Friday, December 18, 2015

The Slightest Bit of Hope (Kevin's Story, Part 5)

We had discovered the previous day that our baby had CDH (congenital diaphragmatic hernia).  We had been sent to another hospital for further testing that would tell us the true extent of our baby's issues.  I will never forget how it felt walking into that hospital.  Scott and I were still reeling from the day before and the hospital seemed huge and disorienting.  I was in such a daze that day that if Scott hadn't been there with me I would never have found my way to the appointment. Every step I took felt like it was being taken by someone else.  I didn't feel like any of this could really be happening to me.

We were there early so to kill time we decided to go into the gift shop.  I came across the new baby items and saw the little stuffed pink and blue animals.  Scott and I agreed to buy our baby boy a small blue elephant.  No matter what we heard today he would need extra help and would be spending time in the NICU.  I wanted him to have something from us to keep him company in the moments we couldn't be with him.

After that we set off for the appointment,  I was scheduled for a more detailed ultrasound than I had previously had but beyond that I had no idea what to expect. We were clinging to some sliver of hope that things weren't as bad as they had previously seemed. We were called back for the ultrasound and were greeted by the kindest ultrasound tech I had ever encountered.  She instantly put me at ease.  We were informed that she would take measurements but wouldn't be able to talk to us about what she was seeing.  Immediately after we would speak to a doctor who would explain everything in detail.  I really don't remember much about the actual scan other than being grateful to see our little boy moving around on the screen.  

The ultrasound was completed and after what felt like a lifetime the doctor came back to see us.  We could tell by the look on his face that we weren't about to receive good news.  He explained to us that our baby did indeed have a severe diaphragmatic hernia (the doctor the day before had referred to it as mild) and that the contents of his abdomen had moved up into his chest cavity.  This in turn was restricting the growth of his lungs and pushing his heart over into the side of his chest.  If he managed a live birth he would need surgery to correct it.  Even if he did survive birth there was no guarantee he would be strong enough to withstand a surgery.  He would most likely need ECMO (heart/lung bypass) for a time in order to gain enough strength for the surgery.  We were told that there was a procedure called balloon occlusion that was still in the experimental phase.  This procedure could possibly help his lungs to mature a bit more so that he could survive and gain enough strength to have surgery.  In order to know if our baby qualified I would need to have genetic testing to rule out any other problems or chromosomal abnormalities.  I agreed to have an amniocentesis done later that day.  We were told that there were risks involved, including a slight chance of miscarriage.  In order for our baby to have a chance at survival we needed to have it done.  I agreed immediately.

I was scheduled in for an amnio later that day.  In the meantime we were sent to speak with the genetic counselor.  A lot of what she said in that moment is a blur.  We were told it would be perfectly acceptable to terminate the pregnancy at this point but that we needed to decide quickly since we were nearing the 24 week cutoff.  I remember looking over at Scott in disbelief that this was happening.  I told her there was no way I would ever consider such a thing.  There was no way I could be the one to end my baby's life.  The thought of aborting the baby I had felt, and mere minutes ago watched, moving around inside me was not an option.  I had known things were bad but it was at that moment that it really sunk in for both Scott and I how dire the situation really was.

After finishing up with the genetic counselor I was taken back over to the ultrasound room for the amnio.  I am normally petrified of medical procedures but this time I was oddly calm.  I knew that in order to save my baby it had to be done.  The doctor explained to me that he would use the ultrasound image to guide the needle in and extract the amniotic fluid for testing.  I saw the needle in my peripheral vision and knew that I had to turn away.  I wan't able to look but Scott held my hand and watched the entire thing on the ultrasound screen.  I remember Scott and the doctor talking about how it looked like the baby was reaching right for the needle.  I had been trying to take deep calming breaths and block everything out.  Those words sent me right over the edge and I thought I was going to pass out.  Right as the feeling hit me the doctor announced that he was finished.  He showed us the fluid he had collected in the tube and told us that the initial test results would be back in a few days.  They would rule out the most common chromosomal abnormalities such as Down Syndrome, Trisomy 13, and Trisomy 18.  The more extensive test for the more rare abnormalities wouldn't be back for around 3 weeks.

Following this I was sent to the women's health clinic to have a Rhogam shot.  This was no big deal as I'd had to have them with every pregnancy due to having Rh-negative blood.  The hardest part was having to sit in the waiting room with all the other pregnant women. I couldn't help but look around me and think how they would likely be bringing their babies home in a few short months while mine would either be very sick or even die.  Our baby's life hinged on the hope of an experimental procedure.

By this time I had been in the hospital for hours.  I was exhausted and emotionally drained.  I was finally called back and told that my shot was ready.  The nurse was cheerful and wanted to know when I was due and if I was having a boy or girl.  She asked if I had other children and their ages.  My mind was so addled that had a hard time remembering their ages.  She must have thought I was an absolute idiot.  All I wanted to do was get my shot and get out of there.

I was finally freed to go home.  Our big boys would be home from school now and the twins would be wondering where we were.  They had no idea anything was wrong and we were not about to ruin their holidays.  We had to drive home and have dinner and live our normal lives.  Not just today but for many days to follow.  I wasn't sure I had it in me.

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