Sunday, May 26, 2019

NICU - A Long Post for a Long Journey!

The NICU was definitely an experience. For my own memory, and for the sake of anyone else wondering, I thought I'd share our experiences. Forgive the length! 

I delivered at a hospital that takes babies 30 weeks and older. It's part of the U of M system of doctors, so we saw the same neonatologists and MFMs we'd have seen at the U, but with a much smaller NICU for overall healthier babies. 

The general set-up of this NICU was a series of bays with 5 "beds" right outside the nursing station for the most critical babies. Any baby on oxygen would be found there. Beyond that, there was a single twin room, five rooms with dividers and two beds each, and on isolation room, for a total of 18 beds. When things got too busy/full, all the twins on the unit were crammed together in single rooms, so for a while Aaron was 'bed 20'! Our NICU was on the same floor as L&D and the OB surgical suites. The family unit was two floors up. 

Our NICU always had an NP on duty, along with a charge nurse and floor nurses. We were visited by OT 5 days a week for the first 5 weeks. Nutrition did consults about formula and TPN. Respiratory therapy was only involved when the babies were on oxygen. At delivery, the NP, charge nurse, respiratory therapist and a floor nurse were present for each baby and evaluated and whisked them off to the two most critical beds right in front of all the nurses. There's a photo of that below. DH mostly stayed with the babies, but came back to check on me once I was in recovery.  Once I was stable enough to be moved to the family care unit, they wheeled my hospital bed past the twins' bay, and I could see a tiny bit of them, all wrapped up with their CPAP and their IVs.


The first day I wasn't in too much pain, but kept vomiting from the dilaudid so I couldn't go visit them until evening. When I did, I was able to do skin to skin with A, which was unbelievably amazing. 

Both had slightly higher oxygen needs than were being met. The Dr. ordered surfactant treatment for their lungs to see if their oxygen needs could be reduced. Baby boy A responded well, but baby girl T didn't. They tried a second round for her, however by the 26th, they had to place her on the vent, and place a central line so they could draw more frequent blood gas readings without having to do heel sticks. Because she was more fragile and because she was on the vent, we couldn't hold her. In fact, they told us we should only gently place a still hand on her in her incubator, and not yet try to stroke her. Further complicating matters, by the 26th, I was in so much pain from my digestive system that I couldn't tolerate the wheelchair ride downstairs or sitting up in the babies' bay for more than a few minutes, meaning I only saw them once that day. 

During this early stage, the babies were being 'fed' custom mixed TPN via IV. I was pumping every 3 hours round the clock, and the babies were getting 'oral care' of q-tips with colostrum on them being placed in their mouths by DH and the nurses. There was one nurse assigned to each. 

By March 1, Tess was able to come back off the vent to CPAP. DH was able to hold her for the first time, as I was in too much pain to make another trip downstairs after having held Aaron earlier in the day. Aaron was off CPAP and onto nasal cannula with room air. By the 2nd, he was off even that! They started to receive donor breast milk via NG tube, to supplement the little I was producing (much more on that for a later post). 

I had been discharged from the hospital by the 27th. Because I was in so much pain, the car ride to and from the hospital was inconceivable, and the bays where the babies were only had rocking chairs, which I couldn't tolerate sitting up in for more than 20-30 minutes. While the hospital doesn't have any boarding rooms for NICU parents, in extreme circumstances, they allow parents to stay in unused L&D rooms. They call these 'parenting rooms'. They have my deep, deep thanks because they made a parenting room available to us, and that's where we lived for the entire 6 weeks until A was discharged. We'd trudge back and forth every three hours to bring what I'd pumped to the babies, and spend as much time with them as possible. 

The babies were on a schedule of 'cares' every 3 hours. This meant diaper change and feeding at a minimum, and also sometimes blood pressure and temperature checks. DH was amazing and started participating in cares as soon as possible. I joined in once I started to be in a bit less pain, around 2 weeks. We also had rounds once a day. DH and I made it an point to attend rounds every day, and we typically attended all cares except the 4am set, although we'd trade off who was present. 

On March 4, the babies 'graduated' to a second set of bays, slightly farther away from the nurse's station. On the 6th, they further graduate to a dual room, with one baby in each room. Aaron had been moved to an open crib by then, and Tess followed a day later. 

By the 13th, we started attempting to breastfeed with a shield. We started with T as she was cuing more frequently. It was tough. For the first several days, she'd just scream bloody murder when put to the breast and wouldn't suck. I was in so much pain sitting up, and my baby was screaming at me, and then I'd have to sit up to pump afterward. It was absolutely awful. Our third day of trying to breastfeed, we changed from a cradle hold to a football hold, and she took off. Over the course of our NICU time, she took anywhere from 0 to 27 ml orally. That wasn't enough for her calorie needs, so initially she was fed via NG, later by bottle. Our NICU does 'infant driven feedings' or IDF. This means that if you want to, they'll give you 72 hours of protected time where you try to breastfeed and the baby is 'topped off' via gavage. We started with T first, and actually went four days, until she could latch and transfer reliably without screaming. After that, we introduced bottles and she downed a complete bottle on the first try. Her OT said that was unheard of, and to expect that it would probably be a few days until she did it again. Instead, she downed a full bottle on her next feed too, and kept it up! Baby girl likes to eat!

Once we had T on bottles, A was doing better with cuing, so we started his protected time. It's utterly exhausting to have to try to feed for 30 minutes, pump for 30 minutes, wash pump parts, and then repeat 90 minutes later, around the clock. Doing that for two babies in a row, when still in intense pain, nearly did me in. I pulled back on breastfeeding after A's 72 hours, and just focused on pumping so they'd get breast milk. I didn't have great output, but I was keeping up with both of them at that point, especially because their milk was being fortified by Neosure to keep their calories up. 

Once both babies were finishing bottles regularly, our NICU stay came down to a waiting game. Two things had to happen for discharge: 5 days without an apnea/brady spell, and greater than 80% of feeds orally. To everyone's surprise, A nailed that before his sister due to her persistent bradys. While the doctors tried to swing it so that we could bring both home together, in the end A was ready just before 38 weeks and T needed another 2 weeks to stop bradying. In the end, both were home for Easter. 

Our NICU stay was extremely trying, and draining, but we are so grateful to the amazing care team that kept the babies safe. We learned so much from the nurses and the OT that we felt much better prepared as parents.

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