Two Kids and a Tubie

10/04/2023

Shes got enough energy and enthusiasm to keep us all going 😁🥰

Quick update since life has been so busy- I am doing well on TPN. I havent attempted tube feeds yet, I do eat a small amount orally but nowhere near a life sustaining amount. I am fed overnight through my picc line and free in the day to try whatever I feel up to orally/by feeding tube, which is nice. I have no pressure to force myself past what is a comfortable amount of food or tube feeds for me. Delaney is doing pretty good, she is off her tube for now. However her last Peds appointment weight showed she may need to go back on one becasue she isnt gaining weight well. She has a GI appointment today to discuss her eating habits, get a estimate of how many calories she eats a day, and get another weight. She is walking now and has been for about a month! All in all she is a spunky, silly, smart little girl.

As for Dax, he is amazing me every day with what a sweet young man he is turning into. Hes learning letters and numbers in Kindergarten, making friends, and playing hard !!!! He falls asleep in seconds once his head hits the pillow 💤💜 Delaney absolutely adores him and gives him lots of hugs and kisses when he gets home from school 😁

08/18/2023

Just a couple photos I felt beautiful in, while in the hospital.

08/18/2023

Life with my second nutritional support addition- a PICC line for TPN! I was really scared at first, but I am finally feeling a little more confident with the special care this needs. It definitely gives me more energy than tube feeds ever did. Right now I am only using my GJ tube for meds and fluids during the day, and for decompressing my stomach contents to help nausea.

08/06/2023

My most recent hospital stay...
We unnecessarily attempted formulas for 4 days, then I got a PICC line placed to start parenteral nutrition! Its been difficult, mainly because the nausea is intense and I really miss my kids ! 😢 hopefully i can successfuly cycle to less time on TPN and go home shortly.

08/06/2023

Mmmm mmm.. dinner 😆

07/20/2023

I am struggling! I don't understand how my body can go from feeling good and ganing weight to needing to drain/vent my gtube constantly and losing it all...so fast.

07/20/2023

I'm going to try to write a book of poetry about chronic illness and parenting ....

07/10/2023

In the speech therapy waiting room! Wonder what we are gonna do today for our first appointment.

07/08/2023

Crying for my coffee starts early in my kids around here 🤣 Dax did the same thing at this age.

07/08/2023

Two more days until Dees first speech therapy appointment. I wonder if they will even find out why she never wants to eat or drink more than a couple ounces. I wonder if its going to be a waste of time ? They said in the hospital that her skills with food were great. Yes. She knows how to eat and how to drink. The PROBLEM is she only will drink 3 ounces on her own and eat a couple bites of food . She LOVES food. Loves water, too! But her volume is just not enough to keep anyone even alive. This whole ordeal is like a bad dream I never wake up from- wonder when the lightswitch for eating and drinking enough will click on in her head 😛

Pic of her snuggling her bunny she got during her hospital stay 🥰

07/03/2023

The past 3 nights , deedee has been sleeping horribly. And when i say sleeping, what I really mean is she's NOT Sleeping 😭😭😭
Im actually dreading going to bed because I am wondering how many times she is going to wake up in the middle of the night and if shes going to stay up for a couple hours or not.

Sleep deprivation sucks.

06/29/2023

Staying hydrated cuz its toasty here in CA!!!
Pedialyte is what i drink and flush through my GJ tube most of the time. Ahhhhh!

Also just a short update-
Little Deedee is doing GREAT with foods and bottles. In the last week or so she has consumed more by mouth than she ever has in her whole life. She has been eating small portions of yogurt, meat, veggies, and she LOVES peanut butter. Her favorite foods so far are yogurt bark, anything with noodles, peanut butter and jelly, chicken, and bamba puffs. Shes also finished her 6 oz bottle a couple times now without the use of her ng tube. Yay baby girl!!!!
Dax is doing great too, he is amazing us by how high he can count, spelling words, and as always, being a sweet, silly, and loving son.
As for me- though my symptoms remain, I am doing well and gaining weight! I have finally made it to 100lbs! Heres hoping the scale just keeps going up for me!
Thats all for now! 🥰

06/24/2023

06/22/2023

I had a tube change today. It was routine, it was supposed to be, anyway. I was expecting routine pain, minimal anxiety... instead I feel like I've been violated. The pain was truly something else today while they changed it out for a new one. I think the whole floor could hear me scream...

Updated orders are for tube changes only while sedated.

06/19/2023

Busy day today! Getting the tube replaced took 4 hours. Left the house at 745 am and didnt get back til 1130 ish.... first we had the wrong tube size, then they ordered a baby dose of versed and had the wrong type so they cancelled the order. Baby girl fell asleep and then they placed it , we taped it up, and we are happy and home 😄 All is well! Pic just bc she was sooo cute in this gown 😆 heck, shes cute in everything !

06/19/2023

Waiting to be seen....
Shes pulled off her wristband 😅

06/19/2023

Baby girls tube fell out this evening while grandma was changing her.... to the hospital we go in the morning 😛😛😛

06/17/2023

It was time to change this little girls tape...its not her favorite thing to do as you can see by her grumpy face 😜😜😜She went right to sleep after. Now we have a fresh clean dressing, yay! Hopefully it sticks longer this time.
I used duoderm dressing on her cheek to protect her skin and tegaderm over both the tube and duoderm


time for some coffee!!!!!