Alright guys, fingers crossed THIS is the time! 🤞 I had another shunt revision surgery today (my 8th in the last couple months). I now hold the record for the most complex shunt, complicated placement, and most components that they have ever placed. Not a contest that I set out to win... I would have settled for a participation ribbon. But we are hoping that the next few days will show that I am well enough to return home after a month in the hospital. .
But anyway, I just really wanted to give a huge shoutout to all of the vloggers, bloggers, and advocates out there that are pushing through their own health complexities to give a voice to their communities. I can tell you first hand just how much of a sacrifice that is. Special props to daily vloggers! You are a rare breed! I can’t even imagine 💜 Guys these people deserve a round of applause 👏 It is NOT EASY!
Dear feeding tube,
I never wanted you. At first, I was convinced you were going to ruin my life. That first week we were together was absolute hell, and I thought I was right. You were a mistake, and I hated you.
Then I started to get to know you. Slowly, you began to change my mind. Maybe this arrangement wasn’t so horrible after all. I learned your quirks, I cared for you every day, and you quickly integrated yourself into my routine and my life.
I realized that you were helping me too. Feeding my body the nutrition it so desperately needed and that my stomach so traitorously rejected. I began to feel better, stronger - and I knew it was because of you.
The day you became a button, my love for you grew. You were no longer uncomfortable, unwieldy, and unfashionable, and you became more a part of me than ever before. You are, dare I say, cute. Advocating for you was worth it.
Today, you’re so normal and natural and part of me that I can hardly imagine my stomach without a tube through it. You've given me my life back and helped me live it. If a feeding tube is the price of life, I’ll gladly pay it. You changed everything I thought I knew about feeding tubes and the people who have them. I know If I could go back, there is little I would change.
I still don’t want you, but I’m so, so thankful for you.
Happy One Year Tubeiversary, little friend.
Hi everyone:) So September is chronic pain awareness month & I thought I should post about it since I deal with it everyday. My chronic pain started when I was diagnosed with Psoriatic Arthritis at the age of 6. My joints would always hurt and then I was diagnosed with Crohn’s disease at age 11 and I really found out what chronic pain was like. •
I’m 20 now and my chronic pain has only gotten worse because of my joint pain, Gastroparesis, Intestinal failure, Crohns and my stomach ulcers. •
I know that there are soooo many people who suffer with chronic pain and I hope that each an every one of you reading this can get it under control ❤️. Don’t ever let anyone make you feel like your pain doesn’t matter, because it most definitely does! & never feel ashamed to talk about it and to be on medicine for it! •
Thank goodness for my pain management doctors at Childrens. They really listen to me and understand how much pain I am in on the daily. One of my current problems is dealing with the constant joint pain, so I’m going to talk about IV Tylenol at home. I did it in the hospital and it helped a lot of my neck pain and then headache that comes with it. Fingers crossed they let me do it!! •
•#chronicpainawareness #chronicpain #hospital #chronicillness #pain #gastroparesis #broviac #feedingtube #gtube #crohnsdisease #chronicpainawarenessmonth #psoriaticarthritis #arthritis #notfun #sick #intestines
I’ve said it before and I’ll say it again: I don’t think that there’s a more comforting place for a baby or toddler on the spectrum than the sling. Two years old and still taking sling naps ✨thanks @wildbird #mywildbirdcotinga
For some people having a feeding tube would mean it’s the end of their lives; for me it’s just the beginning
I am incredibly honored and excited to share this blog post from @canuckplace
Children's Hospice! I had the privilege of speaking with the team about THD and our clothing recently!
Featured in this article are two of our Reps: Maddison and Lochlan and our client who sparked the conversation: Lumina.
Thank you so much for all of your support Canuck Place! 💙🎉😍 Read The Post:
Hey guys! We are finally open again after catching up or orders and a little vacation time ☺️ Feel free to message me with any questions and placing orders #feedingtube #tubie #gtube #pads #open
It been a rough 24 hours. Days I can’t really make it off the couch are still tough on me mentally. It’s hard to watch my husband go to work day after day while I feel like a burden who’s not really contributing to society, just surviving. I have to continually remind myself my job right now is to take care of body and work with the cards I’ve been dealt. I cant dwell on the uncontrollable and must keep fighting, because that’s what’s most important. Luckily Maples always down to spend a day snuggling 🖤💜🍁 .
#chronicpancreatitis #chronicdisease #gastroparesis #feedingtube #gjtube #germanshepherd
A new born diaper and a gastro/jejunal feeding tube - the crazy thing is Maddison had already celebrated her first birthday when I snapped this picture. We were still in the hospital and I wanted to remember that at one year or age she was so small that she could wear newborn sized diapers. Her growth was extremely delayed, and her reflux caused her to lose so much weight. Feeding into the jejunal portion of her intestines would give her stomach a break and her tube feedings would stay in her body. This would allow her to absorb her nutrients and calories without refluxing then out.
