Roger had his turn inserting the NG tube today and did a great job. We had the same nurse that encouraged me earlier today and she was equally encouraging of Roger. She told us we worked well together as a team. (This is definitely a two-person job for the novices!) I am hoping and praying that the tube stays put! Eliana is wiggly when she is awake so we'll see.
We stayed at the hospital for Eliana's 3pm feeding. Tried out the pump that we were taking home and had some problems with it - cut off too soon and didn't administer the current dose. I had a nurse help me in getting the remainder of the formula in and we wondered if the problem was the bag we had used. It was one that we used with the hospital pump which was slightly different from this one (more updated model).
We had 2 hours to get home before the next feeding was due. By the time we packed, left the hospital and drove home, we had about 30 minutes to get settled and set up the pump and supplies. I tried feeding Eliana from a bottle first. She did a great job and drank about 30 ml in 15 minutes.
Then we tried the pump. I flooded the chamber on the first bag and didn't know how to fix it. Then I tried the second bag and just after I primed the pump and got it ready, it said "dose delivered". She had gotten nothing! I tried everything I could think of to fix it - no luck. Roger called the company and got the person on call. He agreed to drive over to our house to help us. He needed to first drive by the company to pick up another pump so it wasn't going to be a quick visit - not in time for her feeding.
We tried again with a bottle and she drank 60ml. She did a great job! i was a little worried about feeding her without the pump. It takes soooo much from her - just wears her out. One of the nurses said it's like one of us running a long distance race. When it takes her a long time to eat, she burns as many or more calories than she is ingesting.
Two men from the medical supply company came over to help us. They even needed to call someone else about the problem. They ended up not being able to get the pump to work correctly and gave us a new/different one. They were very nice and very helpful. I was so thankful that they were willing to come out after hours to help us out. One of the men told us it was because she was an infant that they were willing to come so quickly. Thank God for this as I don't think I could have felt comfortable about waiting until morning.
The next feeding went well. She took some by bottle and then fell asleep. We finished the feeding with the pump. I'm glad that she can get the calories she needs with the pump. It wasn't something i wanted to do, but I know that it is the best option for her right now. We did all that we could to help her eat and she just needs this help.
Each week is a matter of waiting and seeing how she is doing. We are hoping that she responds well to the feeding tube and is able to gain weight. We are also hoping this doesn't place too much stress on her heart. We won't know until it happens.
I'm still working on pumping. I've been told we can try nursing again if she/we want to. Since she is getting the calories she needs from the tube, this is an option for us. I'm not sure yet what we'll do. I'm still debating about this. I would love prayers for wisdom and peace about the decision. The lactation consultant recommended pumping over the week-end and seeing if the lessened stress of feeding helped any. I can reevaluate after that.
It's late and I need to get some sleep. I appreciate your prayers, notes and encouragment! Will write more tomorrow as I'm able about the tentative timeline for surgery and what we know (and don't know) about the plans for the future.
Love,
Leslie
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