The first week of Eliana’s life consisted of a 5 day hospital stay. Her blood sugar levels were extremely, dangerously low when she was first born so they whisked her away to the NICU. When I woke up 7 hours later, I had realized that I wanted to see my baby! They told me they would wheel me over to the NICU as soon as I was ready and wanted them to. I said “no, that’s ridiculous! I’ll just walk over!” so I did! It was the longest walk I have ever taken and ridiculously painful. I saw her and she was so so cute and squishy! But I hardly had the energy to hold her so I went back to my room while Erik stayed there with her.
The next few days were focused on me continuing to walk and recover (and lose all that water weight which didn’t come until WAAAAY later) while the baby had her blood sugar levels stabilized. Luckily our friend from a local church was working in the NICU and gave Eliana her first bath while I got to watch, as well as made her a cute little hat. We probably had about 60 people total visit us in the hospital and the NICU nurses kept saying that Eliana is the most popular baby they had ever had! Haha! She was popular! Only one person could come and visit her at a time and they had to be there with me or Erik. Erik was able to host most of the visitors unless I had to come in to feed Eliana.
We went to Eliana’s first doctors appointment, ever! YAY! Or so I thought…..
Eliana’s doctor weighed her, measured her length and head and then we were told really awful news.
The doctor closed the door and turned off the lights so it was dim in the room (like you see in the movies) and told us that a social worker from the state called her and told her that Eliana came back positive for a deficiency. She didn’t pass the newborn genetic screening test and she testing positive for a rare genetic disorder. I was SHOCKED. So was Erik. It was one of the worst days/weeks of my life. I felt strong deep down inside me but I felt broken on the outside. I didn’t know how, after going through gestational diabetes for the past 30 weeks, an emergency c section, a stay in the NICU for Eliana and now this. It felt like God was really calling us to deal with something special- that’s for sure!
The deficiency can cause problems in babies as early as one week. These included seizures, vision/hearing loss, mental retardation, lack of/no muscle development… all the works. We were told to immediately head over to the hospital for another blood test to verify this so she can get treatment. We went to the hospital and it seemed every single person we talked to at the hospital were also completely shocked. They had said that they never had this happen at their hospital before. One said “it must be a fluke” but the more they said how rare it was the more it made me think she did have this rare disorder.
I called Erik’s aunt who has to sons with rare genetic disorders and she was able to help me compose myself and realize that I could get through this. His aunt is seriously a warrior- both her sons have Cystinosis and one also has Lindau Kleffner Syndrome. She is my rock and has been since the past 8 years of knowing Erik. I felt blessed, in that moment to have someone like her in my life, though I would never want her to have to be in that position if she didn’t have to, she was and she did and she helped and cared. My God, how that changed my life for forever.
I realized NO MATTER WHAT I would do whatever my daughter needed me to do and I was well equipped with the army she needed to set her up with the best life possible. I knew I could be a warrior mama for this little girl.
We found out the state had opened up a case for her, she had a social worker from the state who would immediately set us up to get help for our baby girl if she needed it in any way. We learned that there is a group of people at Stanford who were waiting, prepared, for her if she needed help and that they are experts on this type of thing that I had never even heard of in my life. I found comfort in all of these things. The thing that made it worse is that I was in one of the most fragile states of my life that any young woman could ever be in- and now this was all happening to my baby.
It would be our fault if she had this.
How could she look so perfect if she had this?
And now, I was told to look out for symptoms in the meantime
Oddly enough, I was also told to “continue loving Eliana the same way you would had you not been told this. Continue her daily life as you normally would.”
But I couldn’t. I was distraught and losing my mind when I wasn’t holding her (when she was in my arms I kept it together)
My husband is seriously my rock and I don’t think I could have made it through all of this without him. He was there for yet another prick on our baby’s foot, he was there through it all.
We called close family members and let them know, Erik went to work the next day and then that weekend we stayed with his parents, visited my parents, and my grandfather blessed her with holy oil he had been saving for her- I stayed up for 6 nights total bawling my eyes out and seriously feeling attacked deep down inside of me and then the news came.
Her social worker was the nicest lady I could have ever had on my side and told me that she would be checking 100’s of times a day until the results came in. On the seventh day we were told she didn’t have a rare genetic disorder. Her case was closed and she’s 100% healthy in every way.
BEST NEWS EVER.
And now, when I look at my baby and love on her like no other, I pray and think about the families who’ve had to go through hardships like this and don’t get to experience hearing positive news like we did. I thought I had it bad but I promise you, someone else has it worse.
I got the chance to learn what it means to be thrust into motherhood in the most hectic way possible and I’m so glad God saw me fit enough and strong enough and good hearted enough to give me this experience to share with you today.
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