All of our preemie's have amazing stories but this one starts in a country half way around the world. Thank you Emily for sharing something so personal with us! If you are interested in sharing your story or have a special topic you want to blog about, email us!
Emily's Story:
All of us who have been through the NICU experience have a lot in common, though very few folks have been through something quite like us. Soon after our wedding I had already started looking at adoption brochures, because despite my doctor saying everything should be fine, somehow I knew that we would have major problems conceiving and something had always been wrong with my body. Between a long overdue diagnosis of PCOS and multiple miscarriages I turned out to be right. I remember looking at an adoption brochure from a country that demanded the couple be married 7 years before they could adopt a child. I remember thinking how I could never wait that long.
It turns out we would wait almost exactly that long. After years of financial struggles, failed fertility treatments, and being unable to afford adoption and concerned about some aspects of that option… I had lost hope. I had a dream of a tiny baby that I got to name myself and raise from the first day of life, and that dream seemed to fade with each passing day and I became cynical. But then out of nowhere an opportunity to do surrogacy overseas in India presented itself. After years of emailing a clinic in India without telling us, my wonderful father in law (who had been fighting cancer at the time) told us that we were accepted into the program and he would gift us some of the money to pay for it. My husband and his family are Indian, and I had traveled there before our engagement. It seemed to be the answer to our prayers.
I finished first in my class in night school at the police academy, demoted myself from my day job so that I could better focus on building my family, and got on a plane to India all in one 72 hour period. On the flight to London I passed out from exhaustion. I arrived in India , and three weeks later I departed after a wild trip. We had extracted and fertilized four perfect embryos and implanted them into a healthy surrogate who was eager to help us, and we would lift her family out of poverty in return. But as usual, my eggs did not work out and our first attempt was a failure. I was absolutely crushed and cried for hours until my nose bled. A few weeks later my brother told me they were having twins, and I broke down again wishing I could be happy for them but so sad and jealous that I could do nothing but cry. I decided try again, determined to work enough overtime to save money for a second attempt. However we could not afford to travel overseas again, so we decided it was finally time to try an egg donor. Months later we tried again with my husband’s frozen backup sample and a local Indian egg donor, and we were told that not only was our 2nd attempt successful, but we were having twins!
I no longer cared about these babies not being genetically related to me or that they were carried in someone else’s body. They were real and they were mine and that was all that mattered. I used the pregnancy to become the most prepared mother ever, and by the end of the second trimester I had read every book, stocked the house and nursery with every necessary and unnecessary baby item ever created, and joined my local Mothers of Multiples club to soak up all their wisdom. It was illegal to reveal gender in India , so I prepared and picked names for two boys or two girls or one of each. With twins I knew to prepare for them to be born around 35-37 weeks and was counting on possibly missing the birth and at least two weeks in the NICU. I was ready…or so I thought.
A week before my baby shower I got an email in broken English that one of my babies was “leaking liquor.” I had to wait until that night due to the time difference to call the doctor. Labor had begun so early delivery was imminent. I didn’t panic.
You see, by an amazing coincidence I was extremely prepared for what was to come. My brother’s twins had been premature 5 months previously, born at 28 weeks. And we were at the end of our 27th week! I had followed their NICU journey closely, and watched them emerge on the other side with two beautiful healthy daughters. I wasn’t all that scared, and I had a good idea of what to expect even if there would be a lot of differences between India and the USA . At my brother’s urging, I took a week to pack and prepare because he assured me “until you can hold them there is nothing you can do the doctors and nurses aren’t already doing, so use this time to make sure you are fully ready to bring them home.” I did. I made a rush trip down to see my brother and nieces, and I was given bags of NICU medical equipment they had procured and critical advice of what to expect and how to react to life in the NICU. I’d even connected with two other couples who had done surrogacy at our clinic in India and had premature babies, and they emailed me loads of advice. We decided I would depart the day after our baby shower, and knew that booking a return ticket would be silly because from now on the babies were in charge of what happened next.
48 hours after the 1st email I received a 2nd email telling me I had a son and daughter, along with two pictures. I gazed at those two lone pictures of my teeny babies constantly that week, until I finally made it to their bedside with carefully packed suitcases full of everything we would need for the next two and half months. My husband did not have enough leave time at his new job to join me until it was time to bring them home, so I was utterly alone.
Once I saw their tiny faces and the nurses surrounded me as I wept with joy, I realized I wasn’t truly alone. I had stared at those pictures for hours on end. I knew they would be small and red and wrinkly. But somehow I was still shocked, and sudden fear coursed through me. I had dreamed of a tiny little baby to love and raise. Never did I imagine them to be this tiny, and I certainly hadn’t imagined two of them! Kangaroo care was allowed the hour after I arrived. I cried after the first major apnea episode I witnessed, even though I knew to expect it and that it was normal for their development and it would be okay. I cried a little at the second one. By the third I was stimulating them to breathe like a pro and had my fear under control…most of the time.
