Thursday, December 31, 2015

Holidays & rounding out 2016!

Hello there! Wow, Danielle came home and our December FLEW by! We were so excited to get home and get into a good routine again, not really knowing what that would look like I am SO excited to tell you that it went better than we could have even imagined!
         I truly mean it when I say this in every meaning possible, We.Have.Our.Girl.Back!!!!! It feels so good. Last year when we came home, you probably have heard me say before, we were honestly scared. The Danielle we had was SO different then the Danielle we always knew and it just really felt unsettled. We of course did every single thing in our power the entire year to try and figure her out, try and figure out what was going on and we never had any answers. Everyone would tell us, 'oh, she's older now and understands more and just isn't as tolerable of recovery with what she just went thru.' Or, 'her body just needs time'. Or, 'she is really fine, everything checks out, you have no reason to be concerned, just relax and don't worry as much.' Well for us to not worry is kind of like saying, here's a sucker to a kid and not have them want it. Truly worry happens 100 times over in our minds daily, if not more.
So we would go back to the drawing board, what was Brad and I, and talk over and over again about what could be going on. It was very exhausting. It was very frustrating. It took every single ounce of him being strong for me and me being strong for him, for us to keep it together, honestly. But it didn't break us. We didn't break. I'll be honest, we shed tears. We got angry. We got on our knees and cried out to God to help us, please help our girl. I truly think it was a test. It was a test of us and would we get thru..... It was a test to keep and put in our life the people that needed to be here. We had so many changes in 2015 in regards to our daughters care. Some we loved, ended up moving on. Some new ones that are now amazing blessings to us have come into our life. And some of our biggest cheerleaders, prayer warriors and believers are still here. And now, worry will forever be in the back of our minds but we are telling our self to STOP....looking for something to be wrong. Enjoy the moment. This is as big of a lesson to Brad and I that I can explain. It has everything to do with our personal character, our parenting style, us as humans, as servants of the lord and as I as Amber and him as Brad, a husband and a wife. We are praying and thanking God for protecting our girl just as we always knew that he would. We never lost faith in him. And now we are so thankful to be in a really really good place.

Fast forward to November, 2 days before Thanksgiving and our girl coming HOME!.......we are settled, we are loving every single minute of our girl. We arrived home just two days before Thanksgiving. Danielle was SO excited from the minute we put her in her stroller to come home. She talked nearly the entire way home. When we got home she looked around, you could tell she knew it was home but it took a day or two for us to feel like she was really acclimated. After all, 40 days in the hospital is a really long time.
She started by being sensitive to noises. We need to remind everyone she is just now 5 weeks post op from her most recent, of 2, significant brain surgeries, plus one more brain surgery she had in October and another tummy surgery also, so quiet is her favorite. However, Danielle has REALLY started using her voice. A couple weeks ago I noticed for the first time consistently she would verbalize on command for me. I would ask her a question and she would say, 'yeaaaa'. It was the most precious moment of my entire life. A child that has been non-verbal virtually all of her life, now responding on command. Ah, my friends, God is so SO good. Now she is a chatter box all of the time. She is eating TONS! There are SO many things about her that are amazing and new and I could go on and on and on about, she is absolutely an amazing little girl. She is definitely an angel of God and we could not be happier with where she is right now not only from a health standpoint, but socially also. She is holding her head up more, she is constantly pushing up with her arms and kicking her legs and moving all over the place, rolling everywhere. It is just so so soooooooo good!

When you see your child endure so much pain, it is really hard to maintain those thoughts that maybe it is for a reason. You look for the silver lining in rough days and try to remind yourself that God really knows what he is doing. We always need to trust in Gods plan, and remember it is his plan, not our plan. We firmly believe that every single one of those 40 days in that hospital was needed for them to truly figure out Danielle. As hard as it was. As much as it sucked. As long as the time drug on with no answers. As much as we cried and pleaded for them to just let us take her home. As many times as we fought them to keep looking for something, to keep checking, and as many times we told them we weren't leaving until they fixed her, we NOW know, it was so necessary. It makes me sad that the beginning of 2015 was so heartbreaking and so much seemed uncertain. We have learned that as painful for us as parents, and mostly for Danielle, as many of those days, and uncertain events were, they made our girl stronger today.

Thank you for continued prayers, thoughts, and any positive energy that you can and do, send our way. 2015 brought some absolutely amazing people into our life and we are forever thankful for all of you. We wish you and yours many blessings of happiness and good health in 2016! We are so excited for all of the wonderful things 2016 has in store for our girl. Many pictures and video's coming soon! We can't wait for you to see her!!!
Much love,
The Holub family

Tuesday, December 1, 2015

40 Days and......HOME!

Who would have ever thunk.....have you ever been in a tragic situation in your life where you've stepped back and did I get here? That is a question Brad and I have asked too often in our life. And then as quick as it comes on, we go thru it, and the wave is over. We have reached the surface, we can breathe again, we can feel whole and human again. Its a very strange feeling. A feeling that I would NEVER wish upon anyone. But if you've ever gone thru something horrific, you may have felt what I have just described.

