The following is a document I wrote the week after our first child was born while he was still in the ICU, largely unedited.
Today (May 20th, 2018) Jess and I went and visited Magnus. We woke up around 9:30am after our best sleep in weeks. Jess finally feels like she is catching up on her sleep debt a little bit. I feel pretty good considering I slept for about 10 hours straight, only waking up a few times while Jess was pumping. It feels somewhat unfair that I have extra capacity while Jess struggles to continue to wake up and pump, but she is handling it impressively well.
We drove into the hospital around 11:15am. We tried to get there sooner but Jess wanted to have another bagel, this time with butter, so we stopped at Tim Hortons. Once we got to the hospital around 11:30am, I went to check on Magnus while Jess went to the pumping room to pump. She was doing better today than yesterday and seems to be able to cope more with the situation, all the changes, the fatigue and soreness and the traumatic experience.
Magnus was doing quite well today. They took him off inspiratory pressure overnight, which basically means they aren’t pushing “peak” air into his lungs for breathing anymore. He is still on Level 2 respiration support / basic CPAP, which is similar to what someone with sleep apnea would use. His oxygen concentration stayed in the high 90s except for one desaturation (desaturation, ie: blood oxygen levels dipping below 88 for more than 10 seconds). He only has one IV, attached to his head, for the purposes of delivering caffeine (still have to read about this) and finishing his course of antibiotics. Today he surpassed his birth weight of 1580 grams which means he will be stepping up the volume of milk he is taking from 30ml to 32ml and more.
I started to get a better sense of what happened to us today by taking the opportunity during a pumping session to read more about HELLP syndrome. It is a seriously scary pregnancy complication that generally should not have happened but did and implicates future pregnancies. It is upsetting to think that there is a risk that this could happen again (sidebar: it did with our second child in 2021) and that we might have to find alternatives to having biological children together. It would be worth it, but it would be pretty upsetting for both of us, and we would like Magnus to have at least one sibling.
Today felt like the most normal day we have had since Jess went into false labor last Sunday. Hopefully the days keep getting better and Magnus keeps developing. This is an exercise in acute and chronic stress management and coping. The acute stress is more or less over, but there is still a sense of shock and confusion around what happened, why it happened and what we can do in the future to avoid or prevent it from happening. Something we would like to do that is still a little ambitious for how we are feeling is to reach out to some researchers in the field of HELLP and offer any information / medical records we can to them to try and find a cure. Right now the only “cure” is to deliver the baby, regardless of the shape it’s in, which is scary.
Magnus seems to make significant progress each day, which is no doubt typical for a baby in their first week of life. Jess and I are happy that he has had a productive seven days and he seems to be extremely well taken care of by the nurses in the NICU. This experience opens up an entirely new world of careers, learning, anxieties and opportunities that had not fully occurred to me before. I could see Jess and I contributing to finding a solution for HELLP in the future, because of the impact it has had on us, Magnus and our experience.
It is incredible to see the benefits of kangaroo care setting in. Magnus seems to get value from sitting on each of our chests. When he sleeps on my chest, he seems to go into a deep sleep. All his vitals normalize and he seems to be calmly sleeping and gives off a vibe that he feels safe. When he sleeps on Jess’ chest, he seems to give off a vibe that he is happy. Sometimes he grabs for her nipple, cries or nuzzles in closer, and sometimes he does a similar deep sleep thing to when he is on my chest. We are going to try going in later and staying (much) later in order to fit in two sessions of kangaroo care during handling (when they/we change his diaper, check his temperature, deliver his medications, etc.) so that he can continue to feel safe.
Jess has been doing a great job continuing to pump milk and we are well ahead of Magnus’ needs at this point (exactly two days according to my spreadsheet). It is interesting to see how her production has ramped up compared to how Magnus consumption has ramped up. Everything has gone pretty well from that perspective, at this point I think we just need more flanges and we should be in a position to pump without issue. It would be good also for Jess to be able to follow through on the project to make a bra that would allow her to pump hands free.
No matter what comes of this experience it is exciting to think that I have a child and that I am responsible for their care and wellbeing for the rest of my life. It seems like Magnus is developing just fine but even if something were to come up I know that I chose this role for myself at the right time. I actually didn’t think I would enjoy providing the care directly as much as I have been, even changing diapers is still something that’s fun because of how much it benefits Magnus’ comfort. I much prefer to be in the supporting and mentoring role than the one getting all the attention, even if what I am doing in practice looks like leading.
Jess is finding it quite difficult to leave each night despite the obvious need to get home safely, pump more and generally recover from the experience of delivering a baby via emergency, heavily medicated C Section a week ago. I have made an effort to hide / move all of the books and papers referencing idealistic home or natural births to try and make reconciling this somewhat easier. We go back and forth between sadness and excitement, which is normal, but the curve tends to be pretty rocky at least for the first few days it kicks in.
I think it can be quite lonely to be the father and not witness the birth of your child, and then have to spring immediately into supporting your partner in the intensive care unit for her severe health problem while you ferry milk and provide hand hugs to the unwell baby that you just created with that person. It’s chaos for any new parent, but when the mother is debilitated, it is doubly so. The only respite from this is that NICU does most of the actual care, so we can sleep without a crying baby and generally have breaks. This won’t last, and it will get harder again sooner or later, but it does help ease into the new life change this way when it’s needed.
I feel a great deal of love for Jess and Magnus, it feels like we are working on becoming a family after an extremely rocky first week. I know that the next one will be better if we continue to fight.