Hellobee

We last left off with the new knowledge of D’s traumatic birth and brain injury. My room was one floor above the NICU, and I was not permitted to visit when I was still hooked up to the morphine drip. When I learned this (the morning after), I immediately stopped the morphine so I could go visit him. My husband was still coming in and out of the hospital, dealing with K at home and other things. D was in an incubator, and after a day he was able to get off the ventilator and on to supplemental oxygen through a cannula in his nose, so I was able to hold him for the first time.

However, his brain swelling got worse–which is a common response–and he needed to go back on the ventilator. He had a few EEGs (where they covered his head with cotton balls!) which showed moderate-to-severe swelling, but thankfully no seizures. The swelling peaked at day 3 when he didn’t react to heel pricks or other stimuli at all, and then thankfully subsided. We were told not to stroke him, but that we could lay our hands gently on him through the incubator, trying to move as little as possible. He was able to get back off of the ventilator, and began to regulate his own temperature so he could move out of the incubator and in to an open “crib.”

D on a bad day, getting UV treatment for jaundice on top of it all. 

I stayed in the hospital for four days, and was so anxious to get home. I wanted to be with my husband and K, to sleep in my own house (even if I was getting up to pump every 2 hours and sleeping on the couch since it was easier for me to climb out of when recovering from the C section), and honestly get away from the hospital. Although of course I loved D and wanted to be with him too, it was so awful visiting him in those early days, especially when he didn’t seem to get any benefit from me being there. I spent 3-6 hours with him every day, first by hitching rides (before I was cleared to drive), and then driving myself. Normally my MIL would stay with K (this was before he started preschool), but sometimes my parents chipped in to help also.

The NICU was a large bay set up with 10-14 babies in a big room, and rocking chairs scattered around for the parents. I initially didn’t like how public it was, but by the time we left, I appreciated chitchatting with the nurses and other parents. According to the visitor policy, children under 4 weren’t permitted, so we had to get our doctor to write a waiver for K to come and visit once. We did this when D was 2 weeks old – K was very cute; he thought all of the babies were his “baby D” and wanted to see all of them. Again, I thank my lucky stars that he was oblivious to the seriousness and the worrying!

Family of four together for the first time – the kids are thrilled, obviously

One of D’s main issues was that his oxygen saturation in his blood would dip dangerously low. D’s would regularly go between 60-70, sometimes lower, and a nurse told me she saw it go down to 16 on his first night. Wikipedia says below 80 is dangerous to your organs, for perspective. If you’re not familiar with a NICU setting, this means that D was “alarming” many times an hour. So, literally, an alarm would go off, and a nurse would run over and use a suction machine to clear out his airways, perhaps re-position him, and his oxygen level would go back up. During this NICU stay he also went back and forth with not being on any supplemental oxygen, high flow room air, and low flow 100% oxygen. Thankfully after his first week he stayed off the ventilator.

Note the sign that K made for him! The other photo is Sai Baba, a Hindu saint. These blankets were ours (actually hand-me-downs from K) to make it feel more like home.

I learned to relax some about the alarms – that sounds terrible, but it was necessary! If I jumped at each one I would have gone insane. The nurses taught me what positions were best to hold him in, how to stimulate (aka whack) him if he wasn’t perking back up after an apnea alarm, and later on how to use the suction equipment. There were always nurses around, but I was glad to be able to participate in his care, especially since there was a large staff and the nurse closest by at the moment would not necessarily know what he needed to recover (each nurse was assigned to multiple babies, not necessarily next to each other in the room). Later at home if things were too quiet D would sometimes get unsettled, and I would say “beep beep! beep beep!” and it actually helped.

Kangaroo care time, aka skin-to-skin

D’s inability to safely handle his own spit indicated to his care team that he wasn’t ready to start oral feedings. Once we reached the 35 week mark with no progress, D’s doctor took me aside to talk about him needing to maybe move to a chronic care facility. Although I held it together as best I could during that conversation, I later called my husband and lost it. I was imagining D having to live at a hospital-like facility forever, and never being able to come home. He turned papa-bear and called a meeting with both of us and D’s doctor the next day. Although I’ve mentioned that he works a lot, I have to give him credit that any time I’ve told him that I needed his support, he’s dropped everything and shown up to help me, and in return I try to fly the “mayday” flag as infrequently as possible.

During that meeting, D’s doctor was less concerned about the feeding situation, but said his rate of alarms was too high, and he required too much help (suctioning, stimulation, almost CPR on a regular basis) to be able to safely go home. It sounds so silly in retrospect, but I honestly just didn’t understand what D’s traumatic birth really meant until that conversation. I thought it was a terrible thing that he would ultimately get over. That conversation was the first (of many to come) that further clarified what an awful thing had happened, how much road D had to regain, and that my deepest wish that at some point I would close my eyes and he would be a healthy, normal baby at home would never happen. People talk about the “Welcome to Holland” article, which is fitting, but to be very honest, what many parents go through is not a comparison between Italy and Holland; it’s more like Italy and an active warzone, or an erupting volcano – at least for a while. I believe that when D’s brain took a hit, my brain chose to protect and shield me from the full understanding until I was able to handle it.

The big meeting culminated in a decision to get a “swallow study” done, where they would give D a tiny amount of a barium solution, and watch under x ray for where it would go. Sadly for us, D let it slide right into his lungs (although the observing OT said she saw an attempted swallow, it was ineffective). D failed the 2nd swallow study two weeks later as well. D’s doctor then suggested we consider getting a surgical feeding tube (G tube) placed in his tummy so he could come home, since his alarms had slowed way down, and he needed help only a few times a day. The thought of having him at home, when a few weeks prior I was imagining him never coming home, was so wonderful that I would have agreed to anything. My husband was not so eager, but we ultimately agreed to get the G tube. We had to transfer to a different NICU to get the surgery done (which gave us whiplash – a completely different set up!) and then returned to our original NICU to finish recovering and learn about D’s new equipment. I’ll write a post more in-depth on the G tube decision and subsequent reality later!

 After the G tube surgery – first time in his life with no tubes on his face!

We had a scare a few days before we were planning to go home, when D started having a LOT of alarms again. At this time they decided to resume his caffeine prescription, and he perked right back up! Although most preemies aren’t reliant on caffeine after 34w, D “didn’t get that memo” as his doctors said. The caffeine helped remind him to keep breathing, although it actually did make him jittery! I thought that was just how he was (his chin would wobble when he cried) but when he was off the caffeine later it stopped.

After 65 days, one surgery, one blood transfusion, and countless worries and tears, D was finally going home – to be continued!