Updated: Jul 17
My twins were born on March 30th, 2014 one boy one girl. They were born at 33 weeks 4 days gestation exactly 6 weeks premature. They spent a total of two weeks in the NICU learning how to feed, learning how to breathe on their own, and so much more before they were strong enough to come home. I could hardly move for a couple of weeks after my cesarean and I walked very slowly. I couldn't drive, so I had to wait until after my husband was done work before we could go see the babies. When we would arrive at the hospital I would drop off my breast milk so the NICU always had it on hand. I just so happen to be pumping so much milk, the hospital had to tell me to stop bringing it, because they didn't have any more room in their fridge. Every time we got there our boy twin was always so quiet and always so bright and alert. He would just be looking around. Our girl twin was usually our fussy one, or typically the one we would pick up first when we got there. Taylor seemed so content at the time so I would pick up our daughter and my husband would pick up our son. I would say oh my gosh this boy is such a good baby, he never cries honestly he never did when we were there. Turned out he cried all day long when we were not there. I guess by the time we went to visit he was so pooped out from all the crying he did all day he was too tired to cry by the time we arrived, or so the nurses would say. Finally, the day came that we were able to bring our daughter home. She came home first because she was feeding and she was growing quicker than her brother. Two days later we were finally able to bring our son home. Well, this was interesting. They cried all the time. Here I was exclusively pumping breast milk because they were too small to breastfeed, And I had two crying babies all the time. Our boy in particular, I couldn't put down for two seconds without screaming. Except for the minute I picked him up, his sister would start crying. I went out and bought a k'atan wrap so I could constantly carry my son around and still be able to attend to everything like my two older children and his sister. A few days after being home my milk supply started to dwindle down. My two older children found it absolutely hilarious watching Mommy have two things at one time pumping milk out of her boobs. I had a double electric pump. I never had time to eat or drink as much as I should have. I was constantly pumping, or feeding a baby. I had no time to breathe between feeds, let alone use a toilet. I had to give up exclusively pumping and switch to formula due to losing my milk supply. I'm happy I at least got two weeks in of breast milk, I was proud of myself for that. I didn't put myself down for having to switch to formula. I did what was best for myself and what was best for my babies. Suddenly both of my twins started throwing up everything they ate. I'm not talking a little bit of spit up here and there either, like any other baby. I'm talking everything they took in came back up like a fountain. So like any parent would be, I was concerned. I took my twins to the Urgent Care center to have them checked out. Since they were premature and they hadn't put on any weight, they wanted to admit us to the pediatric floor to monitor their weight gain and their fluid intake and outtake. First thing first they hooked both babies up to IVs, just to make sure they were getting fluids at all times and not getting dehydrated. There's nothing worse than watching your babies get poked over and over again. Especially by people who don't know how to care for premature babies. I would often request they bring in Nicu nurses to the pediatric floor to care for my babies since Nicu nurses are trained to care for such small babies on a regular. In fact, they had put an IV in my sons arm and his entire face and body swelled with edema twice the size it should have been. I knew there was something wrong. I knew he didn't look right and I told them over and over, "there is something wrong with his IV it's not in properly and he's swollen everywhere." They didn't want to take it out and try again since they already collapsed every other vein possible, he had none left. So they would take a quick look at it and say it looks fine and leave it for another day. He was clearly uncomfortable and very fussy, very irritable. This just wasn't my baby that I came to know and love in such a short time. Finally, I decided to start showing the doctor pictures through my phone of how he was supposed to look and I managed to convince them to call someone from the NICU to take out the IV. "Finally!" They took out the IV and lo and behold the swelling went down within 24 hours and he returned to his normal size again, and he was fussing a lot less. We found out the reason they couldn't keep their food down was that they had acid reflux. Our daughter could still drink by a bottle but she would throw it up afterwards. The doctors didn't seem overly concerned about her, they just monitored her and put her on a formula for a milk protein allergy, and medication to neutralize the stomach acid. T on the other hand, his esophagus was so raw due to the stomach acid. He refused to drink from a bottle due to pain, so the nurses had to put a tube in his nose to his stomach so he could be fed. Once again being on the pediatric floor and not in the NICU, the tube they used for him was way too big for his tiny nose.
Remember when I said they took the IV out of his arm well they had to put another one in to regulate his fluids and make sure he stayed hydrated. Except now they had nowhere to put it except his head. Now, this really freaked me out they wanted to stick an IV in my son's forehead. I was not a happy camper I was pissed off at what they did with the IV in the first place and I was pissed off they collapsed all his other veins, and they had to resort to this. I was really pissed off that the tube they had in his nose was way too big for him and clearly uncomfortable. I just wanted to leave that hospital. I wanted them to send us to a children's hospital since they clearly didn't know how to take care of my son. I had enough and this was my child. If I didn't advocate for him, who else would? Suddenly I became the unreasonable mother who clearly had some kind of emotional trauma and couldn't make rational decisions. So then they turn to my husband and they asked my husband to make the decision to put the IV in our son's head. He made the decision to allow them to put the IV in his head, and I know now it was the right decision, but at the moment I hated him for it because I felt like he should have backed me up. He did what was best for our child. I know that now. Next our son's temperature dropped to 35° c, and he could no longer regulate his own temperature. He needed to be placed into an incubator. I thought we were past this point, apparently not. So now here was my three-week-old baby back in an incubator being tube-fed, and an IV in his head.
