This is pretty bad and I don't think we will get away from another visit downtown. I know Hope had the stomach bug...we all had it and spent at least 2 days throwing up. It just really upsets me that she went down in weight again this time. In a month, she has lost .25 kilograms. That is 8.82 ounces or 1/2 a pound...in a month. It may not sound like a lot, but it is a big weight loss for someone that only weighs 22 pounds...especially when that little person should weigh almost 30 pounds. It also depresses me because we try so hard to make sure she eats as much as possible...and then pray that she won't throw it up. I get so depressed when we have to go for weight checks and it seems that it just gets worse and not better. It feels like doing my best as a mom is not good enough for my daughter...can you even imagine how bad that makes me feel? I just don't know what to do anymore and that makes it so much harder. We do everything we are told to do...short of a g-tube, which is something I really don't want to do. I also don't want to feel forced into doing something like that either. I really want Hope to gain weight and be healthy and happy. I want that more than anything. I don't want her to have a heart defect or a kidney problem. I don't want her to get sick and throw up anymore. I am sliding downhill myself and I really need something to pick me up. I don't know what I need, but I know that I can't be depressed and worried about Hope's weight forever.
I am going to end this post because it is depressing. I am hoping my next post will be a super-happy post with a big weight gain.
I am so sorry. Thinking about you and Hope and keeping you in my prayers.
ReplyDeleteHOLY COW! I totally feel you. We HAVE a gtube and are struggling... Although Annabelle weighs a little less than Hope and is younger... but we have been losing weight (like 2 pounds...) so just spent 12 days in the hospital trying to figure it out (and get over RSV...)
ReplyDeleteAT the moment, I'd be super excited to get my sweet love to EAT ANYTHING by mouth... alas... she refuses. *big sigh*
Anyway, I have no grand answers, just wanted to let you know that I commiserate and am praying!
My son's doctors made us get a G-tube when he was 8 months old and only weighed 12 pounds. I fought tooth and nail against it, and hated it for the first couple of weeks. But it has actually turned out to be wonderful for us. It took a long time to catch up, but my son is now 27 months old and in the 40th percentile for weight. A huge weight got lifted off my shoulders when I didn't have to obsess about getting him to eat all day long. I didn't realize how much stress that was creating until it wasn't there anymore. I also love that we don't have to give his medications by mouth anymore. I know this won't change your mind about anything, but I am posting this in hopes you will see that the worst-case scenario, a g-tube, isn't really that bad! I'll be thinking fattening thoughts for Hope, though, because of course it would be better not to put her through another surgery if you don't have to!
ReplyDeleteI am so sorry. It is so frustrating. I think many of us moms just get so discouraged because there are times we feel like we can do NOTHING to help our heart kiddos. Let's face it - we would all send ourselves in to the OR if we could. But, you do stuff for Hope every day. She is happy. She feels loved. She is safe. Those are the most important thing. I am praying for you and hope that things turn around really soon and that you feel some peace. Heart Hugs.
ReplyDeleteI'm sending you lots of hugs and hoping for a weight gain quickly. The weight gain issues are so frustrating. I know when I heard Izzy lost 1/2 a pound this month that my jaw dropped. We need to figure out a way for our girls to want to pack on the pounds. I hope the doctors understand Hope's illness and don't try to force anything on you. I really hope you are feeling at least a little better.
ReplyDeleteI'm so sorry. Wishing you all the best!
ReplyDeleteI hope that writing this post was therapeutic. Please know that you are such a wonderful mom. I'm so sorry that you feel so bad... you are doing everything you can. I hope that her weight climbs upward and that you don't have to ever feel pressured to do anything you don't feel is right. I only had a small taste of dealing with these weight issues with Natalie but it resolved itself within a short amount of time.. I can't even imagine. I'm so sorry. xoxo
ReplyDeleteI am new to your blog, but I just wanted to send a word of encouragement your way. I am a 17 year old congenital heart disease survivor, and I have been able to live a full life, despite my conditions. This too shall pass, and one day you'll be looking back wondering how Hope turned into a teenager seemingly overnight. I can't imagine the struggles you have gone through, but know that you are not alone in this. Much love, Liz.
ReplyDeletePaula, I used to read all the time (when I expecting my baby with HLHS) and have been away for a LONG time. Needless to say, the weight struggle SUCKS--trust me, I know. However, despite many struggles with weight since birth, Cora had her Fontan in January at 25 months of age and not the 10 kilos everyone told us we needed to get to. The surgeon performed a lateral tunnel fenestrated Fontan so her size was not such an important factor. Keeping in mind each individual child's complexities,is the Fontan the major reason weight gain is so stressful? We are trying to let go.....since her surgery she is taking almost no solids but takes nearly 1100 calories a day in formula. And she throws up every day. It breaks my heart, but our GI has assured us that this is just part of her journey, and that avoiding all vomiting is not really realistic. So we do the best we can. Hang in there; from what I've read, I don't know how anyone could question the job you've done raising Hope. Good luck!
ReplyDeleteHannah, mom to Cora, HLHS 27 months