Layne’s Story – Part Five

As you can imagine, our first day at The Children’s Hospital of Philadelphia was a lot to take in.  In the days to follow I experienced every emotion possible.  I was scared, anxious, and nervous; but I was mostly happy.  Happy to be in a place that was going to do everything possible for us.  It was such a comforting feeling.  We were where we needed to be and I was ready to take on whatever was thrown our way.  We finally had a game plan on how to proceed with Layne and a lot of hope; and that hope was going to get us through some tough times during the weeks that followed.   

After my first appointment where they drained the cyst I was on strict orders to take it easy.  It was imperative that I gave my body time to heal to help avoid any complications.  I had three days until my follow-up appointment and since both of our parents were still in town, we spent a lot of time playing cards in the hotel lobby to help pass the time.  After what seemed like a million card games it was time to head back to the hospital.   As we approached the waiting room I prayed long and hard for a miracle.  I prayed for the cysts to be gone and for her to be healthy, but at the very least I prayed that the cysts were still deflated.  Shortly after arriving at CHOP for my appointment, I was on the table getting ready for the ultrasound and the technician was lathering up my belly in preparation to start.  To nobody’s surprise the cysts filled back up.  They were back to their initial size and her poor little heart was almost non-existent again.  In addition, her belly was full of fluid and her scalp was still swollen.  These symptoms were caused by her heart being compressed for so long.  Also known as fetal hydrops. We were back to square one and needed to move forward with surgery to place a shunt immediately. That afternoon I was sent home with an appointment the next morning for surgery. 

I arrived at the hospital, November 22, 2019, bright and early ready for surgery. The plan was to create a small incision in my belly and uterus and place a tube like structure in Layne’s cyst that would allow the fluid to self-drain continuously.  This, in turn, would keep the cyst deflated and allow the heart and lungs to expand as they would if the cysts were never there.  This surgery was going to give Layne’s body the chance to grow and develop during the rest of the pregnancy.  Before long I was being wheeled back to the operating room and was being prepped for surgery. Prior to starting, I was given meds to keep me relaxed and asleep.  I remember fighting the sleep so hard.  I was so tired, but I wanted to follow along and hear everything the doctors were saying.  I was able to pick up on a few things as I was falling in and out sleep.  As soon as the surgery was over I remember looking up at the doctor and asking how everything went; to which she replied “it was not successful”.  I remembered feeling so defeated.  Why didn’t it work? I was crushed.  I wanted so bad for this surgery to be successful and for Layne to be ok.  After the surgery was over and I was recovering in our room the doctor came in to explain her theory on why things did not go as planned.  She explained that when she attempted to insert the shunt the cyst collapsed, so she tried again, and it collapsed again. She told us she was not sure why this was happening, but her best guess would be that when the shunt punctured the cyst it created a hole.  She explained that the hole now appeared to be serving the same purpose as the shunt; it was allowing the fluid to drain from the cyst and therefore keeping the cyst deflated.  It was good and bad news.  Bad because she was not able to tell us if this was a permanent fix, and good because for the time being the cysts were not causing any issues.  

Right after we got the news we were cleared to come home we immediately rushed to pack our things and get on the road.  I anticipated traffic being bad, as it was the day before Thanksgiving, but I never could of prepared for how bad it really was.  Phew, I didn’t think we ever were going to make it back! Anywho, we arrived home late and called it an early night so we would be prepared for the next day’s festivities.  Just as we always do, we attended all our necessary stops and ate entirely too much.  It was just what we needed.  It has always been a tradition that Jeff and I go Black Friday shopping with my mother-in-law and some friends, and this year I was afraid I was going to have to miss it.  I was pretty upset, because I do most of my shopping on Black Friday and I look forward to it each year.   To my surprise, my awesome mother-in-law hooked me up with a wheelchair so I could tag along, but not overdo things since I was less than a week post-surgery. 

Our weekend home flew by entirely too fast and before I knew it we were heading back to Philadelphia on Sunday night for an appointment first thing Monday morning.  Just as before, we had no idea how our ultrasound was going to go.  At this point in our journey, I had gotten pretty good at reading ultrasounds.  I could not tell you what a healthy baby should look like, but I knew what a 20-week baby with cysts, edema, and ascites looked like.  We had high hopes the cysts would still be deflated, but as soon as the ultrasound started I could immediately see the cysts had re-filled.  We, yet again, were back to square one.  The cysts were back to their original size and her heart was severely compressed.  I was devastated.  I had no idea what our options were from here.  Within a few minutes the doctor came in and suggested trying the shunt surgery again.  Without wasting anytime I was being prepped for surgery yet again.  I remember laying on the operating table and praying for this attempt to be successful.  I wanted so bad for the shunt to be placed so Layne’s heart did not have to work in overdrive and in turn the fluid in her belly and her scalp would resolve.  Just like before, I remember trying to pay close attention to the doctors and what they were saying, but I was struggling to stay awake.  I wanted to be able to follow along and know if things were working or not.  As soon as I heard them wrapping things up I hesitantly asked if it was successful and to my surprise she said yes.  I was so happy.  I could not wait to get back to the recovery room to let Jeff know it went well.  After the surgery, while I was recovering in the room, the doctor came in to fill us in on how things went and confirmed that the shunts were placed and the cysts were deflated.  She told us that things were looking great and as long as Layne did not pull them out we would be in business.  After a few hours of recovery in the hospital I was discharged on bedrest.  

We had two more follow-up appointments that week, Wednesday and Friday.  Both appointments went well and everything with the shunts were still great so the doctors decided we were stable enough to travel back home to Virginia. At this time, we were released to be monitored every Monday by our local MFM at EVMS and then travel back to CHOP every Friday.  For the first time things were looking up. We were coming home with smiles on our faces and hope in our hearts that all of this was going to be okay.  Layne was going to be okay and we were going to be okay.  

Tallies

Drives to Philadelphia – 1

Ultrasound – 7

Echocardiogram – 2

Steroid Shots – 4

Cyst Drainage – 1

Shunt Surgery – 2

RhoGam shot – 2