Jimena is a twin mom who had a rocky road when it came to her pregnancy – and then her babies had an even rockier road in the NICU. This is Pt. III of her story as told in her own words. If you’d like to share your Prematurity Experience, email firstname.lastname@example.org.
Kai (twin A) came out first, we heard a teeny tiny little cry (thank god) and he was then rushed into his incubator. Matteo (twin B) also let out a tiny cry before being transferred to his incubator. I sadly did not get to meet them for almost 24 hours, mostly because I couldn’t get up from the spinal but also they were so fragile and premature (12 weeks early!) they were rushed to the NICU. Even though both came out breathing, they did need a bit of a push for the first few hours via a breathing tube.
Kai weighed exactly 2 lbs and Matteo was 2.2 lbs, both measuring at 12.5” in length. My first visit into the NICU was overwhelming. After all the research I had done online about premature birth, I thought I would be prepared for it all. I wasn’t. Nothing can prepare a parent for the NICU roller coaster. I couldn’t help but burst into tears at the sight of them. I had started lactating so you can imagine the combination of those emotions with the first glimpse of your babies and seeing them through a glass enclosure, not being able to hold them against your chest, and only being able to reach in one hand and rest it on their back, no rubbing or caressing, they said it was too much stimuli for a preemie with their skin being so thin and sensitive to touch it would do more damage than good. There were so many machines attached to them, IVs and central PICC lines going everywhere it was heartbreaking to see them this way. The preemie diapers barely fit them!
The first 48 hours were the most critical for them. I pumped as much milk as I physically could. I felt like a cow most of the time, pumping every 2 hours to try to build up my supply seeing as neither would be able to attempt the breast let alone a bottle until they were at least 34 weeks gestation.
I would get a few in the middle of the night visits from the NICU residents asking for me to grant them permission to do this and that test on the babies. From inserting a PICC line, to having discovered level 2 brain bleeds and having to do multiple brain scans to even a couple of spinal taps when there was a scare of meningitis looming over them. I entered motherhood drenched in fear and sadness. I didn’t even want anyone besides our immediate family visiting me in the hospital during those first three days. I just couldn’t stand to have friends visit me and congratulate me with flowers. Congratulate me for bringing my fragile babies into the world so early? It definitely was not a time to rejoice in our eyes. I’m glad I had a private room because having to share a room with a joyous couple holding their newborn baby would just break me.
After the third day, I was given the green light to go home. I couldn’t believe I was going home – empty handed. It was gut wrenching to be wheeled out to the car without our babies. I would no longer be next to them. They had spent 28 weeks inside me and then we had been just a short walk away from each other. For the first time in 28 weeks, I was going to be many kilometers away from them. I wouldn’t be able to just touch my stomach and feel them kick or get out of bed and wander into the NICU at any hour of the day. It would require a lot more planning for that from now on. Our 4 month NICU journey was only beginning we were to discover.
Not only was I dealing with having two babies in the NICU but I was also trying to heal from my traumatic pregnancy experience. Every time I went to the washroom I expected to see blood. I couldn’t hear or see anyone who was pregnant around me because I would burst into tears, especially after they would say how they were having a great pregnancy. As time went on, I became stronger and better able to talk about what happened. People would ask if I’d have more kids and the thought alone of having more children brought on anxiety even though my OB confirmed my chances of this happening again were pretty slim I am, to this day still traumatized by the idea of a remote chance. Yet I still feel robbed of everything a pregnant woman should experience.
I was robbed of a “normal” pregnant experience, a “normal” birthing experience and even a “normal” leaving hospital with newborn type of experience. But I kept telling myself I had to be strong for the two little babies who were fighting for their lives every single day. I visited the NICU two sometimes three times a day. Once for the early morning care and stuck around to listen to the doctors do the rounds. Then I’d go back home then go back in the early afternoon and then go back after dinner with my husband. I was off on sick leave during this time but my husband had started a new job around the time I gave birth so he wasn’t able to take time off like I was. I always felt guilty when Id leave the NICU, and we often felt like we were visitors there and had to ask permission to hold or feed our children. It was an awkward time for us, we never really felt like they were ours and that someone else was doing the parenting role for us.
