Read about our NICU experience from the beginning with: Life in the NICU – Part 1
I should have entitled this post – “Chronicle of Small Victories” – because that’s really what it is. There were so many small victories leading up to the big victory of our boys coming home, my heart is so full reliving them all.
Just as I was getting into a routine at the hospital, we were told they would be moved. As of March 5th, 2014, they were no longer under Level III care and would have to move to a lower level facility to free up space for two other babies in need. I couldn’t be there to accompany them on their trip across the city, but I called the new hospital as soon as I could to hear how their trip went, and Caleb and I headed down there to get them “settled in”.
The next time either of those babies were moved, it was to go home.
A completely different atmosphere, as a strictly level II / level I facility, they generally care for infants born at 32 weeks gestation or greater (our boys were actually only at 31 weeks gestation when they were moved). The focus now was obvious – for our babies to grow and learn to eat so that they could come home. The nurses helped me to see the bigger picture, the light at the end of the tunnel. They would make comments like, “once they are at home…” or “when you go home…”, I don’t know how much they realized that meant to me.
The first night at the new hospital was a shock. It was like all of a sudden, our babies had become babies. They were wearing these adorably huge onesies, hiding the little sensors on their chest. No more phototherapy, no more cPAP, no more oxygen. Their feeding tubes moved from their mouth to their noses, and they were starting to take milk orally.
The hospital follows this elaborate 11 stage feeding schedule – slowly increasing the amount of milk they would take orally and decreasing the amount they would take through their tube (or “gavage”). The babies would move through the stages at their leisure, once they showed their mastery of a stage, the doctors would graduate them to the next. From squirting a bit of milk on a soother – to filling the nipple of a bottle – to drinking from a bottle – every time you’d come in and see that they had moved up a stage, you couldn’t help but feel absolutely elated.
Along with oral feeds came breastfeeding. I had met with a lactation consultant a few times before (the NICU keeps one on staff), but the subject had always revolved around pumping and how to maximize my milk supply. I was pumping every 3 hours or so and was bringing the milk with me to the hospital. Now, I would be able to start nursing them. At first, I was just able to put them in the position and let them check things out, and from there, it progressed to nursing them for 5 minutes, then 10 minutes, then 15 or 20. It started to dictate my days. If one of them had a really great nursing session, I would leave them feeling fulfilled, but if one of them had a particularly difficult time nursing, I found it would leave me frazzled.
As soon as they started regulating their own temperature, they no longer needed the cozy environment of their isolettes and moved in together. This meant – they got their own special twin-sized cot.
I started spending a little less time at the hospital, trying to maintain my mom status at home with the two older ones who were needing me. Ok, so this is pretty much a lie. I had my mom picking up the slack for me at home – these babies were my priority. I started spending less time basically out of self-preservation. With the oral feeding being introduced, they liked to limit the “handling” of the babies, encouraging them to grow. They were eating every 2 hours, so one feed would incorporate an oral feed and the next would be what they called an “undisturbed feed” – where they would be fed through a gavage while they lay in their bed. It was excruciating – watching them sleep, knowing I couldn’t hold them for another 2 hours. The first time they told me I couldn’t hold them yet, it was all I could do to hold back the tears. So, I adjusted my schedule. I would try to get to the hospital before an oral feed so I could nurse them and hold them for as long as I could. Then I would leave to pick up Hailey from school and Zach from daycare. It was like I was a mom to two different families – I was leading a double life.
2 weeks of this and the visitor ban was finally lifted. We didn’t hesitate. Well, actually, we did. Zach was nursing a cold and we had to wait (excrutiatingly) a couple days until his cough had cleared up. I really can’t complain, because, with him having a cold, I woke up every morning in fear that I was getting sick – and yet I didn’t.
Here’s a glimpse into the fabulousness that was seeing our family together for the first time…
After this, everything seemed to get easier. We could bring the kids up anytime we wanted/needed, and my mom could finally meet her two newest grandchildren. We would go up together in the morning, just in time for the doctors daily rounds, and we would gush together over how well they were doing and how much weight they had gained that night. It was nice hearing how well your babies were doing from a whole team of doctors and nurses all at once. Of course, I had to share the babies now – that took some getting used to.
It wasn’t long before “going home” became less of a dream and more of a reality. Ethan was progressing smoothly and quickly through the feeding stages, unlike his brother Henry, who was a few stages behind. The nurses were preparing me for the idea that Ethan would be coming home before his brother. I knew this was a huge possibility, as much as I prayed it away, but it was all around us in that NICU. I think every set of twins that I had come across during our stay, there had been one twin who went home before the other.
There were only a few things left to do – they needed to be switched from the hospital’s fortifier to a formula fortifier that I could purchase from a store, they needed to be 100% oral-fed and they needed to pass a car seat test in which they had to keep their oxygen saturation levels appropriate while positioned in their car seat for 2 hours. For Henry, being on caffeine, he either could come home on it, or they could try him without it at the hospital. If they stopped giving it to him at the hospital, he would have to be off it completely for at least 10 days before he could come home. They chose to try the latter, and confirmed that Henry would have at least 10 more NICU days to go.
The transition onto the formula was kinda messy. Henry adjusted rather quickly whereas Ethan had a harder time, making him gassy and uncomfortable. Nonetheless, after 32 days in the NICU, Ethan was 100% oral fed, on formula-fortified breast milk. His feeding tube was removed, and while we were visiting with him we could take him completely off the monitors. He passed his car seat test like a champ, and before we knew it we were packing him up to bring him home.
Here’s Ethan, after 34 days in the NICU, at only 34 weeks 5 days gestation, weighing 5 lbs. 1 oz., about to head home:
I think this was harder for me than when I was discharged from the hospital after having them so many weeks before. Henry looked so alone as we kissed him goodbye and left with his brother.
The next week was a complete blur. Bouncing back and forth between Henry at the hospital and Ethan at home was a challenge – the most exhausted I have felt, ever. Thankfully – again, my mom was here. It made it so much easier having her stay home with Ethan, than having to lug Ethan along with me to visit Henry.
Henry adjusted without the caffeine just fine, and eventually progressed through the stages, 100% oral-fed. It took him a couple of tries before he conquered the car seat test, but he did it – and after 40 days in the NICU, 6 without his brother, at only 35 weeks 5 days, weighing 4 lbs. 1 oz., Henry was going to be joining his brother at home:
The biggest victory of all. My boys, at home, as of April 7th, 2014, a whole month before they were originally due:
Our family was together. Our boys were home. Our life could start – and boy, did it start! We were a popular crew for the next few months, complete with home visits, eye doctors, dieticians, audiologists, physiotherapists, occupational therapists and paediatricians.
Every day was something new – survival mode in full swing.