Now that we have been home a week, now that she knows she is safe and she has a choice, she wants nothing to do with doctors and nurses and such. She asked her physical therapist to leave and showed her the door the entire time she was here. She still held out all the right body parts today at her cardiologist appointment (it was rescheduled for today). And she was pleasant as can be at her pediatrician appointment yesterday.
And I am OH SO HAPPY to report that our baby girl is NG tube FREE!!!!!
Because with a mama who refused to give up and a baby who tried her hardest to eat as many little bites as her tiny tummy allowed...
IVY GAINED 1 pound!!!!!! That is a whole lot of weight for 6 days, on a fat free/low fat diet!!
She is up to 17 pounds!!
She is drinking her milk with vanilla carnation instant breakfast thickened with simply thick. She drinks her water with simply thick. It makes the liquids thick like a hair gel... yes that thick, and gel like. But she finally began to notice how much better she feels when she drinks so she doesn't really protest any more, she just makes a face like, wow, that was nasty!!
Our cardiologist appointment went well. No, it went Really Well!
She had a chest x-ray, EKG, and Echo Cardiogram. everything looks GREAT!!!!!!
Her oxygen saturation was 90. She ranges in the low 90's all on her own now!!! Previously she was in the 40's folks!!!
We no longer need oxygen assistance at night!
She is absolutely amazing!!!!!!!!!!
It is times like these that Awe and Gratitude overwhelm me.
Those moments when I just want to thank God over and over and praise Him for the good things in my life, the huge hurdles that He has allowed Ivy to overcome and the growth that He has done in me through this time!
Now I need some great ideas on how to hide medicine!! Jaime?? Anyone? giving her thickened medicine triples our volume and she already gags on just a taste. I have tried gelatin, pudding, sugary things... nothing keeps her from gagging on her Lasix (Furosemide). It has a strong alcohol taste and she needs it twice a day. Today she is as puffy as a beach ball because she has been throwing it up. Her ankles run right in with her feet and her eyes are squished! Doctors said, ~she needs every drop of it twice a day, can't afford to miss a drop, we know you can do it!~ ouch!
By the way, Guess who's turning 2 on Sunday?????????????
Oh give thanks to the Lord; call upon his name;
make known his deeds among the peoples!
Sing to him, sing praises to him;
tell of all his wondrous works! —Psalm 105:1-2
Many medications can be compounded into formulas that aren't available at regular pharmacies. Perhaps they can compound Lasix into a suppository or a sublingual drop? I use Belmar Pharmacy in Co., because of their great reputation in the medical field. They will overnight your order. Worth checking out!
ReplyDeleteCan they give you her meds in pill form? Even if you have to cut them? Please don't be offended when I reference my fur baby but with my dog, she won't take meds either. So with the back of a wooden spoon, I crush pills into powder. Then squish the powder into something she does like (bread, yogurt, etc). It's so fine that she can't figure out it's there before the food is gone. I honestly think liquid meds are the very worst as they always always taste so terrible.
ReplyDeleteKK
Praising God with you for His continued healing! Such a precious child and a miracle.
ReplyDeleteSo happy to hear your news!!! We wil be praying specifically for her to take her medicine. I experienced that in a tiny magnitude when Madeline had surgery for her broken arm and it was so stressful. Oh sweet Ivy has stolen my heart, she is so special and precious!
ReplyDeletePraise God! I'm so glad that Ivy is doing so great! And congrats to you on getting 1 whole pound on her! Amazing!
ReplyDeleteOh Mary, the medicine issue must be so hard. I have used this method and pray this helps you.
ReplyDeletehttp://www.troublesometots.com/getting-medicine-into-your-baby/
Mary, we have been praying for Ivy and your family.....and we have praised as we have seen what God has done!! I know you don't know me, but I just love you and your family and the wonderful spirit that all of you have. AnnC in TN
ReplyDeleteAwesome news! -Nancy
ReplyDeleteOh Mary . . these posts . . I too just praise Him for His healing hands on Ivy.
ReplyDeleteI wish I had some great wisdom for hiding the meds. Since Elisyn had an NG tube for so long and because she was older we explained that the only way she would get the tube out was to take all meds orally. It wasn't something she was fond of and she vocalized it 3 times a day. We started giving her whatever treat she wanted after taking her meds. After a while she got used to it. There was one med we had to dilute, that might work to dilute it into what she is already taking by mouth.
Sorry Mary . . the responsibility of the meds is like a full time job, on top of her already eating/swallowing issues . . but she will get there, ever so slowly.
Love this update on your Ivy Joy! Thanks for sharing her wonderful healing progress.
ReplyDeleteMaybe the pharmacist can add a flavor to her meds to make them taste better?
You are an amazing and inspiring mama!!!!
Hi
ReplyDeleteThey always gave my grandmother her meds in applesauce - maybe you could thinken it up and hid it there...good luck.
