In writing the most recent entry I forgot to add the most incredible thing that happened as the doctor was giving us the results from her lumbar puncture! Last night as I was pumping bedside, the doctor came over to relay the results of the lumbar puncture. He started by telling us all the diseases and such that they were testing for came back negative and we were immediately relieved. When he continued on about the abnormal chromosomes, our hearts fell to the floor and a numb feeling came over my entire body. Here I am pumping in the NICU next to my daughters bed, screens covering our little corner and a blanket draped over my front and all of a sudden the world stopped spinning as Chris and I are staring in disbelief...
Ruthie Lou opened her eyes! We both jumped up tuned out the words of the dr and greeted our daughter for the very first time! It only lasted a minute or so but it could've been forever! As the dr was painting a potential bleak picture for us, Ruthie Lou chose THAT MOMENT to look at us! Now I know that newborns cannot see clearly but we are certain that she was looking for us! She was telling us not to listen to the drs, that she was there and she is strong. She is on 5 different anti-convulsants and somehow she had the strength to open her eyes for us. That is a miracle! Then, today once again I was pumping bedside (always pumping!) and just as dad walked away she opened her eyes again! She seems to be choosing moments I am most inappropriate to be jumping up to see her more closely but she is one tough cookie! We keep telling her she is supposed to be resting but that little girl is a bit stubborn...Chris is certain she gets that from me! So...miracles and small victories. We got to look our daughter in the eyes, what a blessing.
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Science is an incredible thing, but hope, faith and miracles are much more powerful. The spinal/lumbar puncture that the drs performed yesterday revealed a chromosomal abnormality which may (or may not) be the cause of Ruthie Lou's continued seizures. Typically, after the cooling treatment is complete and the baby is rewarmed, it should only take a few days for the seizures to "turn a corner" and the brain to relax. However, this is not happening for our little Ruthie Lou. So, the drs are continuing to run tests and adjust/readjust her seizure meds until they can find the cause or control the amount of seizure activity that she is having. At this point, the Internet is a frightful thing as it near always reveals the worst case scenarios so until Monday when we meet with the geneticist, we are trying to be patient to hear what exactly this means for our sweet little girl. This is one of the last things that a parent wants to hear about their sweet innocent precious little baby and so Chris and I have just been processing the potential what-ifs and unknowns of Ruthie Lou's & our future. We can't begin to wrap our heads around what any of this means, the lesson in this or the "why her, why us" thoughts that are on the forefront of our minds. And until we know more, all of the questionable unknowns are irrelevant.
One thing we do know for certain is Ruthie Lou CHOSE us. She chose us to be her parents and trusted that we would love, care and protect her unconditionally. We have all along believed that she was a miracle from the moment we knew we were pregnant with her. She was meant to be here, meant for us & we were meant for her. So tomorrow, as many of you shared that she will be on your prayer lists or chains at church, we will be praying here along with you. No matter your denomination, convictions or beliefs, please pray that this abnormality is manageable. Pray that the geneticist, drs and nurses can shed light as to how to help our little angel. And please, please pray that the purpose Ruthie Lou was brought to us can be fulfilled, that she may be blessed with a wonderful healthy life surrounded by her friends and family who love and support her, no matter what this recent test result reveals. So once again, science is an incredible thing, but hope, faith and miracles are much more powerful. 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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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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