The heck with formula
I just heard Bela on the monitor and walked in to her room to find her gagging and retching and trying to rid her body of thick, nasty formula. For some reason, her body does not like the stuff. It was so thick she was choking on it as it came up and her poor little eyes were all red and bulging from gagging so hard. I picked her up and cleaned her off and held her little trembling body for awhile til she fell back asleep in my arms. I havn't mentioned her throwing up lately on the blog, but she still is, a lot, and I am SICK to death of watching her do it! It's so sad that it's not what she's choosing to put into her body that she's throwing up, mommy pumps it in her and how should I know when it's too much? It's sooo aweful, I feel so bad.
So we went to the GI doc yesterday (a brand new doctor who had just met Bela for the first time) who told me that she wasn't growing quickly enough. She had only gained about 4 grams a day and she's supposed to be gaining about 25 grams a day. Oh really? I didn't know that, no ones ever told me that before..
So of course she tells me I need to up her intake and calorie count. UGH! I just want to yell! I can't even get her to keep down the calorie intake she's already on! It's just too much for her! She's not just your 'average' baby! I know she's not growing great, but what am I supposed to do when what I am already feeding her is not enough, but she can't keep it down? So they suggested I try higher calorie formula at the same rate all night long. This is my 4th attempt with trying the higher calorie stuff and the 4th time she has forcefully vomited it, so I am done trying..
I have been feeding her a mixture of formula and homemade blenderized stuff. She keeps the stuff I make with real food down so much better than the formula, but let me tell you, it is not the easiest thing to do. I have to figure out calorie, protein, carbs, and fat grams for each meal I make and make sure they all total enough, but not too much. I also have to keep track of the vitamins and minerals she's getting(zinc, calcium, vitamin D and all the rest). Very time consuming. The end product is usually pretty thick, so I have to manually syringe it in her tube which takes about 45 minutes, and usually more than once it pops out of the tubing bc it's so thick and squirts me, her, the furniture, the carpet, the ceilign, and whatever else is in a 1 mile radius becasue I'm having to push it so hard. So sometimes I just want to substitute some formula in cuz all the work is done and it can be pumped in with no mess! But she hates it... So I'm a little stuck...
I saw My Sister's Keeper with some friends the other night and I could'nt help but see myself a little in it. In the beginning where it says that everything looks okay from the outside, but on the inside, there are cracks. At any time, your whole world can change. In the hospital scenes. WHen she said that having a sick child is a full time job. In the neglecting of the other kids.. you never mean to do it, but it just happens when one child has so many more needs. How she fought til the end and could never let go. I dunno, it made me think a lot.. For better or for worse, this is our life right now and I don't want stress and worry to consume it. There's times I've been better at dealing with it and times when I'm not so good at it. I think I need to reevaluate how I'm handling things right now and try to let the not so important stuff slide off me a little better. Whether I like it or not, I have to sit in doctors offices weekly that do things to her she dosn't understand right now and dosn't like. I will watch her time and time again cling to me and look at me with tear filled eyes. I will watch her vomit probably daily, until we can figure out how to get her eating and growing more regular. I will watch her struggle to do things that just come naturally and easy for other kids. She will miss out on a lot of things in life. BUT, there is SO much she will do. So much is IS doing. Once again, as I sit and think about her, she inspires me. She always waves to everyone and flashes them a smile when we go into any apt. She takes it like a champ, until she's just too scared to smile and wave anymore. But everytime we're done we walk out and I say, All done Bela!! You did so good and I'm so proud of you!! And she smiles and does her all done sign as big as her little arms can do it.
All done for now.. until next time.
So we went to the GI doc yesterday (a brand new doctor who had just met Bela for the first time) who told me that she wasn't growing quickly enough. She had only gained about 4 grams a day and she's supposed to be gaining about 25 grams a day. Oh really? I didn't know that, no ones ever told me that before..
So of course she tells me I need to up her intake and calorie count. UGH! I just want to yell! I can't even get her to keep down the calorie intake she's already on! It's just too much for her! She's not just your 'average' baby! I know she's not growing great, but what am I supposed to do when what I am already feeding her is not enough, but she can't keep it down? So they suggested I try higher calorie formula at the same rate all night long. This is my 4th attempt with trying the higher calorie stuff and the 4th time she has forcefully vomited it, so I am done trying..
