ashton2005
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Update on Ashton
- Thread starter ashton2005
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ashton2005
New member
Sorry Guys I hit the enter button and it posted before i got anything typed..
Well ashton will be 4 weeks old on Sunday.. He is doing well just basically hanging out until his next surgery.. We are looking at either the last week of November or the first week of December to do his surgery it was supposed to be longer but his billirubin levels continue to rise so they may put his bowel back together sooner rather than later. We will have to wait and see.
He is still on TPN and lipids and prilosec and is getting CPT and albuterol treatments 3 times a day.. All he gets to eat out of a bottle is 15ml of breast milk mixed half and half with progestimil formula!!! Boy he enjoys it and i know he would want more..
I will update everyone again after they do surgery and hopefully we will have him home by christmas that is our one wish!! If they do surgery a little early we may have him home!!
Thanks for being so interested it is nice to have people to talk to and vent to!!
Christi
Ashtons mommy
Well ashton will be 4 weeks old on Sunday.. He is doing well just basically hanging out until his next surgery.. We are looking at either the last week of November or the first week of December to do his surgery it was supposed to be longer but his billirubin levels continue to rise so they may put his bowel back together sooner rather than later. We will have to wait and see.
He is still on TPN and lipids and prilosec and is getting CPT and albuterol treatments 3 times a day.. All he gets to eat out of a bottle is 15ml of breast milk mixed half and half with progestimil formula!!! Boy he enjoys it and i know he would want more..
I will update everyone again after they do surgery and hopefully we will have him home by christmas that is our one wish!! If they do surgery a little early we may have him home!!
Thanks for being so interested it is nice to have people to talk to and vent to!!
Christi
Ashtons mommy
Sounds like your little guy is quite the trooper! I pray that he is able to be home for his first Christmas. Continue to stay strong for Ashton and each other - I can't imagine how hard it must be to see your baby having to go through all of this - it just isn't fair! We will be sending good thoughts your way - take care.
Congratulations on your new bundle of joy, Ashton.
I know what you are going through and how you feel. My daughter, now 4 (born 9/23/01) went through the same thing your son is going through. The bowel obstruction, 2 surgeries, 8 weeks in the NICU, meds, and much more. I'm glad to hear that everything is going well. As much as it hurts to see your little one this way, he is much stronger than what you think. In looking at my daughter today you would never know she had a rough start in life. Stay strong for as it does get a little easier. If you need someone to talk to, vent, or have any question please feel free to email me.
Where do you live?
My prayers and thoughts are w/you and Ashton
Angie, mother of a wonderful daughter w/cf
amitchell@kleinertkutz.com
I know what you are going through and how you feel. My daughter, now 4 (born 9/23/01) went through the same thing your son is going through. The bowel obstruction, 2 surgeries, 8 weeks in the NICU, meds, and much more. I'm glad to hear that everything is going well. As much as it hurts to see your little one this way, he is much stronger than what you think. In looking at my daughter today you would never know she had a rough start in life. Stay strong for as it does get a little easier. If you need someone to talk to, vent, or have any question please feel free to email me.
Where do you live?
My prayers and thoughts are w/you and Ashton
Angie, mother of a wonderful daughter w/cf
amitchell@kleinertkutz.com
DS was born 3 years ago with a bowel obstruction. Had surgery to fix all the twisting, blockage, etc. Developed an infection and we spent 8 weeks in the hospital, too. We had to fight every inch of the way to get him off the TPN and on formula. Things were working great, just had the battle of the doctors -- CF doctor had one idea, Surgeons another, neonatologists had their opininons, then there was the dietician and an infectious disease person all telling us different things. Then we found out DS HATED pregestimil and refused to eat, so we had to fight kicking and screaming to put him on regular formula. Once they did that, DS started getting better and we were off and running.
ashton2005
New member
Hey everyone!
To angie we live in indianapolis indiana....
It is looking like we are about 2 weeks away from surgery,,, ashton does good eating now he is on half breastmilk with half pregestimil he scarfs it down but isnt absorbing hardly any of it he just enjoys it so he is also on the TPN and lipids still.. Hopefully for now we have only got one more hurdle to cross which will be his next surgery then he can come home by the 1st of the year... thanks for everyones insight and prayers it helps a lot...
now it about waiting for surgery and hoping it all works well once put back together..
christi
ashtons mom 41/2 weeks with cf
To angie we live in indianapolis indiana....
