Can’t seem to stay away

We had another little visit to the hospital last week when Ms. Bug’s GJ tube pulled out. Earlier in the week we had begun the process of transitioning her back to g-tube feeding; we got a second pump and were gradually reducing the j feed and adding to the g feed. On Thursday the GJ came out, and Mommy and Gran put in the regular g-tube and drove Leah up to the hospital (Mama was away all day), where she was admitted in peds. The initial plan was for the GI on call (who knows Leah well and has done some of her dilations) to reinsert the GJ tube Thursday night, but Leah’s primary GI decided this would be a good chance to see whether Leah could tolerate full g-tube feeds. We stayed at the hospital for observation and increased Leah’s g-tube feed 5cc every three hours until she was at full continuous feed. And now she is back to the g-tube! Hurrah!

I think I mentioned previously that Leah caught a little cold last weekend. The good news is that she doesn’t seem to have pneumonia yet. The bad news is that the cold is thickening her secretions and making her gagging and retching much worse. She also developed a bit of an infection in her g-tube stoma, probably around one of the sutures, and the docs put her on antibiotics. On Wednesday night, we had what we might call an epic poopsplosion that reset the scales for epic poopsplosions. Leah was in her jumperoo and Mandy glanced over and noticed that she was awwwwwfully happy. Why was the baby so happy? Well, the antibiotics had caused a giant poopsplosion that had leaked out of her diaper and onto the floor, and Ms. Bug was kicking her feet around in it and having So. Much. Fun. We did not have so much fun cleaning it up, but we were still laughing pretty hysterically through the whole ordeal. Ms. Leah went straight to the bath.

SO – when we got to the hospital on Thursday, we let them know of this incident and they decided they wanted a stool sample since they continued to be loose on Thursday. They sent us home Friday, but on Saturday they called us back to tell us that the sample tested positive for c-diff. Oh boy. We have had a pretty confusing couple of days. They said it wasn’t clear whether she had an actual infection or was just colonized, as many hospital frequent fliers are. I left it up to the GI on call to decide whether or not to treat, and he said she should go forward with the specific antibiotics that kill this bacteria. But her regular GI called me yesterday and told us to stop the antibiotics – he did not feel it was appropriate to treat it at this time because it didn’t sound like a full-blown infection. I guess this strain is particularly resistant to antibiotics, so when you go on antibiotics, the good bacteria get killed and this one can get stronger and take over, causing infection and lots and lots of icky poopsplosions. But the antibiotic can itself cause the same reaction, and that’s what the GI thinks is happening. So he wants to wait a couple of days and see if it clears up on its own before attacking her body with 14 days of strong 4x-a-day antibiotics.

In brighter news, we have started mixing Liquid Hope into Leah’s breast milk feeds. This was a compromise with the doctors because it is very difficult to do blended feeds with a j-tube, and this formula is made completely of whole organic foods. She seems to be tolerating it well! We actually won a case of it in a Facebook drawing by the manufacturer, which is super-awesome and helps us out a lot. The best news is that they are coming out with a pediatric formula, which means we would actually be able to feed it to her without diluting it. Right now there is too much protein so we can only give her a small amount each day. At some point soon we are going to transition her to a fully blended diet, but it will still be nice to have the Liquid Hope pediatric formula when we are out and about and the logistics don’t allow for a blended feed.

I’m working on the next round of photos (LOL – the month of July), but in the mean time, here’s an exciting video. 🙂

3 thoughts on “Can’t seem to stay away

  1. Leah is just too sweet! I’m a NICU nurse in Australia that specialises in complex medical and surgical issues, so I have seen quite a lot of TOF/OA babies (“Oesophageal” in Australia 😉 ). Three of our 20 bubs at the moment have TOF/OA and have all had quite complicated journeys, so I have loved reading all about the beautiful Leah and the challenges you fabulous mama’s have faced with such courage. I finished night shift this morning so I should be sleeping but I couldn’t stop reading every single post you have made! It is so lovely seeing Leah so loved and happy. In our unit at the moment we have a beautiful little Trisomy 21 baby who came to us from one of the Pacific Islands to have cardiac surgery and due to circumstances I am not aware of she is under government care and will be put up for adoption when she recovers. She is just the sweetest baby and reminds me a lot of Leah! Although she has no family, we are all obsessed with her and we give her a lot of loving. I’m not the only one who has expressed a desire to take her home with me!

    I can’t wait to hear more about Leah and watch her grow. Keep up the amazing work and give Leah a cuddle from me 🙂

    • Hi Catherine! Thank you so much for writing. NICU and PICU nurses are our heroes! Wow, three kids at once with (E/O)A/T(E/O)F?? (Haha, that’s a lot of letters.) That’s a lot! If you happen to come across any babies with EA/TEF and Down Syndrome together please feel free to give them this Facebook link: – I created a group for folks whose kids have this combination because it’s pretty uncommon, especially with a long gap, so it can be hard to find other families for support. Awww – I know that little girl in your NICU will find a loving home. Maybe with one of her NICU nurses. 😉

      Thanks so much for following Leah’s story and for everything you do for those babies!

Leave a Reply

Your email address will not be published. Required fields are marked *