A nurse told me the first night I saw my boys that the NICU is like a roller coaster. I believe over the past few weeks especially I have experienced the truth behind that. My boys were (and still are!) both doing so well that I was able to see the finish line!! They were both gaining weight well. Breathing well. Keeping their temperature well. Everything was lining right into place! Then the roller coaster kind of decided to jump the tracks for a few days. Literally. The emotional NICU coaster literally jumped tracks from the NICU baby coaster into a whole new one that we have not even begun to ascend. I had a really hard few days and was not really prepared to talk about it, but after reading up on things and mentally processing a lot, I am not so terrified of the future and ready to face what the years to come will bring.
I'm sure anyone reading this now is wondering what the heck I am talking about. On Friday, August 19 my parents came to our house to take care of Athan while Matt and I headed off to the hospital for the boys' 2pm bottle feedings (they are trying their hand at drinking from a bottle all on their own!). We got into the NICU and Dr. T gave us the updates for the day. Dax had been off of any oxygen help for a few days and had begun having a few oxygen D-sats again so they put him back on it and Dr. T ordered a chest xray to make sure he did not have fluid in his lungs or any collapsing of the alveoli. Good news, his lungs look great! Then Dr. T says that when we have a second, he noticed something in the xray that hadn't been remarked upon before and he'd like to show us. I thought nothing of it. We had a few moments with the boys and then went and sat down with Dr. T at the computer. He then showed us Dax's chest xray and explained where his lungs were and his heart and told us that both looked great! Then he continued on to looking at his ribs and spine. He points out that it appears that 2 ribs look to be fused together and at least one vertebrae (maybe two) did not properly develop. The below xray image is NOT Dax, but it shows kind of how his vertebrae look (though not in 2 places like the image shows).
Dr. T explains that he would like our permission to send a referral to Shriners hospital for Dax to be seen by a specialist once his NICU stay is done. As he said this all I could think about was the commercial for Shriners hospitals where the kids are all singing "Imagine" by the Beatles. I always viewed Shriners as a place where only really sick kids went. I NEVER expected that my child would be one of those really sick kids! Matt and I spent another hour or so in the NICU with the boys and I spent the whole time trying not to burst into tears over the news I had been given. How was it that everyone seemed so calm over the situation?
We left the NICU and on the way home I told Matt I did not want to tell anyone about the xray until I had more time to process the information. Basically, I needed to have an emotional mommy breakdown first and I wanted time to myself to have it before I started talking about it.
We got home, gave Athan big hugs as we always do when we get home, thanked my parents for taking care of him (I'm so lucky to have them!) and said bye to Grandma and Grandpa. I spent the rest of the afternoon kind of out of it and finally decided later in the evening that I had to tell someone. I was not going to be able to accept it and process it until I got it off my chest. If I told someone else, it would all be real, I could begin to accept it, fear it and start facing it head on!
I still didn't want to talk about it with someone so I decided to explain it to my mom through a facebook message. As I began typing out the explanation I finally let out all the emotions I had been balling up inside and trying to hide from myself. The fear finally came to me. It was a huge relief. Fear is a completely natural emotion, especially for a mother forced the face the fact that my child had a developmental deformation at birth. Fear is what kicks us into gear and motivates us to act and do everything we can to improve our situation. Fear is fight or flight! I am a fighter (I learned it from my amazing Grandma!) and my 3 boys are fighters as well. Flight was never an option for me, but as I let myself be emotional while typing out my explanation of what was going on, I could feel the fight in me begin to kick in.
I finished typing my knowledge of what was going on with Dax's spine and sent it to my mom only to realize a few minutes later that she only got the last part of the message. All the emotions I had put forth to explain everything were simply lost in the facebook cyberspace abyss. Now, based on the little bit of information my mom got from the message, she only knew something was wrong and had no clue what. Of course, she immediately began calling me. I wasn't sure I was ready to talk about it out loud yet and I ignored her first million calls (it really seemed at the time like she called me 20 times within 5 seconds). Finally I answered the phone and began to explain everything. Out loud. And I really let it out.
I remember back to when I was maybe 11 or 12 and fell while riding my bike at a friends house. I scraped up my knee really badly. I even have a large scar now from the fall. I remember that I wanted to be tough and not cry over it. I don't recall it even hurting that bad. I scraped my knee up and it was ok. My friends mom drove me home and I was fine the whole way. However, as soon as I opened the door and saw my mom, I burst into tears! It's funny how sometimes all a girl needs is her mommy to be there to let it all out. That is exactly what I did as I explained everything to her. I let it all out. And after I felt so much better and completely ready to do whatever I needed to do for my baby boy. My mom, despite the fact that I know she herself was devastated by the news, stayed calm and explained that there is a lot they can do for Dax and that everything would be fine and Dax would be fine.
After speaking with my mom, I began googling spinal malformations to try and gather information and I was so saddened to see some things that sweet innocent little babies have to suffer through. As I saw how bad some babies situations are, I realized how grateful I am. There are many babies out there who are far worse off than mine. Don't get me wrong, I wish every morning, noon and night that my children did not have to endure all that they are going through. But I believe that there is always much to be grateful for in the world and I am a firm believer in truly appreciating all that we have been given in life.
Since Friday I have learned more about Shriners Hospital. I realize now that it is for any child with special medical needs and not just extremely sick children. I look forward to getting my first call from there and getting a chance to speak with a specialist about everything that my beautiful Dax is going to need to grow happy, healthy and strong. And I look forward to giving him all those things. From what the pediatrician (who is not an expert in these things) has said. His abnormal vertebrae can likely be fixed through surgery and it is not affecting him at all right now. Essentially, it is likely to cause something like severe scoliosis later in life. Can't wait to talk to a specialist to find out our specific plan of action!
This is my family. A year ago when Matt and I decided we wanted another baby, we never expected our little family of 3 to become 5. We never expected to have 3 boys. We never expected to be preemie parents. And we never expected that one of our children would ever need to be referred to Shriners hospital. However, this is where we are. I am so grateful for the fact that my little family of 3 is now a not so little family of 5! I am so grateful that my boys, who entered this world way before they needed to, are growing and getting healthier day by day. I would give anything to take all the pain and trauma my boys have endured away. But I am so grateful that they have endured it and are beating it day by day. My children are the most amazing little beings I have ever met and I could not imagine my life being any different!
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