This was an emotional roller coaster that I never want to experience again. During this time in the incubator, he developed thrush. Thrush is yeast within his mouth and throat. The warm temperature and high humidity inside the incubator allowed the thrush to thrive. Despite regular treatments, it didn't get better it just kept getting worse. His mouth, his throat, and his esophagus were just caked in white fungus. My poor child. To make matters worse he was categorized as a failure to thrive, he couldn't keep any formula down because of his reflux so he wasn't gaining any weight. We had a dietitian come in and give us a special formula for him, this was a pure amino acid formula and was completely hypoallergenic. the dietician came up with a different way to mix the formula so that it would be thicker and hopefully stay down, this also gave him more calories at each feed. Finally, his temperature regulated again and he was able to come out of the incubator. The thrush was a lot easier to treat when there wasn't constant warm air feeding it. We spent a total of three weeks in the hospital playing with different methods of the formula, different calorie counts different and medications like ranitidine, domperidone, etc. One huge difference about being on the pediatric floor compared to having your children in a NICU, is you don't leave. A parent/guardian has to be there to watch the children 24/7. The NICU however has nurses that do feedings, changing, and looking after your babies so you can go home and rest. On the pediatric floor you're feeding, you're changing, and you're sleeping there day in and day out. Many days I was there all day alone with both babies. My husband had to work. The hospital would have volunteers come to the floor and ask if anyone needed help or wanted to have a little break. I would typically go downstairs to Tim Hortons and grab a coffee and a snack for something to hold me over until daddy got back from work. Every morning he would go to work and every evening he would come back to the hospital. We shared a hospital bed for 3 weeks. On the upside, we made friends with just about every nurse that had worked on the pediatric floor. One nurse in particular I remember the most. She was fantastic and went above and beyond for us many times over during our stay. One night she even let us go home for a whole night so we could shower, do our laundry, and even sleep in our own bed. She had set up a mobile desk in front of our twin's room and she stayed there for 12 hours straight monitoring our babies. We made sure to make it back before 7:00 a.m. when her shift ended. I will never forget her. she made our stay just a little bit better. When we finally were able to break out of there and take our Twins home, we came home with a regimen of medications, and expensive formula. Each baby had a different type. Our son needed Puramino formula costs $200 a week and his sister's cost $100 a week. Oh, it was not covered by any insurance, we paid out of pocket for the formula.
When they were five months old they both caught RSV. It hit our son first and the hardest. RSV (Respiratory syncytial virus) is a virus, and there's very little doctors can do for it except treat symptomatically. Our sons method of treatment was continuous high-flow oxygen and regular suction treatments to clean out all the mucus in his nose. He developed bacterial pneumonia aswell and had to be put on antibiotics. He was very sick. His twin sister followed suit. She too was put on antibiotics and was put on oxygen, but she didn't rely on the oxygen as much as her brother did. We spent a total of two weeks on the pediatric floor once again. Well at least we had some type of priority, since all the nurses already knew who we were. As soon as they heard their names, they were very quick to process everything and get their room set up. We made it through. Both twins were 11 months old before they finally grew out of the reflux and stopped spitting up every time they ate. We used to pray every day just please stop, this just needs to stop. I used to wish they would just grow up, because all the doctors told us they would most likely grow out of it. Than it just seemed like it was taking forever. Most people don't want their kids to grow up fast, but that first year was just such a roller coaster, we couldn't wait for them to get over that hump. The amount of money we were spending on formula and medications we definitely needed it to stop. Suddenly one day there was no spit up, then the next day also nothing and then a week went by and then a month. Suddenly one day I looked at my husband and said "oh my God, they haven't spit up and like a month!" Knock on wood! I didn't want to curse myself. Truth be told that entire first year was a huge blur. I feel like I missed out on all of the good stuff, all of the first milestones we didn't enjoy as much as we wanted to. I now wish I could go back and do it again without all of the reflux , spit-up and the sickness, and everything else that went along with it of course. I feel like I missed them as babies. I missed the first year being so busy, wishing they would just grow out of it all, that we truly missed the good parts. Sure we took lots of pictures and lots of videos but it's not the same. Anyone out there who's dealing with children who have reflux or RSV or anything, you too will get through this. Sure it might suck now, but try to enjoy the good parts, because you don't want to be looking back like me wishing you spent more time enjoying the good things, instead of wishing away the bad. Today both my twins are healthy, happy, smart 6-year-olds. They hardly get sick anymore and they have more energy than a family of monkeys. I'm still amazed that my relationship lasted through that year. We hardly knew each other at that point in our lives. Everything we did revolved around the twins, and our only communication was asking each other if we gave the babies their meds or what time we fed them. It was like living on a clock with limited time for anything else. The Twins were not great sleepers, especially our boy. We were up many nights during their first year. We were like zombies, we were always so tired, it was just chaotic. Even though we put our relationship on the back burner we were a team 100% and we still are. I'm thankful to have had somebody as great as him to have had our twins with, we held each other up, through all the good times and all the bad.
Author: April Mortimer 2020