There aren't many things I really, truly regret.
But if I could rewind to two months ago, I would have made some much different choices regarding the direction that Brenna's eating habits were heading. And I'm really struggling with this right now.
The hardest thing for me to accept is that I don't feel these issues simply manifested. I believe they were created by some of the decisions that we and her medical staff made for her.
When Brenna was two months old, she was eating between 120-150 mL (4-5 oz.) of milk consistently.
Now - after various attempts to fortify her milk to higher calories, trying new formulas, tubes down her nose and finally a g-tube - she is eating 15 mL by mouth and we are tube-feeding about 45-50 more in about 45 minutes' time because any more than that or any faster than that, and she throws it all up.
I love our specialists; I really do. And I don't blame anyone for anything. But the irony is not lost on me that Brenna was eating FAR better months ago before everyone started trying to help her eat better.
At 2-3 months, she was growing, thriving, changing, albeit slowly. So everyone wanted her to eat more, to grow more.
And now at 8 months, she's eating practically nothing on her own, and she's still at a growth plateau. She's not yet gotten to try table food aside from a couple of brief tastes of rice cereal, and I'm afraid we've caused a lot of long-term damage....I think it will take a long time now to get these skills back.
The only solace I have now is that we are able to feed her through the entire night - slowly but surely. But our days are currently revolving completely around feedings. We are having to feed her as much and often as we can without making her sick...so a lot of small, long feedings. Which means she is hooked up to her pump about 3/4 of the day at this point.
I feel so stupid. I actually thought when the g-tube was placed that Brenna would eat around what she had previously been consuming by mouth (around 2 ounces) and then we'd feed her the rest through the tube, and we'd all go on our merry way.
This? Being hooked up to a machine the majority of the day? This is not the relief I was expecting and anticipating, the relief that practically everyone assured us we would get from having a g-tube.
I am trying to let these regrets go. I can't change anything. And now I can only look forward and deal with what is going on now.
Today was the first day in three weeks that I haven't had knots in my stomach most of the day. I'm getting the hang of the pump, I'm trying to get our new feeding system/schedule under control, and I'm really trying not to hold on to my guilt and regret about letting her eating issues spiral so far down.
You can't keep beating yourself up over this. We are struggling too, and it is hard when we live in a society that revolves around food and those traditions. No one wants to hook their baby up to a pump in order to feed them. I know we didn't. It doesn't seem fair and it makes you feel sad sometimes, but even if it got to the point that she was 100% tube fed for awhile, aren't we so lucky that we live in a time that there are alternate ways to feed our babies?
ReplyDeleteWe have slipped backwards in our oral feeding too, far far far more than I ever thought we would, but that doesn't mean it will never happen. There's a reason Brenna wasn't taking in enough by mouth and eventually her low intake would catch up with her, I am positive the doctor's wouldn't have suggested a feeding tube without good reason.
I have great faith that Brenna is going to ditch her g-tube one day and show us all that she just needed a little help until she got strong enough to tackle it all on her own. Until then, the pump is portable, when she gets bigger they make adorable little backpacks that she can wear while playing, and maybe eventually you won't even need the pump, you can just gravity feed her with a syringe and an extension tube.
Stay positive. You're doing a great job and so is Brenna!
Mindy~
Stay positive....
ReplyDeleteThe doctors are doing the right thing....
Since a child's brain grows as much in first year as it will grow during rest of life...poor nutrition during that period can cause permanent negative effects in mental development. She is getting the nutrition she needs and that is very positive!
When you choose a direction to go, you choose it with the best outcome in mind. There is a chance that if you didn't follow the path you have taken with Brenna's you would still be in the exact spot you are in. You have no way of knowing if your choices created a negative impact or actually made her better off for the time being or for the future. Do not beat yourself up over the "what-ifs.". I am 100% sure you and your husband made the best decision possible at the time you made it! You cannot regret that!!!
ReplyDeleteHaving read this blog for several months now (and posting for the very first time!) I can see and read in your words the toll the last several weeks have taken on you. Keep you head up! You have a very special little girl and I am certain that if she could verbalize it, she would tell you that you are absolutely the best mommy in the world!!! Your children are so lucky!!!
None of us are able to see what the future holds when we make decisions for our children or even for ourselves. Use your faith to know you did the right thing at the time; and have faith that it will all turn out ok in time.
