Wednesday, August 27, 2008

Two Steps Foward, One Step Back

The pathology test came back today indicating that it is possible that Ryan may have Hirshprung's Disease. His biopsy has been sent out to Children's hospital. We should have their final word within a few days. For now, Ryan will remain in NICU.

For those of you who need to know what Hirshprung's is (I know I did):
Hirschsprung's disease is a condition that affects the large intestine (colon or large bowel) and causes problems with passing stool. It's present when a baby is born (congenital) and results from missing nerve cells in the muscles of a portion of the baby's colon.

Hirschsprung's disease occurs in one in every 5,000 babies born and is responsible for one-fourth of intestinal obstructions in newborns. It's five times more common in boys.

Normally, as a baby grows in the womb, bundles of nerve cells (ganglia) begin to form between the muscle layers along the length of the colon. This process begins at the top of the colon and ends at the bottom (rectum). In children with Hirschsprung's disease, this process does not finish and the ganglia do not form along the entire length of the colon. Sometimes the cells are missing from only a few centimeters.

Surgery is the only proven, effective treatment for Hirschsprung's disease. The procedure is called pull-through surgery and involves removing the section of the colon that has no ganglia cells, then connecting the remaining healthy end of the colon to the rectum.

On the bright side, Ryan is still eating and passing gas and stool.
Jeff and I were with Ryan for his 11a and 2p feedings. We'll be with him again at 8p. We really just needed the rest after receiving the news. Although, as I write this... I feel guilty for not being there for his 5p feeding (it's 10 minutes after 5p right now).

And so we move forward - one day at a time. I really had my hopes up that he would be coming home this week. It's hard to imagine that it could be another week (or longer). We really won't know until we hear back from Children's Hospital.

God give me strength. I feel like like I'm breaking.

3 comments:

Anonymous said...

Melissa, you have way more strength than you realize! God will get you through this, you'll see. We keep praying for all of you.

Anonymous said...

Melissa and Jeff- Stay strong and know that my thoughts and prayers are with you! Ryan is such a beautiful baby! I am here for you if you need anything.

Anonymous said...

Stay strong Melissa! Ryan is in the best care and you will get through this!!! Let me know if there is anything I can do. Love, Laurie