Newborn blood screening saved our Zion's life...

As I had mentioned before we found out Zion could possibly have MCADD when he was 5 days old...we came home from the hospital with a perfect baby boy at 4 days old. He had a doctors appointment at 5 days old just to get an extra weight check in because he had lost more than 10% of his weight. Doctors looked at him and said he was doing just fine and looked perfect. Later that afternoon we get a call from our primary care physician's office explaining that from the newborn blood screening that gets sent off to Raleigh, that they had seen an abnormality in his blood work'. She had explained from what she was told by the specialist in Chapel Hill, and said that he is not to go past 2hours of not eating. Later that day the metabolic specialist called us from UNC Chapel Hill children's hospital, explaining more what MCADD is. All I was thinking how could my perfectly healthy newborn have this? What is this? How did he get this? Why me and his daddy? He looked perfectly healthy. I was reassured he didn't need any special formulas or diet for now and to keep doing what I was doing and that the breast milk is what is best for him. I was also reassured that he would be perfectly normal besides getting hypoglycemic faster than most people would. We had an appointment scheduled to go to Chapel Hill Children's hospital to learn more about MCADD and to get more blood work taken. We came with questions and learned more and more about MCADD. We learned that for the 1st year of his life he would need appointments every 3 months. Then from then on yearly for the rest of his life. 

Our 1st scare...

Zion came out a healthy baby boy, and it wasn't until he was 5 days old when his newborn blood screening test came back from being shipped to Raleigh(something they do with all babies to look for abnormalities) that we figured out he had MCAD. If we had known in the hospital  and we knew the signs...we would have reacted very different when he had his first episode. He had his circumcision at 3days old he came back from his procedure and went right to the breast just fine. Nurses said it would be normal if he slept a little longer due to the procedure. He did sleep longer than he usually did but to most moms it wouldn't be a big deal. I had tried waking him up to eat because I was having mother intuition that he needed to eat he suckled for probably ten minutes...I felt a little satisfied and let him lay back down. My mother kept reassuring me that he was okay and babies know what they need, which they do. After dinner he started to not even wanting to latch he had such a hard time he became frustrated every time he tried to eat...my night nurses were no help mad I was still recovering from my csection. He would wake up every three hours or so and I'd try to feed him each time, we still had no luck. He soon became lathargic and very sleepy. Most children's bodies could handle going threw this Zion's body started to eat what little stored fats he did have. He soon lost more than 10% of his weight...luckily he was a big baby and he did have storred fats, because from what we know now he could have past away on us. Early that morning the lactation nurse came in and we pumped two small bottles and after those two feelings we had our baby back. From the moment Zion was born he was a fighter, and I know he will keep fighting.

Breastfeeding and MCADD

Zion exclusively breastfeeds, it sometimes is very hard on momma because of his MCADD I have to make sure he eats every 2 hours since his body is so little for now until his genetics doctors in Chapel Hill say so he cannot go longer than 3 hours to eat. In them night I have constant alarms set to wake up and wake him up to feed. He takes one to two expressed milk bottles a day mixed with his carnitine, an amino acid his body uses(all our bodies use this) to dispose of them fatty acids that get stuck in his medium chain of fatty acids. If his body does not have this amino acid he will become deficient since he uses it way more than we do.

About MCADD.

For those of you who do not know, Zion was diagnosed with MCADD. He will be a normal healthy child and be able to be active..he just can not store the fats that most people store to be able to go without food for long periods of times. The only things we have to be very careful about is when he gets sick (throwing up, diarrhea)  he will have to be admitted into the hospital and put on intravenous fluids since his body cannot hold fatty acids. He will have this for the rest of his life, it is a genetic mutation which he received from a recessive gene from Patrick and I. http://ghr.nlm.nih.gov/condition/medium-chain-acyl-coa-dehydrogenase-deficiency