This next part I have had to retell so many times it just comes out automatically like a script Ive practiced over and over. I have a list of dates memorized from when she was newborn that led up to this, but typing it all out and reading it back never gets easier. Its so easy to tell doctors and medical staff because its just facts. But really thinking on it and realizing what we have been through and what our little girl has been through is nothing less than amazing and a miracle, and of course it pretty much always ends up making me cry.
In the past 6 months our lives have changed drastically. B was a normal baby, happy and always smiling, easy to take care of, loved everyone and was just the best thing that had ever happened to us. We went on vacation to the beach, visited family back at home in NC and everything was perfect, just like I always thought it would be. Then in a totally unexpected twist we realized how much we had taken for granted.
On August 29th, our daughters 10 month birthday, we found out that she had a fairly large brain tumor which was causing hydrocephalus the pressure from which caused a global brain stroke just three days before the tumor was able to be removed. Luckily the tumor came out completely and after many scans and MRIs she is cancer free, but we still are dealing with the aftermath of the stroke which did more damage than we could ever have imagined. She has a trach to breathe, a g-tube to eat, a shunt to drain excess fluid from her brain to her belly, and she has a port-o-cath for any treatments she might have to go through. Luckily we did not have to go through chemo or radiation, but it is still a hard lot to deal with. She went from being a perfectly normal developing 10 month old to a newborn hooked up to countless machines and undergoing many treatments. But she is strong, and determined and stubborn, THANK GOD. She is progressing, slowly but surely, however it will be a long road to finding out whether or not our little miracle tumor trooper will ever be back with us 100% recovered. Our perfect little girl was taken away from us and we dont know if we will ever get her back. We are so thankful that we still have her, being in the PICU at the childrens hospital we saw many little ones lose their battles, and saw many families mourning children that had not even made it to highschool, but that doesnt take the pain away from our thoughts, and doesnt make our memories any less traumatic. No mother should ever have to see her baby, not even a year old, on a table with wires and tubes before she had even been able to say Mama. No parents should have to sit in a meeting room and see an MRI covered in white, showing the drastic brain damage their 10 month old has suffered, and be told that we would be lucky if she even woke up again. Its moments like that, they make you look back and realize how good you had it just a week before and look forward and realize you have no idea what the future holds for your child.
After spending almost 2 months straight in the hospital from Aug 29th to October 18th, we came home and tried to get settled in to our new life, trying to make a new normal. It was definitely hard. My normal now is scheduling countless doctors appointments, making sure B gets her medical supplies on time, making sure her medicines are refilled and keeping up with insurance calls and supply companies and therapy visits. We have four amazing nurses that take care of B 24/7 so that we can in fact get back to a normal life. I was a stay at home mom and took her everywhere I went, so it was and still is super hard adjusting to the fact that I cant take my little girl everywhere I go anymore.
After all our trauma and hardships, we found out December 8th that we were pregnant again. A bit of a surprise but a welcome one, our house needed some excitement, some GOOD excitement. And we got all the excitement we could have ever wanted because at my first ultrasound at 7 weeks we found out we are expecting TWINS! Now that was a bit of a shocker, although I feel like I somehow knew, T was definitely not expecting it and if you ask him now he is still probably in shock. So once again in July/August of this year we will have to find a new normal, but until then we are enjoying our current normal and taking NOTHING for granted.
