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Monday, October 5, 2009

Ethan's Story - Part 5 - NICU and PCN Ride

Right after Ethan was born the NICU team rushed him away to the NICU for observation. We were lucky to have had the 48 hours to allow the steroid shots to work and strengthen his lungs so he did not need to be placed on a vent. I was able to go down to the NICU around 4 that evening to see him and I was so excited to be able to hold him. A NICU doctor had come to visit me in my room the night before Ethan was born to go over what to expect in the NICU and some hurdles that we should be be prepared for. I wasn't....if you have been in a NICU you know what I'm talking about. We were next to a baby who was born at 21 weeks. He was so tiny and they kept a cover over his incubator except when they worked on him. His little legs looked like pencils and when he cried he sounded like a kitten. Our Sweet Ethan was a hoss next to him at 6 lbs 3 oz! The NICU was warm, and had just enough light for the nurses and doctors to see. The noise in the NICU is something that you never forget, the sounds of the machines,beep, beep, beep and the breathing machines hissing. I don't think I will ever get the sound out of my head. The nurses were all so great and wanted me to experience everything that I possibly could. They let me change his diaper that first night but didn't want him to try eating just yet. After I held him for a while I went back to my room. My phone rang about 8 pm and one of the Nurses from NICU said that a Genetic Doctor was in the NICU and wanted me to come down.

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.




On Sunday, I went home. Anyone who has had to leave a hospital without a baby because either they are in the NICU or they went to be Jesus can you tell you that this by far is one of the worst days of your life. I had 3 other children, I knew it wasn't supposed to be like this. You have a baby, you go home, you have sleepless nights but that is how it is supposed to be. Riding home that day with my flowers and balloons and no baby was an absolute hell. But I had 3 other kids who needed me and I had to quickly adapt to having a baby in the hospital and 3 at home who still needed a Mommy.

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....

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