My wife and I were talking about the blog one day and she said "You should write a guest blog." I Just kinda smiled and continued on to a new topic. The next day she approached the topic again and I asked her what part of it I should write about and she said whatever I wanted. Well there are about a million different things that I could write about that have changed since the day we found out about Emily and CDH. After a lot of thought and reading some of the wonderful blogs that others had written I decided not to overthink things and just pick a few topics and do my best. So here it goes.
We all remember where we were the moment our heart dropped to the bottom of our stomach when we found out something was wrong with our baby. That first moment you heard the term CDH. I told my wife we weren't going to google it and worry ourselves about anything until we found out more about what exactly it was and how serious things were. Who was I kidding? The first thing we both did when we got away from each other was research what CDH meant. The doctors had told us that obviously it was serious, but the more we looked into it the more real it got. Only 50 percent make it 1 year. Thats scary right there. Think about that. I mean really think about it. That means if whoever is reading this has a baby with CDH that odds are only one of our babies makes it. To make our situation even tougher is Emily was a twin. Her twin Avery showed no signs of any issues which was great, but twins are already higher risk before throwing in the CDH. After meeting with Doctors at the Children's Hospital Of Philadelphia (CHOP) we had one doctor tell us after running a full day of tests that based on the findings that she had less then a 10 percent chance of survival.
After we took a step back from the situation we started to put together a plan. We switched doctors and what a great decision that was. Through all of this there have been more doctors than I ever thought I would meet, but I will forever be greatful to this man. It is so important to feel comfortable with your doctors when you are going through this. From the first moment we met him we could just feel that he was on our side and really cared. I'm sure reading this you are thinking of a doctor or doctors who really made a difference for you. We sat down and came up with a plan. We live in Virginia, but it was decided that my wife would relocate to Philadelphia at 37 weeks and we would deliver at CHOP. It would be tough, but we would make things work. The girls were due in April and things were scary, but we had a plan. The girls wanted to make sure we knew that they were in charge and didn't care about our plans. So on February 3 2014 they made their entrance into the world at 31 weeks. It was during a snow storm so there was no way of getting my wife to Philadelphia. My wife just happened to be at a schedules doctors appointment when he could tell something wasn't right. He offered to cancel all of his appointments for the rest of the day and drive her to the hospital himself. She declined his offer and drove herself, but this doctor and his whole practice are amazing and we are forever in grateful to them for all that they do.
February 3rd 2014.
I work at a Career Center for young adults with special needs. I am sure that the teachers I was working with that day will never forget my face when I got the call from my wife that I needed to leave and come to the hospital right away. I got to the hospital and there were what felt like 50 people in the room with my wife. The doctor told us that we had to prepare ourselves for the fact that both babies may not make it out of that delivery room.
The Delivery Room
It has been one year since that day and I still remember every single detail from that delivery room. I remember the sense of urgency in every step that was taken and every word that was spoken. I remember when Avery was delivered. I remember Emily when she was delivered. I remember her color, I remember that she wasn’t breathing when she was born, I remember when they placed the tiny ID Band on Avery. I remember when the one nurse went to place the ID band on Emily's foot and the other nurse gave her a sad look and shook her head no. I know that look. That look was this baby isn’t going to make it. I remember the silence. The horrible silence of your baby not making a sound. I remember the nurse asking me If we wanted Emily baptized before she passed away. They brought her over to Samantha so that she could see her once. I looked down in my wife's eyes as she lay there shaking and crying. Her vitals were dropping. What do you tell your wife when you are losing you baby? I held her hand and looked her in the eyes and told her that I loved her and that everything was going to be okay. Everything was falling apart in our world, but she needed me at that moment. We needed each other.
I am going to be 100 percent honest with everyone. I was writing this last night and got to the part about writing the details about the night they were born and I just lost it. It led to a really great conversation with my wife about life and how hard this last year was. With that being said I cant go into detail like that with everything that has happened this year or else I would never stop writing.