J tube feeding gave Maddison her life back. It gave her the energy she needed to recover from her failure to thrive, to actually turn around and THRIVE! It has given her the time she needed to grow and strengthen the muscles in her abdomen.
She hasn’t completely grown out of her reflux, but we’ve made great progress.
I get asked a lot if Maddison has a nissen fundoplication (wrapping the top of the stomach around itself to keep contents inside) and no, she doesn’t. Because Maddison has always been able to protect her airway (which is surprising because of her immature swallow, and her severe reflux, she had never had pneumonia) her GI didn’t feel the need to do such an invasive surgery before giving he the chance to grow out of her reflux herself. She wasn’t at risk of aspirating so it was safe to wait it out. Although Maddison’s reflux isn’t completely gone, we’ve been able to see her manage it better with medication. She’s even at the point where she can orally eat 20ml of baby food and keep it in her stomach.
I’d love it if Maddison had the ability to eat all of her calories by mouth. But that isn’t how things are. We have the feeding tube, and I am incredibly thankful for it. It’s work yes, but it’s also convenient. I don’t worry about her taking her medications, I don’t worry about how much water she has had to drink, because I have full control of what goes through her tube. This feeding tube gave Maddison a second chance. Link to the blog post I wrote last year about switching to g/j tube feeding in my profile 🙌🏼
"I'm grateful that my beautiful tubie has stopped vomiting since starting Nourish!" -- Julianna G.
Thanks for the kind words!
✨I’ve never realized how weird belly buttons are until I sat down and edited this batch of photos✨
But hey! The new Tubie Maker Feature is up and ready for your thoughts! 🎈
Have you ever used Bella Madalyn’s Tubie Pads? They are SUPER soft!
Head on over through the link in my bio and hear what Kaitlin, the creator of @bellamadalyn
has to share and check out her shop! She even had a giveaway happening on her page right now! So get on that! ✨
Some people struggle with weight gain some people struggle with weight loss. What would you say when I told you it’s the same struggle. There are people who no matter what they do diets, or exercise can’t lose weight, or maybe can’t lose as much as they’d like. On the other hand there are the people who struggle to gain weight that no matter what they do or how much eating they do they can’t gain the weight. I personally am on the side that I can’t gain proper weight, no matter what I eat or change of diet or exercise I can’t put on the amount I want. I struggle to gain those 5lbs, just like someone might be struggling to lose those 5lbs. What I don’t like is when people say to me things like ‘you’re lucky you can eat what you want’ ‘you’re pretty cause you’re thin’ this isn’t all true. Number one I eat whatever I can to give me weight gain and nutrition, and sometimes I don’t even have an appetite for a few days or even a whole month when I’m sick! So my weight and health will plummet. Eating whatever I want is not all rainbows in sunshine. ‘I’m pretty cause I’m thin’ I can’t stress this enough that is not true. Some days I feel to thin I feel like a walking stick and it does not feel good! I don’t have many curves I’m pretty much flat everywhere so don’t say to me that I’m pretty cause I’m thin. The struggle from weight loss to weight gain is just the same. Don’t belittle me for being thin when we are fighting the same fight just opposite sides. #cysticfibrosisawareness #cfer #cfstrong #curecf #spoonie #cysticfibrosisfoundation #chronicillness #justbreathe #65roses #fundraising #cffoundation #lungfunction #lungs #hospital #transplant #lungtransplant #cysticfibrosiswarrior #port #iv #medication #cfirl #college #feedingtube #weightgain
Good news and bad news....
The good news is that the bad news isn’t cardiac related! The bad news is that Nora is headed into the OR within the next week or two. Unfortunately, her stoma (hole from the feeding tube) opened up again and has to be surgically closed. She’s fine, we’re fine... you know you’ve been through hell when your thankful that this time it’s “just her feeding tube” and nothing more. #littlemissnorarose
It’s not easy figuring medical things out. Coordinating with doctors and nurses and pharmacies is exhausting. But here I am, finally starting my IV antibiotics for this ridiculous infection. My J tube procedure is tomorrow and I am so hopeful it will help rid me of this infection once and for all. 💪🏻
#ivantibiotics #homeivs #byebyeinfection #feedingtube #jtube #hopeful #thankful
Old scars and new scars.⚡️
We survived a three therapy-session-at-the-hospital marathon, classic New England “flannel or tank top, you decide” weather and two on-street parking spots instead of expensive AF hospital parking, so I consider that a win ✌🏻
On March 27, 2018 my beautiful daughter, Henley Loren was born. She was absolutely perfect except for the congenital heart defect she was born with. Even though this has made her life extremely difficult, and she’s faced more battles than most adults, it hasn’t stopped her from being a spunky, stubborn, adorable little girl with an amazing personality. I got my red AWARE necklace for her and every other baby born with CHD, which is less than 1% if newborns. The company @awarecauses
has created a necklace for almost every cause you can think of and donates 10% of every necklace sold to a nonprofit organization to help with research, prevention, and awareness for that specific cause. In addition, they have also agreed to create a fundraiser for my daughter Henley! You can purchase any AWARE necklace you want and if you use the special promo code ⭐️ henleysheart ⭐️ you’ll get 10% off your necklace and $10 will be put into a fund for Henley. Check out their website now and get a necklace for the cause that means the most to you. . 💜💜💜
#henleylorenbeebe #babygirlbeebe #heartcondition #midmuscularvsd #phoenixchildrenshospital #hearthole #chd #congenitialheartdefect #henleysheart #henleylorensheart #readmyblog #lessthanonepercent #heartsurgery #ngtube #feedingtube #giproblems #1in100 #heartwarrior #hearthero #bravelittlewarrior #momlife #newmom #heartstrong #momstrong #invisibledisease #invisiblewarrior #heartcatheterization #awarecauses
j tube is in! I’m in the worst pain ever so we’re pumping me full of IV pain medicine but I’m so happy I don’t have the NJ tube anymore. We’re hoping I’ll get out of the hospital by Saturday but we still have to wait and we how I’m doing. Thank you all so much for all of the love and sweet messages!!!
