Well Jill’s feeding tube swap procedure that happened at the end of February went well. She now has what is called a “button” feeding tube which is just above her belly button. The hardest part about the whole thing was just going to the hospital again. Mentally, I don’t think we were ready to go through everything again. It was kind of déjà vu. We had the same lady do our intake papers. Then it was the same nurse’s aide that checked us in at pre-op. (In fact, we have now had him three times…endoscopy procedure in December, major surgery in January, and tube swap in February).
We kept running into other staff members that remembered us as well. Then we had to wait in the same surgery waiting area. At least the procedure itself only took about 30 minutes versus the nearly 7 hour wait at the end of January. It was a little overwhelming learning how to use the new feeding tube. We had a three minute tutorial from the surgeon. Then we went home and had to figure out what we were doing.
Jill’s care really is complicated right now. It is just impossible to consider leaving her with anyone. A few days ago we just added another medicine to the regimen. She now has two medicines that are given 4 times a day and two other medicines that are given once a day. In addition, to other medicine like Tylenol and Ibuprofen that is just given as needed. She was doing really well with eating. She was probably taking over 70% of her daytime formula feeds from the bottle. But now she isn’t feeling that good (her nose is a little runny and last night she had a fever of 102.7). Unfortunately, everyone in the house is sick right now. Katelyn and I have bad coughs. And Bryan is having sore throat/tonsil issues. We are trying hard not to pass on our germs to Jill. Being sick drastically affects her eating. She has hardly taken any bottles from us in the past week. I’m glad she is on the feeding tube because drinking one ounce of formula and a spoonful of pears isn’t a good recipe for growth. But thankfully, even though her eating has been poor lately, she has gained a full pound since her last weight check (it must have been the avocadoes she ate on our recent trip to California).
Yes, that’s right, we went to California. It was our first time leaving the state in a year and a half. It really was a major event for us when we crossed over the Idaho state border into Oregon on the drive to California. The girls did really well on the trip. We had a great time seeing friends and family. We attended a family wedding while there. And Katelyn was able to celebrate her 3rd birthday with a party at her grandparent’s house.
I have felt a little sad for Katelyn this past year. Things have been so chaotic with Jill that she has often had to play on her own and spend probably too much time watching cartoons like Caillou and Clifford. But considering everything, she has adjusted really well and loves her little sister. She constantly kisses her feet, arms, head, etc. Katelyn amuses us with her growing vocabulary and grammar usage. Instead of saying “I am” she says “my” (“my chewing,” “my thirsty,” etc.) She organizes our shoe rack at least three times a day. She loves matching colors. The other day I asked her what color of sippy cup she wanted. She first looked at what she was wearing to make sure her cup would match her outfit. She loves playing with her dolls. Her first doll, “Molly Dolly,” now has two sisters and a step-sister. She also loves playing with her tea party and cooking set. And she remembers lots of random details (e.g. Jill wore that outfit to Costco yesterday). Everything in the past is “yesterday.”
Well some other thoughts….I have had some interesting conversations in the past couple of weeks. I went to get my hair cut from a new person. I wasn’t going to mention Jill’s story, but it just kind of came up toward the end of the appointment. The hair dresser stopped what she was doing and opened up her wallet to show me a picture of a toddler. She went on to tell me her friend’s daughter’s story. Apparently she was in the hospital for nearly a year with many different health issues. She said it took her months to get enough courage to see the baby. She would go to the Newborn Intensive Care Unit (NICU), scrub in, walk to the baby’s room, then break down in tears and go home. Finally, she said she just had to walk through the door. But after that it was amazing hearing how involved she became in the child’s life. Unfortunately, her friend’s daughter died at age 4 ½, but I think her life really impacted the lady. It is amazing how when you experience children’s health issues firsthand how it completely changes your perspective and response.
Another conversation happened during our trip to California. We were talking to a friend of ours who is an OBGYN. We were curious to know if she had encountered any CDH cases. Unfortunately, in the only two cases she knew about the parents decided to terminate the pregnancy. Then she went on to tell us about how much genetic testing goes on. And how many parents seem to be looking for the perfect child. The whole thing is really upsetting to me. Over and over again, I’m glad Jill was given to us. Sometimes her care can be tiring, but her smiles and laughter would melt any heart. And hopefully, she will have a really healthy and happy childhood and adulthood. We told our OBGYN friend to please give our name to any patients with CDH pregnancies. We were given hope by other CDH parents and we want to continue to give out hope to others in similar circumstances.
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