It’s been one year since my daughter Kaiyah came home from the NICU on April 5th, 2012. The happiest day of my life…followed by major sleep deprivation. How the nurses kept her quiet and fed her only every 3 hours, I have no idea! My story, in some ways as I came to find out, has happened to many. June of 2011, after feeling ill for a month and having had 4 negative pregnancy tests, I finally had a positive one! We had been trying for another baby, our first daughter was 20 months old. I was so excited and quickly texted and called some friends and family and thought about how to tell my husband I was pregnant. I decided to catch the moment on video, set up the camera, and wrote “I’m going to be a big sister!” on my daughter Adina’s belly. After quickly teaching her to lift up her shirt and squish her belly against the glass door when she sees daddy coming, we waited. He came home, read those words on her belly and we were all just giddy with excitement.
A few days later, I started throwing up….all the time. I couldn’t keep anything down. I made an appointment with my midwife and she had me get an ultrasound to see how far along I was. I dropped my daughter at a friends house and told her I was pretty sure I was having twins. She said “there is no way you are having twins.” I went alone and waited my turn for the ultrasound. Then I hear the words, “there’s one….and there’s another one…do twins run in your family?” My heart is racing, I start laughing with nervous excitement, TWINS!!! I can hardly contain myself and rush to my car after the appointment and call my husband. He is in shock and says he’ll call me back. I call my mom and tell her, “I’m seven weeks pregnant….with twins!” She asks if I’m sure I called the right number. I get to my friend’s house and lay the ultrasound picture on the counter and hold up 2 fingers. It really felt like the greatest day of my adult life. My first pregnancy and delivery was pretty flawless, delivered a healthy 8 lbs baby in a tub! I was expecting to have the same experience, but to deliver 2 babies!
I was seeing Maternal Fetal Medicine every couple weeks for regular ultrasounds. The girls were doing well, Amelia on the right, head down, Kaiyah on the left, head up. Kaiyah was always a bit smaller and had less fluid, but they said that happens sometimes. It was a Wednesday, I was 26 weeks along and I went to MFM for another appointment. I was told that the fluid levels were getting close to being outside of the safe range and the girls were getting close to having Twin to Twin Transfusion Syndrome from sharing a placenta. He suggested driving across the state to Miami and having laser surgery to sever some blood vessels. Of course I wasn’t going to do that. Leave my family and have some crazy procedure done! I did some research online and thought the procedure sounded really dangerous. I wanted something safe, something natural, some guarantee I would end up with 2 healthy baby girls. Obviously, life doesn’t work that way.
He scheduled another appointment with me for the following Monday. There were no openings at the office near my house, so my appointment was at the hospital, 40 minutes from my house. I had never been there, and after getting lost, I still made it on time. Laying there, I’m told, “twin B has almost no fluid, you need to be admitted right now.” I start crying and make it to the hallway and collapsed. What did I do wrong? What are we going to do!? Who will watch my daughter? I make the necessary phone calls and fill out hospital paperwork.
After a while I am in a hospital room, in a gown, uncomfortable and not allowed to get up. My back was killing me and every time I moved, the nurses would come in and spend anywhere from 30 minutes to 3 hours trying to find the girls heartbeats again. It was terrible. The following morning I had another ultrasound. The specialist decided to try an amnio-reduction. I had read about this. Shove a needle into my uterus and suck amniotic fluid out of twin A’s sac in hopes that it would relieve some pressure on twin B. Okay. It was awful and painful. I couldn’t take it anymore and told them to stop. I get back to my room and the girls’ heart rates were 200. Of course they were, I was practically hyperventilating from the pain and emotional trauma of it all. They told me, “we are going to deliver these babies now.” I asked how much time my husband had to get here, they said 45 minutes. He got there just in time to be with me while I had an emergency C-section. That part really wasn’t that bad.
