got her all settled in she feel back asleep which I was thankful for (I felt like if she was sleeping she wouldn’t hurt so bad). I sat by her side and held her hand. I felt like if I could hold her she is going to know I’m right here, my husband and I took turns holding her hand. We got into the late night hours and her pain was starting to get out of control.  Her heart rate was going up and so was her blood pressure and she was screaming in pain. They tried to give her more morphine but it wasn’t working it was just making her really itchy. They decided to give her some Benadryl to help her with the itching.  Her reaction was the opposite of most kids and it made her wide awake and her eyes shot open. Her heart rate starting going up again and she was still crying in pain. More nurses and doctors came in and they decided to give her medicine to sedate her because they couldn’t get her pain in control, at this time her heart rate was into the 220’s which is extremely high, her lip started to quiver and her body started to almost seize. They administered the medicine to put her out and for a couple minutes she was fine her heart rate started going down and she was relaxed. Then after a couple minutes her heart rate started to go down to much, then her oxygen level started dropping (60) and her color was a grayish blue. I remember probably six nurses and a doctor were in there running around getting oxygen on her. After a really scary hour we got her oxygen back up, with some help of oxygen in her nose and adjusting the dose of the medicine to sedate her. It seemed like what was the longest scariest night of my life but we made it through. We had to spend three more days in the hospital, the next day we were able to hold you which was the best feeling ever! We are now a couple weeks out of surgery and my baby is doing so good, smiling lots and her head has really healed well and shaped how they wanted. We go in for a CT scan in two weeks to see how the bones are looking. We are praying that everything looks great and she won’t have to have another surgery.

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