I got a letter from our social worker. She did some research for us and she thinks she knows how much of JJ's colon was removed at birth. She thinks it was 5 1/5 inches. I will not know unitl the GI appointment (can not beleive we still have to wait until October) to find out what this all means. Is it a lot? A little? I hate having info and not knowing what to do with it!!

BBB Triplets Born 2003

Here's what I know about it. If he only had part of his colon (and not his small bowel) resected he is better off. The length of a (term) newborns colon is @ 40 cm or @ 15.6". The colon length approximately doubles in the last trimester, so depending on when the babies were born he probably had @ 30cm or @ 12 " at birth. So he probably had less than 50 % of his colon removed. I don't know what percentage of the colon needs to be removed in order for him to be dx w/ short gut, but over 50% of the small intestines removed is considered short gut. The good thing to know is that a preemie who has not finished developing yet has a remarkable capacity for growth of the colon and adaption.
Do you have any idea if it was one contiguous segment or various segments removed ? Do you know if he had any small intestines and/or his ileocecal valve removed ? the ileocecal valve is very important to have ! Do you know if he was septic ? How many times ? Do you know what stage NEC he had ?

Sorry you are looking for answers and I am just asking more questions ! Hopefully the GI sr will have all of his records right ?? I am guessing that the GI will want you to do testing on his stools. You look for pH, for glucose and blood in the stools. We tested every one of Braden's many stools at home for each of these thing for a long time.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

Kara
Who is the GI you are seeing ? Would you like a recommendation from our GI dr here ? We are seeing Braden's dr today he grew up in So Ca and knows a lot of drs there.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

Do you have more info yet ? Does the GI dr have it ?

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

The GI doctor has made a request to the hospital to get the records. I think he will have them in time for the appointment. I think he still has that important valve thing. It starts with an I? I read through some of his partial medical records that I just received and they state that the hospital treated him for presumed sepsis. What ever that is! His first social worker said he thinks that a part of his small intestine was removed also. Hopefully not. We saw a nutritionalist and she said that if it is only his colon than he will be fine. He might just turn out to be alright. His medical records say "short gut" though and that confuses me!
What good doctors have you seen down in So Cal?

BBB Triplets Born 2003

I hope you get more info soon ! It must be driving you crazy ! I know it would be doing that to me, even after 8 years of wondering what is on the horizon with Braden, it still drives me nuts . The ileocecal valve is the thing that starts w/ an i . They will often treat NEC as suspected sepsis, because that way they will have the heavy duty antibiotics needed to treat sepsis vs those needed to treat 'just' NEC. If his bowel was perferated (and therefore the surgery was needed) then he probably was septic. Sepsis is a very dangerous systemic infection in the blood stream. Hopefully if he does have part of his small intestines removed, there is not much gone. The segments(s) they removed are important to know too.
Did the nutritionist talk to you aout electrolyte imbalances ? That can be a problem with babies with chronic diarrhea.
Do you have a list prepared for the GI dr ? Would you like me to help you prepare a list ?
We haven't seen any GI drs in CA, but one was recommended (by Braden's dr) to us when we were on vacation in San Diego. The GI dr grew up in southern CA and has a lot of connections there, so that is why I though he might be able to recommend someone.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

I am so mad about the nutritionalist appointment we had. It was the biggest waist of time! I told her that my son had chronic diahrea and had some of his colon removed and she looked at me like she could not figure out why I was in her office! She asked me why I came!!! All she did was print out some info on reflux and hand it to me. It was not even helpful. She told me that it was just fine that JJ was below the 5th percentile for weight and size. What? Just fine? Then why the heck did I drive over an hour to hear that! She told me that the colon absorbs water and electrolytes. At least she knew that! So, I asked her, "Then he must not be absorbing all of it then, right?" "Right" she said. So, then what? What the heck am I supposed to do about it? She said nothing. Just keep and eye on him. I have been keeping an eye on him!! He has not gained any weight since his last appointment (5 months ago),he was 19 pounds at 12 months and 19 pounds at 15 months and he has chronic diahrea. Don't you think this is a problem? She said only if you hate changing all those diapers! She did absolutely nothing for us. I walked away confused and empty handed. She even asked one more question about why we were refered to her? I hope the insurance pays for that since we never should have been there in the first place!! Do I have to all this on my own?? Or is my kid just fine and I am over reacting??
Oh, she told me to feed him a high fat diet. OK, I can do that. She suggested adding a lot of butter to his diet. And clog his arteries so early?? Ahhhh...I am so confused!
Then, I got lost for 4 1/2 hours comming home. The cell phone broke, no one could give me directions, I ran out of gas, the boys screamed the whole time! I left the office at 4:30 and finally arrived home in tears at 9:00pm. I finally reached my husband at home by calling collect at a pay phone while leaving screaming babies locked in the car. My husband had to come find me and rescue me.
What a complete waist of a day!

BBB Triplets Born 2003

I don't blame you for being angry with the nutritionist and for being so frustrated with the whole day . Your insurance should pay for the appt with the nutritionist, I would be very surprised if they don't. You are right to be concerned about his not gaining weight but don't despair there are things you can do ! Is there a children's hospital near you ? I would contact them for an appt with one of the nutritionist who sees patients at the hospital's GI clinic. Is that where the GI dr you are seeing is at ? A clinic at your local children's hospital ? The hospital may have what is called a 'failure to thrive clinic' not that it necessarily applies to you, but...they specialize in babies who are having problems growing for many different reasons KWIM ? We see, as part of Braden's 'team' of drs a GI dr who specializes in nutrition, he also has his main GI dr and a GI dr who specializes in liver disorders.
You may want to bring a tape recorder with you and your husband if you can to the first GI appt. Otherwise a lot of what is said could be forgotten, interpreted differently by you and DH or not completely explored to your satisfaction kwim ? It can be really difficult to take it all in especially on the first visit to a specialist.
I would also write down everything you want to talk to the dr about, so that you can get all of your concerns addressed and questions answered. I still, after 8 yrs, forget at least one thing every time we go to an appt (unless I write them down) and we have literally been to hundreds.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

Thanks for the response. I have some questions for you that I will ask when I get back from the clinic today.
We have a genetics appointment today after the IUI. The boys are being checked for fetal alchohol. I also want them tested to see if they are identical. I am curious.

BBB Triplets Born 2003