Wyatt was born on Saturday, January 9th via spontaneous vaginal delivery. We were in the hospital for 48 hours because he was premature. While we were there everything went quite well. He had a little jaundice and had some weight loss but it was nothing that concerned the doctors so we were discharged on Monday. They scheduled for us to come back Wednesday for his circumcision and a weight check.
Wednesday came along and we took him to his appointment. He had lost even more weight, weighing in at 5 lbs 5oz, despite my efforts to syringe feed him extra breast milk. They also decided that we needed to keep an eye on his jaundice. They told us to come back on Friday for another weight check and to check his circ.
On Thursday morning, I got a phone call from a pediatrician on the base saying that we needed to plan on going to New Orleans the following Tuesday to see a specialist for Wyatt. He told me that Wyatt's newborn screening had come back abnormal and that they thought he had a rare metabolic disorder. He asked me if Wyatt was acting normal. I told him yes but the question alone caused me to panic. Then he added that if Wyatt is acting abnormal in any way that I was to bring him to the ER.
By the time his appointment came along, Taylor and I were sick with worry, not knowing what to expect. They ordered some tests to confirm the diagnosis and a bilirubin. When they checked his weight he was down another ounce. They sent us home with some formula and said they would call us with the results. We had only been home for a few minutes when the nurse called us and told us we needed to bring Wyatt back to the hospital, that he was going to be transported by ambulance to the children's hospital in New Orleans. His bilirubin, which measures jaundice, was 19, which is quite high. That, with his weight loss and suspected metabolic disorder had convinced the doctors that he needed immediate attention.
When Wyatt arrived at the hospital, he was dehydrated and his bilirubin had gone up to 21. They put him under the lights and kept him on an IV to rehydrate him. They also started him on treatments for his disorder. We were in the hospital until Monday night.
We have since received confirmation that Wyatt does have Glutaric Acidemia Type 1. His body is missing the enzyme that breaks down proteins, leading to a build up of amino acids in his body. This causes Glutaric acid to be present in his blood. He is at risk for what they call metabolic episodes, which is where his body reacts badly to a virus and becomes catabolic. If he does not receive proper treatment, it could result with mental and physical consequences.
Wyatt is now on a special formula that his body can handle as well as taking medication to control the disorder. If we can control it, he will most likely live a normal life. He will always have to be on a special no protein diet.
We are very fortunate that they caught this before something devastating happened. Wyatt is now doing much better. He is such a blessing to us.
Wyatt working on his suntan.
Just hanging out after they decided he didn't need the lights anymore.
With all they were doing to him he was such a good sport.
Jane loves that she can now help feed her brother.
Wyatt 2 weeks old.
