parenting · rare disease · VACTERL

Emotional Birthdays

Seven years ago today I woke up anxious and excited. Today was the day our baby boy was going to be born. My husband and I gathered our things and took the two minute drive to the hospital in the little town we were living in. We had every anticipation that everything should go smoothly. All tests, ultrasounds, etc had been good and I was now 1 day late and ready for him to finally be here! Labor and delivery went relatively smooth and at 4:49 pm our son was born. All that pain disappeared, I felt relief, joy and love. I held him for only a few seconds, so quickly that no photo was even taken. We noticed his first birth defect right away but the doctor assured us that it was more common than most realize and that it would be an easy surgical fix once he got a little older. I was nervous about it but other than that he looked healthy so I tried to relax. The nurse took him to be checked, then stated he needed to be checked more throughly in the nursery. I was so exhausted that I really didn’t give this much thought. Little did I know, one of the best days of my life was about to become one of the worst.
Shortly after he was taken to the nursery, a nurse came into my room with food and water. I was told I needed to drink and eat as much as I could. This seemed really strange as my epidural still hadn’t worn off and I wasn’t even thinking about food. What I know now is that she was trying to give me strength for the news I was about to receive. About 10 minutes later the pediatrician walked in to our room and shut the door. We knew instantly something was wrong. He introduced himself then started to explain that our son had a condition that needed to be corrected ASAP. The closest hospital that could treat him was in Lubbock, 100 miles away, and they were sending a helicopter for him and we would not be able to go with him. He would need surgery right away and we would be there 2 to 3 days. My doctor agreed to discharge me 4 hours after birth so that we could make the trip to Lubbock. Then 10 minutes after the doctor had left our room, he returned to tell us that the helicopter would not be fast enough and the hospital had decided to send a jet. I was in total shock, devastated, confused. In a matter of an hour I had felt every emotion possible and the next 23 hours would be no different.
While we waiting for the ambulance to arrive, we stood over our baby in the nursery. They wouldn’t allow us to hold him due to his condition. This is the most helpless I think I had ever felt, my baby was hurting and I couldn’t even comfort him. I will never forget the sight of the transport arriving. Two transport nurses, two paramedics and a police officer. The police officer was there to escort the ambulance to the jet waiting at the airport. This site was terrifying, it was like something from a movie. I remember thinking this is just a nightmare and I will wake up and everything will be fine. They immediately went to work placing what seemed like a million tubes and wires preparing him for transport. Then they placed him into a “baby box” and wheeled him into our room to say goodbye. This is the moment I remember shutting down. I emotionally could not handle turning my two hour old baby over to complete strangers to take him 100 miles away from me. I remember very little of the next couple hours while we waiting for me to be discharged except that it felt like a lifetime!
Once I was discharged, we rushed back to our house to pick up a couple changes of clothes then we hit the road to Lubbock. The drive was painful, both physically and mentally, just think about sitting in a truck for an hour and a half within a few hours of given birth. I was miserable and I just wanted to be with my son. Once we arrived the nurse took us back to see him. It was very late at night at this point and it was past visiting hours in the NICU but they made an exception for us. We could only stay a minute and it was so hard to leave him there, I just wanted to stay with him. He looked so alone in the little box with a tons a tubes and wires. But we had no choice and went to check into a hotel and that night we cried ourselves to sleep.
We slept only a couple hours then headed back to the hospital. As soon as we arrived at the hospital, his doctor met us at the door to the NICU and pulled us into a meeting room to discuss his condition. We learned that they would operate within the hour and that through testing overnight they had discovered yet another birth defect. My husband and I felt defeated and guilty, like we had done this to him. After the meeting we were taken to our son. They were prepping him for surgery and since they were about to move him from his box to a surgical bed, we were finally allowed to hold him for a minute. Finally some happiness! But it was short lived and we walked with him down to the elevators and watched the nurses and surgeon take him off to surgery. At just 16 hours old he had the first of four surgeries. After the surgery, we were told that it went well and our baby was so strong he was trying to wake up during the surgery despite the anesthesia and pain killers. To this day, he is still the strongest person I know!
Due to everything that happened that day, his birthday is an emotional rollercoaster for me. His birth is definitely something to celebrate but at the same time, the day he was born was traumatic. I cannot think about how far he has come without thinking about where it all started. These memories are painful and because of that I always need a moment on his birthday. Over the years I have discovered that if I do not do this, the moments will find me and usually at the wrong time. I find a moment where I can be alone without judgement. The first couple years I tried to talk with others about my feelings, however people who have not experienced something like this have a hard time understanding what it feels like. I was usually told to focus on the good, and while I know people mean well by saying this, it just made me feel guilty for the feeling I was having. I now understand that my feelings are normal and that if I just take a little time alone, I can focus on him the rest of the day. We made it through that day by the grace of God and we know that God is going to use our son in amazing ways because of all this. As I remember that day, I cry, then smile through my tears, then wipe them away. Now it’s time to CELEBRATE!

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