It is looking like we are about 2 weeks away from surgery,,, ashton does good eating now he is on half breastmilk with half pregestimil he scarfs it down but isnt absorbing hardly any of it he just enjoys it so he is also on the TPN and lipids still.. Hopefully for now we have only got one more hurdle to cross which will be his next surgery then he can come home by the 1st of the year... thanks for everyones insight and prayers it helps a lot...
now it about waiting for surgery and hoping it all works well once put back together..
christi
ashtons mom 41/2 weeks with cf
Is he getting any digestive enzymes with his formula/breastmilk? We started out with half a capsule of pancreacarb and then as they increased his formula, we increased his enzymes. They also let us give him pedialyte about 15-20 ccs to keep him used to eating, hydrate his mouth... We had to give him enzymes with a tongue depresser and babyfood bananas.
ashton2005
New member
As of now ashton is not getting any enzymes due to the fact that he is not absorbing any of the breastmilk/formula that he is taking he is dumping almost all of it out of his stoma so he is relying completly on the TPN which does have some vitamins in it....
christi
christi
I live in Louisville, KY. Is Ashton in the NICU at Kosair in Louisville?
The progestimil formula did not seem to work at all for my daughter. Once I got her on breast milk (which I was told by the doctors that it would help heal her faster after her surgery) and off progestimil formula she did much better. She was put on enzymes 1/2 capsule w/applesauce.
Angie
mother of 4 year old w/cf
The progestimil formula did not seem to work at all for my daughter. Once I got her on breast milk (which I was told by the doctors that it would help heal her faster after her surgery) and off progestimil formula she did much better. She was put on enzymes 1/2 capsule w/applesauce.
Angie
mother of 4 year old w/cf
My daughter went on enzymes as soon as she could take breastmilk after her surgery from a small bowel obstruction due to meconium ileus. She must have been a week old or so. I used creon 5 and would open the capsule dump it into a medicine cup stick my finger in her mouth to get some of her saliva on my finger then stick my finger back in the medicine cup to get 1/2 a capsule stuck to my finger. I would place the beads on the inside of her mouth close to the back and immediately nurse her(I breastfed). The breastmilk would wash most the beads down. We did this for a long time until I started putting them in applesauce when she was more able to swallow. Of course i always washed my hands with antibacterial soap before I stuck my finger in her mouth . I guess I don't get how Ashton would absorb breastmilk or formula if he didn't have the enzymes. Oh and I always checked my daughter's mouth after I nursed her to make sure no enzyme beads were in the inner parts of her mouth. I was told if that happened often enough it could irritate the child's mouth and cause the skin to break down. It never happened to my daughter . My daughter has always been great about taking her enzymes and can swallow huge capsules whole since she was 2. Adults are always surprised when they see her do this. I guess kids get used to what they need to get used to.
rebecca(mom to Sammy 7 no CF and Maggie almost3 with CF)
rebecca(mom to Sammy 7 no CF and Maggie almost3 with CF)
My guess is that he's not absorbing the breastmilk or formula because he's pancreatic insufficient and needs enzymes to digest it. That's usually what causes a bowel obstruction -- the meconium illeus gums things up 'cuz of malabsorption issues. The enzymes would break down the fats in the formula and breastmilk. Usually in older kids there's a cf diagnosis because of failure to thrive -- not absorbing nutrition from the food and once they're on enzymes, they begin to gain weight. I too find it odd they don't suggest enzymes. Are you at a children's hospital or CF accreditted facility?
ashton2005
New member
hello again everyone!! Just wanted to clear up why Ashton isnt absorbing breastmilk and or formula.. Ashton did have a bowel obstruction but this obstruction caused part of his bowel not to form completely. The area that did not form completely is so high which makes his stoma high that he does not have enough intestine to absorb anything that he gets so he is gaining weight and depending on the lipids and TPN through IV. They will go back in, in about 2 weeks to re connect his bowel where it didnt form and then slowely start him on oral feeds and the enzymes that he needs they dont want to do this now because he wont even absorb the enzymes due to lack of intestinal area to break food down and absorb it.. Everything right now that ashton takes in comes back out looking exactly like it did when it went in....Hopefulyl everyone understand why he isnt absorbing things now.. Basically they said that they usually dont see stomas have to be this high but thats due to where his bowel didnt form...
christi
ashtons mom
christi
ashtons mom