Today is day 30.
30 days of Carolena being free of the feeding pump.
30 days of minimal vomiting.
30 days of no overnight pump feeds.
30 days ago I reached my absolute breaking point. I was fed up, frustrated and just completely over C's vomiting, the problems we were having with getting her liquid food (Vital Jr.), the pump feeds, the overnight pump feeds (where cords get wrapped around necks, med ports blow open leaving fluid to go all over the place and 2:30am vomiting), and C's total lack of tolerating any food at all.
I follow the journey of several other HLHS children, one who is a true warrior. I first started reading his family's carepage when I first found out about C. I poured over all the entries in the journal. Looking, no searching, for how to put this new existence together. I found such strength in this family and this child, I just knew we could do this journey as well. Two months ago, I noticed a post from this family speaking of the diet they use for their child. I was curious about the diet, having read their entire story I knew this child had struggled and suffered many (and more) of the same things C was dealing with. The reflux, the vomiting, the lack of eating or drinking, you name it and C's issues where very similar. So I asked this mom what diet she uses as her child was doing so well, so well in fact that the child was no longer using any GI meds at all and many of his GI issues have been resolved.
This very kind mom took the time to email me back and described in detail the very diet she uses with her child. For the very first time, I felt there may be some hope of us and C. I can not even describe how grateful I am that this mom took the time to chat with me by email, offering support and even more importantly, the knowledge of having been there and done that.
I made the decision (after speaking with Kevin, C's therapy team and C's 6th, yes 6th, GI doctor) to try this new diet.
I was scared.
I could say I was nervous or unsure, and yes I was, but mostly, I was scared.
C has never tolerated change in her diet. Her body just does not seem to adapt well, she eventually levels out but it takes a long time to get there, with lots of vomiting which puts me on edge because she can still aspirate. Plus, I was not ready to give up all hope that something may help her. All along we have heard that when C reaches this milestone or starts doing this particular thing she will be better, her reflux will be better, her vomiting will decrease or stop...but so far nothing. Not one thing has made the difference.
Putting all that aside, we finally made the change from her liquid diet to the blenderized diet.
And of course C did not tolerate the diet at all. She vomited for 72 hours straight. And not just once here or there, she vomited every couple of hours, every single feed, every single thing that went down came right back up. It was awful and horrible and C was exhausted. By day 4 I was in tears and so down that I almost quit the diet. But, I decided to go for broke. I originally started the new diet by trying to faze in the new diet while slowly fazing out the old. That did not work...at all.
Day 5 came and I was more determined than ever to give this diet a chance. I wanted C off the liquid feeds, I wanted her on a more normal diet and I wanted her off the overnight feeds. I switched her completely over to the new diet and stuck it out. The next few days C showed a small amount of improvement, not enough to convince me, but we kept going because she was not getting the overnight feeds and I was so adamant about not going back to overnight feeds. Days 6-10 were okay. Day 14 and C turned the corner. Even now I am still amazed. I still have trepidation about this new diet but I am slowly beginning to believe this may work for C.
Day 30 and she is happy, active, seems to be gaining weight (definitely not losing it) and is acting her normal self. She is pump free and loving it. Better yet, she is no longer on overnight feeds and even better her vomiting is way reduced and is even predictable (down to once a day, in the morning, first feed of the day) and there is hope she will stop vomiting all together). I keep waiting for the down side. I keep wondering about her weight, is she gaining enough. I keep wondering if we are messing up the delicate balance in her system, is she getting too much fluid, too much of this or not enough of that vitamin or mineral. I keep wondering what will happen if this diet shows for some reason it does not work. We have all been enjoying the positive side effects of this new diet and I do not want to have to go back to the way it was.
The blenderized diet that I follow for C is the one that I received from the mom I mentioned above. She received the diet after contacting and working with the Cincinnati Motility Clinic. She could not say enough good things about this diet and the way is has helped her child. The only alteration I have made as far as what goes in is that I boost C's caloric intake to around 900 calories with an additional tbsp of oil and an addition of 1 tbsp Scandical (calorie booster). Otherwise, I follow this diet exactly.
The Blenderized Diet
6 tbsp dry cereal (oatmeal works for C)
3 tbsp corn starch (thickening agent)
2 tbsp oil (any kind, but I use Avocado oil)
1 tbsp Scandical (calorie boost)
1/4 tsp salt
4 oz formula (we use Elecare, eliminating any milk allergy risk)
1 4oz jar high calorie baby food (100 calories or above)
1 4oz jar high in Vitamin A baby food (over 100%, such as carrots, squash, sweet potatoes)
1 4oz jar high in Vitamin C baby food (at least 45%, such as apples, pears, peaches)
1 2oz jar baby food meat
Mix it all together and break into 5 feeds. We do our feeds as such: 7am - 3oz, 11am - 4oz, 3pm - 4oz, 6:30pm - 4oz, 9:30pm - whatever is left). I do each as a 30ml bolus feed, waiting a couple minutes in between each 30ml bolus feed for a total feed time of approx 20 minutes. My mix usually makes around 16-17 ounces of food. Each food feed is followed one hour later (after feed is completed) with 120ml or 4 ounces of liquid (with total liquid intake being 600ml or 20 ounces, I use a half/half mix of Mott's for Tots Apple Juice and Gatorade).
This diet is a super thick, gruel type consistency, g feeding tube diet. The diet is suppossed to be super thick so not mixing the liquid and food is crucial to success. C still does not eat or drink anything by mouth but she is trying and is liking it better now that we are teaching her that food and drink is not her enemy. Once she knows food and drinks do not hurt her tummy and she will not vomit I am really hoping she will catch on to the eating and drinking thing. As long as this diet works for her, I am happy with her just trying food, keeping her feeding tube and getting her nutrition that way. I do not want to go back to forcing her to eat, or feeding her 12 times a day or pump feeds. I want her to learn that eating is fun and food is yummy, not just something she has to do to survive. Other positive side effects have been consistently more wet diapers and although she still takes Miralax every day for constipation, etc., her bm diapers are much more normal as well.
I think we have finally found something that works for C. I will know for sure once we see GI and cardiology again. I am keeping everything crossed and praying like crazy that we can return her feeding pump once and for all and that we have finally stumbled upon the first step to getting her eating and drinking for real.