I have been feeding her a mixture of formula and homemade blenderized stuff. She keeps the stuff I make with real food down so much better than the formula, but let me tell you, it is not the easiest thing to do. I have to figure out calorie, protein, carbs, and fat grams for each meal I make and make sure they all total enough, but not too much. I also have to keep track of the vitamins and minerals she's getting(zinc, calcium, vitamin D and all the rest). Very time consuming. The end product is usually pretty thick, so I have to manually syringe it in her tube which takes about 45 minutes, and usually more than once it pops out of the tubing bc it's so thick and squirts me, her, the furniture, the carpet, the ceilign, and whatever else is in a 1 mile radius becasue I'm having to push it so hard. So sometimes I just want to substitute some formula in cuz all the work is done and it can be pumped in with no mess! But she hates it... So I'm a little stuck...
I saw My Sister's Keeper with some friends the other night and I could'nt help but see myself a little in it. In the beginning where it says that everything looks okay from the outside, but on the inside, there are cracks. At any time, your whole world can change. In the hospital scenes. WHen she said that having a sick child is a full time job. In the neglecting of the other kids.. you never mean to do it, but it just happens when one child has so many more needs. How she fought til the end and could never let go. I dunno, it made me think a lot.. For better or for worse, this is our life right now and I don't want stress and worry to consume it. There's times I've been better at dealing with it and times when I'm not so good at it. I think I need to reevaluate how I'm handling things right now and try to let the not so important stuff slide off me a little better. Whether I like it or not, I have to sit in doctors offices weekly that do things to her she dosn't understand right now and dosn't like. I will watch her time and time again cling to me and look at me with tear filled eyes. I will watch her vomit probably daily, until we can figure out how to get her eating and growing more regular. I will watch her struggle to do things that just come naturally and easy for other kids. She will miss out on a lot of things in life. BUT, there is SO much she will do. So much is IS doing. Once again, as I sit and think about her, she inspires me. She always waves to everyone and flashes them a smile when we go into any apt. She takes it like a champ, until she's just too scared to smile and wave anymore. But everytime we're done we walk out and I say, All done Bela!! You did so good and I'm so proud of you!! And she smiles and does her all done sign as big as her little arms can do it.
All done for now.. until next time.
Comments
I'm sorry you are so frusterated, but Bela really looks great! I've come to realize (with the help of 8 months in the ICU) that EVERY doctor has their own opinion and it is entirely based on their specialty. 25 grams a day? Addie went 3 months and only gained 25 grams (ok maybe a little more) and not one dr. or nurse could get over how big and great she looked last week! Her hair looks healthy and her skin looks healthy and so does Bela's. Keep doing what you are comfortable with and what has kept Bela here and looking wonderful and being so mobile for the last 17 months! She has defied the medical odds since before she was born... Yeah so that's just my expert (un)medical opinion :)
I've been wanting to see My Sister's Keeper. I just read the book and I too found too many similarities in our stories.
Hang in there.. you're doing AMAZING!!!!
Bela looks so adorable in the picture.
I'm sorry that you are frustrated. Hope our website can provide useful information for you...
I'm Hua, the director of Wellsphere's HealthBlogger Network, a network of over 2,000 of the best health writers on the web (including doctors, nurses, healthy living professionals, and expert patients). I think your blog would be a great addition to the Network, and I'd like to invite you to learn more about it and apply to join at http://www.wellsphere.com/health-blogger. Once approved by our Chief Medical Officer, your posts will be republished on Wellsphere where they will be available to over 5 million monthly visitors who come to the site looking for health information and support. There’s no cost and no extra work for you! The HealthBlogger page (http://www.wellsphere.com/health-blogger) provides details about participation, but if you have any questions please feel free to email me at hua@wellsphere.com.
Best,
Hua
Love you, Keisa
I’m sorry that you are frustrated----you are the last person so get frustrated at anything so when you are frustrated I know there are legitimate reasons as to why!!! I so wish I could say or do anything that would lift even the slightest bit of your burdens, I am always astonished at the grace, strength, and love you tackle each hurdle that comes your way. You know I think you are supper woman!!! (Which is TOTALLY why Benson wants to be a superhero, so he can be like his Mommy!!! I figured it out! TADA!!!) I think you always know what’s right for Bela’s situation, you keep doing what you are doing because LOOK at where you have gotten her!!! I swear you are smarter than the Dr’s when if comes to that girlie! Just remember that she lets YOU know what she can handle and what she can’t and you know her better than anyone else, trust that, and feel confident is what you are doing, you are absolutely amazing! Always know I’m right here for you if you need anything, even if it's for me to tell you how angry I am at the Dr.’s. (we both know I’m pretty good at that!)
Love,
Janet
I wish there was something that I could say that would help ease your burdens but I know that there isn't. Just know that I am proud of you and that I look up to you in so many ways, and that I am proud of Bela and amazed by her strength, and that Benson is a happy sweet boy and there is no doubt that he knows how much he is loved (it is in his very countenance) and that with your sweet husband you will weather all storms and enjoy all of the bright days. I love you all.
XOXO
Take care