This is a piece written for us by a member of the infertility, loss, and adoption community.
She came home on their due date, three days before they were 11 weeks old. She was barely 6½ lbs and looked like a newborn. She wasn’t even wearing newborn clothes, still swimming in preemie clothes. We fought for this day. I cornered the doctors and let them know, in no uncertain terms, that I could take care of my baby. She wasn’t doing anything in that NICU that she wouldn’t do better at home. The stress of being in that hospital was killing me. I knew her brother needed more time, but she was ready. She, in her own way, told me that she wanted to be with her mommy. She ate better with me; she had fewer spells when I was feeding her. I could pull her out of the spells quicker than the nurses. The doctors were concerned that she was still dropping her heart rate when she ate; they said she was still choking and needed to mature. They were watching when the nurses fed her, not when I fed her. I asked to take them home on a monitor to prove to them that I was capable of caring for my daughter. There were two nurses on my side. They knew me and trusted me enough to back me up. I was still going to bring her in almost every day to be with her brother, but there was just so much more healing that could happen at home.
Seventy-four days before we walked out those doors, I had already been admitted to a hospital forty-five minutes away for ten days. My water had broke late in the evening when I was 28 weeks exactly. I know “exactly” because everything had already been controlled by doctors. From the growing and retrieval of my eggs, to the sperm meeting the egg, to the 5-day embryos being reintroduced to my body, everything was assisted by a doctor through IVF with ICSI. I was closely monitored from the moment we saw two sacs and two heartbeats. I was happy to see the babies so frequently, but I was getting tired of the doctors. Then my water broke and I was put on hospital bed rest. I was discouraged from moving around too much in order to keep me from furthering labor. They tried to stop my labor three times during that stay. The third time, it was not stopping. But I was okay. I knew in my heart of hearts that at 29 weeks and 3 days, my babies would have a fight, but they would be okay. And they fought, and fought hard.
My husband was not in the room when they were born. I had to be put under because my spinal block didn’t work in time. Once they were born, though, he was brought in. He said he was never so worried in his life. He said they were both blue and lifeless. The doctors worked feverishly to get them stable. Both had to be intubated, but he took pictures with his phone anyway. I’ve only looked at them a few times in eight months. Those photos scared me, even though they were pink by that time. I thought, maybe I was wrong, maybe they wouldn’t be okay, I shouldn’t have pushed so hard for the doctors to just take them because I was in such pain and didn’t want to be on magnesium anymore after this. I didn’t get to see them until that afternoon because I was still recovering from surgery. Though still groggy, and in severe pain, I begged to see my babies. They wheeled me upstairs and awkwardly maneuvered my bed next to theirs. I was instructed to stop stroking their backs, but to just lay my hand on them. Their bodies were barely longer than my petite hand was wide. It was weird to touch them, their skin felt so fragile, their limbs were so thin, almost like twigs. But after seeing them, my fears melted. They were strong, they would be okay.
The following weeks, we all fought. I had a tough recovery, I fought to wake up to pump, I fought through getting sick the week after they discharged me. My husband fought to keep the household going, but even with my mother helping, it was still a struggle. Our oldest fought through confusion, why things were so different. NICU life was two steps forward and, depending on the day, one or three steps backwards. My babies were known as the naughty ones. Always keeping the nurses on their toes. I was there 8–12 hours a day, doing everything I could to help care for my babies. Then, at 6 weeks old, we fought to get them transferred to a closer hospital so it would be easier for us to visit. My being there more often was helping. I was able to better connect with the nurses. We worked better as a team. They heard my concerns and they better understood my kids. They fought for my kids. They knew my kids needed to be pushed, not coddled, to make strides. Especially our boy. We quickly found out that we had to give him a goal and show him where he needed to be in order to reach that goal, not just wait on him to show that he was ready. They allowed me to be more of a part of the care team, not just an outsider to hold and visit. They saw the strides my kids made when I was there, and the backslides when I wasn’t. They celebrated the accomplishments more and made me feel more secure that I did know my kids. They encouraged me to tell the doctors my concerns and backed me up, but they also kept me grounded when needed.
We made it through with only a handful of true scares, mostly caused by my puny little boy who just wouldn’t behave. My daughter would have her moments, but Momma could straighten her out with a stern talking-to. After 11 weeks, she was ready to come home. She would misbehave for the nurses, but do very well for me. This was her way of telling us. The doctors didn’t believe me, but the nurses knew. They helped me bring my case up to the neonatologist.
With the nurses backing me up, my point was heard. It was arranged and we came home with our daughter. She did fantastic. We went home with a monitor, but we went home! She only set it off when she was mad and her heart rate would get above their parameters. She had to be held just so to eat, but she would eat best with me. After 13 weeks, he got to come home, too. He was over 7lbs, but still so tiny looking. He did much better, still setting off of his alarms when he got mad, but he was calmer than his sister. He seemed more fragile, but was calmer and almost easier.
It was like we were bringing home newborn babies. Two tiny little beings, who thought being 3 months old meant acting as if they were just born. It’s like time stood still those 13 weeks. They were growing and fighting and being oh-so-very naughty, giving the nurses a run for their money, but when they came home, they were not 3-month-olds. They weren’t starting to coo or trying to engage in the world around them. At 6 months old, they acted 3 months old. When we finally went out into the world, people asked how old they were and the looks we got (and still get) with the answer was almost comical. One person even asked if we were sure about their age.
I now just say their actual age, and immediately follow that they were very premature so they are actually supposed to be such-and-such age. Hopefully this will also register in people’s minds to not touch the babies with their nasty, germy hands. They are now 8 months old and are ever so slowly starting to catch up. Little girl has had a growth spurt and actually has chunk, while little man is still a tiny bean pole. But we are petite people and, as my grandma always says, you plant peas, you get peas. They are acting like 6-month-olds and aer now only two months behind instead of three.
Things are going smoothly, but it’s still a fight. We’ve still had our struggles, with a few too many ear infections and with them really not yet the size they should be. But they are fighting. We are still celebrating every milestone with Facebook posts and cheers from those who love us. I’m still tired of the doctor visits, but they are far from being done and I have to relinquish that. I have to be in the moment. I still get to enjoy the milestones, the kids are chronologically older, but I still get to see the progression that everyone else gets. We are blessed that they are extremely healthy for what they could be. There’s a post going around Facebook about couples getting married young and they just say they get more time together. I claim that same sentiment. I’m not missing the milestones, I just got three extra months with my babies that most people don’t get. I had to fight for them and they had to fight for themselves, but we still got to have that time together. My husband gets to hold them a whole three months earlier than people who carry their children to term. It was scary as hell to see them that fragile, and I never want to do it again. But, it did happen, and we are on the other side and we are okay.
We are sharing stories on premature birth out of respect for Prematurity Awareness Month, which runs for all of November and is coordinated by March of Dimes.*
“November is Prematurity Awareness Month® and when the March of Dimes focuses the nation’s attention on premature birth. The awareness month kicks off with the release of the Premature Birth Report Card. November 17 marks World Prematurity Day, and the March of Dimes and [their] partner organizations worldwide are asking everyone to help spread the word on the serious problem of premature birth.”
*Disclaimer: Rainbows & Unicorns does not necessarily endorse March of Dimes or any of their services, products, or opinions.