It Takes a Village
What a two weeks it has been.
So
Leo gained weight. Praise Jesus! And then....about 10 days ago he started puking a lot more, bottles were not going well. He was not taking as much and taking longer, putting it through the tube wasn't stopping him from spitting it up after. And I think I've said before, his spit ups are--they're not normal. So, it was quite taxing to feed him and try and help him not throw it up. Definitely felt like we took some big steps backwards.
Then on Saturday he woke up with croup. We were able to get him medicine, and after not really sleeping Saturday night, he seemed to be getting better on Sunday. Monday and Tuesday his attitude has only improved. We are so happy to have a happy kid again.
On his one year appointment on Monday, Leo was down one ounce. Honestly, after the last week we'd had, we expected worse. But, we want the GAIN and we want it to be consistent! God knows.
Leo also broke two teeth over the weekend, has continued on the new movement medicine, and tried some new formula. There's so much going on!
And today we went into Philly for our follow ups with the nutritionist and GI doctor. Oh and yesterday we had a video call with neurology.
This update is a really nice way for me to kind of formulate and process where we are at.
So, please pray for his puking/spit ups. If you've been around when it's happened, you know. It's like giving him his whole feed and then watching it come up again. It's very disconcerting with his lack of weight gain. It's not normal and we really want to find out why it's happening. Neurology doesn't think it's a neurological issue (praise God). Nutrition doesn't think it's a nutrition issue. We are all thinking that it's a GI issue. The GI doctor ordered an "upper GI" test today. We were referred for it, but it's not scheduled yet. I believe this will look for obstructions and such in his digestive system down to his stomach.
I don't know if what I'm sharing about it makes sense. But let me explain a little bit.
Feeding Leo is an art. He seems to get bad reflux pukes when his stomach is too full. We feed him formula with oatmeal in it. The thickness helps keep it in his stomach. When we feed him without oatmeal, his pukes are more common. When we use the feeding tube, we cannot put oatmeal in it. The way he moves also affects how he digests his food. We have been advised to hold him up for 30 minutes after feeds to help with the reflux. So, feeding Leo is an art. I set a schedule but it doesn't go perfectly. And if one thing is off, then I may have to adjust something else. I'm trying to balance getting the food in him, it staying in him, and having some time in between that and the next time I have to feed him.
Still don't know if that makes sense, but basically I really want to get some of this figured out because I don't have time for much other than feeding Leo right now. Grocery runs and cooking has been difficult to manage since coming home from the hospital with the feeding tube. I don't think it's always going to be like this, but it's tough to figure out. It takes a village! Thank you to those who gave us meals and helped with basic needs especially since our last hospital stay.
Please also pray for wisdom and clarity when it comes to communicating with doctors. Multiple doctors have said that Leo is "complicated". It would appear that the lion man is! Figuring out what is an issue and what is Leo and how to fix or live with the issue and what Leo needs and also be patient so we can tweak one thing at a time and figure it out is.......
GOD IS IN CONTROL.
This has been a little hard.
I'm all over the place right now. The nutritionist appointment was a very positive experience. She is very good at hearing all of the things going on and figuring out a doable, sustainable plan and getting me what I need. She's just awesome.
Praise also is that neurology said that his movements seem better on this medicine! Prayers as we contemplate upping the dose and just try and figure out what Leo needs.
That's why I share. Cause we got a lot going on and we can't do this ourselves. My mom came with Leo and I on the train into Philly today and we just kept saying, "It takes a village." We are so grateful that she could come with us. An extra little gift that God gave us today. So on a day where we are leaving the house at 6:30am and getting back at 5:30pm, I am not expecting Leo to take his 32oz a day. I did not feed him every three hours. I fed him sporadically and small amounts--whatever I thought he was hungry for and would keep down--and we are not at the end of the day and I believe he will get 30 oz today. WHAT!? God does it, folks. He really does.
Oh. THAT reminds me that Brad and I would also like to incorporate solid foods for Leo, like real foods but that's hard when we go to these people and talk about all of the calories that the special formula has and that he needs more calories. The nutritionist was very receptive to this though. So please can you pray for wisdom when it comes to knowing how much to push the solid foods because that's a little bit more on us and we're ok with that but it's just a lot to figure out.
Again, I'm scattered but I really do think that this gives you an accurate picture of how we're doing right now! Right now Leo is sleeping peacefully at home with the windows open. We are so grateful the God is with us and that warmer weather is coming.
In case you do not recognize my name, I will explain that we were in the same mission in Ecuador as your parents.
ReplyDeleteYour comments about his difficulties with keeping food down made me think of our two sons. (Now that is going back a while as they are both well into the 40s now!)
When our oldest son was born via C/S (two weeks overdue) he constantly spit up large amounts every time I nursed him and he was very fussy and did not sleep well at all. We went to doctors and tried everything we could think of, switching from nursing to different formulas. He was gaining the very minimum that was acceptable so they did not do any further investigations. The doctors told us to keep him upright as much as possible and suggested that he would do much better once he was walking, which was somewhat true.
Then when our second son came along, they did a C/S five days early for medical reasons on my part. He had projectile vomiting from the day we took him home and he lost weight. They discovered that he had pyloric stenosis and had emergency surgery at three weeks of age, to create an opening from the stomach to the small intestine. He healed well and had no further problems at all with taking his food.
One comment by the specialist that stuck with us was that it can be hereditary, but usually happens in the firstborn male. Our purely layman's opinion is that probably our first son had it 'partially' but because he was overdue by two weeks, he had a bit more time to mature that muscle from the stomach to the intestine.
This is just a thought: If Leo has spit up a lot from the very beginning, have they ever looked into partial pyloric stenosis? They did not do that with our first son.
Phyllis C
Hi, we went to college and we're in Ecuador with your parents, too. Pete also had pyloric stenosis and it sounds a lot like what you are describing. But we know that Leo also has a lot of other factors going on. Praying for you!!
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