Our first month started out a little rough, not because Max was a bad baby or poor sleeper, but because we got a call from the on call resident at Mayo with a positive newborn screen result. I will say that being on the other end of that phone was a lot more difficult than I ever imagined. I was able to keep myself together while on the phone, but then fell apart once I hung up. I kept telling myself, "Margaret this isn't all that bad." I kept thinking to myself about all the kids I'd taken care of who had much worse inherited conditions and needed things like liver transplants, but nonetheless the mom hat overpowered the doctor hat and I was emotional about it for days. I didn't even want to talk to my parents about it just because it made me so upset. During that phone call it didn't help that the resident said to take him to the ED immediately if he didn't eat or started throwing up and told me that they'd already arranged for me to see the geneticist at Mayo the next morning at 8:00. All of that just added to my anxiety. Our pediatrician was so nice and called us at 8:00 that night to be sure we knew about the results and knew we had options on where to take Max.
Turns out, the diagnosis remains unclear as Max doesn't have a full blown genetic mutation, but regardless they want us to treat him like he does. Basically he doesn't metabolize short chain fats at 100% so he has to eat more frequently to ensure that everything gets all of the energy it needs (in simple terms, for my medically inclined friends, it is SCAD deficiency [short chain acyl Co-A dehydrogenase deficiency]). The frustrating thing is that only 31 states test for it and they still don't know the clinical significance and even stated that he would likely never develop any symptoms. Right now, it means that he can't "fast" so for at least one more month I have to wake him up every 4 hours to eat and take him to the ED if he ever gets a GI bug and can't hold anything down. The feeding schedules spreads out as he gets a bit older, thank goodness, but I just know that Max would have been sleeping through the night within his first 6 weeks if it weren't for us needing to feed him on this schedule!
All this newborn screen experience has really taught me a lot as a physician, as has just being a mom. I will be sure to be as informed as possible when trying to explain things to parents over the phone and reassure them that it is in fact only a screening, not a diagnosis, and needs further work-up. Many of these diseases tested for on newborn screen are complex and go all the way back to biochemistry, but I will try to do my best! We are just grateful that Max's mutation isn't as serious as it could be and for right now I will continue to sacrifice sleep even though we don't know if he really needs to eat as scheduled. I get to spread out his feeding schedule to 6 hours maximum fasting at 3 months, so hopefully I will be able to get at least 5 hours of continuous sleep at night before starting back to work.
Other great things about Max's first month were all the visitors and just getting to know his personality and watch him grow. He did have a follow-up with the geneticist at almost 1 month (26 days) and he weighed 4.4 kg or 9.7 pounds up from about 3.5 kg at birth. He was 20.7 inches long up from 20 inches at birth, so our little guy did a lot of growing his first month (probably due to having to eat every 3 hours, which is what the feeding schedule was before the follow-up appointment).
We are exclusively breastfeeding, which is going well and for which I am grateful. At his weight check at about 9 days of life he had already exceeded his birth weight and weighed in at 7#13oz. For the first 2 weeks, we just let Max sleep when he wanted and were sure to feed him every 2 hours during the day (once we got the results of the screen) and every 3 hours at night. We were able to spread this out to every 3 hours during day and night once we saw the geneticist for the initial visit. When my older sister came to town, she got Max on a schedule, which was so nice! He had been taking all of his naps in his newborn sleeper (thanks Hannah) and sleeping in his crib at night, but Mary E. had us put him in his crib for all of his naps. This was hard to do, but I was really grateful because it allowed me to be productive during the day. We started eat-play-sleep cycles at 1,4,7,10 am and pm. All of this continued until Max was 26 days old and we had a follow-up visit with the geneticist who said Max could "fast" for a Max of 4 hours, so then we switched to a 2am and 6 am feeding schedule.
Other notable things in Max's first month: We switched from newborn diapers to Size 1 at about 2.5 weeks. He was able to wear newborn clothes, but quickly grew out of those around the end of month one (although I still squeezed him into a few afterward, but you could tell that he was stretching them out). He has always been a strong fella and has good head control for a baby his age. Two of my favorite things he did during the first month were 1) nuzzle into my neck when he was working so hard to hold his head up and 2) how he ALWAYS straightened his legs out with each diaper change--it made it a little easier. I loved holding him up with just one hand supporting his bottom and loved how tiny he seemed, although he really wasn't ever THAT small!
I need to come up with a better "template" to mark these month milestones--maybe I will get the hang of it soon. Here are some pics of Max's first month. Month 2 post coming soon!
First bath at home.
He loved his newborn sleeper!
This was one of my favorite newborn outfits. Max made a lot of his doctor visits in this outfit. haha! thanks Mary E. for letting us borrow it!
Max's first bottle. We waited probably until he was just over 3 weeks old to introduce a bottle. Marc gave him his first bottle and he took it really well, however we now somewhat struggle with bottles. We are working on it though! It just went downhill after the first 3, but now is getting better!
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