December 20th, 2011. I didn’t get to see either baby, my husband had time to take one picture of each before they were rushed off. I don’t really remember when I got to see them, it was when I was moving to a different floor for recovery, they rolled me by them. I got right to pumping and had someone order me a book all about preemies. 26 weeks 5 days. They had a good chance of making it. I had gotten the steroid shots and eaten well, they were going to be OK. I would visit the NICU only a couple times a day while I was in the hospital. It made me feel sick and dizzy to be in there. A cool dark room and their hot, humidified isolettes with bilirubin lights over them. Like little glowing aliens. Their little black masks to protect their eyes. They were “healthy” preemies. We named twin A, Amelia. She was bigger, 2 lbs 2 oz and almost 14 inches long. Twin B had been named Kaiyah for months. She was tiny at 1 lb 6 oz and 12 inches long. She dropped down to 1 lb over the next couple weeks and it would take her 100 days to hit 5 pounds.
|Kaiyah on bubble CPAP at 6 weeks old|
Our time in the NICU was like many others. The ups and downs, from bubble CPAP to ventilator, back to the bubble and then Vapotherm. The daily awkward phone calls that always made me feel like I was bothering someone and jumping for joy when they gained an ounce and were being fed another cc of breast milk. We were dealing with it well, learned as much as we could. Kaiyah was on Vapotherm for a little while after being born and Amelia was intubated. I would hold Kai everyday. My little cuddle bug, I would just place her tiny body down in my tank top. One morning I came in around 8am as usual, and I saw a little wall with a stop sign in front of Kaiyah. Her nurse came over and told me she had MRSA and that I couldn’t touch her with my bare hands anymore. I broke down crying, and was told that she had been intubated so I couldn’t hold her either. I couldn’t hold either of my babies. I was devastated.
|Amelia at 2 days old|
A week or two later, Amelia was extubated so I could finally hold her. She was growing a lot and doing great. By the time she was almost 9 weeks old (34 weeks), she was 4 lbs 10 ounces! Her sister was still tiny and weighed around 3 lbs. It was Tuesday, February 21st, 2012 and Amelia was nursing so well that her primary nurse told me the next day we could weigh her before and after nursing and see how much she was getting. I was so excited. I was also told that it would probably be about 2 weeks and she would be home! She was doing great and was almost down to just a nasal cannula and had been at 21% oxygen for weeks.
That night, my husband sold our little VW and told me we would go shopping for a minivan the next day (to fit 3 car seats!). I called the NICU in the morning and they said she was fine, just had some residuals, which had happened before so I wasn’t worried. I told them I wasn’t coming in that morning but would be there that night. My parents drove my husband, daughter and me 3 hours away to go look at a car. While on the highway, the neonatologist called and said that Amelia had developed NEC and they had stopped her feedings. I asked if we should turn around and come to the NICU but he said no, that usually stopping the feeds works to resolve the issue. We pulled into the car lot and took one look at the car and realized it was a piece of junk. We decided to stretch our legs after being in the car with a 2 year old for 3 hours. We were walking around the car lot and my phone rang, it was the neonatologist again telling me that we needed to come back right away and using a bunch of words and listing off a bunch of medicines that I knew nothing about. I asked if she might die before we got back and he said yes. I broke down sobbing and barely made it into my parents’ car. Of course we had to stop for gas and good thing my dad races cars, we made it to the NICU in record time.
I had called and told them not to give me any updates until I got there because there was nothing I could do from the car. I ran down that hallway I had come to know so well, past all the pictures of chubby twins and triplets in diapers, through the doors and ran into the room and saw her. Saw my baby girl hooked up with a bright light over her and lots of people standing around her. I fell to the floor. My baby was alive! I started walking to the sink to scrub in and a nurse said to just use sanitizer. I knew something was very wrong. My perfect little baby had IV’s in both hands, feet and head. She was completely pale and intubated. I asked the nurses what was going on. They said they didn’t know and explained what all the different medicines were for. For about an hour I just stood there, talking to her and touching her arm. All of a sudden, all her monitors were going off and the nurses were doing chest compressions. They did that for 45 minutes until I told them to stop. Amelia had died. Gone. One day totally fine and nursing. The next day dead. The day before I was counting down the days until she would be home. Now it was all over. I held her for hours and a nurse took some photos for us. I packed up her things. Her little coming home outfit she would never wear. Her little hat with her name embroidered on it. The blankets I had wrapped her in everyday. My world as I knew it, was over.
|Kaiyah on the beach on April 10, 2013|
I still take her to visit the NICU often. She is 12 months adjusted, 16 lbs and 28 inches long, she is just taking her first steps. I stay in touch with a few of her and Amelia’s nurses. The NICU is an amazing place. A place that saves babies that years ago wouldn’t have made it. Without it, neither of my girls would have lived. Our journey there was 107 days.