ReplyDeleteRosemary
Don't beat yourself up about this. You never know things may change in the next couple of months or even weeks. I am sure you probably research everything and you and your husband talk everything out. You are trying your best to make the best choices for your little one. I can tell from reading your blog you are a fantastic mom and have a fabulous family!
ReplyDeleteIt is hard to be a mom and it is even harder to be a mom to a child with special needs. I have a child with some special needs. I understand what you mean about your stomach being in knots. Mine has been in knots for awhile too try to make sure that we are making the right decision for the three upcoming surgeries for our son. Keep your head up sweetie! :)
http://countryrootscityliving.blogspot.com
Hi... Wish I could do or say something... still sending prayers and hugs!
ReplyDeleteBarbara :-)
I was a pediatric nurse at a hospital before my children . I worked with children who had buttons. It takes some time to work out ALL the kinks. It is a turtle race, but in the end the outcome is far better than before. I know you are living the turtle race, but don't look back. It will get better slowly! Thinking and praying for you!
ReplyDeleteI know poor Brenna seems miserable right now, and you feel miserable with a routine of constant feeds and dealing with throw up, etc. I haven't experienced it, but I can imagine how "unfair" it all must seem since she was doing "fine" before. :( I'm very sorry.
ReplyDeleteWell, firstly, happy 8 months Brenna! I know that it has been a rough go of it at times. My spouse had a medical device put into his chest, for his failing heart, just in case, to kick in if his heart stops. It has never gone off (THANK GOD), but the wiring into the heart causes a fairly large amount of blood leakage around the heart. He and I made the decision to have it put it, based on what the specialists thought was best, and they were persistent. Now that it's in (permanently), there are more critical issues with the heart, as if there weren't enough. He has had to accept this. The next time we went in, the heart specialist pushed a heart pump (like Dick Cheney has - as if we could live like Dick Cheney ha ha). My husband respectfully declined. At least he can make the decision, though, that's the tough part with Brenna. You did what you thought was best and that is really the best you can do, right? It's not like you have a lot of positive choices from which to draw. God love you - you are doing a great job and don't beat up on yourself or expect perfection. Anyway, I don't know, but... we drive 5 hours for medical care, to a place that we "somewhat" trust, but the lifestyle is disruptive and it isn't "normal", whatever that is. - I forget. If the going really gets rough, perhaps a trip to the HI specialists out east would be a possibility. It is just something to consider in the back of your mind. I know other young couples with babies who have had BIG problems who have resorted to this decision, with the support of surrounding family. With a speciality hospital, the doctors deal with patients with these diseases every day and have a much larger knowledge base to pull from. Now having said that, if you read my post, you can tell that it helps me a lot to hear you second guess and vent. I've been there - I'm sort of there right now (as if it's all about me ha ha). But I do get tired, and frustrated, so your writing has helped me. I am praying for all of you. Just do the next right thing, which is sometimes to just put one foot in front of the other and trudge. God will direct you - he truly will. Remember, BREATHE. FSorry for the long post.
ReplyDeleteHindsight is 20/20 for all of us...especially parents! You're an amazing mom and both of your babies are lucky to have you. You followed what you thought was the right direction, and which might turn out to still be just that. Celebrate the smallest of triumphs and don't let the set backs discourage you. God is in charge and He knows what he's doing. Trust in that!
ReplyDeleteI agree with the previous posters. You made the best decision you could with the information you had available. You just have to try and move forward from there and stop torturing yourself with the 'what-ifs'. You really are both doing a great job and need to give yourself a break. We continue to think of you and Brenna in NJ.
ReplyDeleteAs I recall, she was eating enough to stay hydrated but not enough to grow. Even when eating she was not gaining weight so you and the doctors have no choice but to be agressive in her treatment.
ReplyDeletemy heart goes out to you..your post yesterday touched me...I could see what you meant by Brenna's brow being curled in discomfort. And today I feel for you too. But as others have said, you and your husband made the best decision at the time. And I agree, you'd never know what may have happened if you didn't do the tube- it may have been worse. Do not regret anything that you do in love for your child!
ReplyDeleteWhat we know for sure (as Oprah would say- lol) is that you love Brenna beyond what any of us could ever express and you are doing all that is needed to try and make everything good for her.
I admire your strength and love for your children. I will continue to keep you in my thoughts and prayers!
