Thursday, August 6, 2009

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.

20 comments:

The Tams Family said...

Avery,
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 :)

The Simmons Family said...

GI is a little bit crazy in my opinion. I took Owen last week and it was all about his calories and fluid intake. He's 25lbs so can't we just keep doing what works for us? Not all babies are the same and should gain the same. I wouldn't push her to the point of vomiting, because she's just getting those cals out of her body. Does she do well with pediasure or whole milk instead of formula? I still give Owen Good Start all day long. But I've been trying to get him to drink things other than water. I tried carnation breakfast, it's a drink full of cals/protein/fats that you can give kids. I'd experiment with a little volume of it at a time and see how she tolerates it. Good Luck. Who'd have thought that eating would be so difficult? By the way, I'm starting to get excited about the Gtube.

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!!!!

Lindsay Brummer said...

you are amazing. i can't imagine what this has been like for your little family. i must say that when i read that book, you were on my mind. bela is incredible. so are you.

Doreen said...

Avery, a very good friend of mine has been doing the blenderized diet with her daughter for about three years now. I'm sure she'd be glad to share her experiences with you! Is there an email address I can give her to contact you? Email me at doreen1999 at yahoo dot com

Hua said...

Hello Avery,

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

angie milne photography said...

sorry to hear about what's been going on :( i honestly think bela looks great though. (she looks bigger every time we see you guys!) and she seems so much stronger. maybe she just likes to go at her own pace? everyone is different, and bela is special.

angie milne photography said...

ps you are an amazing mom!

The Ridgway Family said...

Oh Avery, I think of you and little Bela all the time and I can not imagine how difficult it is to see her vomiting and getting "poked and proded" all the time. I am sorry you have to endure this, but she is a very special little girl and what a blessing she is to so many. I still do not have any answers to life's most difficult questions, but I just know that my faith is stronger from the experiences I have had the last 18 months and I believe yours is as well. You are doing a fabulous job with your situation, it's not easy but try to remember that you are doing your very best.

Love you, Keisa

S and K said...

First off-- LOVE the new blog background, it totally reminds me of that cute rug you showed me and now I want you to for sure get that one!!!!
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!)

emcghee said...

Oh Ave . . . . I don't know . . . so many thoughts going through my head. She looks wonderful--your obviously doing so many things right. give her a love and a kiss for me. And Benson too.

Jillian said...

oh my gosh..... i feel like I am talking to my cousin. she had the same problem with her little girl with a GI tube. She ended up blending her own formula using raw milk and lots of other ingredients she puts in her food for her tube. she is the same though as far as growth. anyways....just so you know if you need any opinions or anything. oh yah....and she throws up a lot too and the doctors have never given her a reason as to why she does throw up! its so sad...it has just become part of her life.

ashley said...

lil bela is an inspiration. i can't believe how much you have gone through and how much you have on your plate. it is so selfless and amazing what you are doing on a daily basis for that sweet baby!

Mom said...

Avery...you are such a devoted mother to little Bela and Benson...I'm glad you can share your frustrations on this blog with all of your friends...keep up the wonderful work with your family - you are indeed an inspiration!

Love,

Janet

Dallas and Krista said...

Oooh Aves. I want to come home and hug you right now. You are Bela's angel and she is yours.

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

Sally said...

Oh Ave...I am so sorry it has been a hard week yet again! As I sat by you in the movie I just couldn't help but think how much you could relate. That little Bela does look like she is getting bigger and shes about to walk and she's starting to talk. It's so frustrating that just one doctor can't focus on how good she is doing. I know she is draining and needy and that has to be so hard. I am glad you share these feelings. I feel like being strong comes in cycles and you have to get to a breaking point in order to start over and be strong for another cycle. When you get to that breaking point I think the only thing you can do is share and reflect feelings and rely on the Lord which is exactly what you do. You are once again doing everything so right... you're a great example. And Bens is just an awesome, strong, loved kid...HF gave you him because he knew about Bela. Call if you need help or a break...I will always do what I can...

cici said...

I know I probably do not understand the situation, but my first thought was Are you not breastfeeding anymore? If so, can you get a mother to donate breast milk, as it is not thick like formul. She may be too old you think, but I feel you are never too old, as I nursed until my children were 22 months and added pureed foods slowly starting at 6 months. Nature knows best

Alyson said...

Have you asked her GI doctor if you can give her Pediasure.......My son is 14 months and a little over 19 pounds.....The Pediasure has helped TREMENDOUSLY and he has been able to keep it down.......Formula made him SICK......It is so upsetting when they are so sick and you feel like you have done everything and nothing really seems to help....

Take care

Dennison Family said...

It was so fun to see you last Saturday! I wish we could have seen Bela! Sorry about the ups and downs. that must be so difficult. You are doing GREAT and you are doing what is best for your baby! that is more than anyone can ask of you! Way to go you!!

likeschocolate said...

How terriable! Roman had a really hard time on formula too. I don't know when she is a year old, but I would almost try her on regular milk or even pediasure and see how she does. I don't think it could be any worse than that terriable stuff they try to feed our children. On another note, Roman is really small too. I guess the only concern for Bela is that she will need another surgery, but isn't that a way off? Hang in there . I understand your frustration. Hugs from Roman and family

Wendy said...

Ugh, I'm sorry things are not going so great. It makes my heart break when I hear all the things Bela has to go through and your family. I know it's a different situation, but it's hard to watch family members struggle. It's amazing what these children can teach you and the impact they have on all the people surrounding them. They are so full of love and are capable of teaching such important lessons. I think of you often and pray that all is well with your family. We love you guys!