Thank you for all the love you’ve been sending since Henry was born – we appreciate it so much!! For those who have been asking how Henry is doing, I haven’t been ignoring you – I promise. I just didn’t know how to respond and I didn’t want anyone to worry. Here’s what’s been going on…
Henry had his first doctor appointment when he was four days old. We knew he was a bit jaundiced, but when we left the hospital we were told it was normal and was probably nothing to worry about. Unfortunately, that turned out not to be the case. The doctor told us that he had lost a little more weight than normal since birth, and that his bilirubin levels were pretty high, causing him to be jaundiced so we needed to use a special light to help get his levels down right away. We were told that normally we would be able to go pick up the light and use it at home, but as it was a holiday weekend there were none available except back at the hospital in the NICU. That meant that we were going to have to take Henry and go spend the night there, so we quickly packed a bag and headed over.
When we got checked into the NICU, Henry was immediately placed on top of a bili-blanket and under a bili-light on the warmer (the lights help break down the bilirubin that was causing his jaundice). He had to wear this little mask over his eyes to block out the bright light, and he absolutely hated it. Since he stayed on the blanket while breastfeeding he was supposed to keep the mask on, but he screamed so much that the nurses let us take it off for nursing. At this point his bilirubin level was even higher than it had been earlier that afternoon though, so we were starting to get really worried.
We also knew that Henry was having some slight issues with breastfeeding (he kept falling asleep and stopping) and my milk hadn’t come in yet, so he probably wasn’t getting all the nutrition he needed. We had been told that this was normal and that he would just have to catch up when my milk came in. What I didn’t know is that the body gets rid of bilirubin by peeing and pooping it out. Since Henry wasn’t eating that much, he wasn’t having many dirty diapers, and therefore he wasn’t able to flush the bilirubin out of his system. He also dropped from 7 lbs, 13 oz at birth to 6 lbs, 10 oz, which was pretty scary for us (losing 10% of his birth weight is considered normal, but this was closer to 16%).
So, in addition to the light, we worked with a lactation consultant to figure out how to get the little dude to eat better. Long story short, he gets frustrated very quickly if he doesn’t get milk right away and needs constant “reminders” to keep working for the milk, like stroking his jawline to remind him to suck. This was especially frustrating for me, since there was nothing I could do about it except keep practicing with him until he gets it. Even the lactation consultant said she was stumped and her recommendation was to just keep trying.
On a positive note, what was really nice about our hospital is that they have rooms for parents to stay in while their babies are in the NICU. We basically had a huge hotel room to stay in just down the hall from our little glow worm. I still had to feed Henry every 2 hours,but luckily Geoff was able to get a full 8 hours of sleep, which was great.
The next day around 1:00 they checked his levels again, and we saw a significant improvement! His bilirubin levels went from 20.8 to 14.7, and my milk had come in so he was picking up in the breastfeeding area (he gained an ounce in about 10 hours). The nurses told us that this was great progress, so they took away the light that was shining over Henry and left only the bili-blanket that he was laying on. They said that they wanted to make sure his levels didn’t go up when they took the light away, and if they went down we would be able to take Henry home either with a light of our own or maybe even without one completely.
The nurses had convinced us we would be going home, it was extra devastating when we found out that not only did Henry’s levels go up slightly from 14.7 to 14.9 (meaning we would need to stay another night), but we also found out he was dehydrated and we would need to start supplementing when he nursed. That meant that I either had to start pumping or we would have to use formula, neither of which were ideal because it meant we would have to use bottles. I was already feeling the pressure to get him to breastfeed better, but now I would have to compete with a bottle that allows the milk to come out a lot sooner and faster.
We decided to go the pumping route, but then our nurse clarified that in addition to pumping we would actually have to give him a bottle of formula right away. She explained that the milk I pumped right then wouldn’t be used until the next nursing session and they wanted to get something in him right away. So while Geoff fed Henry his first formula bottle, I sat down to figure out how the heck to use a breast pump.
For those who have not seen one, breast pumps are scary. I mean, they are there to literally suck milk out of you, and it is not fun one bit. I’ll leave it at that, but that night I basically had a breakdown from the stress and being so tired, and the thought of having to pump one more time made me burst into tears. We really didn’t have a choice since I needed to keep up my milk supply, so we started supplementing with pumped breast milk at every feeding.
By 6:00 a.m. the next morning Henry’s levels came back low enough (12.4) to take the blanket off and go home, though we were told we would need to continue to supplement at each feeding until he was able to pee and poop more of the bilirubin out of his system.
Since then our at-home nursing routine is this:
- Nurse Henry (15-45 minutes). If he is eating well without falling asleep I can nurse him until he doesn’t want anymore. If he is having issues we have to stop after about 10-15 minutes of trying so he doesn’t burn more calories than he is taking in.
- Give Henry a bottle (5-10 minutes). This can be either breast milk I pumped at a previous session or a bottle of formula. We let him drink until he is full, which is usually when the milk is gone.
- Pump milk for the next nursing session (up to 30 minutes).
- Wait an hour (or less if he is hungry again) and do it all over again.
With all of that and prep/cleaning up time, I am spending about two hours on each nursing session. Then I get an hour off, and then I have to start up again. And that’s if Henry isn’t hungry again before that. That means I get to sleep for an hour at a time if I’m lucky. It is exhausting. At least he is having lots of dirty diapers so we know he’s not as dehydrated anymore and is flushing at least some of the bilirubin from his system.
Part of the deal for leaving the NICU was that Henry had to go to the doctor again the following day to make sure his levels were continuing to drop. The nurse called us fairly quickly after his appointment and we were not happy to find out that his bilirubin level was back up to 14.2. She said there still weren’t any bili-lights available, but that some were expected to come in later that day and she would try to track one down for us. In the meantime she told us to put Henry in the sun as much as possible, since the sun acts almost like the bili-light.
This wasn’t the news we wanted, but at least they didn’t tell us to go back to the NICU. Unfortunately, they were unable to find us a bili-light after all, so we had to unwrap poor little Henry from his blankets and hold him basically naked in the sun to get that light exposure.
We took him back to the doctor yesterday for another blood test, and this time his weight was up to 7 lbs, 1 oz, and his bilirubin levels had dropped by 1 point to 13.2. Still not ideal, but enough of a drop that the nurses told us to just keep doing what we are doing for today and come in for a (hopefully final) blood test tomorrow. That means little Henry gets a day off of going to the doctor for the second time in his life! Yay!
I’ll post updates as we receive more information, but we probably won’t know anything more until late Thursday. Please cross your fingers for him that his levels are normal by then!