Before we even made it to the NICU , you had to overcome impossible obstacles.
Our pregnancy was more than a surprise, it was miracle. The second daddy saw you on the monitor he told me you were the best thing that happened to us and he was right. You were the piece we didn’t know was missing .
When we found out the boys shared a placenta we went to our first MFM. At only 8 weeks pregnant , he told us it was highly unlikely we would have two healthy babies. Maurice’s umbilical cord only had two vessels ( instead of the “normal” three) and it was “hanging” off the placenta. He was also 90% smaller than his identical twin. I can still hear his voice saying, ” on your next visit it is very likely there will only be one baby and possibly none.” The plan was nothing. There is nothing you can do he told me… just wait .. I couldn’t ..
I search .. joined every group .. and desperately went to our second team in another hospital .. one of the top MFMs in the field. Now again barely 10 weeks.. the same if not worse grim prognosis.. but this time it came with a “treatment plan.” Selective reduction. Terminate the “little baby” and save the big one. It was more than an option .. it was recommended along with stats on “how good the hospital is at it”… by occluding the cord of the small baby they could save the larger baby. The smaller baby did not appear to be growing .. the cord and the placement of it all went along with the reasoning on why it should be done. If anything was to happen to the small baby on it’s own they told me the blood would rush out of the larger one and they both wouldn’t survive. It was scary.. and convincing.. but I couldn’t do it. I made an appointment to meet another member of the team. ” The best of the best “, I was told. Now at only about 12-14 weeks the prognosis continue to worsen. On regular ultrasound they saw a cyst in Maurice’s brain. She said it was likely dandy walker and my little baby would be severely disabled. “I would like you to meet with the neurologist that cares for babies like this so you can understand… ” she told me .. and Again “selective reduction” was discussed now even more .. she said “at this point most parents would scrap the pregnancy and start fresh.” The words are scared into my heart. I left again still could not do it.. we returned this time seeing the other partner. They started with Peter. The ultrasound tech completed the exam and he started it. “How did you not see this..”. He said to her.. going over and over peters face. “Look at his jaw.. it’s recessed and his heart titled. ” At this point there was no more meeting in the special conference room .. now it was simply said as , you likely have a genetic condition given your age and other risk factors being expressed differently between the boys. We also had a fluid imbalance and at this point I have severe ttts symptoms. Shortness of breath , uneven belly , even contractions.. what about the TTTS and fluid I asked him… and his answer was direct and simple.. “we don’t operate on unhealthy babies.” This is when our angel stepped in .. first Mary from the tts foundation .. she directed me to Dr Ruben Quintero. Palm Sunday a stranger saw one of my posts and sent me his cell phone. I called him and he answered. He told me ..”Lisa I cannot promise you your babies are healthy but it’s unlikely that they have a rare genetic disorder given your other two healthy children “. “Come see me and we will do the tests and I will do everything I can to help you.” He spoke to me for a few hours.. educating me on ttts and how these tests are interrupted. I told James that night that I needed to go to Miami and see him. His reply was so simple.. what’s a trip to Miami then we go. We went .. saw a pediatric cardiologist had a fetal echo .. saw a neurologist and had a brain mri in utero .. and yes there was a cyst but they believed it to be benign meaning that it would simply go away on its own and yes peters heart was tilted but it was still within the normal limits .. and nothing at all was wrong with his jaw. He did more specialized tests and did see signs of ttts but it was not yet needed surgery. We flew back home and started our journey… our path of hope.. finally given to us by this incredible man.. the next few weeks we were back and forth on planes juggling Mia and Juliet as best we can thanking god for my mom dad sister and brother in law who acted as a second family ensuring the girls never felt once minute of it. At 26 weeks ttts caused my body to think we were ready to deliver. Connecting blood vessels in the placenta resulted in Peter having fluid overload, heart and kidney failure and Maurice losing all his fluid shutting down his kidneys completely. When left untreated most babies do not survive. Maurice did not even weigh a pound. Delivery at that point would have been devastating. Although i was already past the deadline for the traditional ttts surgery.. dr Quintero agreed to see us. I flew to Miami that night , he operated in the morning and we were able to give the boys a few more weeks to grow. Our case required a very specialized technique that I know would not have been possible elsewhere. Dr Quintero is a pioneer in this field. A few weeks later, ttts returned and it was time for them to come into the world. We had no idea what the future would hold .. both in severe heart and kidney failure.. barely weighing a pound.. but they had already overcome so much and I knew angels were watching over them.. I prayed and shared our NICU Journey which helped me heal.. from the first day of summer to the last we lived in the hospital .. I sat and watched you my miracles.. i kept picturing us living the life we have today.. running in the beach .. praying for first you to breathe then drink.. then walk and talk.. seeing you with your sisters and cousins.. my god how I love you and this life you have given me …
Our road was not easy .. therapy and drs visits filled our first few years.. it felt like I was living two separate lives.. one with my sons watching them grow and suffer in boxes and then home to my happy girls ..we had a number of scary diagnosis but I learned to trust my gut and I know we have such a special connection. Having a friend experiencing it along side me meant everything .. Devan thank you is never enough.. my husband you are everything to us.. the last few weeks when Maurice was ready to come home leaving his there became too hard.. the emotional rollercoaster of the nicu is difficult to describe.. one day or 100 it’s a nightmare.. I questioned everything .. how the machines worked .. knew every drop of what they gave you .. every single wire placed inside you.. i your hand.. you never gave up and neither did we… your courage gave us strength … I promise you were never alone.. Today you are healthy and strong
I share your story to give others hope
To help educate about ttts and Dr Ruben Quintero at the fetal institute and of course Mary and the ttts foundation. If anyone you know if pregnant with twins that share a placenta or if they are going through a hard nicu journey I am here. Helping others helps me heal.
It was the stories from others experiencing they same thing that helped get me through.
To thank my husband for always believing in us, my family for always supporting my decisions .. for loving us so much. To thank my father for standing beside me driving three house a day for three months while I was in the nicu. To share the power of love prayer and miracles ..
to celebrate you my boys .. my heros