The magnificent Vanessa Martin, Elliana Grace and Lillian Faith (3)
Vanessa and her husband hadn't been able to conceive for three years and were considering adoption as they knew they could never afford fertility treatments. Her period was 15 days late which wasn't uncommon but she took two pregnancy tests on Mother's Day, 2012 that were both positive. She was over the moon and ran around the house telling her parents who they live with and woke her husband with the news. She went to the doctor and had an early ultrasound at 8 weeks. She learned she was having twins but they thought initially that they saw two sacs and two placentas and so her twins were fraternal.
Vanessa was followed by a perinatologist who specialized in multiple births and at 16 weeks learned she was having girls. At 18 weeks, she learned she only had one placenta and two sacs (making her twins identical, MODI) and they were able to visually see a size difference between her babies. She was referred to a doctor who specializes in Twin-to-Twin Transfusion syndrome (TTTS) in Kansas and a few days later they were able to see her. Lillian was diagnosed with severe intrauterine growth restriction (SIUGR) and had less of the placental share than her sister. They were told that if they didn't terminate Lilli's heart would fail and she would kill her sister. and that there were no signs whatsoever of TTTS. They went back a week later and told them they were not interested in terminating.
Vanessa continued to have dopplers once and then twice a week to monitor the girls and were told that Lilli's heart was going to fail and they should really consider termination. They were willing to take the risk and eventually Lilli stabilized but didn't improve. At 24 weeks, Elli became sick and they became worried they would lose her. The girls always had visible bladders but they began to have concern about the flows between them. When they went back, Lilli was sick again and Elli was healthy, then it reversed again, and again. The doctor told her that there were shunts connecting them that opened and closed. When it would open, that baby would become healthy and when it shut that baby would become sick.
Aside from her daughter's issues, Vanessa has her own problems throughout her pregnancy. She developed a massive cyst on her lip that had to be surgically removed which she felt, she went completely blind in her right eye and was allergic to MSG. She had to have a spinal tap and was admitted to the hospital. She couldn't be flat on her back for more than a few minutes without throwing up but needed to have an MRI. She threw up in the MRI machine and had spinal fluid leaking in her neck and back. She developed what they called "suicide headaches", and she lay in the hospital for three days in excruciating pain, wanting to just die and not caring that she was pregnant.
At 28 weeks, Vanessa was admitted to the hospital and on her birthday, they kept losing the girls heart rates on the monitors. Elli's heart beat had fallen off completely and they couldn't find it. They brought in an ultrasound machine and still couldn't find her heart. Vanessa says that they began praying and all the sudden there it was. Vanessa was on magnesium overnight and lost control of her body. They took for an ultrasound in the morning and ultimately decided that her girls were safer outside than in. The delivered via cesarean and everything went well on the girls end but Vanessa began to feel what was happening. She told the doctor she felt like she was going to die and was told to shut up. Her husband told her to please not die and the anesthesiologist said that he couldn't safely give her any more medication, she soon blacked out.
Vanessa didn't see her girls for the next 8 hours. They were intubated after 6 hours and there began their NICU journey. Lilli was born weighing 2lbs, 1oz and was 13.5 inches long and Elli was 2lbs, 6oz and 14 inches long. It wasn't until after her girls were born that Vanessa was given a positive diagnosis of Twin to Twin Transfusion syndrome from her NICU team. Elli had an easier start and took off for a month before developing NEC. She was intubated and removed from feeds but they had caught it in time. Her lungs continued to bleed but they didn't know why and couldn't stop it. They called a family meeting in the NICU and the night before Vanessa and her family went to a revival where they prayed for Elli. The following day they showed her X-Ray's of what her lungs had looked like, cloudy, full of fluid and within 48 hours her lungs had completely cleared and she was extubated within 24 hours. From there, Elli was great other than laser eye surgery for ROP after her discharge. Elli came home after 93 days in NICU, only on oxygen when she fed.
Lilli had a more difficult start. On day three of life, they told her she wasn't going to make it due to pulmonary hypertension. She was on nitrate and her team wanted to try Flolan which wasn't FDA approved in children at the time. The medicine had equal chances of helping her, or killing her but thankfully it worked. Lilli had to have surgery for a PDA ligation at a few weeks old and while she did great in the first 24 hours, the next 72 hours were very difficult. She was already intubated but had to be put on the oscillating ventilator. She began to get better and Vanessa finally got to hold her when she was 2-3 weeks old. Lilli's ROP continued to progress and she was having problems retracting and went through morphine withdrawal. She was given shots in her eyes to help resolve her ROP but needed follow up laser surgery as well. Anytime Lilli tried to swallow anything, she would desat and a swallow study showed she had a paralyzed vocal cord. They were given the option to stay in NICU for months to work on feeding or have an open G-Tube placed. Lilli was able to come home 5 days later after 103 days in the NICU.
Lilli went back to the NICU after a week needing a vent for her G-Tube. And she cried for 6 weeks straight due to discomfort. They had come home with oxygen but without a pulse ox and after Lilli had another crying spell lasting 72 hours, her in home nurse realized her oxygen levels were only the 60's and 70's landing them back in the NICU. After a third NICU return and a PICU stay things began to get better. Both girls came off oxygen fairly quickly and Lilli began to learn to eat by mouth. It's been a long process but after a continuous feeding pump, decreasing and increasing feeds and finally an intensive feeding clinic Lilli has been able to learn to eat by mouth. She still isn't absorbing nutrients as they'd like and has her tube in but is able to eat by mouth now.
In addition to all that she's been through with her girls, Vanessa has recently undergone a prophylactic double mastectomy with nipple sparring due to a PALB2 gene mutation. Vanessa's family has a long history of breast cancer in both men and women and with the mutation her chance of having cancer increased to 50-75%. She has had many complications and extreme pain following her surgery due to heightened nerve sensitivity that has required her to put any reconstruction on hold but she is hopefully that she will be able to begin soon. Each stage however, requires her to be down for 6 weeks, unable to care for her children which has been incredibly difficult for her. Vanessa has struggled with identity as woman not having her breasts and hopes that the rest of her journey goes smoothly.
Vanessa knows that her outcome isn't the one that everyone gets to have, especially after their TTTS was misdiagnosed, and she is so grateful that she gets to have both of her daughters with her. She had no idea about any of the risks and challenges she faced until it happened to them which is why sharing her story is so important. She also wants to encourage women to get screened for breast cancer and it so much more prominent than many people realize. And perhaps most importantly, she wants her girls to look back on this moment in time, with their mother, and see that they are all strong survivors.