On March 25, 2016, we unhooked Cole from all his monitors, gave him his final bath in the grey Special Care Nursery basin and dressed him in his “going home” outfit, just 54 days late. The nurses passed him around and walked throughout the facility with him without restrictions, showing him off. He was free. We spent the rest of the afternoon cuddling with Grace until we said our goodbyes to Grace until tomorrow (we got to take her home the following day!) We put the nursery phone number on speed dial for any urgent matters we wanted to run by our nurses. We cleaned up our area and packed up all of Cole’s things. We carefully put Cole in his carrier and cried with our nurses as we headed to the elevator bank. We stopped by the NICU upon our discharge to say goodbye and thank you to our nurses and doctors on Blake 10. We would miss their care and company so much. We slowly walked through the reception area of the hospital and Geoff ran to get the car. We loaded Cole up into the SUV and started the very slow and cautious drive home.
When we arrived home, we were so excited! We gave Cole a quick tour and showed him his new room. We got him prepared for bed- changing his diaper, getting him in clean pajamas and giving him a bottle in our dimly lit bedroom to help him relax. We turned on the same sound machine he had in the nursery. He was calm and seemed genuinely happy. When we put him in the bassinet though, all hell broke loose. He cried and cried and cried. We tried more milk, rocking him and swaddling him… nothing worked. The nurses had warned us that it took babies with longer hospital stays a few days to adjust to their new environment but I had no idea the exhaustion this transition would cause. We sat up until 3 am when he eventually dozed off and Geoff and I laid there in bed shell shocked. All I could think was- tomorrow we have to go back and get the other one…
Grace came home on March 26, 2016 in the morning… just 55 days late. After only a few hours of sleep with Cole at home and all the grandparents over to watch him, we ventured back to MGH. We unhooked all her monitors, gave her a bath and put her in her “going home” outfit. There were more tears shed as we left the Special Care Nursery for the final time. We also brought Grace by the NICU so everyone could see how much she had grown and say goodbye. We again slowly moved through the hospital, loaded her up in the car and drove very slowly all the way home.
Once we arrived home, we had many visitors to help us. The grandparents stayed for most of the first day to help us adjust to having two premature infants at home. We worked very hard to continue the rigid schedule of the nursery. We had “care times” for both children on the same schedule, every three hours (because of their size, it was necessary). The care times occurred at 7am, 10 am, 1pm, 4pm, 7pm, 10pm, 1 am and 4am then begin again... At this point, the twins were still three weeks away from when they were due and so feeding took a lot of time. Each care time took about an hour between changing their diapers, prepping bottles and feeding them. I was also still pumping 8 times per day so I typically tried to do that twenty minutes before each feeding to keep my supply up so each care time took about an hour and a half of our time. Needless to say, my life revolved around pumping and feeding babies for about twelve hours per day.
During the other twelve hours of the day (or 1.5 hours between each care time), I had to eat (a lot when you are pumping!), sleep (not so much), do massive amounts of laundry, cleaning (premature infants have a suppressed immune system so a clean house is a must), shopping (amazon prime is the only reason I survived the first few months), spending time enjoying babies, showering (I made myself shower every single day- all mothers should have this luxury) and trying to spend time with all of our visitors. There was no time for anything I really enjoyed and I was too exhausted to appreciate much of anything in life.
I’m going to be completely honest here. I was beyond excited to take my babies home. It had been such a long road and all I had wanted for months was to sit on my couch and cuddle my babies. I remember being giddy as we walked into the hospital that last day to take them home and being the most excited I’ve ever been in my life. Three days after having them home, I was ready to send them back!
The babies could not adjust to the nighttime… they often stayed awake from the 10pm bottle until the 1am bottle and cried if they were not being held. They would finally sleep after their bottle from 2-4am, take another bottle 4-5am then sleep 5-7am and then do another bottle at 7 and we’d all go back to sleep at 8 for another couple of hours so we could piece together a six-hour night of sleep on the best of nights. I felt like I was walking through life like a zombie. The only reason we could mildly function was because Geoff had a month of paternity leave so we would sleep after the 7am bottle until about 10 am to catch up on sleep.
We also continued to struggle with the issues of having premature twins. Our twins required a chemistry lab in our kitchen with breast milk, formula to fortify the breastmilk to be higher in caloric intake, vitamins, medications, etc. The babies had doctor’s appointments all the time…eye doctor at Mass Eye and Ear every two weeks, pediatrician visits several times a week, a visiting nurse for weight checks every week, pediatric GI doctors every week, and the MGH Newborn Developmental clinic. Grace also went to a clinic at Children’s for her hemangioma on her liver. Both kids also had Early Intervention coming every other week as well to be assessed on their development. These appointments took over our lives in the beginning and it was stressful getting them to the appointments and hearing what the doctors had to say. The appointments also threw off their schedule, which stressed me out.
In addition to extreme sleep deprivation and a ton of doctor’s appointments, I also struggled with the extreme anxiety having them home and being a first-time mother. After watching your baby’s heart rate drop several times an hour for weeks and weeks and then you suddenly have them off the monitors, it’s beyond stressful. At first, I’d get up several times a night just to check to see if they were still breathing. I’d constantly research SIDS because it was my worst fear. I started having panic attacks as the day was ending and the night was upon us because I knew I wouldn’t sleep and I’d worry all night. I struggled with post-partum depression and PTSD. I felt depressed, sad and lonely even though I was constantly surrounded by people. I would have flashbacks of seeing my babies in their tiny isolettes and need to rush up to take a shower so I could cry in private. I was also extremely jealous and angry of anyone with one healthy baby. For premature twin moms, one healthy baby looks like a breeze and I was so jealous of having that one on one time with a single baby. I was also mourning my old life of being able to just go out when I wanted to or sleep for more than a two-hour window at a time. I loved my babies but I struggled to like myself and my new life. Side note- Eventually I did go see a Social Worker about my post-partum issues. It was immensely helpful and I’d recommend her to anyone struggling with any of these issues. They are so common and I’m happy to talk about it one on one.
The first several weeks were extremely rough but like most tough times, they do eventually begin to end. The no sleep, lots of feeding and pumping and trying to adjust to a completely different life that we hadn’t signed up for eventually got easier. When Grace and Cole went to the pediatrician on their three month visit (May 1st), Grace had reached the weight of 7lbs, which is considered a typical newborn weight. At that point, we had the permission of the pediatrician to stop waking the babies in the middle of the night for feedings. At that point, we could wait for one to wake up to be fed and at that point, we would wake the other one to keep them on the same schedule. The first night we had that permission, the babies had their bottle at 10pm and slept until 5am (this was not the new normal but it did help a couple of times a week!). It was amazing! We also just became more comfortable… the stuff that originally stressed us out because more routine. We also had a huge support network of other twin moms and nurses to bounce ideas off of and to feel that it was okay to not have all the answers. It was the start of the process to beginning to feel human again.