Unfortunately, at midnight Saturday night, Keith noticed that Kiera's NG tube was leaking. The leak wasn't too bad so I thought that the tube could be changed in the morning. My turn to feed Kiera was at 3:00 am and the leak was much worse. Most of what I was feeding Kiera was making it to her stomach, but the tube had to come out. I pulled out the tube while Kiera was sleeping and she didn't seem too bothered by that.
On Sunday, we thought we would give Kiera some time without the NG tube. She was given 6 hours to prove to us that she could take in as much from the bottle as we were giving her through the tube. Our hopes were dashed and a new NG tube had to go in. I thought it might be good for Keith to experience NG tube insertion so I trained him on the procedure. He had little luck getting the tube in and so it was my responsibility to get it in. I failed several times. On two occasions, I did not believe that the tube was in the stomach - the first time, Kiera was crying so loudly that I couldn't determine if I was successful. I pulled the tube out. On the second attempt, I was convinced that the tube entered Kiera's lungs -- she didn't make a sound. After some tears and a phone call to my sister-in-law (a nurse) for support, I gathered my courage and attempted a third reinsertion. The tube went in and I secured it with tape. There is only one positive thing about the NG tube -- when Kiera has gas pains due to air in the stomach, we can pull it all out with a syringe (Kiera does not burp, no matter what we try to do and certain positions worsen her gastric reflux).
Tube reinsertion days are extremely emotional. I end up feeling very sorry for myself and very impatient with this whole process. Usually by the next day, I feel okay again and I feel ready for another week of parenting a tube-fed baby. However, these past few days have been rather trying as Kiera is back to consuming only 27-38% of her feeds orally. This setback is likely due to the trauma of tube changing which causes some discomfort for her, which in turn creates a mucous problem for her that is only resolved after several days of gagging and spitting up.
This is our new normal.
5 comments:
Same Bat station, same Bat channel? Maybe you're too young. :) Love, Cheryl W.
I'm not too young, Cheryl. I grew up watching those reruns. Everyday is a bit of a re-run in our household these days.
Hang in there Brenda, God will never give us more then we can handle. I'm sure it feels like to much but He is there for you. I will continue to remember you in Prayer. Be strong.
Hugs and love sent your way.
I've known several people with special needs babies. Raising a "normal" baby is stressful, raising a special needs baby is double and triple the challenge. None of those people I mentioned ever stopped trying, but there were times they felt overwhelmed and inadequate. Shoot, I think ALL parents feel overwhelmed and inadequate at SOME point. Special needs parents just get to visit that point much more regularly. Hopefully, you have a support group that has a similar special needs baby that you can compare notes with and lean on a little. I know that I can listen and try to understand, but only someone who has lived it or is living it can empathize and say, "I've been there, this is what I did that helped. You will survive this because I have." I pray for you, your extended family and friends that do their best to support you as best they can. Love and hugs, Cheryl W.
Oh my goodness Brenda! I feel sorry for you too!
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