Noah Alexander & Nicholas James

The tears have already started flowing, and I have just begun to tell my little miracle’s story. My husband and I had been married for four years and were on our way to being well-established. My husband had gone back to school for his bachelor’s degree in Nursing and I had just started my new position as the Manager of the Respiratory Therapy department at a local hospital. We were in the process of trying to find and buy our first home in an area that is great for raising a family. We started trying to conceive when my husband was in his last semester of nursing school. This wasn’t an easy task, he was in school four days a week and worked 16-hour shifts on the weekend as a Respiratory Therapist! Finding time for us wasn’t that easy.

After six months of trying, I found out I was pregnant. I was overjoyed! Disappointment was starting to set in and I wondered if we would have infertility issues. My husband was working night shift at this time and I had breakfast ready for him when he arrived in the morning. I placed the home pregnancy stick on his plate. It took him a second to find it and realize what it was! He was so happy that we were finally pregnant.

I made my first doctor appointment that week. It was still early, only 6 weeks. She confirmed the pregnancy with a transvaginal ultrasound. At this point, there was only the gestational sac. She told us to come back in a few weeks for another ultrasound to see the heartbeat.

As my husband and I waited for our second ultrasound, we saw the pregnant woman in the waiting room, and I couldn’t imagine what was in store for us. As the doctor started the ultrasound, we knew immediately what we were looking at. There they were, two blinking hearts on the screen. I will never forget the look on the doctor’s face as she turned to us and smiling and telling us that we were having twins! My husband and I both started laughing and crying at the same time. Is this really happening to us?! We were in a state of shock!

Throughout the next few weeks, my husband was really excited. I was the passive one. I kept thinking of how we were going to handle two babies at the same time. I slowly got over the uneasiness and became just as excited as my husband. We found out through the following ultrasounds that we were having identical twin boys. We had already had a boy and girl name picked out before we were even pregnant. We soon had everything planned. We had started the nursery around 22 weeks. I figured that if I had to be on bedrest later, that we should do it now so I could be a part of it. We had the room painted, border up, and two cribs. I felt so much excitement every time I walked into the nursery and saw two cribs and matching outfits in the closet.

My pregnancy was uneventful until 24 weeks. My blood pressure was slightly elevated at my appointment. I was told to go home and stay off my feet until Monday. They were also doing lab work to see if I was developing preeclampsia. (Our appointment was on Wednesday.) My pressure had gone back down and things were looking good on Monday, so I went back to work. At this point, I was in the doctor’s office every week for a check up.

I had an appointment at 26 weeks and I was feeling good. The doctor performed a transvaginal ultrasound and told us that my cervix was changing and that I had to remain on bedrest. I didn’t want to, but whatever I needed to do to have healthy babies was all that mattered. The doctor even took us into his office after that appointment and pulled out his medical textbook. He pointed out the viability of babies born at 26 weeks and how much their chance of survival increased with each week. We went home a little worried, but thinking things would be okay.

My husband took me home and left to run errands. I stayed home, got comfortable on the couch and thought about what I was going to do for the next 12 weeks. As I sat there, I noticed that my shorts were a little wet. I went to the bathroom and as soon as I sat down, a gush of water came out. Contractions started immediately after my water broke. I became hysterical. I paged my husband 911 because I couldn’t remember the new cell phone number in my state of panic. He called back and could barely make out what I was trying to tell him. He raced home while I pulled myself together enough to call the doctor. Thank goodness the office was still open. We met the doctor at the hospital and he confirmed that indeed I had leaked amniotic fluid. I was transferred to a perinatologist and sent by ambulance to another hospital that had a Level 3 NICU.

I was started on magnesium sulfate and terbutaline. It helped for a couple of days. I had ultrasounds done daily to check the status of twin “A”, the one who was leaking. The perinatologist stated that babies make more fluid and they could survive with little fluid. I found that hard to believe, but remained hopeful. Four days after this nightmare started, I gave birth to our 26-week twin boys. Nicholas had worked his way down the birth canal and was crowning by the time the doctor came to examine me. Nicholas weighed in at 2 lbs. 4 oz. I heard him cry, but knew they would intubate him. I so desperately wanted to see him, but with so many people in the room, it was impossible. Noah was born exactly 30 minutes later at 2 lbs. even. I got to see him as they were wheeling the isolette to the NICU.

I was finally able to see my sons a few hours later. I knew what to expect. I have worked as a respiratory therapist for 8 years. However, when it is your own loved one, it doesn’t matter how much you are prepared. I broke down and cried when I saw how tiny they were. One of the worst days of my life was coming home from the hospital without my babies. How am I supposed to go home to an empty house that has two cribs in the nursery and two bassinets in our room waiting for two beautiful boys? I returned to work one week after delivery. I didn’t want to waste my leave of absence on going to the NICU. I knew I would need those three months for when the boys came home. I would go to work and then go to the NICU until 10 p.m. I would stay while they were bathed and weighed. It was then that the boys were taken out of their isolettes and I was able to kiss them for just a fleeting moment.

The boys had ups and downs, as all premature babies do. They were making good progress and we were optimistic that they would be home in January. Never in a million years did I think that one would get sick and never come home. Nine days after birth, Nicholas was starting to have trouble with feedings. They stopped his feedings and continued to monitor him. On November 17 they finally were concerned enough to consult a surgeon to evaluate his bowel. He was extremely sick and hadn’t been fed in nine days. The surgeon came November 18. Even though we knew Nicholas was sick, we were in denial most likely. I still didn’t think he wouldn’t pull through. The surgeon came and said he needed to go to surgery immediately. I had been running an errand an hour away. My husband called and said to come back. It was then I was told the severity of the problem. The surgeon said that if he would open his belly and if there was bowel to be salvaged, he would be in surgery for a while. If however there was nothing to be done, he would open and close him back up and his injuries would be fatal. It would only be about 20 minutes if things were bad.

Both of our families were there and all waited in the surgery waiting room. I was going insane sitting and waiting. Family members were sitting there watching a football game that was on the television and talking about what was transpiring on the television. How could these people be sitting here talking about a football game when my son could be dead in the next few hours? That is all I could think of at that time, and looking back, they were doing everything they could not to think of the possible outcomes. I told my husband I wanted to go back to the NICU and sit with Noah while we waited. It had been 15 minutes, so that was good, wasn’t it? As we walked in the NICU, we saw the surgeon at the nursing station. How had he beat us up to the nursery? We knew what he was about to say. We walked up to him and he told us that Nicholas’s bowel was completely necrotic and there was nothing to be done. We made the decision to take him off life support and finally hold him until he passed. We were taken to a private room in the NICU with all of our family surrounding us. It was the first time I had gotten to hold him. I was finally holding my baby only to have him pass away in my arms. I hope he knew how much he was and still is loved.

We had a service and burial for him. I will never forget those days of planning a funeral and picking out an outfit to bury him in. We had many friends and family show for services. We will always be grateful for everyone’s support during that time. Nicholas’s two-year anniversary just passed. It seems harder to deal with instead of easier. As Noah grows, I try to imagine how it would be with both of them playing and reaching milestones together. We don’t have to wonder what he would look like, for they were identical. We have since had another baby. In March of 2002, we welcomed Sara Elizabeth. She was full term and healthy. Noah is great with her and likes to give her hugs and kisses. I take both kids to the cemetery and let Noah run around and play with the flowers we have taken. One day he will know who is there and know how special he is.

I feel as if I have rambled on, but how do you condense your child’s existence into one page? I would like to hear from anyone who has lost a child due to NEC.

Sincerely,

Mary