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Im new, I just found you all through tears. Im so tired. I saw a few threads of interest to me but the questions went unanswered so Im not sure where that will leave me, lol. So enough rambling who am I? Im Renee mommy to four little girls ages 4,4,3,2. Two with significant special needs. One, our newest, Marissa, has short bowel syndrome. This is secondary to NEC, she is a 30weeker. She is 100% TPN/GT dependant 20 and 10hours respectively. She is 3years old and we are proudly adopting her. She is such a joy and we are completely inlove with her. The “high” of adding her to our family is starting to be taken over by the reality of what daily life is like. I would like to say I understood completely what we were getting into, but ofcourse I had no idea. Still my decision is firm, I wouldnt hav ethis any other way. I love this little girl with my whole heart, but now I need help! I think I naively thought I could take her away from the hospital and just give her a normal life. I thought doing all of her care would become just a part of our routine, but wouldnt stop us. While it HAS become “routine” the lagistics about going out somewhere and when we need to go on/off tpn, on/off gt feeds, meds(which she gets various ones 6times per day via g-tube) the mornings…the incredibly messy poop and puke covering every inch of her from her head to her toes every_single_morning. The ever so leaky g-tube site that was only replaced 2months ago with constant skin break down and granulation tissue no matter what I try. We go through atleast 4-6changes of clothes per day and 10+onsies in a day. Im using breastpads think ones around her site but oy its still a leaky mess. Her Drs just say shes always been that way, no matter what they do …hmmm…
We are a young active family with annual passes to disney, yearly trips to various family friendly resorts etc. We used to spend weekends at friends houses and take weekly trips to childrens museums and the like. Now that we have Marissa home I dont want to leave the house and when I do its a nightmare. She poops in the carseat almost every single time we leave the house and it goes up her back and into her shoes. I keep puddle pads in her carseat yet I still end up having to wash it when we get home.
She doesnt take much food by mouth(has the oral skills of a 6month old) but sit at the table iwth my other girls demanding food–shes never happy with her pureed option–but thats what they told me to give her–should i keep her in another room when they eat? She acts like she REALLY wants to eat–but then doesnt, or if she does she vomits) We first matched with her in Nov of this year. We were supposed to have her home by mid Dec but due to hospitalizations we didnt end up bringing her home until the first week on Jan. Weve had to more albiet short emotionally draining hospital trips since then. I want to join a support board and did join a TPN support board but its so active and Im in SUCH an overwhelmed selfish phase I feel like my life is consumed with figuring stuff out, cleaning up messes, giving meds and doing laundry that I really dont feel like I have much to give back at this point. Im just need to get my stuff out and I want to hear from other, their stories, encouragement etc. But I just dont have it in me right now to add to much else. So that said anyone have anything to say? LOL Gosh I am a nice person really, Im working on no sleep here. Marissa’s enteral feeding pump(kangaroo pet)went off ATLEAST 10times last night because she kept somehow kinking the line and occluding it. Im not going to edit this, so pls forgive any bad spelling or grammer. Thanks everyone!

I am out of the office on Monday January 28th For immediate attention please email Linday Taylor at or call her at 314-432-3000x608.


Sorry to hear about what your going through. I completely understand and there are allot of on here that do. So please don’t be surprised if you don’t get answers right away. It can take abit sometimes but since everyone is going through the same things then you know we are all giving meds, cleaning up girk ups chging lines etc. hehe

Anyway, The first thing I would reccommend is to organize your supplies.
That in itself can be overwhelming. if you need help doing this let me know I have some suggestions and I can take a picture of joel’s room so it can give you an idea. Getting that organized will save tons of time and frustration.

Life does change and we have to get over thinking that life will ever be normal again.(I speak for myself when I say that) We have been given this special task of caring for the little guys.

The best thing to do to adjust from hospital life to “real life” is folowing a schedule as close as you can. I tried to follow the one the hospital set
than as we grew more comfortable with everything than we started chging and adapting it to our schedule.

As far as the poopy diapers go have you talked to her GI docs and let them know whats going on? I let mine know everything and they are very helpful
As far as the mickey button we are fighting the granuloma also and is very frustrating. Our gi’s said we need to keep it clean and dry. It always has some leakage some days more than others. The other thing is do you have home infusion coming out at all? and are you changing her dressing to her site or are they? Ours offered to chg the dressing and I obliged without arm twisting to let them do that, You might check.

You said she has other issues have you applied for medical fragile in your state? They are very hard to get quallified through them but once you do its very helpful. It took us 4 times to get joel enough points but now we can have in home nursing care and they pay for it.

There is so much more I could tell you but don’t want to overwhelm you even more to read if you have anymore ?'s feel free to e-mail me oh and we all no about working on no sleep and having pumps go off in the middle of the night if it wasn’t one pump it was another at several times a night , we would start losing count.