It's been a while I know

A lot of people are asking for updates on Ava Grace. Well, I started a previous blog and about 45 mins of pouring my heart into it, my phone went blank. Grrrr! Lost everything. Guess it was the Lord's way of saying now is not the time. So, if this blog makes it to your site, it was meant to be. :) we had a scare last week as Ava kept dropping her heart rate for whatever reason. They marked it up to her immunizations. Which scares me for the next set. Since then she has done fairly well. She still drops when she needs to be suctioned out. We were told that we would be discharged soon so we had to do the "rooming in" to make sure we could handle each other. Other than Ava having to change my diaper every 45 mins we were good haha kidding. Although it was a tough night. The bed was gross!!!! My bed, not hers. It had some dried substance on it that I don't even want to guess at. Then, respiratory came in with a huge mixup in Ava's oxygen, etc. All in all, we survived! Woo hoo!!! We also had to come up with a continuous suction device to use at night. It will keep me from having to wake up every 45 mins to suction or worse, not wake up and some devastation have happened. It will also help Ava's throat from being suctioned so often. Home health and hospice was unable to locate one for us so it has delayed our departure from this fantastic "hotel". I can honestly see why a friend of mine calls it "their second home". The nurses and dr's here are fantastic! I have absolutely developed a bond with a special neurosurgical NP, Toni. She is fantabulous!!! Plus we've been here forever it seems. I've forgotten what it feels like to have my family all in one room and cook and etc. So, my fabulous father in law got involved and like most times got the job done and his way! We now have a suction machine on the way. Yay!!!!! Super excited because we can see the light at the end of the tunnel on the hopes of going home. Yay!!!!!! In the most of all of this, I had to do something I really didn't want to. I had to quit my job. I LOVE my job and feel like it is my calling. Now I have been given a new calling and that's to take care of my pumpkin. So, I guess I am still considered a full time nurse and a full time mommy. Hope I don't have to apply for a loan or anything, that might get confusing in the occupation category. :) My job was so understanding and supportive. I couldn't ask for a better group of people to work with/for. I miss them dearly!!!! Next thing was a loss of a dear friend. My sweet sweet future son in law. Yes, it would have been an arranged marriage and Ava's daddy was already saying "hey hey now" when Hayden bought Ava her first dress. You know those daddy figures. While us momma figures are thinking awe how sweet!!! I saw some big plans in mine and the inlaws future haha. All laughter aside, I've never met a stronger fighter than this little man. I am so honored to have been a part of his earthly presence. He brought together so many people. Especially those with a "special heart". If you don't have a "special heart" child, then it's hard to fully understand. People look at you different. They look at your child different. It's almost pity in their eyes. I see this everyday in the NICU. It breaks my heart. I hate for people to stare. Worse than that, I can't stand for people to abandon you when things aren't in their favor. I've met a couple in my day that pretended to be there for me, but I haven't heard from since she has been born or even worse only want to come see me so they can be "in the know". One of my greatest friends is fully aware of these types of people. Please don't be this way. We have a hard enough time on a day to day basis than for someone to add to it unnecessarily. If you are genuinely concerned for Ava Grace and want to know or help, ask. If not, then just read the blog and report what you've read, not what you've read in to it. In conclusion, if you know a "special heart", love them and cherish them, because tomorrow is not promised and today is a gift.
I was walking to my car this afternoon and the wind was blowing and for whatever reason, I looked to the top of the hospital to see a helicopter and instantly was overwhelmed with the sense of calmness. I felt like it was Hayden telling me to stop stressing, that if I took Ava Grace home and she didn't make it that it was going to be ok. He was there for her. At that time a strong wind blew and the song let them be little came on. You just can't plan this stuff. I am so blessed! The Lord knew what he was doing. 5 years ago I was moving to Jackson, but the Lord put Bryan in my life. He has become my rock, my true love and my big hearted bread winner. Followed by Trace and Ava Grace. Somewhere in this mix, he put Lauren, Brent and Hayden in our lives. I never wanted to stay in Greenville, but He knew I would meet the best man in the world for me and create two more beautiful children. he also knew what diagnosis He would give Ava, an the support that we would need from L & B. I must say that they are my miracle. They talk to me through all hours of the night and encourage me when I am down. Hayden, even though he is younger, is my soldier. He proved to me that life is hard, but if you fight, you live for another day with the ones you love. Now AG is my GI Jane. She pushes through, even though the dr's doubted her. She is not out of the woods yet, ad never will completely be with the diagnosis she has been dealt, but she is my sweet angel and is fighting to make it home to meet her brother for the official first time. I can't go without saying thank you to my Aunt Tammy, mom in law Patsy and sis Lisa for doing Ava's room while I am here. They have made the perfect room for my perfect princess. I love yall!!!!