It's how we absorb nutrients
It's how we get energy
Our guts are so important!! ..this is an example from my family...My fourth child was born early and small, his hair started growing after he took flourish, his acid reflux went away, his gas went away, he pooped for the first time in 6 months on his own... For us this was a miracle-- he can't tolerate dairy, nuts or wheat-- so finding an all natural, fresh and never Frozen probiotic, that was safe for a preemie, was impossible to find! Let alone a probiotic that was effective!! What could flourish do for you and your family?? Risk free-- 30 day money back guarantee-- You have nothing to loose-- 👉kristadewit.entegrohealth.com
#guthealth #health #acidreflux #foodintolerance #allergies #preemie #children #preemiemom #iugr #feedingtube #freshneverfrozen #entegrohealth #flourish #flourishjunior
Thank you for keeping up your fight, even if you don’t have a choice 💛 Just a reminder that you’re pretty awesome. • 📷: @joshuafooo #chronicloveclub
"I’m grateful for all the wonderful doctors who work with me to keep my daughter healthy." -- Keri V.
Posting this even though I’m self-conscious about it not being perfect, because my shoulders do their own thing when they have to be moved in positions like this. Fun stuff. (Ow.)
Enjoying the cool air on the front porch this morning, before it gets too hot to be outside. Thankful for this blessing this morning.
Shoutout to @katefarms
for the hat that 1. Helps shade my eyes and is comfortable, and 2. Is perfectly adjustable to accommodate cold packs underneath (look closely and you can see the corners peeking or on either side of my glasses, but that’s nothing)! Also, shoutout to @wildwood.church
for the Salty and Lit tank (sorry you can’t see the whole shirt here)!
Front porch: check
Feeds and saline: check
Praise music: check
Comfy hat: check
Cold packs: check
Mask to wear for MCAD (took it off for the pic): check
Choosing joy: check
Finding beauty amidst the pain: check.
heres am actual update: my body crapped put from the make shift tube and the entire thing stopped working so we went to our local er who pulled it and put a foley catheter in its place, discharging me ans telling me to go to maine med when I got REALLY sick. y'all, pots or not, my hr was in th 120s ans I was already dehydrated and didn't even so labs. by 6am the next morning 911 was here because I was in severe SVT and my Qt interval was off the wall. I went straight to critical care and spent much time there until I was admitted and had surgery the next day. I had a picc line that was removed at discharge and was again spoken about the need for a port. great but I was still normal person sick (I think) and spent the night at my parents bathroom floor puking until once again I hit SVT and I passed out briefly. I thought mu fainting during those moments was due to SVT but they said its due to my long QT. (I've had long qt for ages and have to avoid a lot of things due to it but I didn't think it impacted me THAT much.. and I. can back ip what I'm saying I swear I'm not trying to copy someone I know that has severe long qt. mine is no where as bad as theirs, its just not good right now) anyway, hours more in critical care and a other picc line. I spent the night ans went home. that might, same thing, excepty potassium was so low this tome tjat I was in tears from leg craps tjat wouldn't atop. picc team Informed the er team they need to set up an alternative line bc putting a picc in everutime I'm there can be dangerous they already had suspected a thrumbus (sp?) and I agree so they reached oit to every doctor I have and idk what the next step is. I don't want this I'm scared of it but I'm also scared I'm gonna die all because we can't get access to correct my heart. its terrifying yo think about death at 28. also I had a seizire the other day and have a contusion on my mid back and then passed put on tjr er floor yesterday face first bc no one listened when I asked for help and yeah concussion. everything hurts, I'm tired. I'm worn... I just...#hospital #piccline #piccteam #iv #surgery #gastroparesia #feedingtube #gjtube #admitted #sick