Monday, July 15, 2013


The evening before the surgery and the morning of was extremely nerve racking, I was sick, could barely eat...all kinds of thoughts and fears were racing through my head. All I wanted to do was spend time with Alice and hold her and kiss her. I was terrified beyond belief. I was about to put my baby girl in the hands of strangers...and had to trust that she would be ok. Not an easy thing to do...and as a mother I wanted to be there with her every step of the way and I couldn't.

The drive to the hospital from the hotel seemed like eternity, my stomach kept rolling over and over...I just wanted to call up the staff and cancel the surgery because I didn't want her to go through it...but I knew this was not an elective surgery and she had to have it. She was scheduled for surgery at 11:15am and we had to be there at 9:15am. I could feed her clear liquids up to 7:15am, thank goodness that included breast milk. We checked in right at 9:15am. We had to go to an eye doctor right before surgery, so we did that first and came back down, got called back to pre op around 11:30. Where we waited for two more hours. In this time Alice was getting very hungry, it was almost unbearable listening to how upset she was...and I couldn't hold her because she would think I was going to feed her. The one thing I wanted to do and I couldn't. They tried bringing in a baby stimulation machine to distract her which worked for a little while. Then around 1pm the process started rolling very quickly. Jason and I starting to crumble. They said they had to take her now and told me to give her one last kiss, we both did. Then we watched them carry her down the hall as she looked back at us, clueless to what was about to happen. When they turned the corner we fell apart. I thought I was going to collapse...I was shaking so much. I have said this many times but this is unlike anything I have been through before, or was extremely hard and emotional. I had to have faith in the staff to take care of her...I prayed that morning like I have never prayed before, over and over and over...

stimulation machine
Daddy trying to comfort her before the surgery

Jason and I went outside for a while to try and collect ourselves and not long after we heard that the surgery was going well and they were almost done. It seemed like an eternity...however from the time we left her until we saw her in recovery was about 3 hours. I could barely contain myself as we headed back to see her...she was so pale and limp. My eyes filled with tears and we tried to stimulate her but we didn't get much of a response...this went on for a very long time. The nurse began to get concerned and said it was taking longer than usual for her to wake up. She was ghost white and lethargic. She was on the verge of needing a blood transfusion. Dr Magge came to see her and said he would give her another hour and then they would retest her blood to see how her levels looked. Thank goodness in that hour she began to come to. She was in recovery for a total of 5 hours. She was admitted to a room around 10pm. Mommy and Daddy were both physically and emotionally drained.

right after surgery

still trying to get her to wake up

slowly starting to wake up

A little playtime in the middle of the night :)

Alice had a rough time in recovery and through the night. She threw up several times. They gave her morphine initially, antibiotics and nausea medicine. She was still pretty out of it. Jason and I both slept in the room with her both nights. They had a camera on her bed and lots of monitors! We finally ate a little something for dinner and then fell asleep. We woke up around 3am and I tried to feed her...she did ok, showed alot more interest than in recovery but then she threw up again. Shortly after that she perked up though...and even gave us her first smile since surgery. I can't tell you how much I needed to see that smile! We all went back to sleep and when we woke up the swelling had hit...

Morning after surgery
Mommy and Daddy with Alice. Relieved that the surgery is over

her incisions

A little smile

Playing with Daddy

Kisses from Mommy

Her swelling got worse through the afternoon. Dr Magge removed a strip of her skull to recreate a suture from the middle of her head all the way to right above her ear, endoscopically. So she swelled all along that area and her eye was swollen shut. Her eye swelling improved slightly through the day and by the next day it was extremely better! She was actually able to open it.

Day one (left) Day two (right)
You can see in both pictures that she is swollen along the right side her face, where the bone was cut

Alice's bed at the hospital

sitting up in bed

Alice with her Children's National Medical Center doctor bear, her souvenir :) 

We were set to go home but we had some blood pressure issues, it was kind of all over the place so we waited around for a while and wanted to get it redone and make sure all was ok, since we live 2 hours away, we wanted make sure she was good to go. We got the green light and we were on our way. 

I am so thankful we were able to find Dr seems like it all fell into place the way it was meant to be...and it was so much closer than Boston which is awesome for return visits! Dr Magge is such a sweet, kind and wonderful doctor...I couldn't say one bad thing about him. If he has a flaw, which I don't even consider a flaw, is that he works to hard! It seemed like he never went home and like he slept at the hospital. We teased him about this but he reassured us that he did go home to sleep. He is such a great man, I would highly recommend him to anyone that is wanting their baby to have endo surgery for craniosynostosis, the larger surgery or any other neuro procedure. We are beyond blessed that he agreed to meet with us so quickly, got the surgery set up quickly and he was just so good to us. I know Alice was in good hands. 

I set up this blog web address with this long name because I wanted other parents going through this to be able to find this site in a search and to know that there are options out there. This 3 month window for endo surgery that is suggested throughout most practices doesn't mean you have to accept it. I fought to have this endoscopic procedure done for my daughter because I deeply felt like she was mild enough that it could help her. There are very few doctors out there that will push that 3 month window but it is worth looking into. I pray that everything works out and that she won't have to have any more surgeries. 

She gets a post op measurement for her helmet this week and should have it by Friday. Although I know it may be challenging, I still feel it was a better option for Miss Alice Mary versus the larger surgery. Please keep her in your prayers...pray that the worst is behind us and that she will be ok. I don't know if my heart can take anymore...these past few days have been some of the hardest of my entire life. 

The lobby/atrium of the Children's National Medical Center

For parents out there that are looking for info... to my knowledge, the doctors that will push the 3 month window for endoscopic surgery for craniosynostosis are below (up to about 5 months). All three of these doctors/practices were willing to do the procedure on Alice. Please know that this is case by case and the doctor must make the final call...