I am so glad to have this website and be able to read other stories that relate! My daughter was born May 6 and is still in the hospital recovering from MI surgery. She also has an ileostomy and I am told they will be reconnecting around the 25 of this month. ...my first daughter was also in for 3 weeks (not as long as this time and no surgery, but still rough). I am having a hard time with this one cuz it is such a long time and knowing she has to have another surgery is devestating!
They said she has a 'micro colon' so they have started to take the digested food out of her ostomy bag and are feeding that through her bottom half (mucous fistula) to 'train' her colon. I guess it is something quite new and hasn't been done much, but it makes perfect sense.
I am pumping and she is receiving my breastmilk...she is only getting a small amount (she is now up to 15ml every 3 hours) She is dependent on her IV.
My little one is also having problem with a nasty wet cough. She is being treated with Pulmozyme, Albuteral, and TOBI. Antibiotics were not helping so they discontinued those for a while but have now started another. It sounds terrible and she coughs up alot of thick snotty mucous after her 3 nebs and chest pt all at one time. And now she has Thrust too so she is being treated for that. Soo much for such a little thing! Anyone can check out her blog at <a target=_blank class=ftalternatingbarlinklarge href="http://jordinlyn.blogspot.com">http://jordinlyn.blogspot.com</a> She is adorable!
They said she has a 'micro colon' so they have started to take the digested food out of her ostomy bag and are feeding that through her bottom half (mucous fistula) to 'train' her colon. I guess it is something quite new and hasn't been done much, but it makes perfect sense.
I am pumping and she is receiving my breastmilk...she is only getting a small amount (she is now up to 15ml every 3 hours) She is dependent on her IV.
My little one is also having problem with a nasty wet cough. She is being treated with Pulmozyme, Albuteral, and TOBI. Antibiotics were not helping so they discontinued those for a while but have now started another. It sounds terrible and she coughs up alot of thick snotty mucous after her 3 nebs and chest pt all at one time. And now she has Thrust too so she is being treated for that. Soo much for such a little thing! Anyone can check out her blog at <a target=_blank class=ftalternatingbarlinklarge href="http://jordinlyn.blogspot.com">http://jordinlyn.blogspot.com</a> She is adorable!