Emy’s PD leaked again today, so they decreased her fill volume to 18 mL from 20 mL. Please pray she doesn’t leak any more and that her dialysis continues to be effective even at lower fill volumes. Also, the white blood cell (WBC) count in her dialysis output continues to have an upward trend. Even though it is still in normal range, this value has doubled every day for the last couple of days. The team is now culturing for fungus incase that is the cause of her increased WBC count. They added fluconazole, an anti-fungal, to her PD to prevent a fungal infection. Please pray that her infection is managed with her current medication regimen and that they do not need to replace her catheter any time soon.
Today I held Emy utilizing the kangaroo care method. She picked up her head a few times to look around and reposition herself. She is a strong little lady. Thankfully, she didn’t seem bothered when I sang to her while she was on my chest (I don’t have the best singing voice).
Ezra and I show her high contrast books that Ezra’s mom suggested to help develop her eyesight. She seems interested in the books and looks at them intently. We continue to read Harry Potter and other books to her on a daily basis when her eyes are closed. We hope these supplemental caring measures let her know how much she is loved while also helping her development. It is a treasured and sacred gift to be her mother. We were reminded of that yesterday.
Yesterday, we were waiting at the entrance of the hospital to get our daily identification badges when a couple walked around the security station. The security guard stopped them and asked them to get in line for their daily badge. The mother showed her badge from the day before and asked if it was good enough. The security guard said, “sorry ma’am, even though you are discharging today, you need a new badge.” The mom blurted out, “she’s not coming home. Can I please go up?” The security officer again denied her. “But she’s dead, can’t I just go up?” She wept in her husband’s chest.
In the span of a few seconds, Ezra and I were reminded of just how fragile life can be. The days blend together sometimes as life in the NICU can be mundane (infants, by trait, mostly sleep). I was jolted out of the monotony by the stark realization that that mom could have been me on a number of occasions. The fact that Emanuela is still with us today is a miracle of God. Although she has overcome so much, we are not guaranteed tomorrow. I feel such sorrow for the mother that mourns the loss of her child. She reminds me to rejoice in the precious gift that is my daughter.
Baby Menon 
Thank you for this update, Rebekah. I have sat with it before commenting…for a week. This one got me right in the feels. I feel such compassion for the parents experiencing a journey that has a level of difficulty that I can only imagine. I wanted to give it some time and hold them high in prayer. I do so love hearing about EmyG’s personality and strength. The moments you can hold her close as she exhibits her strength are the real treasures in life. I am so grateful and take such joy in the journey that you and Ezra are willing to share so openly.
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It was very difficult seeing those parents and the grief that they held. It made me want to rush up to the NICU and never leave Emy. Of course, that is not reasonable, but the experience reinforced the fact that nothing in life is guaranteed and we need to be thankful for each moment we have with our precious daughter.
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