Meeting baby Sarah

This past weekend we were grateful for the opportunity to visit a family that has a little girl with Apert Syndrome. She shares alot of similarities with us. Her mommy also found out prenatally that Sarah would have Apert's. She also delivered Sarah at Wake Forest, where Cameron was born. Unlike Cameron, Sarah only ended up spending about 2 weeks in the hospital, and is now home with her awesome Mommy and daddy.

The first time I spoke with Erica(Sarah's mommy)I was taken back to when I was pregnant with Cam. All the unknowns, and the anxiousness that I felt daily was felt in her voice. But she amazed me because she was very excited about Sarah's arrival. She had taken the smart route and instead of spending every waking moment during her pregnancy researching Apert, she decided that she would just wait until Sarah arrived and just deal with it then. I wish I could have been that dedicated when I was pregnant, it would have probably caused me a little less worry. When you look online you are subjected to the good and the bad, and even though Apert Syndrome isn't typically deemed a life sentence, there are some scary things out there, and when you are exposed to the bad, sometimes it's hard to wrap your mind around the fact that that probably won't be you. So for me it was a daily struggle wondering if Cam would be one of the worst case scenarios. But Erica, she just gave it to God and welcomed Sarah, with what her needs were, and has done that ever since. She is an amazing mommy to that little girl!

We spent several hours eating dinner and just hanging out with this great family. They have two older children who are absolutely wonderful. Sarah was there little unplanned blessing! We talked about what we've been through, and some things they have to look forward to and can expect when having a child with this complex syndrome. We also talked about our backgrounds and had an amazing dinner, something I can't wait to try for myself to fix. Seafood Eutofee....had never even heard of it before but Paul, Sarah's daddy, prepared that for us for dinner and it was AMAZING!

Holding baby Sarah was such a flashback for me to when Cameron was a tiny baby. She is still very little and I look at Cam and it's crazy to see how big he is compared to her, and knowing that not too long ago he was that small. I have a new outlook on babies. I loved holding baby Sarah, knowing that there was another real life baby out there that had what Cameron did. Even though we have met another person with Apert, it was different because the other girl was an adult, and sweet Sarah is baby, something I've been exposed to. So it was great being able to touch and feel that similarity. I loved her! She is beautiful and I'm so glad they live so close, so that we do have that connection to another family going through what we are going through. It's also great to provide advice and support. I definitely have a lot to learn, and Cam still has his hand and feet surgeries to go, but he is 8 months and so what he has already been through I'm able to share with them, and that makes me feel good. To know that Cameron is helping me to help others who are just now taking this journey!


Like I've said before, we are so grateful that this family is opening their lives to us. It's been precious for us to have another family that we can be close to that knows our hearts. They feel the sadness of watching their daughter go through multiple surgeries. They also revel in the joys of all the progress she makes along the way. I look forward to the times that Cameron and Sarah can play together and know that they share something special. We had a wonderful time at our visit and can't wait to do it again!

How has 8 months gone by already?

Yesterday I was playing with Cameron, and I looked at him and he looked at me, and I had a weird flashback to when I was pregnant with him. I kept thinking how it seemed to be taking forever to get Cameron here, and now he is already 8 months old. Where has the time gone? Now don't get me wrong, when he was a tiny baby and still in the hospital time seemed to be on hold. I couldn't wait until the next day because I wanted everything to be good and new again. I hated sitting in the hospital all day long while my baby laid in his little bed all helpless and most of the time recovering from surgery. Now I look at him with awe. Even though he is behind in his development, I constantly remind myself where he has come from.

Not all Apert children have such a rough start. In fact we thought for sure we would be one of those families because with the ultrasounds none of his internal stuff was detected. Which still baffles us. Anyway, because we were prepared we thought that we would have Cameron and that although he may have different needs, we thought that he would for the most part be very healthy. But unfortunately that wasn't the case. When he was born, aside from being 5 weeks early, his breathing needed to be aided by a ventilator. The next few days were a blur, but I remember all the tests coming back normal. Then when they tried to feed him and couldn't pass a feeding tube into his stomach, that is when things turned upside down. That is when they discovered the esophageal atresia, and that is also when they discovered his malrotation. Those two things have been repaired and he's had a shunt and the cranial surgery. Things to come are his hands, and feet, and at some point he needs to have a hernia repaired. And later on down the road, we will have to address his heart, because he has a minor thickening in one of his valves that we monitor, but that will one day need to have surgical repair in order to keep it from thickening too much.

