By Jen Gill
Hollys story began in utero. We tried for a couple of years to get pregnant, and ultimately needed IVF to achieve our dream of being parents. We transferred one embryo under the advice that twin pregnancies are much more challenging, and I was likely to get pregnant without any problems. After a couple of weeks of anxiety, our pregnancy was confirmed. We were having identical twins!
The first 13 weeks were uneventful. I felt relatively good, and kept straining to stick my belly out so people would know I was pregnant. After being sent back to my OB from the fertility clinic, I was told they wouldnt see me. I was carrying twins and they were likely to be higher risk.
I searched for a week and found an OB who was confident he could care for the twins. He was excellent at calming my nerves. He sent us for a scan at 14 weeks to check the twins growth, and there was no cause for concern. A day later I received a call from the high-risk pregnancy team to set up an appointment, as my OB had transferred us without warning. After a tear-filled phone call, we were told Baby B (Holly) was showing signs of Growth Restriction, and we needed to be monitored more closely.
In the coming weeks of pregnancy, Holly was diagnosed with Selective Intrauterine Growth Restriction (SIUGR), enlarged brain ventricles, a single artery umbilical cord, poor placental attachment and lastly, a hole in her heart. Her sister, Katie, was snoozing away the entire time without complications, and growing as expected.
At our 22-week scan (I had weekly ultrasounds at this point), I was advised of the procedure that would terminate Holly. One doctor was concerned that she was going to die in utero and would potentially cause Katie to pass as well. I was told I had one week to make the decision, and they would refer me out to one of four places in New York that performed late-term abortions.
I was distraught for a couple of days. I woke up one day and had an overwhelming sense of calm. I realized it was not my decision to terminate Holly, and if that was what was supposed to happen, I wasnt going to speed it along. I wound up in the hospital at 27 weeks for three days with high blood pressure concerns. I believe this is due to the high-risk team freaking me out so bad at one of my NSTs. The girls seemed fine, and I could go home. I was told to expect the team to send me to the hospital any day to deliver, as they were not certain I would make it much longer given all of Hollys issues.
At our 33-week ultrasound, the tech took extra long looking at Hollys umbilical cord. When she left the room, I told my husband I was going to be sent to the hospital for the remainder of my pregnancy because her blood flow was not looking good. It wasnt exactly what happened. The doctor came in the room and informed us that we would be delivering the twins later that day, and said congratulations.
My delivery was uneventful. I had a C-section because Holly was compromised, and we didnt want to put any unneeded stress on her. Both girls cried when they left my body, and I cried hearing their strong voices. I saw them both briefly before they were whisked away to the NICU. I didnt get to see them for three or four hours after that. Katie was born weighing 3 lbs, 14 oz, and Holly was born weighing 2 lbs, 15 oz.
Our NICU journey was long and stressful. Katie of course did fine. She came off oxygen support within a matter of days, took to the bottle like no ones business and grew like a champ. She came home six weeks after being born. She was a healthy 6 lb little lady with so much attitude, you wouldnt believe.
Hollys journey was much more complicated. Hollys heart murmur was detected just over a week after she was born. I was told not to worry, and that it was likely to close on its own. Two weeks later, I was told we would likely be needing open heart surgery before she was a year old. Four weeks after that, when Katie came home, I was told that Holly was unlikely to leave the hospital until her heart was fixed. She was not growing or gaining weight easily. The hole was so large, the amount of blood being pumped to her lungs was too much and she couldnt keep up. She vacillated from oxygen machine to oxygen machine to slow her work of breathing and help her gain developmental skills. She couldnt eat by mouth because she was too exhausted. We couldnt risk losing calories for such an inconsequential thing like eating from a bottle.
At 10 weeks old, Holly was moved from the NICU to the Cardiac PICU. She spent the remainder of her hospitalization there. It took just over a month for the doctors to agree that Hollys surgery needed to happen sooner rather than later, and for us to finally feel like we were going to get her home. In that time, she had seen all the doctors, been trialed on so many different meds and watched countless Disney movies with mommy and daddy. The worst part was that I wasnt able to spend all day everyday with her. I had Katie at home, and she also needed to grow. I was advised to limit Katies visits to the hospital for obvious reasons.
At the end of July, Holly was put on a ventilator because she couldnt breathe on her own anymore. We thought this was going to be the last straw to finally get her on the surgeons schedule. Before we could get her scheduled, she had cardiac arrest and was without a pulse for just under 15 minutes. We were at home. It was a Saturday night around 11 p.m., and we were 50 minutes away. That was the worst night of my life. I dont remember the car ride to the hospital, or how we got there so fast. I remember screaming in the car and to my mother. My husband drove in silence, trying to focus on getting us there safely, while trying not to break down. I ran to her room, which seemed so far away, only to see her surrounded by dozens of nurses and doctors all pumping fluids into her and trying to place lines to recover her tiny body.
That night was our nightmare. When it was all over, she was in the middle of a crib, surrounded by discarded needles, gauze pads, syringes and blood. She looked like the lone survivor of a horrific battle. She did survive. I told her that if she came through this, I would let her pick the destination of our first family vacation, and as soon as she could talk, I would ask her where she wanted to go. Amazingly, she had no lasting damage to her brain or organs. She surprised the entire unit with how well she pulled through. I am, of course, leaving out many details of that recovery, but the most important part is she did it.
The day of her surgery was eventful. We did not know she was having surgery until we walked into the hospital that morning to see her and got a phone call saying they had an opening. She would go under at 2 p.m. They asked if we consented. I had Katie strapped to my chest, and panic set in. Holly had just gotten over her cardiac arrest, and I wasnt ready for her to be gone again. We consented, since we wanted her home. Katie went with her aunt to spend the day and night with her cousins, and Hollys grandparents came to support us.
We walked with Holly and kissed her sweet face. We couldnt go in to the pre-op room with her, and instead were ushered back upstairs to a small waiting room. Hollys surgery lasted roughly four hours, and her surgeon was very pleased with the outcome. It felt like forever, but we were finally allowed to see her about two hours after that. She looked so fragile. She was back on a ventilator and had several lines pumping medication into her. She also had a large chest tube for drainage under her bandage.
She spent another week in the bay before being moved to a private room. Her recovery was slow and steady, but we preferred it that way. Hollys last hurdle before coming home was having a G-tube placed, seeing as how she had not learned how to eat by mouth. That surgery was a breeze. She had no issues and took to the G-tube like a champ!
Holly came home less than a month after her heart surgery. Its hard to believe that her medical challenges are almost behind us. Holly is working on getting up to speed with her milestones and trying to keep up with her sister. She has a swallow study coming up, and we are hopeful that feeding and swallowing are going to be her next achievements.
Its amazing to have my family together. Holly has gone through so much and her tiny body has done nothing but fight. She is the happiest little lady and loves to play. I know we still have much to do, but it feels like we are on the other side of this.
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