Thursday, August 30, 2012

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)

3 comments:

  1. Oh how well I remember the days preparing to go home and meeting our hospice team! So exciting yet scary all the time. Just looking at your photos with sweet AG brings me right back. I have photos somewhere with the same look of fear, love and exhaustion in my eyes. Much love to you and Hayden's mommy xoxox

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  2. also your words. I can recall writing in Christopher's caringbridge about many of the same things on my heart and mind. I hated pity and those looks xoxox, mama. I'm here if you ever need support!

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  3. She is going to look super fabulous in that crib. Love it. I am so happy for you that you get to bring your sweet girl home. Thanks again for sharing Ava with us. Continued prayers for everyone. Melissa

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