[ Candi Long's "But God" Story ]

I had a very normal pregnancy with my 3rd child.  Nothing prepared me for what was to come:

Andrew Francis Long Jr. was born January 4, 2009 at 6:32am, 9lbs 1oz and 20" long.  He was perfect to the naked eye.  He had 10 fingers and 10 toes and a head full of hair.  He was everything I ever wanted in a son.

Having him so early in the morning we had visitors pretty quick.  People came and went all day.  To those of you who breastfed their children, you know how difficult it is especially with people around!  So I thought that Andrew was just feeling my stress and would not eat (or poop).  When all the visitors left we told the nurse about him not wanting to eat.  They tried giving him formula from a bottle but he refused (and still no poop).

I finally got Andrew to sleep when he started spitting up dark green bile (stomach acid).  We called the nurse in and they took him to the NICU for observation.  The next morning the NICU doctor told us that he may just have a meconium plug and that he would start eating when he passed it.

At this point I truly felt that there was NOTHING wrong.  I just knew I was going home with my baby.

BUT GOD had another plan... The doctor from the NICU came in and told us that they would need to transport Andrew to another hospital that their x-ray machines were not advanced enough to diagnose the "air pockets" they saw in his bowel.

So Angel II came and transported Andrew to Children's Healthcare of Atlanta (Elgelston). When we arrived at Egleston we were taken to a room where they sit you down and hand you a box of tissues. Dr. Helen Williams told us that Andrew had a disease called Necrotizing Enterocolitis which means Dead or Dying Intestines. X-rays were taken every 6 hours looking for any change in the bowel. When irrigating his colon they found that his symptoms got better and the x-rays were improving. His diagnosis changed from Necrotizing Enterocolitis to Hirschsprung's Disease or HD (which means there are no nerve cells in a portion of the intestine). He was scheduled for Surgery on Tuesday January 13th at 9am to remove the diseased portion of his large intestine (they were pretty sure they had pinpointed where the good nerve cells started).

During his surgery they took small biopsies until they found intestine with good nerve cells (each biopsy took 30 minutes).
They have a few phones in the waiting room for the nurses to call you with updates.  We had been told that Andrew may have to have an ostomy temporarily before they could reconnect his bowel to his rectum.  To me this was the worst that could happen!

But God... had different plans!  After 7 long hours, Andrew was left with 65cm of his intestines and an ileostomy on his right side (missing 75%).  Dr. Bhatia told us that for a good chance of survival Andrew needed 100 cm of small intestine and that he was not expected to make it... 


Andrew was taken back to the NICU.  Over the next 4 weeks we were informed of the ins and outs of his disease and that he would need IV nutrition called TPN to compensate for what Andrew could not absorb.  They placed a CVL in his chest (a permanent IV that ends right outside his heart aka his life line which he still has to this day). 

After 45 days in the hospital Andrew came home!!!  Although it was not just him.... He came with pumps for his IVs and nurses to help with his care.  My poor baby!!

Andrew has spent a total of 145 days in the hospital and many ER trips.  We have dealt with several life threatening infections with his line and countless hours of praying for relief.  He was never expected to live more than 3 months but God has decided otherwise!!  He will be 2 in January, a miracle in itself!

To leave you with a good note.  Andrew has done well enough to no longer need IV nutrition.  We have not had to use his line for anything in the past 8 weeks!!  And even better news, the doctors have decided to reconnect him and remove his CVL before Christmas!!  What a wonderful Christmas present!  I will finally have a true "cordless" baby.  All I can say is But God!

I know what you have read is a lot to take in but this has become my new normal.  I never thought I would be as strong as I am today.  But only God has that power to give you!

If you would like to follow Andrew's Amazing journey here is a link to his blog:

www.caringbridge.org/visit/andrewlong

[Submitted by Andy and Candi Long]