Carol in FL
how about mixing it with Honey.... Gyll
ReplyDeleteWhat great news! Your little Ivy is a fighter! :-)
ReplyDeleteThe only thing I can think of that would be strong enough to hide the alcohol flavor is grape juice - thickened, of course!
ReplyDeleteI do think that trying to compound it differently is the best option, though.
Because she's vomiting, try to have something, like lentils, in her stomach first. If the alcohol hits the lining of an empty stomach, she might not have a choice but to vomit, even if she doesn't gag.
Sometimes making it cold is supposed to help, but I've not found this to be true.
If she likes pure fruit sorbet, perhaps that would work as a disguise.
What a wonderful report from her appointment! You are doing it all right, that's for sure! That one pound must make you feel like Mother of the Year!
You can give her a sucker (sugar free) and use the syringe to release the lasix in the side of her mouth against the cheek as far back as is okay, while she is eating the sucker. My daughter got used to the lasix and turned into a little bird. She saw me coming with medicine and she lifted her little head and opened her mouth waiting for me.....so cute!
ReplyDeleteTry grape jelly...I had jaw surgery as a child so my mouth was wired shut. I had to chop up those awful sour sterroid pills and get them through clenched teeth. Grape jelly worked pretty good.
ReplyDeleteWe mixed the meds in many things but she's tHrowing it anyway... So we gave her as is and now she's able to take it without a lost... It's include Lasix, Aldactone, Metolazone and sodium!
ReplyDeleteIf you mixed she have more to swallow... I think it's worst
Happy to ear the news about her heart!
Hi Mary,
ReplyDeleteWhen my daughter came home she had to be treated for Giardia, the compounding pharmacy said it was one of the strongest/worst tasting meds they had to give kids and they suggested that we disguise it in a really thick ice cream topping! We coudn't get it down with jelly or apple juice or anything but a spoonful of (it's fairly thick) carmel sauce worked. I just don't know if it's thick enough or fat free.
So glad you are all doing so well- what a birthday celebration that will be!!
Best,
Antinette Mama to Hadley
what a fabulous report on Miss Ivy!! praise God!!
ReplyDeletewhen hiding meds -the 1st thought was grape juice. :) I saw someone else recommended that too.
BRIBERY!
ReplyDeleteThat is the ONLY way I could get Susannah to take her Lasix. Oh it is nasty. Poor babies.
Can she eat candy yet? Like M&Ms??????
That is what finally got Susannah taking it. She knew if she downed the Lasix, she would immediately get a handful of "M-E-Ms."
Will she eat bananas???
Once we got S eating the bananas, the LASIX went over much better and we got to drop the potassium pills that were given with the Lasix.
I think I have blocked the rest from my memory.
Oh and I second the pill form when she is ready. Susannah takes her heart meds now in pill form. SO MUCH EASIER. No bad aftertaste and when we travel, no need to keep them cold. She just takes one baby aspirin now and enalapril for heart function.
So glad Ivy's cardio report was so great!!!! PRAISE GOD!!!!
OK, well, I started reading at the top and have been working my way down ... OK, no fat.
ReplyDeleteWe were so blessed to not have to do that.
OK, I just found a chart of candy LOL!
These candies don't have fat:
Starburst Jelly Beans
Good and Plenty
Jolly Rancher Gummies
Swedish Fish
Sour Patch Kids
DOTS
If she likes sweet treats, back to my idea of bribery, maybe you could use some candy to "sweeten" the deal on the meds. Of course you would have to cut some (or all) of these up into safely-sized pieces.
I had two huge bags of the Starburst Jelly Beans that our store ran on clearance. I'd send them to you but my crew found them, and they are gone, but I did see them in the store this week (just not as cheap).
Can she have fat-free ice cream? They do have quite a few flavors.
What about the diabetic chocolate? They have a whole section at our Grocery store with "sugar free" candy, and a lot of it is fat free as well.
And they do have fat-free chocolate puddings (the jello brand).
And I found this link too:
http://www.livestrong.com/article/83997-lowfat-highcalorie-foods/
Sorry I know not much help if at all, but I just am torn up thinking about her trying to get those nasty meds down when her throat is so sore and she is so easily gagging. Poor baby.
(And poor Momma.)
Like someone else said, Mary, do take care of yourself. Mainly, take time to let it all out--the frustration, the wishing she didn't have to go through so much, the pain of seeing her suffer.
What about pediasure too? Can she have that? I guess it has fat though.
If she struggles with gagging after all of this, I would consider seeing a speech pathologist as they can assist with feeding/eating difficulties as well.
BIG VIRTUAL HUGS Mary,
Leslie
She is just so amazing. And her mama... well, she got the best mama out there. Because girl!!!! You are a warrior right along with that cute lil peanut.
ReplyDeleteI hope you're able to get her meds in.
xo
When SJ had to take them meds after surgery, we gave her chocolate candy. Hershey kiss after hershey kiss to get it down. Blessings and love! XO
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