Day +90 All About the Eating
Zoe’s clinic visit yesterday went well overall. We have been sweating bullets about her eating after “threats” that she would go back on TPN if her intake did not increase and her weight kept dropping. Legitimate concern, I suppose, as Zoe had lost about two and a half pounds. She did have a little extra to spare, and I definitely felt that the extra pounds were protective for her.
I had no idea that her eating was going to be such a stressor! If you think about it, though, she’s had a lot of work to do to get to a normal place of consumption. She pretty much exclusively nursed for five months, then was on TPN while she healed from mucouscitis, then never resumed nursing. So, that left us with having to introduce drinking from a bottle and a cup as well as eating in close proximity.
We tried a bottle, a sippy cup and a cutaway cup for drinking. We tried rice cereal, sweet potatoes, bananas, teething crackers, formula and Pedialyte for nutrition. You get my drift, I’m sure. She was on the Introduction to Solids FastTrack! Of course, we tried this in moderation, introducing about one to two new items per week.
After weeks of working on this, she is sucking down two ounces in a sitting, a considerable improvement over the half ounce to ounce she was intaking recently. She is having her meals about sixteen times per day out of necessity, as we have been trying to avoid dehydration and further weight loss. The docs kept telling us Zoe needed to drink 20 ounces per day to stay hydrated and more than that to maintain her weight. Getting her to drink 20 ounces had really been a challenge!
Zoe has been gradually improving that intake level and has been eating about an ounce and a half of solids, most recently, bananas, daily. Her latest favorite food is toasted bread sticks because she can feed herself, which she is pretty pleased about. She also likes to feed herself with the spoon. Can you blame her after all the med syringes that have been put in her mouth?
The good news is that her weight is holding steady at 7.7 kilograms, about 17 pounds. She is in the twenty-seventh percentile for her weight where at one time she was in the 98th. Her peak weight was around 19 pounds. Maya has always been a string bean, so we are not completely alarmed that Zoe may tend to be on the slimmer side.
Where did all of her weight go? I’m sure she has lost about a pound in each cheek. Have you noticed her eyes are bigger now that her cheeks have gone down?
Regarding her counts and chemistries, Zoe’s magnesium has been a little on the low side, probably due to the Tacrolimus she takes. She is taking a magnesium supplement for this. Too bad bananas weren’t a great source of potassium and magnesium, because then she would have it covered!
Zoe’s platelet and red blood cell counts have been in normal range consistently for weeks now. Once the white blood cells are producing well and sticking around she will be doing great.
Other news items: we are scheduled to have her lines out on the 6th of October. Replacing them will be a port-a-cath access placed under her skin. That will surely be a happy day. IV med pushes, pump drips, TPN, home blood draws, cap changes and home sterile dressing changes will all will be a thing of the past. No more worries about crossing lines and exploding babies!
Losing those three appendages that have been attached to her since March and May respectively? That will be a day to celebrate!
One thought on “Day +90 All About the Eating”
We are so pleased with todays news.sounds like Zoe is right on track for a full recovery. The Oct.6 date is already on our calender and we will be looking forward to it. hope Maya id doing well. I know everyone is looking forward to going home finally. Love to all Nannie
Well it seems things are moving in the right direction and fairly fast GREAT!! We look forward to the normal days that are coming soon. It’s been a long a difficult journey but there is a light at the end of the tunnel and we are looking forward to that. Love to all, John