Ps look up Mandy Vowell and add her as a friend! She is a big heart that loves loves loves "special heart" babies!!!

"Be bold and strong! Banish fear and doubt! For remember, the Lord your God is with you wherever you go." (Joshua 1:9)

Post op #2

So my baby girl pulled off BRAIN surgery!! Hallelujah and Amen, thank you Lord for showing out again! Now here comes the other half. She is still on the ventilator and her little head is still swollen. They say it will take a little bit to start seeing results. Right now we are praying she comes off the ventilator and has no post op complications. As we speak, she is mad because she is tied down, since she keeps trying to pull her ET tube out. Mommy's little fighter. She went through surgery without a hitch, per her surgeon. He also said that she is such a little diva! Haha, my baby, a diva!? Too funny. He added that she needed a boa, tiara and a wand. He truly cracks me up. I think he was trying to comfort a couple of stressed parents who had been through hell this morning over what kind of anesthesiologist was best for this surgery. Did I mention that all that confusion took place about 30 minutes before surgery? Yes I'm pretty sure I had a mental breakdown at some point. None the less, she is doing good now from a neurological point of view. Our next steps will include weaning her off of the vent, and all the following respiratory apparatuses to allow her to function back on room air. This will be a major feat since she is not trying to breath over the ventilator too much right now. I know she can donor though. She is stubborn like her mom and dad. She is also strong spirited. I love it!!!

I have to admit that I have met some great people here. It seems that everyone has a story behind their presence here. It is really heartwarming to see so many people here with such a love for these children and for their love for God. I've had people, nurses and parents, pray over Ava Grace. That is the most wholesome feeling to have. I even met a lady in the Restaraunt that noticed my hospital bracelet on (to match me and Ava) and proceeded to ask questions about Ava and ended the conversation with how she is going to pray for us. Awe!!!!!! The Lord is making His presence known at my every turn. He is Ava's ultimate physician and he is protecting her and teaching me all at the same time. In the time that Ava's diagnosis was given to now, I have made friends with people that normally I probably would have passed up. Not because I was scared or thought I was better or worse than them, but just because we didn't have the same things in common (or so i thought). I came to find out we are more similar than I thought. Plus, people that are in critical circumstances such as ours relate on a level that others just can not even pretend to imagine. Everyone's battle is their own mountain and only they have to climb it. When you have someone who is climbing the same mountain or has already climbed it may be able to help you along the way or you may help them. In saying that, I can't help but thank the ones who have climbed along side of me and my family.

As I say here in NICU, typing this update, Ava decided she no longer wanted her breathing tube and fought it until the nurse took it out. So now my baby girl is on ROOM AIR!!!! Woo hoo!!!! Go Ava, go Ava!! Her blood pressure and pulse is a little elevated, but doing good over all. Lord has had mercy on my baby girl and her family again!!! Praise Him. I will update more as I can, later.

Before I go, please say a strong and silent prayer for one of my fellow mountain climbers, as mom, dad and baby are fighting a traumatic time. The baby's condition almost took th to heaven today, but the Lord is letting their family borrow them a little longer. It is a uphill mountain and they are staying strong in their faith, so please share some of yours with them. As we all know you can only climb so long before you end up crawling in exhaustion. Love and big hugs to their family. Since they have not announced their status yet, I will not announce their name and would appreciate if you didn't either. Thank you so so much for your strong prayers and faith. Everyone of you have been a true eye opener and faith renewing prophets! I am attaching a few pics for your guided experience in "our world".