Hello. My daughter has a GJ tube. she started out with the mickey butten (the G) but due aspiration and subsequent pneumonias we went with the nissen fundoplication for the GJ tube. I fought them both for a while but it does get easier. You get into a routine. My daughter Alicen eats by pump from 5:00 pm until 6:00 am everyday. Her settings are really low and she "eats" nutren junior. 3 and 1/2 cans a night. It does make for hard times when we want to go somewhere at night time but we just stay home usually. Give this some time it will get easier. I can give you some advise though, always make sure ou rinse out the tubing because if it gets clogged sometimes. If it ever gets clogged we have found that using Coke/Pepsi works. Room tempature. Just use little bits until it starts flowing again. Alicen's surgeon Dr. Rogers and Leona at St. Johns told me that she would pork up with the feeding tube but she never did. good luck and it will get easier to deal with. I promise you.
ReplyDeleteChristina Wooley
a preemie mom
alicen_red_one@yahoo.com
Hello. My daughter has a GJ tube. she started out with the mickey butten (the G) but due aspiration and subsequent pneumonias we went with the nissen fundoplication for the GJ tube. I fought them both for a while but it does get easier. You get into a routine. My daughter Alicen eats by pump from 5:00 pm until 6:00 am everyday. Her settings are really low and she "eats" nutren junior. 3 and 1/2 cans a night. It does make for hard times when we want to go somewhere at night time but we just stay home usually. Give this some time it will get easier. I can give you some advise though, always make sure ou rinse out the tubing because if it gets clogged sometimes. If it ever gets clogged we have found that using Coke/Pepsi works. Room tempature. Just use little bits until it starts flowing again. Alicen's surgeon Dr. Rogers and Leona at St. Johns told me that she would pork up with the feeding tube but she never did. good luck and it will get easier to deal with. I promise you.
ReplyDeleteChristina Wooley
a preemie mom
alicen_red_one@yahoo.com
Please don't feel guilty. Look at all you've overcome in the last 8 months. You are doing a wonderful job and your feelings are normal. I'm assuming you have a facebook. There are a couple groups to check out. Mommies of Miracles and the pediatric feeding disorders groups. Both are diverse and cover many different issues on a daily basis.
ReplyDeleteBelieve it or not, things will look brighter. My daughter is hooked up to a pump 22 hrs a day and I'm grateful for that pump. It keeps my daughter is stable and happy. She's active and we now covet all cute, tiny backpacks to carry her Infinity pump;) You learn to look at your child and not the medical interventions. So she has a feeding tube.....that tube will give her what she needs so she won't have to expend her energy on eating/digesting complex proteins. That's extra energy to play with her brother and be a baby!
Dealing with the skin condition must be so difficult and then to add the feeding problems on top of that is just over the top. I use to get in my car.... by myself... and drive around yelling for half and hour at the top of my lungs...felt good to get some of the anger and frustration out!
ReplyDeleteMy daughter was on a liquid diet until age four. We declined having a g tube placed out of fear she would not learn to eat normally since it was associated with pain. We feel we made the best decision with what we knew at the time but in hindsight, her poor nutrition might be to blame for her learning impairments now. It sucks but we do the best we can with what we know. Hugs!
ReplyDeleteThe best day of our preemies life so far was the day she had her t-tube removed. We had it placed after her fundoplication and regretted it for every second until it was out. I 100% understand your regrets. I felt the same way. We, like you, made the best decision we could with the info we had. You are a warrior mom. Very few understand the life of a special needs family. You are a rare, precious gem and you are not alone. Everything you do is based on your best intentions for your little and no sweet beautiful baby could ask for more. Brenna is a gorgeous, strong fighter...and an angel. I pray for her current infection to heal and for happiness and health in the future. Bless your family. XOXO
ReplyDeleteSomeone sent me the link to your blog because my daughter just got her feeding tube. It's only been 5 days but she is already loosing weight, throwing up, diarrhea and SO miserable. I was told that things would be so much easier but so far, they are SO MUCH HARDER!! I know it's only 5 days and I have to give it time but seeing your baby girl so miserable is so hard. I appreciate you writing your thoughts and feelings down. My daughter Oaklynn has Rett Syndrome. You can view her story here... (http://www.youtube.com/watch?v=RtK_Alm7f_k&feature=related)
ReplyDeleteor view our blog about her life here... (mysilentangelsfight.blogspot.com)
Thanks again for sharing your beautiful daughter with the world.
-Whitney