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For 9 months you anticipate the arrival of your baby. For 9 months you plan, sing, cry, laugh, and labor over the moments to come. No one can prepare you to have a child with a complication. Our son, John Martin, was born on January 6th, 2018. Perfect. He was and is perfect. Yet, the doctors didn’t tell us this. The joy of the moment that we labored 9 months over was snatched away by one word. Meningocele. For any non-medical people (such as myself) a meningocele is a fluid filled sack protruding from the spinal column. How could this perfect human being have something the size of a golf ball on his spine? Andrew (my husband) and John were life flighted to the Neonatal intensive Care Unit at Denver Children’s Hospital 2 hours after delivery to be prepared for surgery the following day.
John had his meningocele removed without any complications. Everything ended up being the best case scenario. We stayed at Denver Children’s Hospital for a week. NICU staff is wonderful and did a great job taking care of John. We need to be extremely thankful for modern medicine. As expected, we have to continue going back for regular check ups. John is considered a spina bifida case, but he will lead a normal, healthy life. We are very blessed.
Emotions parents go through when their child is ripped away from them is unfathomable. Sometimes I look back and wonder how in the world I did not go crazy. I became practically emotionless during a lot of this. Getting through these hard times requires several things.
I must admit, I was not very good at praying at the time. It is easy to get overwhelmed with doctors, information, emotions, and lack of sleep. Be patient with yourself and trust in God. This is a hard time.
You Must Have a Support System While Staying in The Children’s Hospital
Andrew and I were fortunate enough to have both of our parents in town when John arrived in the world. Our families only live 2 ½ hours away. Yet, if they wouldn’t have been there when he was born, he would have been baptized and life flighted before anyone could have arrived. Fortunately, Andrews family was able to go to Denver with him and my family could stay in Laramie with me.
We both needed emotional and physical help. My mom slept with me in my hospital room (considering I was recovering from labor) and Andrew’s parents stayed in John’s room while Andrew caught up on much needed sleep. (We had been up for 2 days straight). Our families provided food and support.
Somehow Get Your Own Essentials to the Children’s Hospital
Living in a hospital is not easy by any means. Living in a children’s hospital is even harder. Don’t get me wrong, the set up for the baby is amazing, however, the parental set up was not ideal… especially not for someone who just had a baby. My family was at the children’s hospital for a week and we lived in the hospital room with John. For the first half of our stay, the room didn’t even have a personal toilet (we eventually moved rooms). Anyone who has had a baby knows a bathroom is something that is kind of essential for a new mother. If you stay at the hospital like we did, you will want your own pillow and other objects you might care to have.
Remind Yourself it Could Always be Worse
When you are in the middle of it all it is easy to think you have it worse than anyone. At times, it can be hard to look on the bright side. But you need to look on the bright side. You get to love your little one unconditionally. If you look around and talk to other parents, you will probably see worse situations and somehow become thankful for your own. A week felt like an eternity in the children’s hospital, but we met a couple who had been in the children’s hospital for over 30 days and were not sure when they were going to be released. And yet I know someone whose twins were there for 3 months. Someone always has it worse.
This Time Is Difficult and It Is OK to be Upset
Don’t think you have to be completely stoic and strong every second. Having your child go to a children’s hospital is hard. Let yourself cry, talk about your worries, and don’t be afraid to ask for help.
Don’t Blame Yourself
While I was in the children’s hospital my uncle told me that the likelihood I did (or did not do) something to cause this was the same likelihood that baking him cookies would have prevented it. It wasn’t my fault and it isn’t yours either.
Ask Any and All Questions
Understand what is happening. Keep a notebook with a running list of questions to ask your doctors and WRITE DOWN WHAT YOU ARE TOLD. I cannot emphasize this enough. I did not do this and I have no idea half of what I was told. You are mentally and physically exhausted. You think you will remember, but the truth is you probably won’t. Half of the time what you do remember is wrong. Ask your questions and remembering what you have been told will put your mind at ease. Also, if a doctor sees you have a notebook of questions, they are more likely to not run out the door as fast. The doctors will know you are put together and serious about the information they tell you.
Finally… Know You Can Do It and You Will Go Home
I am so sorry if you are going through this. These times are hard but you are strong and you will get through staying at a children’s hospital. I had several people tell me this experience is like PTSD. Having a child with an issue is traumatizing and can take some time to heal. But as you can see, I am writing this just a few months later with a beautiful, happy, prefect boy sleeping next to me. It is going to be okay.
If you are a Preemie parent, Andrea Boring is a mother of 5 preemie babies and has complied a list of 5 Amazing Resources for Preemie Parents.
I would love to hear your story in the comments. If you need someone to talk to during your stay at a children’s hospital please reach out to me!