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.

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.

Thursday, December 17, 2015

The Storm Begins (Kevin's Story, Part 4)

It was a week before the scheduled anatomy scan and I was having second thoughts about going alone. I talked to Scott about it and we decided to get a babysitter so he could go with me after all.  It wouldn't feel right not to have him there.

We initially hadn't wanted to find out the gender but I was so convinced I was having a boy that I reconsidered.  Our new plan was to learn the gender at the upcoming 3d ultrasound.   Both of the older boys would be there and I knew it would mean a lot to them to find out with us.  We had a feeling this would be our last pregnancy and wanted to let the boys be as involved as possible.  We decided we would let the boys make a gender announcement video to share with family and friends back home.  We already had names picked out for a boy or girl but planned to keep that a secret until the baby was born.

I woke up on the morning of the 17th with mixed emotions once again.  I felt a little off all morning but chalked it up to sadness over the miscarriage and the fact that it was the 17th.  Scott and I arrived at the appointment and I was taken back to the same room where I had learned that our last baby had no heartbeat.  I tried my hardest to block that out and focus on why we were there. Scott and I decided we couldn't wait to find out the gender after all and told them to go ahead and tell us. We would still wait to let the boys find out at our next scan.

The tech began the scan and quickly found a heartbeat.  She asked if we wanted to know the gender and we said yes.  She scanned over and announced that we were in fact having a boy.  I had been right all along!  I remember looking over at Scott and saying, "I told you so!"  She began taking measurements.  She was very quiet as Scott and I chatted about how crazy our house was going to be with another boy. The tech went over the abdominal/chest area a couple of times.  She told us that the baby was being very still and she needed him to switch positions so she could see to get measurements.   She left the room for a few minutes and I paced back and forth and pushed on my belly hoping to get him to turn for her.  I had commented to Scott earlier that morning about how still and calm the baby was being so neither one of us was surprised that he wasn't cooperating.

A few moments later a different tech came in and said he would be continuing the scan.  I lay back down on the table and watched him redo measurements that I had sworn the last tech had already done.  I was beginning to wonder what was going on when a doctor walked in and introduced himself to Scott and I.  I will never forget the looks we gave each other at that moment. There are no words to describe the fear we had in our hearts.  Never in any of my other pregnancies had a doctor come in mid ultrasound unannounced.  This could only mean bad news.

He told us that our baby had a birth defect called congenital diaphragmatic hernia, or CDH.  For whatever reason his diaphragm hadn't closed properly.  His stomach was protruding up into his chest cavity and pressing into his lungs.  This would prevent his lungs from developing as they should.   He was unable to tell us the true severity but we knew at minimum he would need corrective surgery after birth.  We were referred for a more in depth ultrasound at a larger hospital for the following day.  The entire time the doctor was talking I was sobbing uncontrollably.  This couldn't be happening to us.   This was the miracle baby who had been given to us against all odds.  We never thought we could ever have another baby on our own and yet here we were.  This couldn't be real.

We walked out of the hospital that day with our heads spinning.  There was something wrong with our baby.  We had no idea how we were going to go home and take care of our other children like everything was normal.   Our world had just come crashing down around us.

Neither Scott or I had heard of CDH before.  The first thing we did when we got home was get online and do as much research as we could.  We found the CHOP website (Children's Hospital of Philadelphia) and read everything we could about the condition.  Depending on the severity of his birth defect our baby could have a survival rate as low as 50%  If it was a severe enough case he would need ECMO (heart and lung bypass) until he was strong enough to possibly withstand the corrective surgery.  He could spend weeks or months in NICU.  This was real.  Our baby might not survive this.  We were a military family hundreds of miles from family.  We had no idea how we were going to get through this and we had no idea how we were going to care for our other children while we did.  We felt completely alone, completely lost, and didn't know where to turn.  All we could do now was wait for our appointment the following day and hope for the best news possible.  Whatever it was we wouldn't tell the kids until after Christmas.  We wanted to give them the best holiday we could before breaking the news.

Wednesday, December 16, 2015

The Calm Before the Storm (Kevin's Story Part 3)

Scott and I had conflicted feelings about having the anatomy scan on the due date for the baby we had lost.  I considered calling back and rescheduling but didn't want to push it back any later than it was.  While it would be hard to have it done on that day I thought maybe it would be helpful to also be able to see this new life that was growing inside me.  The conflicting emotions were intense.  If the baby we had previously lost had survived then the one I was currently carrying couldn't exist.

I still had moments of fear from our recent miscarriage and I think Scott felt it even more intensely than I did. He was hesitant to begin buying anything or to make too many plans because of what what happened a few months before.  I decided I wasn't going to let the outcome of my last pregnancy steal the joy from my current one.  Of course I still grieved over what we had lost but we had a new life to plan for and look forward to.  

We hadn't found out the genders with our twins and I decided I didn't want to find out this time either.  I began to slowly plan the nursery and decided on a gray and yellow color scheme with a "You are my Sunshine" theme.  My grandma Margie often sang the song to my sisters and I when we were little.   I thought it would be nice to incorporate that into the room.  I chose a white crib and a gender neutral car seat, both of which we had delivered to our house.  Even though we didn't want to find out the gender I was convinced I was having a boy.  I was so convinced that I bought a boyish looking swing.  I came across Sesame Street baby bottles with Cookie Monster, Elmo, and Big Bird that reminded me of my older son Xander when he was a baby.  I had to have those also.  I would look at what I had chosen and laugh at the thought of being wrong and having to use these things for a baby girl instead.  

Weeks went by.  My sister came to visit.  We celebrated Halloween followed by my birthday and Thanksgiving.  I was constantly aware of how far along I should have been with my previous pregnancy and the fact that I should have been bringing a new baby home shortly.  The one thing that made life bearable was the life I was carrying inside me and the idea that I would soon be seeing my baby again on ultrasound.  I was excited but also scared at the thought of soon caring for a newborn and rambunctious two year old twins.  I wasn't sure how I was going to handle it all but kept telling myself that it would all fall into place.

Scott and I scheduled a 3d ultrasound for my 25 week mark.  It was something we had wanted to do with the twins but I had been so sick during that pregnancy that we never quite got around to it.  Scott and I discussed it and decided that he would stay home and watch the twins while I was at the anatomy scan.  The 3d ultrasound would be shortly after and he would attend that one instead.  We wouldn't have to pay for a babysitter twice and he wouldn't have to miss an extra day of work.  

We decorated for Christmas and the entire time I thought about both the baby I should be holding at Christmas and the one who would be arriving in a few months time.  It was a season of both joy and sorrow.  

We began making more concrete plans for the baby's room and decided to combine our two oldest boys into the largest of the kids' rooms. We would give our oldest sons room, which is smallest, to the new baby.  We would start changing things over at the beginning of the new year when things were more settled down.  In the meantime we counted down the days until we would see our baby on ultrasound again.  For now we would enjoy our last Christmas together as a family of 6.