Both Kai and Matteo were born with RDS (Respiratory distress syndrome) and needed surfactant to help tackle this, which they did thankfully. Matteo had severe problems with apnea. Many times while we were visiting them in the NICU, he would just stop breathing and the machines would start going off and the nurses would come over and rub him and coach him to start breathing again. This happened a lot, he would go a good 20 seconds or more without responding and each time you would think it would get easier for me to witness but it never did and I’d always have to lean and cry on my husband’s shoulder, my heart beating fast. Luckily every time he would begin breathing. They both had IVH (Intraventricular hemorrhage – bleeding in the brain), Matteo had a level one bleed and Kai had a level 2 so they required many brain scans to keep an eye on them make sure it wouldn’t get worse.
They both also had a PDA (patent ductus arteriosis a common preemie heart problem). Normally they doctors try to close it with a drug and it worked for Matteo, after two rounds his PDA closed up. But Kai’s did not and he suffered a lot with it. He struggled to breathe and because his heart was working double time to pump blood through his body he ended up burning too many calories and therefore was not thriving in weight gain. We kept pushing for him to have his PDA ligation surgery but the doctors weren’t ready to go that step since he wasn’t strong enough to withstand the surgery.
It was a vicious circle. On top of it, they both had to have their eyes checked regularly for ROP (abnormal growth of blood vessels in the eyes which can lead to vision loss – common again for preemies before 32 weeks) the tests were terrifying to watch, the babies’ screamed so much I just couldn’t be in the same room it was terrible. Luckily both kids had it mild with just a grade 1-2 and all that was needed was to be followed closely for the first year of life with a specialist. Kai had bad anemia and needed two blood transfusions as well. On top of it, Kai developed a double inguinal hernia in his groin. It was awful. He was such a colic baby always angry or upset and we later found out it was just pain from the hernia. Both had to be on C-PAP for quite a while. Matteo lasted about 6 weeks on CPAP and then we were able to practice bottle feeding him but Kai because of his hernia and PDA pain he was on it for at least 12 weeks.
A month after giving birth, Kai had his PDA ligation surgery which was done at the neighbouring children’s hospital, yes, I had one baby at the hospital I gave birth at and one baby at the children’s hospital next door. Visiting both was difficult to say the least.
After 3 months in the NICU, Kai was moved to the children’s hospital NICU next door so he could have his double inguinal hernia surgery. He did amazingly well after his surgery and his attitude changed dramatically, he was such a calm, happy baby. Matteo at this point was off his nasal canula and doing well with bottling but Kai had just been moved to a nasal canula 24 hours before his hernia surgery but he still had his NG tube. He was still refusing anything orally and had developed very severe oral aversion. Matteo was ready to come home and Kai they wanted to keep until he would be off the tube. We fought for them to let them go home together and finally they did. But only after the nurses gave us NG tube lessons, my husband had to learn how to insert the tube and we both had to learn how to use the machine that would be attached to one end that would feed him the milk. We had to learn how to increase/decrease the speed that the machine would feed him to challenge him. It was going to be hard but we were on board with it all as long as we had both babies home at the same time.
Just in time for Christmas 2011, both babies came home. There were no words to describe how we felt. We knew the road for us was still not over, they were still preemies and we’d have to keep them quarantined for a little while longer especially in the middle of flu and RSV season.
I struggled somewhat at the beginning, my husband like I said, had a new job so he wasn’t able to take any time off, my parents had to work and my in laws lived 12 hours away by plane. I had to manage all on my own, not only was it a challenge to have to learn the ropes alone with twins but one had a severe oral issue that I had to manage as well.
Luckily just a short few weeks after they were home, we were connected with a community care service that provided me with nursing help 3 times a week. She was a godsend! She was hired to help me with Kai’s feeds (every 3-4 hours) round the clock but she helped with Matteo and helped as well with diaper changes and letting me rest for a bit while she managed both. I don’t know how I would have done it without her. She became a part of our family.
We also had an occupational therapist that helped us both battle his oral aversion and a dietician that would come first weekly, then bi monthly and eventually monthly to weigh them both to make sure they were following their growth chart. My in laws came over Christmas and helped out while my parents would come on weekends to help whenever they were able to. I am so grateful for this support I had.
Kai’s oral aversion took 14 months to overcome. It was very difficult but we did it. We took the NG tube out over a month ago (beginning of June) and we are praying he will no longer need it. He is no longer followed by his O.T. or his nurse (though she’s still a big part of our lives) but his dietician still comes monthly to assess him. My twins are now 23 months old (19 months corrected) and we are starting to plan for their second birthday party. I often look back at everything we’ve overcome over the last 2 years and it amazes me how much ground we’ve covered. How much these two little guys have improved and impressed us. They are healthy and doing wonderful, we are extremely proud parents!
And even though they may not be considered preemies by the standard medical book anymore, they will always be my preemie warriors.