Many of the tips we were already doing and it was so nice to read that it must be a good thing so you all were suggesting it! And the little extras like soak cheerios in formula and carnation instant breakfast, puree and add to yogurt was a huge help! So many of you had sensational ideas. K, I would love to have you as Ivy's Personal Chef!! We do have a dietitian that we can speak with at any time. We have consulted with her since before leaving the hospital. Ivy's diet is very restricted. NO fats. Nada! Ivy can have a tiny bit of coconut oil...... Ivy LOATHES coconut~ ha, par for the course right?
So here's the deal. This baby of ours doesn't eat much. At all! She takes 3 bites if we are lucky!
My sweet angel friend Chris made her some really yummy lentil soup. She ate more of that than she has ever eaten of anything.
The first day she ate almost 2 cups in a day. The next morning we found lentils in her hair. She had thrown up in the middle of the night.
But we continued to feed it to her the next day and she did fine. I think her little tummy is just that, a little tummy. Very little!
She does not like oatmeal.
She ate so much oatmeal and chocolate at home before surgery and I think she might associate it with the way she felt before surgery. Terrible. Because my oatmeal and chocolate loving girl is a thing of the past. She can't stand the sight of chocolate now!
She is starting to reject her yogurts and danimals and smoothies.
She can not have any fluid thinner than thick honey. So no milk or drinks made with milk because once I had the simply thick liquid thickener it turns to gel and she is disgusted by it.
If I make her try too many things she will reject everything I try.
If Ivy doesn't want it.... Ivy's not having it! She will not open that tiny heart shaped mouth for anything!
She is low energy to say the very least. It scares me, it saddens me.
She sleeps a lot. 2 big naps and 13 hours at night. that scares me too.
We see the pediatrician again Wednesday morning.
We see her cardiologist on Friday.
I am doing well. I get plenty of sleep, waking twice to give medicine and check on my little angel.
My oldest daughter is here and she is the hugest blessing in all that is required of caring for the Little's. She is my side kick, 100% of the time by my side doing what needs to be done to keep Ivy fed and the Little's cared for. Thank you Quincie, I love you baby!
I do not finish any thing I start. The house is usually a wreck. The laundry is not done. But everyone is fed and clothed and loved and medicined (new word I just made up) and right now, that is enough!
I am not a doctor or anything, but I think the low energy / lots of sleep is probably just because she's not eating much! I don't think I'd let it worry you too much. It sounds like she is doing quite well for as early as she is post-surgery! :)
ReplyDeleteYes... she will grow to hate anything you give her over and over, so it would be best to switch things up. I know a lot of kids with Cystic Fibrosis end up hating apple sauce because that is the best way to hide their medicine when they are little bitty. Have you tried Ensure? Or milkshakes made with low-fat milk?
ReplyDeleteThat's ALL a mom can hope for and you know~ all this will be a distant memory soon. Live each moment taking it all in and savoring the love. God is blessing in so many ways and I LOVE reading about them. You are a GREAT mom and so thankful your daughter is there to help. Amelia is home too and I feel like a clone walked through the door!!! They are a huge blessings aren't they? Blessings and love!!! XOXO
ReplyDeleteCan you please explain why Ivy can't have any fats and for how long this will be?
ReplyDeleteI'm not surprised by her low energy level. She has a LOT of healing and catching up to do. She's also at an age where her baby cartiledge starts becoming harder bone and that takes a lot of energy, too.
On top of this, I imagine she's having sugar crashes.
I'm glad she ate the lentil soup! I LOVE lentil soup.
It sounds like you are doing as well as possible under the circumstances. If you church has a women's group or even teen girls group, perhaps they can come over for a service project and do your housework!
Sounds like she is doing so well. She just endured so much and has so much healing to do. Mary, I am sure in no time you will be hiding the chocolate from her. Praying that God will continue to heal her inside and out.
ReplyDeleteHang in there, by your little thread I might add!!!! I so hope you start seeing her able and interested in eating more soon. We still pray for you all EVERY morning on the way to school:)
ReplyDeleteI cannot believe this is her. She looks amazing.
