I'll try to make this as short as I can.
DS3 is now a year old. He was born with imperforate anus and has a colostomy. From birth to 6 months, we had no issues. At 6 months, after the introduction of solid foods, he started to have issues with weight gain and strange "noises I could hear coming from his tummy" later found to be bowel sounds from his very distended colon.
He was taking little in the way of solids and his bowel movements were frequent, small amounts, with the occasional larger one, wet diaper output normal. So....other than the noises, which his doctors dismissed, nothing glaringly abnormal for a breastfed baby.
So we try making sure we are giving high-fat solids and I make sure I'm offering plenty of opportunities to nurse. At first, it appeared to work--he gained ELEVEN ounces in two weeks! But...6 weeks later, when I returned for a weight check, he had not gained. 2 weeks after that, he actually had lost 2 ounces. And gradually, he got worse about taking solid foods. What I did not know is his nursing intake also dropped. I did notice a bit of a drop in number of wet diapers, but didn't think much of it, and it was not a huge drop, he was still on the low end of normal.
So, we get a referral to a pedi GI---a very not nursing friendly GI. From the moment I walked into his office, his stance has been that he's "had enough of that"
BUT the important part of this story is---after some tests, we were admitted, given a feeding tube, sent home, readmitted due to bad labs. We spent a MONTH here in the hospital that time. Shortly into that stay, it became obvious that he could not tolerate *anything*--by this point, even 5 cc's an hour via feeding tube is causing his tummy to bloat up and his little bellybutton looked like it was about to pop. like those turkey timers. At that point, I also stopped nursing. It was obvious it didn't matter, he could not tolerate ANYTHING.
He eventually spent probably over a week, I didn't count days, on TPN--IV nutrition through a central IV line. Our hope was that rest, antibiotics for the infection in his colon, and cleanout via a catheter into his colostomy would be enough to help him. Then we SLOWLY worked up to him tolerating 'full feeds' 40 cc's an hour via NJ tube.
I pumped that entire time. When we went home, we'd been nursing 4 days. We started some solid food Sunday night, went home Tuesday. The other thing that changed was that we stopped giving him his laxative.
Tuesday night, I end up running some frozen BM through his feeding tube because I ran out of Elecare.
Wednesday night/early Thursday morning, he was VERY VERY distended again. His bowel movements were small amounts. The noises were starting to come back. We spent the next 10 days on the phone with doctors, in offices, adjusting different things. Had some vomiting...did as directed with leaving him off the tube, on with pedialyte, on at a slower rate, etc etc.
Finally the next Monday--two weeks after our release, we were readmitted to do some more colon cleanout. He had surgery the day before Thanksgiving to make his colostomy larger. He also had a G-J feeding tube put in, it will not be a button for a few weeks. We need to decide if we are doing a G or J button. (Feedings are now into his small bowel, the J, and we are starting a bit of oral feeding to test his tummy.)
He's tolerating his full feeds, Elecare through his new tube.
I've been told to wait another week to introduce nursing again, if I want to. At this point, I am barely pumping anything. We are also about to go home, where I have 3 other children who have missed me like crazy.
My pedi is EXTREMELY breastfeeding friendly, and even he has said it is possible that these infections have affected his ability to digest foods.
But I keep looking back at his life, and I see that the change took place when we introduced solids.
But I also see that he has had major problems, and things might have changed. He's had 2 different bacterial overgrowths. He's been on Bactrim, switched to Flagyl, rocephin, vancomycin, and another oral one after that, don't recall the name.
And I do see that when we were home, we started to have problems. Yet, that might have happened no matter *what* we did, because he had/has a bowel problem that the current surgery appears to have resolved.
There's no way to answer if it was the nursing or not. I have 2 other children who weaned at about 2 years old. (the oldest did not nurse, did not have proper support)
I'm incredibly sad that he's only a year old and we'll be done if we go home....I just cannot keep up a pumping schedule and the needs of my other kids and family---that is a mistake I made with my first. My pedi commends me for making it farther than 95% of people, yet he understands--because the crowd of people I run with, I'd say 95% of THEM are also patients of his, and maybe 5% of THEM wean at a year, the rest go longer.
What can I do? If I were to say, hand express in the shower once a day and maintain *any* flow, would it increase again when he's allowed in a week?
Maybe the question of whether or not to nurse is one best left to me and DH. Maybe what I need is just some support for the grief because I mean, this is what we do. It is how he goes to bed. I never took a picture of the way he'll pop off and smile sometimes. We had a moment in a Subway booth after the last hospitalization that made all of it SO WORTH IT--we took a nursing break and he did one of those pop-off smiles and I cried a few happy tears...made every minute of the pumping and all that worth it.
but then we did end up back here. My pedi says there are a few kids that live on Elecare feeding tubes for a few months or a year and then eventually take to other food. don't know if that will be him or not.
I guess the one thing about not nursing is he is a year old...he got a year. And if I were to say screw it all and just nurse him when we go home--which is TEMPTING--if something DID happen, well, I would never know if it was going to happen anyway or if it was caused because something inside his intestines has changed and it has affected his ability to digest something in my milk. That is what I would blame *something* in my milk like maybe dairy protein or something. I could do an elimination in the hope of letting him nurse next week, but what if I didn't eliminate the right thing, or if it was entirely unnecessary? then it's a lot of stress for nothing. Anyway, I would feel guilty if something did happen.
It feels wrong to wean him for the simple fact that then we absolutely know it's not the breastfeeding, because we're not just taking away a form of nutrition, it is his comfort. It's got antibodies and all sorts of good things for him. And he *should* be nursing in my mind. But...there's always that question, and it's been painful on both of us to wean twice during these 2 hospitalizations. I know that if I were to begin nursing again and something happened, we'd have to wean again. But it might not happen again too. We *might* have solved the problem. But if I start again, and something happens, then I have to put him through weaning again. HE does not understand why this is...HE paws at my shirt and is unhappy. I mean not now so much but both times at first, it was really hard. AND if there's a problem, then we've put him through that physical pain.
This is hard....but maybe I need to accept it. I know it's ME he's attached to and loves, not just my chest and nursing. I KNOW I'm still his mama. It's just that it's not my choice.
