I walked in and Dr. B (the Genetic Doctor) looked at me and said, "Oh, maybe it's not so bad, he looks like you" Excuse me? I sat down, and she began to go over her "findings":
* Skin tag on right chest
* Widely space nipples
* Bell shaped chest
* Thick Wide Tongue
* Coarse fascies - Coarse facies simply means that the facial expressions are coarse, which could represent congenital hypothyroidism or mental retardation
* Severe Hypotonia - Floppy Baby Syndrome - Low Muscle Tone
* Redundant Skin over the neck bilaterally - we would later find out that he had extremely low levels of copper in his body
* Increased elasticity in skin - his skin was so loose you could literally pull it up from his legs
* Ear pit and deformed left ear
* Hypertelorism - is an abnormally increased distance between two organs or bodily parts, usually referring to an increased distance between the eyes and often signs of mental retardation
* Congenital hydronephrosis of both kidneys - oh, yeah, that was the one thing we expected
Wow, that was a lot to take in, I went back to my room, all alone and cried myself to sleep. The next day, I spent as much time in the NICU with him as I could. The kids came up to meet him.
The next day my husband went back to work because he wanted to save his PTO for when Ethan came home. The kids went off to school and Anna Claire went to the babysitter and I drove myself to the hospital. Crazy, I know but nothing was going to keep me from him. I would go everyday from 9-2 and come home and get the kids off the bus and Chris would go after work. That is how our days went for 5 long weeks.
Ethan was doing great in the NICU, I was pumping breast milk but they would only allow him one bottle of breast milk a day because his copper levels were so low he needed special formula to make sure he was getting enough copper. He spent his first 5 days in the NICU and was moved to the PCN which is a step down NICU. The nurses had warned us that he might stop eating and would need a feeding tube. Actually, they initially told us he probably wouldn't be able to even take a bottle due to his hypotonia and tongue issue but we proved them wrong at least for the first four days. On the fifth day he stopped taking the bottle, pretty common in preemies and I would quickly learn the rollarcoaster ride that a parent of a preemie gets to take.
We were so glad to be moved to the PCN. It was a much more casual atmosphere and we were put in a little corner with 2 other babies. I spent so much time in the PCN holding and loving on Ethan that I became friends with his roommate Baby L's Mom. We watched out for each other's babies if one of was not there. It was comforting having someone to share your fears and joys with. My Bestest BFF's little girl only spent 2 weeks in the NICU/PCN but we did it together and she was a rock for me. Her older daughter had also been a preemie so she was an experienced preemie Mom. During this time a lot of my friends would call to check on me and I just didn't want to talk to anyone except Baby L's Mom and Anne Marie, it was easy that way, there was no pressure, no questions just support. It was what I needed and am so thankful that God put them in my life at that time.
Everything was going as expected as far as his eating, he would take some from a feeding tube and some from a bottle. We tried breastfeeding but his tounge just couldn't catch on so we decided to stick with the one breastmilk bottle. I had breastfeed all of my other children so this was very hard for me. I really feel like a missed the bonding that a mother has with her baby when she breastfeeds.
Speaking of that cooper situation, I was visiting Ethan on a Sunday when he was about 2 weeks old when the NICU Doctor called me over to her desk to tell me they suspected that Ethan had MENKES. I had never heard of it before, and so I asked her, "What does that mean? Can he take medicine for it? Is there a cure?" She only replied to me, No, it is very bad and most MENKES children do not live to be more than a year old. I signed off on the test to be done by the National Institute of Health and was told it would take up to 14 days. 14 days of pure agony. I researched MENKES and it was bad, really bad. I was back to not wanting to bond anymore with my baby because I was so scared he would die. We prayed and I made deals with God that I never thought I would ever make. I laid in bed at night or at my 4 am pumping sessions begging God to take me instead, don't let him have MENKES, God, just take me.
Ethan's test came back negative for MENKES. Ok, back down on the roller coaster, a week later I was in the PCN with him and he was having a great day. I went home to get some rest, I was home for 15 minutes when my cell phone rang and we quickly went back to the top of the roller coaster. It was the NICU Doctor, Ethan's heart had gone into SVT and he was being rushed back up to NICU. I'm not sure how I got to the hospital, well, actually, I do know, Anne Marie talked me there. She stayed on the phone with me and got me there safely.
More to Come later....