The days seemed to drag on forever sometimes and I kept praying, please let my baby be home from Christmas. A couple of days before Christmas we were very close but than he started having some problems with his potassium levels and creatinine levels were increasing so our Sweet baby had to spend his first Christmas away from his family. That was hard, I mean REALLY hard.
The NICU/PCN had Santa come and visit and the babies had their first Christmas picture taken with Santa right there in the unit. What a gift! The March of Dimes even decorated cute Christmas Frames for them. One of the Nurses even made each of the babies matching blankets and hats and had them all dressed up so that when the parents came in on Christmas morning their sweet babies were already dressed for Christmas. It was comforting having such wonderful people look after him.
We went to my parent’s house Christmas Eve and I had to put on a happy face because I had 3 very excited children who just wanted Santa to come. Although, I will tell you that Jake had the hardest time. He comes across like such a tough guy but he is actually very sensitive and nurturing, he gets that from his Dad. He had to write a story for school and had to answer the question, what do you want for Christmas? Of course, his answers were pretty typical, legos, new video games, Pokémon cards but the one that still brings tears to my eyes was that he wanted his baby brother to be alright. I will treasure that sweet Christmas wish. There was a moment sitting in my parents kitchen on Christmas Eve that I began to cry and Lisa (my stepmother who I often refer in my blogging as my Mom) reached over and rubbed my back and helped bring the situation back into perspective for me. He was doing great, we were thankful for no MENKES and I have 3 other children and an amazing husband to be with. That helped! My parents went to visit him that evening and on Christmas Day I went in the morning and my husband took his parents up later that day and I went back to tuck him in that night. I will always remember the blue twinkling lights with snowflakes that the nurses had decorated the PCN and the beautiful Christmas lullabies playing on Baby L’s radio.
I don’t know what I would have done during that time without my family and friends. We relied on them so much, everything from helping out with the kids to bringing us meals. Our church family was also amazing, they arranged Circle of Love which is a group of our Church Family who would bring us meals every other day for weeks. It was so helpful with all of the back and forth from home to the hospital that we did to know that our kids always had a home cooked meal.
Excitement was coming very close, it was almost time for Sweet Ethan to come home…
More to come later!