The first time we saw our daughter was around 3 am the day after she was born. She had made it through surgery and was in the Pediatric ICU. On the way over to see her, we didn’t know what to expect. Having been awake for almost 24 hours, walking into her room was overwhelming on a whole different level. Our daughter was 7 lbs 7 oz and 21 inches at birth and was dwarfed by the bed she was laying in combined with the amount of equipment surrounding her sustaining her life.
She was still intubated and on the ventilator with a humidifier. She had IVs and central lines placed all over her body. From the photos I have, I can count at least 18 different medications and fluids being pumped into her tiny fragile body. Then there were the four chest tubes draining fluid from inside the chest cavity. Next to those were the wires running out of her chest going to an external pacemaker to make sure her heart kept beating. She looked so precious and innocent yet at the same time so lifeless laying in the middle of it all motionless.
On top of everything else, in the middle of her chest was a blue rubber material covering her open chest cavity. It was put in place to protect her heart and body from infection. She was so swollen from the surgery that the doctors were unable to close her up. The material was so thin that you could see it move as her heart was beating.
We stayed in her room for probably an hour or so. During that time my wife and I were updated on her conditions, the surgery, and what they found once they opened up her little chest. Upon starting the surgery and getting into her chest they discovered she has a pneumothorax. A pneumothorax occurs when air leaks into the space between your lung and chest wall. This air pushes on the outside of your lung and makes it collapse. The doctors believed it was caused by over ventilation and not a preexisting birth defect.
After spending time with her, my wife and I went back to my wife’s room to get some sleep and prepare for being with our daughter later that day. The first day after surgery, October 26th was a day to monitor her conditions and not make any unnecessary changes.
October 26-27th
During the night of the 26th, she has some issues with pulmonary hypertension. Pulmonary hypertension is high blood pressure in the arteries to your lungs. Our daughter’s issue with pulmonary hypertension was caused by her heart condition prior to having corrective surgery. The TAVPR condition caused abnormal and restricted blood flow from the lungs to the heart, which in turn increased the pressures in the lungs higher than what they should have been.
In the first couple of days, she dealt with pulmonary hypertension several times. One of those times was when we had just arrived at the PICU from my wife’s room. At the front desk of the PICU, you could see our daughter’s room. Looking at her room we could see 4-5 doctors. Walking up to that many doctors in her room caused some brief anxiety as we weren’t sure what was happening. Once we go into the room, the staff gave us an update and they were able to stabilize her. We spent some time with her but she had another bout of pulmonary hypertension. At that time we decided to let the doctors work and returned to my wife’s room so my wife could get some rest also.
October 28th
On October 28th they were working on reducing some of her medications to allow her body to do more of the work. Her color was starting to look better as well. When she was born she was purplish-blue. After the initial surgery, it got progressively better over several days. The cardiologist let us know that our daughter was making progress and doing good. The surgeon also met with us and was hopeful to be able to close her chest the next day on the 29th. The evening of the 28th they took her off the paralytic which she tolerated.
Incredibly Tough Decision
Someone I haven’t talked about much up to this point was our son who was 10 when his sister was born. The original plan was for him to stay with his grandparents for the few days my wife and daughter would have been in the hospital. It was only 15 minutes or so away from where my wife was delivery and he would be able to come to see us every day.
Leading up to the delivery our son made a heartbreaking comment to me. It was something along the lines of, I know what is going to happen I have seen it on TV. I was perplexed as to what he was talking about and asked him to clarify what he meant. He was talking about his sister and when she comes home he will be forgotten about since there is a newborn in the house.
I was shocked he would think that but looking at it from his perspective he was an only child for 10 years and didn’t know what to expect. I reassured him that while his sister might need extra care since she is a baby, we wouldn’t forget about him, Fast forward through the birth and complications and it is almost like he had a premonition something was coming.
On October 28th our son had come up with his grandparents to spend time with us. It was late in the afternoon and I can still visualize when it was almost time for them to leave. We were all in my wife’s hospital room. The next day our son was having a football game that he wanted us to be at. At the same time, our daughter was having another surgery to close her chest as the swelling had gone down enough.
As a parent having to choose between your children is an impossible task. Sitting in my wife’s room so many thoughts were going through my head. Remembering the conversation about him being forgotten, do I go home and watch his game? On the other hand, our daughter is having another major surgery and what if she doesn’t make it through surgery and that morning is the last time I get to see her? Thinking about the tough choice I was facing, I held back many emotions. When everyone had left the room I stayed behind and broke down.
What is the right choice? How do you choose between your kids? One will remember and one won’t. I sat there for what felt like an eternity but in reality, was only several moments before our son walked back in. I can still visualize his face when he saw me. He seemed confused as to why I was upset. At that moment I wasn’t able to speak to him but I remember motioning for him to come over and I was able to give him a hug.
This moment in time is one I remember as if it was last week and one I won’t ever forget. It was an impossible decision and one I hope I never have to face again. For those that are curious, I made the tough choice to stay and see our daughter the next morning before she went into surgery.
October 29th
The 29th arrived with a good night the previous night. The day started with surgery to close her chest which occurred without any issues. After surgery, she was still sedated but no longer on the paralytic. At times she was able to open her eyes slightly, move her mouth, and wiggle her tiny little feet. As time progress from the surgical repair, her heart was getting stronger but she was still in complete heart block. Complete heart block occurs when the electrical signal can’t pass normally from the atria, the heart’s upper chambers, to the ventricles, or lower chambers. In our daughter’s case, they believed the heart block was caused by her surgery and would go away with time as the heart healed.
It was also during this time that a nasogastric (NG) tube was placed. The NG tube is a flexible tube of rubber or plastic that is passed through the nose, down through the esophagus, and into the stomach. In our daughter’s case, it was put in place to start oral feedings instead of having it delivered through an IV. The IV nutrition was stopped and a feeding pump was utilized to feed her through the NG tube.
Before all of the medical issues, the plan was for my wife to breastfeed our daughter. Once my wife was off the meds she was taking after the delivery she started pumping and we were able to store it in a fridge located inside the PICU. That breast milk is what was used to feed our daughter through an NG tube.
My Wife Discharge and Our Housing Situation
During my wife’s inpatient stay, we had several consults from hospital staff about our housing situation once my wife was discharged. The initial thought was for us to stay at the Ronald McDonald House which was located near the children’s hospital. After gathering some preliminary info from us it was determined that we lived a few miles too close to the hospital to stay at Ronald McDonald even though it was about an hour and 10-minute drive for us to the children’s hospital from our home.
Later that same day we were advised that the distance rules had recently changed and we lived far enough away to be able to stay at Ronald McDonald. The next issue was them having space available. It wasn’t until my wife was discharged on the 29th that a room became available for us to stay in. For our stay at Ronald McDonald, we had a private room with a bathroom that was for us to use.