The amazing Amy Wrzesinski, Maleia Lynn and Maya Grace (2.5). When Amy was 19 she had an ovarian cyst that ruptured and the scar tissue had wrapped around her ovary, pinching it. After months of pain she found a doctor who was willing to go in to explore and fix it and he also found endometriosis. She was told to start saving for fertility treatments if she ever wanted to have children because it would be very difficult if it was even possible at all. Still, knowing she wasn't quite ready at that stage of life was able to put it out of her mind quite a bit.
After getting married, Amy and her husband began to think about having children and much to their surprise on their very first try they conceived. When she was 9 weeks pregnant, they went in for their first visit and ultrasound. Right away they were concerned that the babies had a very large size discrepancy and sent her for a more complete ultrasound where they learned they had a 1 week size difference. The had looked at her ovaries and said they could see where two separate eggs had been released so they assumed that she was carrying fraternal twins that had been fertilized and were growing at different rates. They went back a few weeks later to learn that both girls were growing well and continued with the pregnancy thinking that she may even be carrying a boy and a girl due to the differences in heartbeat.
The morning of her 18 week appointment she got a call that her genetic testing had come back with a marker for Spina Bifida. Later that day at her first MFM appointment she learned that she was carrying identical twin girls and that they had Twin To Twin Transfusion Syndrome (TTTS). She was asked to come back the following day for confirmation which they did. After confirming TTTS they were sent to Children's Hospital for testing and ultimately chose to have laser ablation surgery to sever placental vessel connections between her girls. They severed over 30 vessels and removed 2.5 liters of amniotic fluid from Maleia's sac. After surgery she was put on bed rest at home. She was put on medication due to thickening in Maleia's heart and a follow up fetal echo at 19 weeks revealed that Maya had a heart defect they couldn't see previously due to her stuck position. Maya was diagnosed with tetralogy of fallot which meant she had four defects all in one. They weren't able to determine how this was affect her only that she would need open heart surgery following her birth. Amy's doctors were very cautious with her continuing the pregnancy and twice she was give the option to selectively reduce which wasn't an option for her.
Knowing that Maya was baby B and would come out second they decided to deliver via cesarean to make things easiest on her heart when the time came. Amy was allowed to come off of bed rest a bit after she passed 24 weeks and she began having weekly non-stress tests. At 29 weeks she started to have leaking and bleeding that her MFM said was normal fluids and no cause for concern. The fluid continued through the weekend and her regular OB discovered she had premature rupture of membranes in Maleia's sac. She was immediately sent to the hospital and put back on bed rest for the next 10 days. She was taken to labor and delivery multiple times thinking she was going to deliver and was put on magnesium for 12 straight hours.
At 31 weeks + 1 day she started to labor but hadn't realized what was happening. Having planned for a cesarean she never imagined laboring on her own. She labored on her own for 6-7 hours before everyone realized what was happening and she was taken to delivery. Her girls were born exactly two months early, Maleia weighing 3lbs 3oz and Maya weighing 2lbs 3 oz. She was able to see them for seconds before they were swept away to NICU. Her only updates were from her parents and husband who were all terrified. While in recovery she was put next to another mother who had just delivered twins but had her twins with her to feed and hold which left Amy feeling helpless and lost. That night she was able to go to NICU to see her daughters and held Maleia for the first time, she had to wait over 10 days before holding Maya.
All things considered her daughters did very well with their breathing and stabilizing after birth, they had issues with jaundice but did better than anyone expected. Amy had really low blood pressure and swelled up a lot after her birth, they were concerned about blood clots but after ultrasounds and scans she was allowed to go home. After two weeks she left the hospital for the first time without her daughters. A week later her cesarean wound opened three inches and she had to have a nurse come to her house twice a day to pack and change her dressing which made scheduling visits to see her daughters even more difficult. A month later she was finally healed enough to be discharged from wound care.
After 44 days of learning to eat and grow in NICU Maleia was able to come home and has done very well since. Amy was able to take Maleia back to the NICU with her daily to see Maya. Around Maya's 60th day of life she started to have a lot of difficulties and had several major events where she dropped her oxygen, heart rate and saturations but no one knew why. They had hoped she'd come home and have her first heart surgery at around 6 months old but realized that they needed she was in the early stages of heart failure and they had to intervene. On her 63 day of life she was transferred to Children's Hospital by ambulance where she was intubated for several days to build strength and on her 72nd day of life she had open heart surgery to repair a large hole in her heart, scraped part of her heart where it was thickened and enlarged and the little bit of a pulmonary valve that she did have they removed entirely which leaves her blood flowing openly between her heart and her lungs. She can handle the shunting now but will need to have a valve placed down the road. The 7 hour procedure was one of the most difficult days of Amy's life as well as the days after when Maya was incredibly sick. After 10 days she moved to a step down unit from the Cardiac ICU and after she healed they were able to focus on other things such as her difficulty feeding. They ultimately decided to have a G Tube placed after working with feeding therapists in hospital. After 97 days in NICU Maya came home on oxygen and her G Tube. She was thrilled to finally have them both home.
Life became busy with two babies at home and therapies starting. They continued trying to feed Maya by mouth but after she became very resistant they had a swallow study done which showed she had been silently aspirating and had likely been doing so since birth further damaging her lungs. Maya went on strict G tube feeds and the learned she was also having trouble with delayed emptying. The transition and sorting out how to keep Maya fed was an incredibly difficult time but she kept growing and continued to do better. She's now just getting one tube feed at night but is otherwise eating by mouth. In May, Maya had another hole in her heart closed and will require another open heart surgery in the next couple of years to place her pulmonary valve.
Most importantly Amy says that her girls are busy and happy, so much of which she attributes to the therapy work they've done. Physical therapy and glasses to correct astigmatisms for both girls and speech and feeding therapy for Maya has made a world of difference in their lives.
Amy has PTSD as a result of her pregnancy and NICU experience and has dealt with a lot of anxiety and triggers associated with all of her daughters doctors appointments, tests and visits. People tell her so often she's so strong but she doesn't always feel that. While she's had a lot of support she's also felt very alone and isolated in her pregnancy and first year home with her daughters. In hindsight she thinks that people close to her were so scared at the fragility of all that was happening it pushed them away. She's feeling herself get better as her daughters continue to thrive.
Amy has also been dealing with a lot of uterine pain and after seeing a pelvic pain specialist has been rediagnosed with endometrosis and possibly has adenomyosis. will be undergoing a procedure in January to explore and see what is going on and remove what they can. She hopes that it doesn't go beyond that and opens the door for future fertility without difficulty should they decided to have more children.
Amy has realized that all stories are unique, as unique as the people that come out of it. Amy feels that her story is one that she has needed to share in her struggles and their triumphs. She struggled with her body image both before and after children. After all they went through she disliked her body for not doing what she felt it should have done. Slowly she's been able to accept it and love her body again. Her daughters saying she's beautiful and just loving her, has helped reinforce that worth.