After 40 days and nights at the University, our girl is finally home. It is very perplexing that she came home on the 40th day because a few weeks prior I had thought about the significance of 40 days and 40 nights in reference to the bible. If you are a spiritual person you may recall what I am speaking of. But during this time of so much going on with our girl, we felt tested beyond belief. So many days I thought, why, how, what is the reason? I prayed and begged for prayers more than I ever have in my life. This experience changed us. And I say experience because I truly felt that is what it was. I prayed so many time, God just please don't have her feel pain. I wanted to feel her pain, we didn't want her to feel pain. I just felt like there were SO many lessons in this 40 days.
The number 40 shows up often in the Bible. Because 40 appears so often in contexts dealing with judgment or testing, many scholars understand it to be the number of “probation” or “trial.” This doesn’t mean that 40 is entirely symbolic; it still has a literal meaning in Scripture. “Forty days” means “forty days,” but it does seem that God has chosen this number to help emphasize times of trouble and hardship.
The year 2015 started with us truly know something was wrong with Danielle. We did. We knew from the minute she got out of her last surgery in December 2014 that something was wrong. We had a different neurosurgeon. We felt unsettled. She was different kid. Everything was different about her. Her demeanor. Her breathing. Her body tone. Her personality. And if you know Danielle she doesn't cry. She cried more in the last 10 months than she has cried in her entire life, and I am so serious. We visited our local doc, we visited Neurosurgery, we visited the ER, we saw a pulmologist, we saw Oto, we saw every single doctor, we begged for answers, we prayed, we cried, we got frustrated and yelled out, we begged for our girl to get better. She didn't. It cost us relationships. We had issues with therapists, we had issues with nurses, we went round and round and round telling all of these people that SOMETHING IS WRONG. But NOBODY could tell us that something was, because to them every part of her appeared normal. We knew she wasn't.

So this brings us to October of this year. We honestly prayed that if she had to go thru anything, to please not have her come home until she was fixed. Until we could have our girl back. Until it was ALL figured out why she had been so uncomfortable for so long. So that is what happened. In a weird odd way, God answered our prayers. And for 40 days we were tested beyond belief. We advocated and spoke up and told our thoughts and pushed and pushed until we had answers. After her brain surgery to put her shunt back in, when her crib and room in the PICU were packed up, report had been called down to the 3rd floor and we were ready to leave there, I begged the PICU to keep her. I knew in my whole heart when I just happened to leave work and go up that day that SOMETHING WAS STILL WRONG. And we were NOT settling again. We had to advocate for her and make them find the root of what was going on with her, STILL. Finally they did. Finally they said she needed her shunt revised again because it was not draining correctly. Yet when they went in they said they didn't really see anything that was wrong. But they replaced it again just in case. And guess what, that was it, that was the final step that was needed, it brought our girl back. IT BROUGHT HER BACK! After over a year, whatever Dr. Wilson did that day, brought our girl back. I get SO emotional thinking about it!
We had to stay a few extra days to get her feeding again and to  make sure she was ok to come home. It was so frustrating to us because we were OVER it. We knew she was fine. We knew our girl was back and we wanted to be home. Tuesday afternoon last week, our girl came home. I cannot even begin to tell you how amazing it feels. Those 40 days tested us, but you know what....they were needed. We know in our heart it was needed to figure out everything that was going on with her but it brought our girl back. And we are SOOOOOO thankful. God is so good my friends. Why in the world would I ever question him? Why in the world would I ever doubt my faith in him? Because when life gets tough its easy to want to give up. Its easy to be negative. But my friends we were tested, God wanted to see how strong we COULD be for our girl. And if you could see her now, oh my goodness, you would know in an INSTANT how different she is. We pick her up she instantly lays her head down on our shoulders. Her body is SO relaxed all of the time. She had not cried ONE time since we got home last week. She is eating TONS. She is SLEEPING! Oh my gosh, she hasn't slept in a year and she is sleeping! Our hearts are so over joyed. We are beyond happy for her. We are beyond thankful.
I will update some pictures and videos very soon so you can see our beautiful girl. But I wanted to update quick that she is home. To everyone that supported us during this time, thank you from the bottom of my heart. The gift baskets and meals and gift cards and the prayers, the positive thoughts, every single thing and thought and prayer we are SOOOO grateful for.  You my friends helped us get thru this unimaginable time. The hard thing is that we know people have it worse. We know that some are tested even more than we were. And for all of that friends, I ask that you continue to pray for those going thru the hardest of times and for those that will not be home with their family's this holiday season. Until next time, take care and my gratitude for you is more than I can explain. Thank you for loving our sweet sweet girl.~