“Payton celebrated her first birthday on December 5, 2014.”
Payton Thompson, Trisomy 18, 12/5/13, Gainesville, FL
My husband and I have been together since I was 16 and married since I was 23. We waited to have children until it was the right time for us. We wanted to be done with school, in a good financial place and own a home. All of those things finally came together in 2012. So we decided that it was time to finally start our family. I finally got pregnant in March 2013; our baby was due on December 5, 2013.
I had a fairly normal pregnancy, but did complain of low movement the entire pregnancy. The baby always moved great on US, was measuring well and I had a normal quad screening. So the doctor just assumed it was due to an anterior placenta and being a first time mom.
The week of my due date came and I am induced and Payton was born on her due date. That day she didn’t move so well on US and the doctor said with the low movement I had been experiencing she was concerned that if something did happen I wouldn’t know it since I didn’t ever really feel her. That day on US she measured 6lbs 7oz, small but still within normal limits. I started induction Tuesday evening and finally had Payton Jewel Thompson at 2:04 am Thursday December 5, 2014. They called out her weight 5lbs 1oz. “Oh something is wrong, but she is crying, so that is good.”
Soon after she was having breathing difficulties and was taken to the NICU. My OB came back and said “we think there is something wrong with the baby, but I don’t know what; we will know more tomorrow.” I went to see her as soon as possible and she was amazing, everything I had ever dreamed of, I never dreamed of a healthy baby because I thought it was assumed I would always have healthy children. The next day the neonatologist came in and said “we think your daughter has Trisomy 18.” I of course never hearing of this asked “what is Trisomy 18?” It means “she only has one week to one year to live.” My entire world came crashing down. After some time I finally decided to Google Trisomy 18…that was a mistake. It was nothing but horror stories, I couldn’t find one success story. I sent so many emails that night trying to find some information. The next day I got a call the man on the phone said “I am Alex with hope for Trisomy and my son is five and thriving.” All of a sudden the lights in my world came back on, but we had a long road ahead of us. I quickly got connected with some local moms and the FB groups. I remember telling the staff at the hospital (the same hospital I worked at) the story of Alex and Lane and they just looked at me sadly. I believe they thought we wouldn’t have the same experience. I didn’t know if we would but I held on to that ONE success story over all the bad ones. I just saw Payton and no one could tell me why she would die, they just said that she would.
Payton went home after 8 days on oxygen, pulse ox and a feeding tube. Payton was born at a hospital that had a level 2 NICU but did not have access to echo or pediatric cardiologist. Payton had a very loud murmur, that the neonatologist thought was a PDA, so I wasn’t too worried. Because of this we was discharged from the NICU and immediately went across town to Shands at UF to get an echo to make sure the murmur wasn’t serious. She ended up having multiple large VSD’s. They was concerned due to the size of the holes in her heart. So they scheduled us for one week later. The next week was a world wind of finding a new pediatrician (that could handle Payton) and a list of specialist. We get to the next cardiology appointment were she was started on Lasix. We was also told that she didn’t need surgery then but would likely need it soon. The cardiologist also told us that the hospital typically does not do open heart surgery for T18 babies, but that they would consider it when the time comes. Pulmonary also saw her the same day. He said to us “I will do whatever it you want, if you want oxygen or trach, I am on board.” I didn’t realize then he already knew what she needed, but we wasn’t ready to hear it. I also didn’t realize how big of a deal it was that he was willing to do whatever we wanted, but he knew. At about 2-3 weeks Payton was only using oxygen when she slept.
We knew from reading stories through FB that a g-tube was very likely. We were also going crazy with the OG feeding tube, they didn’t want to put it in her nose because it was too small and she had oxygen. At 6 weeks on January 16, 2013 she got her g-tube and did great. I was so nervous. We stayed in the hospital for 5 days and went home.
Shortly after Payton got her g-tube she started having these strange desaturations. She would go to 60 and quickly back to 100. We originally thought it was a read error on her pulse ox due to her moving or a defective machine. She looked perfectly fine; never appeared to be in distress. One night she cried all night and had frequent ups and downs on her sats. That morning I called her doctor and they said we should take her to the ER. Neither of us thought it would be anything bad or important but wanted to be safe.
They admitted Payton to the hospital with respiratory distress. She needed a blood transfusion, had a fractured rib and had a CO2 of almost 80. We have no idea how she got a fractured rib and didn’t have any incidents that could have caused it. She stayed on high flow O2 for 2 weeks. We was told that her tongue was obstructing her airway almost constantly and that she needed a trach. The original pulmonologist that said he would do anything for Payton came in to talk to us. I questioned him about her quality of life with a trach. He said something that still stays with me “her quality of life will be so much better.” I couldn’t believe he just said that…better? “She will be able to breathe, she will develop and grow because she can breathe.”
I wanted a sleep study before just to make sure. However they didn’t do in hospital sleep studies. An outpatient sleep study was scheduled but we had to be discharged for 3 days before she could have it. Over that weekend Payton was on constant oxygen and had many of her up and down sats. The sleep study was on Monday, at this point I had already decided that she needed the trach. During the sleep study they was able to constantly monitor her CO2 levels through her skin, it stayed between 60-80 the entire night and she had numerous obstructive apnea spells and only 5 central apnea episodes. On the way home I called the ENT to schedule her surgery. Her surgery was scheduled for the following Monday. That was the longest week of my life. We was doing constant chin lifts, high levels of oxygen continuously (she needed the push to help keep her airway open). I work in critical care and was testing the levels of my knowledge, ability and I was pushed to the limit with stress. I did take the time to video all of her little noises, crying and anything that I could because I didn’t know when I would hear her sweet voice again. This was the hardest part of the trach, I wanted to hear my baby cry, coo and laugh.
Monday finally arrives and her surgery gets cancelled because they have no beds. I told the doctor “she has to have this done the only reason I didn’t bring her to the ER was because I knew she was having this surgery.” He found a NICU bed for her and she had the surgery for her trach. It was a guaranteed two week stay. Over the next two weeks while still in the hospital Payton thrived. She started kicking her feet and interacting with us more. Within a couple of hours her Co2 was normal. This was the huge life changing moment for Payton.
Now that Payton was stable we could start thinking about other things. She needed a hearing test since she failed her newborn screening. We tried two times prior to get the hearing test but she would have to be perfectly still and completely quiet for it to work. So we had to do a sedated hearing test were we learned she had severe hearing loss due to ear canals that was either very small or closed, but her hearing nerve worked good. She then got a BAHA hearing aid. The week she received her hearing aid she started lifting her head during tummy time. And she really enjoys music.
Next we saw an ophthalmologist. She originally thought she was far-sighted but wanted to wait until she was closer to a year old to make sure. She ended up having far-sightedness and astigmatism. She needs glasses. We are currently working on finding a frame that fits her.
In October Payton had one of many cardiology follow ups. At this one it was determined that her VSD was almost completely closed and was practically negligible. She was then taken off of Lasix.
She has seen neurology, cardiology, pulmonary, hearing, ophthalmology, urology, surgery, GI, and genetics (I think that is all of the specialists). As of right now she has no major medical problems and is doing amazingly well. All of her therapists, which includes PT, OT and hearing, are all very pleased with her development and have great hope for her.
Payton celebrated her first birthday on December 5, 2014.