Every morning we wake up hoping for good news. We hope that when we call Ruthie Lou's nurse that she will say it was a peaceful night. We rarely get that answer. Ruthie is now on 5 different seizure medications, each one in an attempt to wean off another one. The strongest, versed, has been weaned twice and then increased again because her brain will not calm down. The MRI came back normal but her neurons are so actively trying to re-wire that we can only sit & wait, hoping that the drs find the appropriate combination/cocktail of anti-convulsives. It is so incredibly hard to sit by and not be able to do anything to help your child. Chris and I are both exhausted and each day we put one foot in front of the other, hoping for some peace for our little girl. There are no talks of going home at this point, we aren't even close. It has been ten days in the NICU. We have yet to hear the cry of our little angel, have not seen her open her eyes, haven't breast fed only pumped, she eats 5mL of my milk thru a feeding tube. We sit next to her bed, talk to her, read to her, kiss her and rub her skin. As the reality of our situation hits us, we continue to do the best we can to lean on each other and remain optimistic, although that is quite easier said than done. So, once again it is a new day. We have had our moment of sadness and now we must keep moving forward, sit next to our little girl and continue to give her all of our love and any strength that we can offer. Today will be a busy day for Ruthie Lou. She is getting a spinal tap to see if perhaps her metabolism is the reason the meds are not helping as the drs would like. The results take a week so until that time, we sit and wait and let her rest. Please continue to send her your best. I was overwhelmed and amazed at the amount of support the day of her MRI and we need to continue that strength, love, prayers and healing thoughts. The journey is not over and she needs us to get her thru these days of trial and error until we can figure out her meds. We love you all so much. Thank you for being there for us thru your messages, texts, and thoughts, they continue to hold us up.
I am mama of three beautiful babes; two sons whom I have the privilege of raising and my daughter who lived for 33 sacred days.