ReplyDeleteadding gelatin and honey to any food she does like will increase the calories and make tastey gummy foods easy to eat and digest. Gelatin has no fat! so... puree some yummy fruits, add honey... maybe even some protein powder (fat free /lite) and gelatin, pour into fun shapes (molds available at Ikea for a very resonable price... you can search google for more gelatin recipes... and tips there are tons... if you want to add it to soup to thicken the soup, do so after it cools as extreme heat can ruin the gelatins ability to thicken!!! these homemade gelatin / fruit snacks were the only way I kept weight on my son when he was taking medication that made him not hungry!! :)
ReplyDeleteYou will fel better after you see the doctor tomorrow. I think you are handling everything beautifully and as you know...the house isn't important right now!!
ReplyDeleteKathie
Mary, I would really question the "no liquids" thing.... Of course, I am no medical professional but I logically can not conceive of why thicker would be seen as better for a sore throat from the ventilator. I also would really, really demand/question if there is an immediate or possible solution for the 'nick' the doctor made that is causing poor Ivy to vomit constantly... I think that it's no wonder poor little baby girl has no energy, with her bizarre food requirements and constant vomitting. I feel so very bad for beautiful Ivy and her wonderful Mommy!!!! Hang in there!! You are amazing and just the Mommy Ivy so desperately needed!! God bless!
ReplyDeleteWhen I came back home with my daugther she was so low energy, It was so sad to see... Like she were not the same baby! 5 months after surgery she beging to be herself again... So be patient, she needs to sleep and one day she will surprise you... And do things like before... And eat chocolate again ( funny because same thing appends with chocolate )
ReplyDeleteHi Friend!!!!! It sounds like you are doing FANTASTIC over there! So proud of you!! She looks precious!!
ReplyDeletePraying you have a great Peds appt. tomorrow!
Love,
Diana
Have you tried expeller pressed coconut oil? Tropical Traditions sells it onkine and it has no coconut flavor at all. :) we use it and I cook with it...add it to anythjng! :) still praying for your precious girl!
ReplyDeleteYou are overwhelmed, at the least. Try to relax, as Ivy can feel your tension. Try not to worry too much about her eating. Surgery, any surgery, is hard to come back from, for adults, as well as children. The sleep is probably the best thing she could do right now, to heal and recover. Likely, she'll eat when she needs it and feels hungry. I have a nephew who lived through many months of chemo when he was just a baby. He ate nothing but cottage cheese for months! I worried...for nought. He's a strapping young man today. The Dr. told his mommy to just give him whatever he wanted to eat. She did. He seemed to know what he needed. Try not to expect too much, too soon, of Ivy or yourself, for that matter. It's been a rough ride. Time is a great healer. Hang in there. In time, things will improve.
ReplyDeleteOh Mary ~ thanks for keeping us posted. You remain close in my thoughts, and we most certainly will keep your family and precious Ivy Joy in our prayers. There is so much good and praise-worthy that God has already done, and we know that He will carry it through to completion!
ReplyDeleteAren't you just so glad to know that His mercies are new EVERY morning!?! God is good and so faithful. He is with you... always!! I know you know this. I just want to encourage you. You are so strong and such an amazing woman of God ~ a beautiful example to all of us. I'm not sure I'd have the ability to be as strong and gracious and as courageous in your shoes. Love you sweet friend!!
PTL for your oldest daughter's help... a true blessing and gift indeed!
Praying this season is soon a distant memory and that all goes well at your apptmt tomorrow. May God continue to be glorified in all of this.
Ivy is just SO beautiful!! Love the photos of your precious baby girls! <3
love and hugs,
~Tanya
Mary, I am worried that my former comment may have come across the wrong way... I am amazed at the incredible job of advocating and being a loving Mom that you are each and every day. You have been doing everything right!! ...Just feeling sorry for pretty Ivy and you. ...I just feel like baby girl would love to eat what they say she can't and that's heartbreaking isn't it?? Hang in there. You and Ivy are an inspiration!!!!
ReplyDeleteAlthough I don't know your family, I would like to suggest that you might consult with a speech-language pathologist (SLP) in addition to the dietitian. If you are not currently being followed by an SLP, they may be able to help with food/drink ideas related to the swallowing challenges. I would ask for a referral through the hospital or your pediatrician of an SLP who specializes in feeding & swallowing.
ReplyDeleteYou are amazing!!! And we love you guys an extra lot!!! We continue to pray and for God to make the road a little less bumpy... But then again, where would we be without the bumps?!! He makes things perfect in His time! I cling to that promise as I'm sure you do too! Love you girl!!
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