The NICU and PICU
Avery was born 3 lbs 8oz and Emily 3 lbs 3 oz. They took both girls to the NICU. What an amazing place that is. The nurses and doctors that work in the NICU with the sickest of the sick babies are wonderful. I could never ever in a million years do what they do. If you have had a baby in the NICU you know what I am talking about. Avery spent 41 days in the NICU and is doing terrific. Emily spent her first 118 days in the NICU and has been taking turns between Home, Fairfax Hospital, and CHOP. Unfortunately there has been a lot more time in hospitals then at home. She has spent less that 100 days at home over her first year. She has had 7 surgeries and gone back and forth from Virginia to Philadelphia a lot. She has obviously had a really rough first year, but she is where she is now because of her wonderful NICU and PICU nurses and doctors. Both CHOP and fairfax have some of the nest doctors and nurses in the country and we were lucky enough to get to know them. They will never know how much they helped us get through things.
I cried, a lot. And its ok. I like to talk about my kids, and sports, and how amazing my wife is, but sharing my emotions isn't really my thing. In the beginning of this journey I didn't want anyone to see me get upset, especially not my wife so my choice was in the car. I have about a 40 minute ride into work and that's where I would let it out. I cried almost everyday going to work. I hated myself for not being able to be with my daughters while they were fighting for their lives. I hated not being able to be there for my wife to hold her hand while she was going from one isolete to the other in the NICU. I hated being in Virginia while she was in Philadelphia, but I couldn't let anyone see that. I know everyone knew how hard it was, but I didn't want anyone to see. I have gotten better especially with my wife about sharing my emotions. While I was writing this and I was recounting the details of the NICU I got emotional and had a good chat with my wife about it.
On the first date that my wife and I ever had I joked with her that I would give her 70 good years, but that she was on her own after that. After going through this year she gets whatever she wants. I have heard statistics of how many parents end up divorced when they have a sick kid. After going through this year I get it. I completely understand how it tears apart relationships. But not us. We refused to let it tear us apart.We were always on such an emotional roller coaster and things seemed to change every minute. Its easy to take it out on the one person who is going through it with you. Its not fair, but when you are going through so many emotions more times than not it was my wife who would deal with me letting them out. Sometimes in a positive way which would lead to great conversations. Sometimes in a negative way that would lead to arguments and even more stress. I would be the first one to tell you that I am far from perfect and that if it wasn't for my wife our family wouldn't have made it through this year.There were weeks at a time that she would be in Philadelphia and I was in Virginia. We have 4 kids so there were times that she would be in Philly with Emily and the 2 other young ones and I would be in Virginia with the older one. He had to go to school and I am working 2 jobs so having to be in Virginia away from my wife and daughters just killed me. The things that my wife has done this year are nothing short of amazing. She has been by Emily's side every single step of this journey.She has found her voice when it comes to standing up for what is right for our kids. We have loved most of the doctors and nurses we have come across, but she has no problem letting them know if she thinks things are right with our kids. Not only has she been with Emily, she has been raising our other 3 kids too. She has put up with me. Our kids just light up when they see her enter the room. What a cool feeling it is for me to know how much our kids love her and need her.She is such a wonderful Mom and Wife and we are so lucky to have her. I will say it again, We could not have made it through this year without her.
I feel like I haven't done a good enough job of thanking anyone who has helped this last year. Thank you doesn't seem to be enough. What an up and down emotional roller coaster this journey has been. I wrote this over 2 days. The first day was the tough day dealing with all of the sadness and tough stuff that happened in the beginning. Day 2 of writing turned into a love fest as I tried to write about all the good people and things that have happened. Day 1 of me writing this Emily was laying in her crib at home with us. Today she is back in the hospital. That is how quickly things change. I will end with this. Tuesday our girls turned 1... A day that we never thought would come. A day half of all CDH families never see. We are one of the lucky ones. This has been the toughest year of our lives, but look where we are. Look at how far we have come.