Amazingly my babies were among the healthiest in the tiny one room NICU in that small dusty town, despite being only 2 lbs and 2 ½ lbs. They were only on CPAP 2 days and oxygen a few days more. By the time I arrived they were off oxygen and spent the rest of the time as “feeders and growers.” I lived in the NICU or the hotel across the street for a month and half, and between some broken English and playing charades I was able communicate with the health care team. At 4lbs and 4 ½pounds my babies were discharged at 34 weeks, and my mother-in-law had arrived to help me take them to the big city of Delhi where we had family to help us navigate the bureaucracy and get the paperwork we would need to bring them home as U.S. citizens. My husband was delayed by an emergency appendectomy back in the states!
All had seemed well, but my daughter had some bottle feeding issues and breathed a little too fast, but both their PDA’s were too small to be significant and their GERD was under control. I was worried that she slept so much more than my son. Our new neonatologist in Delhi wasn’t happy with her breathing either, and suspected a viral infection. She was readmitted to the NICU. That is when things started to fall apart. She wound up being admitted twice in Delhi due to severe respiratory distress, and that NICU experience was not good despite being one of the best and largest hospitals in the country. It was more like an American hospital, but it lacked the technology and the available specialists to fully diagnose and treat her properly. Little was communicated or disclosed, and I and my husband (who had just arrived there) were patronized and placated. What no one had figured out was that she had very severe GERD, but with exclusively respiratory symptoms. She had never thrown up, but had constantly been refluxing half digested milk into her lungs. She was also aspirating during feeds, but we had not been trained to prevent or recognize it, and I had been told not to use the thickener I had brought for that purpose. No wonder she breathed so hard, and it made her so very tired!
But that problem would not be solved for two more months because something much worse was about to happen. After her second discharge I got them on a plane as quickly as I could despite worries about her fast breathing, because I knew I had to get her to an American hospital. I was right, because if what happened next had occurred in India I don’t know if she would have survived. For the first time in this whole journey, I was about to be truly terrified and was going to face the worst moment of my life.
On the flight home she caught a cold from some other passenger. It couldn’t be avoided despite all our precautions. A simple rhinovirus most children get several times by the age of 2. But in a preemie it can be deadly and turn into pneumonia rapidly, as it did to my tiny 6lb baby girl. After a 40 hour journey with no sleep I finally arrived home, and I was joyful but also becoming delirious. I was put to bed after everyone assuring me she was fine and I was being paranoid, though deep down I knew she seemed just too tired and a little listless. But she ate her full bottle every two hours, her breathing was more regular, and her lungs sounded perfectly clear….so reluctantly I took some rest. I was woken up by my mother telling me she wouldn’t wake up for her bottle. I realized she was unconscious and not breathing. I called 911 and started CPR. I happen to be a 911 Dispatcher and a CPR instructor. I did it perfectly and somehow maintained calm, like I was outside myself watching it all happen. But I knew even in the moment how CPR often isn’t enough, and in 12 years I had never had a known life save at work. So as much as I didn’t want it to be, deep down I thought it was the end. My mother stood tearfully in the corner holding my infant son, watching me try to save her while my husband waved down the ambulance outside. But minutes later the paramedics laid her on the bed and told me she had a pulse. Then I thought maybe this wasn’t the end after all.
She was transported to one of the top NICU’s in the Southwest. The first hours were grim, but then the most talented doctor I’ve ever seen threw a hail Mary treatment at her and it began to work. For a week she clung to life on a an advanced type ventilator the didn’t have in India . There were brief moments thoughts crept in about organ donation, funerals, and life with one twin. But then things took a turn for the better thanks to the amazing care she was given, and the support I received from the hospital and friends and family I was now surrounded by was beyond belief. The specialists and advanced technology and testing helped to finally give her the care she needed. She was diagnosed with RAD/BPD and given breathing treatments and CPT as well as diuretics and steroids and other medications. When her discharge a month later at Thanksgiving was called off due to sudden respiratory distress requiring her to be put back on oxygen after she had been off a week, we finally solved the puzzle. She was scheduled for surgery for a Nissen Fundoplication and G-tube. Surgery was successful, but a week later she threw us a curve ball as usual and tore her stitches. Her second surgery was a success and she was to finally come home for good Christmas day! Once again she decided to throw us for a loop and she had a more severe RAD episode, but the day after Christmas she finally came home in a rare Texas ice storm. I’ll never forget how they insisted I must be wheeled out in a wheelchair with her in my arms, and for once I felt like I got to experience motherhood the traditional way!
5 months in the NICU. 3 Hospitals. 2 countries. But she is finally home and back with her brother. The care schedule is intense, but over time you find yourself getting used to it more quickly than you imagine. I’ve had to quit my job and find one for less pay with better hours in order to care for her, and am still fighting battles to get nursing care covered by insurance or state programs. There a breathing treatments, medications, occasional oxygen, and a parade of specialists. The feeding tube is my best friend and worst enemy at times. It scares a lot of folks when they first see it, but one huge smile from my daughter and they forget all about it and reach out to hold her. My son wanted some medical attention too and needs a minor surgery and a cranial corrective helmet.
I won’t say it’s been easy, and there are times I lose perspective and feel a little sorry for myself that things aren’t the way they are “supposed to be.” But every time I feel a little bit cheated I take a step back, then call someone for some help so that I can take a break and maybe a short nap. That is all I ever need to remember that despite how rough the road has been at times, I feel like the luckiest mother in the world.