So yesterday, when I was looking at my sweet 8 month old, while my head said where has the time gone, my heart said I want it to go faster so that we can have some of the bad parts over with and maybe have some time to just be a kid! Just being a baby is not something Cam has or ever will be familiar with, but my prayer is that we can get to a place where he can just be a kid!! I want so much for him, and yet struggle with not knowing whether or not he will do certain things. But for now, for this moment I'm going to be happy that I have a beautiful, funny, precious 8 month old, and for that I'm grateful!

Flashback Monday!!

So today is going to be my last flashback, because I'm going to talk about Cam's last surgery...which is the last major thing he has gone through...then only moving forward. Cam's head surgery was scheduled and rescheduled 2 times. The first was scheduled for January 5, 2011. Although I was extremely anxious for this to actually happen I knew that it needed to so that we could put it behind us. Cam was 4.5 months old. However on Christmas last year, Cam decided he wanted to catch pneumonia and so we ended up in the hospital during his first scheduled surgery....so it was postponed to January 26th. However, I wasn't comfortable doing it so close to him having such a rough illness so they ended up rescheduling for the third and final time to February 9, 2011. This day gave me severe anxiety. I had a hard time sleeping, couldn't eat. I just kept imagining horrible things happening to my sweet, sweet baby. Then the day finally came and it was the scariest, hardest day of my life.

Cam's surgery was the first of the day, so we arrived at the hospital at 7am. He wasn't allowed to have anything to eat after midnight the previous day so he was a little hungry. But he didn't cry or get upset at all. He just sat there smiling and cooing until we went back to the pre op room. I was a mess. I had a hard time looking at his sweet face knowing that it was about to change, and not only that but that surgery meant that something bad could happen. I couldn't stomach the thought of anything else bad happening to my baby. I was crying, and Cam was just smiling away. We got him dressed in his little hospital gown and then sent him on his way.

Our surgeon, Dr. David made it possible for me to hand him over. She herself carried him to the o.r and promised that everything was going to be OK. Something I know medical professionals aren't supposed to do. But that was what I needed to hear in order to hand him over, and she knew that. She took him and I sat crying and pleading with God to please bring him back safe and to let everything go well. Paul and I left the pre op room and began the 6 hour wait until we would be reunited with our precious Cam once again.

The actual surgery got started at 10 am. It takes a long time to get iv lines started and to make sure his anesthesia is working well. But they called us at 10 am and said they had began the procedure and that they would call us every hour with an update. At 11 I received the first call that surgery was going well and that Cameron was doing great. He had lost minimal blood and they were moving right along. Then at 12 the same thing. They said he was still looking good and that they would call soon with more updates. Well one o'clock came along and no call. This terrified me. Of course the first thing that popped in my head was something was wrong. But then I received a call at about 1:15 saying surgery was finished and that they were closing up. I sighed a huge sigh of relief and thanked GOD.

Dr. David came out and spoke with us. She explained the surgery had gone as planned and that Cam had done great! She said they were still in the process of extubating him, but that as soon as they had that we could see him. I sat crying in Paul's shoulder knowing that the next time we saw our sweet boy he would look different. I knew that the next few days were going to be hard, and I was anxious to see my Cam.

They called us back about 20 minutes later. The first time I looked at him was terrifying. His head was wrapped in a white turban and his face was red and puffy, and he was completely knocked out. Paul had to sit down, just seeing him like that made him nauseous and he didn't know if he was going to pass out, so he took a seat. We both stayed with him until they moved him to the intensive care unit. That is where he stayed for that night. Then the next day they moved him to the step down unit and the day after that to the regular floor. Cam stayed in the hospital for 6 days. Every day he improved and his swelling really didn't get too horrible. They did sew his eyes shut during the surgery, but they removed those sutures on day 3. Then all he needed to do was eat well enough to go home. So on day 6 he was looking good and they let us go home!

This experience was really hard. My anxiety was through the roof, and my heart ached for my sweet baby that I couldn't explain why he had to be in so much pain. But Cameron....He was a CHAMP. He made it easier on me because he handled it so well. He was the one that got me through this, and Paul of course. Cameron is an amazing little guy, and we are so glad that this part of his life is behind us. We know he faces more surgeries, and we know that his life is always going to be a bit more complex medically, but we know that Cam is a fighter, and that even when we don't feel like we can make it through, he gets us through it!!