Layne’s Story – Part Six

Let’s recap, on November 14, 2019 Jeff and I were patiently waiting for our appointment with our OB for our regularly scheduled anatomy scan. We were almost 19 weeks and up until that point things were going smooth. I never experienced morning sickness, and other then being extremely tired in the first trimester, I was having the perfect pregnancy. I was starting to get the cutest little bump and had even felt her kick one good time. Things were going so great and we were so excited to get that little envelope with what baby Y was going to be as we had a gender reveal planned for that upcoming weekend. As we were called back to start the ultrasound Jeff and I were joking around and being silly, just as we normally are, each casting our votes for the gender. Within minutes of the sonographer starting the scan you could tell things were not good. That’s when we found out Layne was sick. She had fluid in her abdomen and chest, swelling around her scalp, cysts (macrocystic and microcystic) in her chest, and her heart was displaced and extremely compressed. It wasn’t until the very next day, at our appointment with the MFM’s, that we found out her diagnosis. She had CCAM, Congenital Cystic Adenomatoid Malformation. We found of that her case was extremely severe and our prognosis was grim. Even with such a poor prognosis Jeff and I were willing to do whatever possible. Our baby still had a heartbeat, a strong one at that, and we were going to fight and advocate for her until we were blue in the face.  After we had exhausted all the medical help in our immediate area we were referred to the Children’s Hospital of Philadelphia, also known as CHOP. They were our last hope. Once we arrived, five days after receiving the news Layne was sick, we had our first appointment. That first day they confirmed her diagnosis and severity and drained 30 cc’s of fluid from the cysts.  Within the following two weeks the cysts had filled back up and we were back to square one. We attempted to place a shunt and it was not successful, but the cysts remained deflated for a week. After they filled back up for a second time we attempted to place a shunt again and it was successful. Thank goodness. 

It was now December 6, 2019 and we were leaving CHOP for the second time. It had been about three weeks since our initial diagnosis and things were becoming a little less scary with each passing day.  Layne was still really sick, but she didn’t appear to be getting worse, and that’s all we could ask for. Things were so stable that we were able to come home and just be seen twice a week. Monday’s we were going to be seen by our local MFM for echocardiograms to check the structure and function of Layne’s heart and Friday’s were going to be spent traveling to and from CHOP for routine appointments.  

For the next four weeks we spent every Monday at our local MFM for echocardiograms. Since Layne’s heart was displaced and severely compressed it was imperative that the doctors kept a close look at the structure and function. Since placing the shunts, her heart had “fluffed” back up and all four chambers were clearly visible, which was great, but it was still slightly small for her gestational age. As mentioned previously, at its worse, Layne’s heart was taking up 6% of the chest cavity. A healthy babies heart should consume about 30% at her gestational age. As the weeks went on her heart would continue to grow in size, reaching a maximum of 23%, so still small but so much better than before. With each passing appointment things continued to look great. Her hearts function continued to improve. The blood flow patterns looked better. Things appeared to be on the up and up. 

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During this time, we were also traveling to and from CHOP every Friday for our weekly appointments. I looked forward to Friday’s. As much as I wished I didn’t have a need for CHOP, I weirdly loved going. I loved the people and the welcoming feeling we received at every appointment. It felt like home and the people felt like family. It was a long six-hour drive there, and generally our appointments were no longer then 45 minutes, then it was back on the road to head home. I could complain, but I would gladly sit in a car for 12 hours to have a non-eventful positive appointment.  With each passing week things continued to remain decently stable. After my surgery it was always a concern that Layne would try and remove the shunts herself, which she never did, so that was great. 

Over time the fluid in her scalp completely resolved and the fluid in her chest was continuing to look better with each passing week.  Unfortunately, the same could not have been said for the fluid in her belly.  It never seemed to resolve, or get better for that matter.  Each Friday I would hope and pray that her belly looked better, and each appointment I would be sadly disappointed.  For whatever reason she was never able to shake the fluid. On January 3, 2020, what ended up being my last regularly scheduled CHOP appointment, I mentioned to my doctors that I had been experiencing contractions for about a week.  Since I had developed Polyhydramnios, excess amniotic fluid, and we live six hours away from CHOP they decided to do an internal ultrasound just to be sure these contractions were not causing me to dilate. The results of the ultrasound revealed I was a finger-tip dilated.  It was determined that Layne would more than likely not survive if she was born prior to 28 weeks, in her current state of health, even at CHOP. She was just so sick. So we were sent home to rest. They didn’t anticipate anything happening, but just to be safe I was not allowed to return to work and I was instructed to rest and stay off my feet.  Our goal moving forward was to rest and hope these contractions settled down and relocate to Philadelphia at 28 weeks and ride out the remainder of the pregnancy. Little did Jeff and I know our entire world was about to completely flip upside down for the second time.

Check out a few of my favorite pictures from our maternity session that my sweet sister did for us. I am so thankful we were able to have the opportunity to document this time in our lives. I will cherish these picture for a lifetime.

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