This is kind of a part two. You can read about our initial journey from NICU to breastfeeding here. If you don't know how we started this part will make less sense (but probably not that much less if you don't have time to read).
I have been intending to write a follow up for those who are still faithfully following our journey by blog only, because I know there are a few. I've been dropping cryptic little hints and outright laments that feeding has still not been going particularly well and that growing eventually did become a concern on our Facebook page.
All of the spitting/gagging/choking issues that he started out with continued to get worse little by little until eventually he was accounting for an entire load of laundry or more every single day (Kylee started wearing layers so she wouldn't have to go back upstairs and change after he puked on her), he couldn't lay flat under any circumstances, and eventually he started refusing to eat completely. I kept being worried that it was a milk supply problem, but I could pump until the cows came home and take supplements and eat all the right foods and double my supply in a few days, but he just wouldn't (couldn't?) keep it up.
We started investigating reflux meds not long after the last post I wrote and with each med increase/change we saw an improvement in either general demeanor, sleep, and even the projectile puking (which he would sometimes do 3-4 times after a feeding). Nothing, however, improved his eating. I would honestly say that for the last 3 months, every ounce that has gone into him has been a battle of wills (and as a result, the same goes for what little weight gain he has had). Mostly because he will not take more than 1-2 ounces at a time (even nursing I know this is what he's at because we have been keeping a close eye on supply and are still using the hospital grade pump). Anything more he outright refuses or throws it up. There are times when he will nurse for less than 2-3 minutes and then completely refuse to latch on again. The milk is there if I pump, but he just won't latch (yet when he decides to, his latch is perfect and he has good transfer). An entire feeding can be less than 5 minutes even nursing on both sides.
If the minimum acceptable weight gain is 4-7 ounces/week, Tomas has been averaging less than 4 over the entire course of his life (including the first two months before he started refusing to eat). So he is growing, just very very slowly. In a very general sense, I'm not that concerned about a specific size, but when baby refuses to eat much we have to use something to determine how he's doing and weight is a good place to start. In part because while we are trying to figure out how much to supplement we want to strike a balance between too little and too much. If he's eating well and small, he is probably just going to be small. If he's not eating well and small then we want to make sure that small isn't a side effect of the not eating. In all reality, I don't care what he weighs as long as he can eat comfortably.
Our feeding “plan” has been that I always offered breast first and if he either seems unsatisfied or fails to nurse efficiently I offer a 2 oz bottle of either breastmilk or formula (because since he's inconsistent with eating/supplementing I haven't been able to get into any sort of consistent pumping routine). Occasionally he will seem genuinely hungry for more and I will offer an additional 2 oz, but he rarely takes them and when he does he always vomits at least that much or more back up. He can go 3-5 days fully at the breast without any supplementing, but then will have 3-5 days where he needs several bottles. He has had days he acts like he needs/wants more but won’t latch or drink from a bottle.
About a month ago, our clinic decided we should go back to Mayo and see what they thought about his funny little eating patterns, declining weight gain, and reflux issues. I was super unsure about this all things considered but you know what?
Yes, I as the author of this blog just said that.
I was so nervous that they would push more formula on me, but the doctor we saw was just as committed to keeping him on as much breastmilk as possible as I am. She also completely agreed with me (for now) that weight gain (or lack there of) isn't his biggest problem. She agrees with me that if we can figure out how to get him to eat then we probably won't have a weight problem any more. I appreciated her approach, which is to slowly address one potential issue at a time rather than throw the book at him up front. I feel very lucky to have this option, particularly because I know many families do not. As of yet Tomas is still growing (just slowly) and his development has not fallen behind in any way so we have some leeway.
After an entire day (because there is always an entire day I have learned), this is what we know/are doing next.
1. Because she wanted to rule out something structural, we did an Upper GI Xray series which went extremely well. Mostly because Tomas actually agreed to drink the nasty stuff from a bottle. Unofficially everything is structurally ok, but they also want to look closely at the size of his stomach in case that is contributing. That takes a little longer as it's not exactly scientifically standardized and will be more a collaboration of opinions. I expect not much will come of that conversation but at least then we will know. Mostly they were looking for either delayed emptying or a malrotation that could be causing him not to be hungry (thus the refusing to eat). Neither of those two things were seen.
2. We changed his reflux meds to increase the total dose a little bit, but also split it up to spread his coverage out over the day incase he is getting peaks/valleys which are confusing his appetite. While I'm not totally sold on medicating my kids, it is always easier when the provider is upfront about risks/benefits in a way that makes me confident she will be willing to back down if we don't see an improvement and will watch closely for when we can make a change in the other direction.
3. Rather than try to force extra calories in him through additional supplementing or cereal (one of the providers at our clinic suggested this and I was not impressed as he is 1- still shy of 4 months adjusted, 2-everything agrees 6 months adjusted for preemies at least, and 3- I never start with cereal), we are going to increase calories only in the supplementing he is already doing. This will range day to day and will be one more thing for me to manage, but I'm grateful not to have to do it all the time (or to give up breastfeeding) so I will adjust.
4. Back to weekly weight checks. I'm most dreading this, but they are a necessary evil right now I think. The hope is the changed med dose, in combination with a slight increase in calories without forcing supplementation will equal an improvement in eating and weight gain. Problem solved the easy way?!?! Could be.
5. If that's not the case then we will look at other potential issues, specifically allergies (she didn't start here because I tried an elimination diet without results AND she doesn't see signs in his puking/pooping habits that indicate it) and looking to see if there is some sort of internal damage or issue that the X-ray can't see. She really doesn't want to do this I can tell, which makes me feel like I will be able to accept it if she decides it is needed.
After our busy day was over, Tomas was ready for a long nap (see above photo from while we were waiting for his new prescription) and mommy was ready to spoil him a little so we went and bought a new sleeper to grow into.
In all honesty mommy was feeling so pleased with it all that what she wanted was to have a little party to celebrate, but instead settled for a few practical purchases of things that other kids needed. They have certainly given their share of time and sacrifice to helping this boy grow too. Besides, a trip to Walmart with only a sleeping Tomas in tow is kind of like a party anyways, right???
We will save the party for when we start to see forward progress in eating itself!