Monday, June 13, 2011

When Gregory was born

One day old!

Two days old and a little jaundice.
Gregory was born on February 2nd, 2008. He was 9 lbs and 10 oz.Yes, I know, he's big. :) I was in the hospital for 5 days due to having a C Section and high blood pressure. The night right before we left Gregory was circumcised.  Hour or so later we got to take our lovely new baby boy home for the first time!

Leaving the hospital

We got home around 8:00 or so (if I'm remembering right) . . . got it all on video . . . got settled in . . . ate some Arbys in bed . . . and . . . fed Gregory . . . and went to go change him on his new changing table . . . and to our scared eyes his new born sized diaper was soaked with blood. You could see it from the outside. He wouldn't stop bleeding from the circumcision.

So back to the hospital where he was born and to the emergency room. I remember it was freezing out that night. They tried to cauterize it to stop the bleeding. It worked a little. But came home and the rest of the night still bleeding.

His 1st appointment with his pediatrician (at the time) was with Dr. Scharff. He was AMAZING! We were in his office for at least 2 hours where he helped stopped the bleeding, got us blanket for Gregory, did blood work, made calls and really fought to see what was going on. I really believe it is because of him we got the new born screening results back so fast.

I'll never forget being at home and finally feeling somewhat relaxed and settled in . . . we were at a hospital or doctor for the first 12 days of Gregory's life. Ugh! My mother in law, Joyce, had just stopped by to bring us some dinner and Gregory's doctor called me on my cell. He told me to sit down. I sat on Gregory's rocking chair in his room and he proceeded to tell me that Gregory came back positive for a metabolic disease called, Galactosemia. That word  sounded so weird and foreign at the time. He said stop breast feeding him and stop giving him the formula you have now and come in.
His bandages from getting blood drawn every day.

Dr. Scharff called us into his office immediately where he described it as a metabolic disease. Gregory didn't have the enzyme in his body to break down the sugar galactose. And the only way for Gregory to be born with it is for Tommy and I both to be carriers. That's why its so rare. What are the chance of two people who carry the gene producing a child? Crazy, huh?

He him self had only seen some one with galactosemia once in his 20 some years of practicing medicine and it was when he was  in med school. He was very honest of his lack of knowledge on the subject. There were only 2 doctors in Arizona that dealt with it . . . one in Tucson and one in Phoenix. He referred us the Children's Rehabilitation Services to see Geneticist Dr. Alec. He deals with metabolic diseases.

We thank the Lord for Dr. Scharff and for us getting the New Born Screening back so fast. Usually it takes 14 days and we found out in 7. Many babys with galactosemia die with in the first 2 weeks from not knowing that they have it. Galactose is like poison to there body and it attacks the liver and they get sick and die. We are so thankful that was not the case for Gregory. He was just jaundice which is affect of the galactosemia.

One week old . . . when we found out he has Galactosemia


  1. I love it that you are documenting this situation! I know that Gregory will love to hear more about how unique he is as he gets older, and you're doing a great job making sure it all gets remembered!


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