Monday, December 28, 2015

Finally, some good news. (Kevin's Story, Part 6)

The following few days went by in a blur.  Scott and I both did the best we could to ensure that the kids lives went on as normal. As for ourselves, we were somehow slogging through.  I felt like I was walking through quicksand trying to get through the days.  Every free moment was spent researching our baby's condition and CHOPS (Children's Hospital of Philadelphia) where we would most likely be sent for delivery and, hopefully, for the balloon occlusion.  I read every article and watched every video I could on the different procedures we might experience along with their success rates.  As long as I was keeping busy with research I felt I was at least doing something. I felt so helpless.

We went back to the hospital yet again for a fetal echocardiogram.   His heart had appeared to be normal on regular ultrasound but we needed to look deeper to know for sure.  Having a strong heart would get him one step closer to the balloon occlusion.  Thankfully everything looked great and we went home that day with a little more hope than before.  One small hurdle had been crossed.

Obviously our baby may not survive until birth but Scott and I refused to let our thoughts go too far down that road.  Until we knew otherwise we were planning for what would happen upon his arrival.  Until recently I had never left the twins overnight and very rarely during the day.  The one time I had was when I was admitted to the hospital for complications with my miscarriage.  Now we were looking at having to leave the kids with someone for who knows how long while I spent time in Philadelphia for the baby's birth and NICU time.  Thankfully the military has a good support system and we knew someone would pitch in and help out if we needed it.  While I knew things would somehow work themselves out I also knew that I would be more comfortable if family was here.  We made arrangements for after Christmas for Scott's mom to come and stay with us.

A few days following the amnio we got a call from the hospital.  The first test results were in and we were in the clear.  The most likely chromosomal abnormalities of Trisomy 13, 18, and Down Syndrome had been ruled out!  We still had more test results coming in but knew the chance of him having any of those issues was even less likely.  For the first time we could breathe.  We were another step closer to getting approved for the procedure and being able to fight this thing!

We knew the rest of the test results wouldn't be back until after the holidays.  We focused as best we could on making Christmas fun for the kids and even felt like we did a halfway decent job of it.  We went out to look at the Christmas lights, made treats, and came up with our annual Christmas scavenger hunt for the boys.  We somehow made it through.

A few days later Scott drove to Indiana to pick up his mom.  Those days without him here were some of the hardest I'd had so far.  Up until now I'd had him to lean on and being here to manage things alone was difficult.

Scott was back within a couple of days and I felt like maybe we could get through this after all.  We spent each day going through the motions and waiting for the remaining test results.

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