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.
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Yesterday marked a really hard day for Chris and me as we needed to take care of errands for Ruthie Lou and for school, so it was the first time we could not spend our entire day with her. My heart ached without her and every time we saw a family or baby or pregnant mama, the tears would pour. It's amazing the heartache you feel when your baby is no longer inside you, yet you are unable to have them with you. It is just devastating. Chris is an amazing dad, husband & person as he just holds my hand or hugs me and reminds me that we are a strong family, a positive family and that Ruthie Lou is safe and being taken care of. And this is all the while he struggles with the same sadness as I do. So, when we arrived at the NICU, it was finally his turn to hold little miss Ruthie Lou. He had waited so patiently the two days before as I held her while we waited for her MRI. We wanted her feel the place she had been the safest the last 9 months and hear my heartbeat, smell my skin. The nurses laid our little angel in his lap and I could see the relief pour out of him as his shoulders slumped, he leaned back and closed his eyes for the first little "nap" daddy and baby would share. The entire pregnancy Chris spoke most of his excitement to nap in his recliner with little Ruthie Lou and as he sat there with her yesterday I could see him visualizing we were home in our own space, it was pure beauty. I never wanted to leave them but when I returned from pumping, there he sat in the same spot still holding her, having a little daddy talk with her. It was an amazing moment for him and for me, as well.
Happy One Week Birthday, Ruthie Lou! The fun news for today is Ruthie Lou opened her eyes last night! Unfortunately, it was the middle of the night so only the nurse saw but it was progress! On the other hand, she is still in transition from her warming treatment and had to be put back on one of her seizure meds last night so she is back to peacefully sleeping for a few days... Many of you have asked when Ruthie Lou will be coming home and I wish we could tell you. The nurses tell us to celebrate the small victories and not to get too overwhelmed with the big picture and so that is what we are doing. Yesterday was a BIG day for Ruthie Lou, her second ambulance ride to her first MRI, it takes a lot out of a newborn! So while her MRI looks good and we are SO gratefully relieved, our little girl has quite a recovery ahead of her. We were fortunate to have a brief phone conference with one of Ruthie Lou's doctors this morning and at this point next steps are weaning her off some of her seizure meds which they will attempt on Thursday. After that, they can reassess and go from there and begin to treat her as a new baby learning to feed, move, cry, etc. It looks like she will be here at the very least a week longer or maybe even two. At this point, Chris and I can only think one day at a time because the big picture is unknown and that is overwhelming right now! So, that said, we are moving ONE DAY AT A TIME and celebrating the small victories. Today our daughter is getting healthy, in safe hands being taken care of by the best team and for that we are so grateful!
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Amie LandsI am mama of three beautiful babes; two sons whom I have the privilege of raising and my daughter who lived for 33 sacred days. Archives
May 2020
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