For most people, finding out you're pregnant with twins is a shock, but for us, it was a calculated risk that paid off big time! After three rounds of failed reciprocal IVF, we got the call we had been waiting on - not just one, but TWO perfect little girls on the way!
We had some scares in the first trimester but finally at week 18, we felt confident enough to announce our pregnancy to our friends and family. We were so happy and could finally start planning. But this excitement and joy was shortlived when we found out at our 20 week scan that something was wrong with Kaylen. We saw multiple specialists and at week 24, they found her "Angel Wings" on the sono. This is when we first met our NICU team and began to plan. Week 25, the official Hydrops Fetalis diagnosis was given to Kaylen and the news of a cure was nowhere to be found. The angel wings previously seen on the sono was fluid around her heart and lungs. The goal was to monitor Kaylen weekly and pray for a miracle. Week 26, the phenomenon "Mirror Syndrome" started happening to my wife and the team explained that she was now at risk also because she was mirroring Kaylen's Hydrops condition causing massive swelling and fluid retention. Week 29, my wife had gained 72 lb of fluid in 4 weeks raising her BP dangerously high. It was time for admission. Every 4 hours for a week, we prayed for the doctors to hear two heart beats.
3/22/18 was the scariest morning of my life. All three girls in my life at that moment were critical. Thank goodness for our families and the NICU team that communicated with me every step of the way.
9:00: Morning sono showed that Kamdyn was unable to grow anymore due to Kaylen's swelling so the decision was made to do an emergency c-section and get both babies out ASAP.
11:00: We were taken to the OR with over 25 team members waiting in gowns and masks.
11:36: Kamdyn came out screaming at 3 lbs even.
11:38: Kaylen was rushed to the isolette but had a heart beat! She was 4 lbs 4 oz.
11:55: My wife was stable!!!
The next 9 days are a blur but ones we will never forget. We were told that Kaylen might not make it out of the delivery room and for nine whole days she fought to beat Hydrops. We met with the Medical Director and NICU team for rounds every day, each day partnering with them to search for a solution.
On March 31st, we hadn't made any progress and poor Kaylen was getting sicker. We, along with the guidance and support of the medical team, made the heartwrenching decision to stop all the poking and prodding on Kaylen and finally hold her for the first and last time. We lost her because of Hydrops but to this day we still don't know why. Sometimes Hydrops is genetic, sometimes it is caused by an infection, but sometimes - just like in our case and about 10% of all cases - there is no known cause.
The next 54 days we met daily with the same team about Kamdyn and her progress. Besides being tiny and 10 weeks premature, she was otherwise healthy and just needed time to grow!
On day 63, we broke out of the NICU. Excited to finally take our girl home, but sad to leave the NICU family that we had grown to love over the past 3 months.
Nobody wants their baby to spend time in the Neonatal Intensive Care Unit. Every parent hopes for an easy labor, a healthy mom and baby, and a short hospital stay. But when things go wrong, it's great to have the support of a wonderful team who not only nurtures your baby but helps you maneuver through those tough first days, weeks, or months. Our goal is to now help support those wonderful teams that continue to support other families who are off to a rocky start.
Not many people can fathom losing a child and then thanking the medical team that treated her, but we can.
Life in the NICU daily is all about meeting goals and milestones, but most parents dont think of capturing these milestones because they are not "normal milestones."