Monday, April 7, 2008

Update from the BPD Visit - I feel a little disappointed!

Well, the BPD visit did not go how I had expected or how I had hoped. Kathryn is definitely impressing the BPD team with her alertness and her over appearance and attitude, but not with her numbers. Her weight today was 9 pounds, 6 ounces. Overall, still a weight gain, but not as much as they would have liked. She was gaining before at an average of 28 - 30 grams a day which is close to an ounce a day. This time she has slowed to about 18 -20 grams a day about 2/3 or so what she was gaining before. In the last two weeks, she has only gained 4 ounces. This was definitely disappointing news because she looks like she is gaining better than what she is! Also disappointing because I was hoping that they would consider changing her formula and maybe discontinuing the MCT Oil. Well, they changed her formula, but they are now making it more calories, plus adding 1 ml of MCT Oil to her rice cereal and also increasing her feeds to 1/2 ounce more per bottle.

The only medicine change was to increase her Diuril (a diuretic). Apparently she had outgrown her dosage. I was also disappointed by this because I thought she was eventually supposed to outgrow her dosage, so I didn't quite understand why they increased the dosage.

The oxygen is also going to stay the same for right now. I asked about weening to 1 1/2 liters after seeing how well she did on that level on an oxygen tank, but Dr. Lozano said that this is just the difference between a tank and a concentrator and that he doesn't want to ween yet. He says he wants her to be more stable for a little while longer before he makes any changes.

I guess its a good sign that he doesn't want to follow up in 4 weeks again, we got pushed back to 8 weeks. So, that's an accomplishment, but I guess I had hoped for bigger changes!! I know it will come with time, but I am ready for it!! So we have a specific prayer for the next two months - BIG weight gains and continued stability!!!!!

On a light note, Kathryn had her blood drawn today for a hematocrit level and a test of her electrolytes since she is on diuretics and she did not even cry when she they put the butterfly needle in to draw the bloodwork. What a champ!! Now if mom could just get past her petty disappointments!! Thanks for letting me vent. I think we all want our children to excel and be healthy!! I want that quite a lot and I guess I need to realize that it will happen with time and it may not necessarily happen when I want it to!! God is in control and has placed his hand on Kathryn thus far and I know that he will continue to do so!! I need to pray for patience for myself!

Faithfully, Kelly


Kate said...

I am so sorry for your disappointment! I know that feeling. It reminds me of when Aiden was in the hospital and we were so close to the end of the road. He only needed to gain one or two more ounces to come home. They waited to weigh him until we got there so that we could all celebrate and rejoice together. Well, the little bugger did not cooperate and actually lost 2 ounces. I was devastated, I completely lost it. I stormed out of the NICU completely inconsolable (like it was THEIR fault he didn't gain weight!!) Two days later he was able to come home, but that feeling of just knowing he was doing so well and finding out that he "didn't make weight," was just so crushing.

We will keep praying! Hopefully she will be a fat, roly poly, butterball at your next visit!!!

Andrew and Lauren Hess said...

Sounds like we are having some of the same problems! Only thing is Carson is choosing not to eat. We as parents just have to sit back and deal with it and it is so frustrating. These little stinkers have their own plans but they have proven themselves to be fighters. We'll say our prayers for weight gain for you guys as well!

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