G-tube and bone marrow biopsy took place on December 29. It was a long exhausting day as well as stay in the hospital. It was far more difficult that I anticipated it to be. Selfishly I missed my best half, Kyle, and celebrated our anniversary and New Year's at the hospital without him while he was at home caring for the twins. Henley experienced more pain that I thought and it took nearly three days to get a smile from our sweet girl. She required a blood transfusion the day after surgery, as her hemoglobin dropped below acceptable range and she was symptomatically anemic as well. The drive home took two days and was uneventful until Bismarck. While filling gas, Henley filled her pants - to the point where we had to get a new car seat in order to safely finish the trip.
Next week we will travel to Sioux Falls to see her gastroenterologist and revise her nutrition plan.
Here's a recent post from our Facebook page that gives some information about the tube.
Henley got a MINI ONE button. This picture shows its placement. You can also see tape over her belly button. They went in through there, laparoscopically- pulled her stomach to her abdominal wall (put in a couple stitches to hold it in place), then placed the tube. I’ll try to post a link showing how the tube stays in place.
Eventually Kyle and I will replace the tube ourselves.
Eventually Kyle and I will replace the tube ourselves.
The role it plays.... right now Henley is by no means dependent on her tube. We feed her by mouth first and then “top her off” or Bolus feed her a little extra (literally a LITTLE extra- 1.3 ounces of 24 calorie fortified breastmilk) and we don’t do this every feeding. Our methods will be re-evaluated as we follow her growth. One thing I’ve learned with Henley is that she feeds less as her hemaglobin drops and chows down like crazy when it’s high after transfusion. So this tube can be a great asset when she’s feeling more worn down.
What I wish I had known months ago:
* i wish doctors would have reassured us that we would use this tube as a tool in Henley’s nutrition. NOT as her sole nutrition.
* we have visited with numerous doctors and one group of doctors strongly discouraged us from ever considering a gtube. This really caused us to fight against it- but during the weeks that passed Henley’s condition nutritionally changed significantly as she began burning through so many calories with her increased crawling, standing and other developmental milestones. Her brain kept developing but she stopped growing in length and in weight. I’ve been a little OCD and weighing at home everyday and quickly identified that something had changed.
* I wish a doctor would have taken the time to explain to us that Henley’s body has to work harder than others because her bone marrow doesn’t do what it’s supposed to. Then we give her gcsf to force it to work even harder than that and push out more cells. She often times breathes faster too and all of this means she uses MORE calories.
Maybe that’s something that you’re just supposed to know - but my brain is so full and constantly spinning, some simple things have to be very clearly communicated to me sometimes.
* i wish doctors would have reassured us that we would use this tube as a tool in Henley’s nutrition. NOT as her sole nutrition.
* we have visited with numerous doctors and one group of doctors strongly discouraged us from ever considering a gtube. This really caused us to fight against it- but during the weeks that passed Henley’s condition nutritionally changed significantly as she began burning through so many calories with her increased crawling, standing and other developmental milestones. Her brain kept developing but she stopped growing in length and in weight. I’ve been a little OCD and weighing at home everyday and quickly identified that something had changed.
* I wish a doctor would have taken the time to explain to us that Henley’s body has to work harder than others because her bone marrow doesn’t do what it’s supposed to. Then we give her gcsf to force it to work even harder than that and push out more cells. She often times breathes faster too and all of this means she uses MORE calories.
Maybe that’s something that you’re just supposed to know - but my brain is so full and constantly spinning, some simple things have to be very clearly communicated to me sometimes.
We are still waiting for results from her bone marrow tests. We are still waiting for her cytogenetics report. This will give us clues about anticipated changes in her marrow that would lead to acute myeloid leukemia.
We know we have made the right decision for Henley because we have given her a tool that will help her fight. She’s already so strong, but she needed this to be stronger. #fightsds #curesds #healinghenley
