Feb. 3, 2015
It's one of those days that I just miss our old normal. Please don't ever take for granted the simple things in your day to day life. I want so badly to pick up my girl and rock her and play with her and see that smile looking back at me. Brad and I were talking about it last night and he simply said, "this is our new normal, we just have to get used to it." I think that's what's hard... Knowing what USED to be and how simply perfect it was. Change is hard. It's always been hard for me. Of course our baby is still perfect but it's change.
It's one of those days that I just miss our old normal. Please don't ever take for granted the simple things in your day to day life. I want so badly to pick up my girl and rock her and play with her and see that smile looking back at me. Brad and I were talking about it last night and he simply said, "this is our new normal, we just have to get used to it." I think that's what's hard... Knowing what USED to be and how simply perfect it was. Change is hard. It's always been hard for me. Of course our baby is still perfect but it's change.
I say all of this because we would've never experienced such graciousness in our old normal. I'm telling you, there is so much good in people and it warms my heart every second. We have met people who offer prayers, their stories, hugs, time, and gifts. We have met nurses that have become so much more than just Avery's nurses... They are her angels, literally. These nurses are so good to Avery AND us. We have heard more times than I can count that people, strangers and friends, have come to know Jesus through Avery's journey. We have met other families in the hospital that offer support and prayers. We have been blessed by a wonderful place, the Ronald McDonald House, that has given us a place to stay that is a short walk to the hospital. There are so many other blessings that we have experienced and we are so, so grateful.
Your prayers are felt, so strongly. Today, we are weaning sedation so that she can wake up a little more (we have some ground to make up since surgery kind of set us back, sedation wise). They are thinking by the end of the week possible extubation (getting her off of the ventilator) but again, she's driving this boat.
We love you all so much, our sweet angels.
Feb. 4, 2015
"I'm so happy with where she is and how far she has come. I'm very happy with the improvements I've seen neurologically." says the physician that can be a bit of a skeptic. You show 'em, girl!
"I'm so happy with where she is and how far she has come. I'm very happy with the improvements I've seen neurologically." says the physician that can be a bit of a skeptic. You show 'em, girl!
Feb. 6, 2015
Today, Avery was extubated (second attempt)!! It's such an important, big step in the right direction!! No more ventilator for this little girl (but we are oh so thankful for it and everything it did for her). Next, the meds and oxygen will continue to be weaned. It's amazing what one good day can do for the soul.
Today, Avery was extubated (second attempt)!! It's such an important, big step in the right direction!! No more ventilator for this little girl (but we are oh so thankful for it and everything it did for her). Next, the meds and oxygen will continue to be weaned. It's amazing what one good day can do for the soul.
Feb. 8, 2015
"The joy of The Lord is your strength." Nehemiah 8:10
"The joy of The Lord is your strength." Nehemiah 8:10
So joyful today. It's amazing the things that we find such joy in these days. Today, it's the progress that Avery has made with her movements. A week ago, she would clinch her fists and toes when she would get agitated. Today, she is so much more relaxed and less stiff and not squeezing together a tight fist. And this isn't just our observation, physical therapy definitely saw it too! Keep showing 'em, strong girl!!
"You are my sunshine, my only sunshine, you make me happy when skies are gray, you never know dear, how much I love you. Please don't take my sunshine away."
Feb. 12, 2015
This little snuggle muffin has had a big day. We moved out of the PICU to Intermediate Care, which was so bittersweet. We fell in love with the PICU team and these transitions are just hard...New set of doctors and nurses...but it's amazing that Avery is doing so well! No more oxygen support, this girl is doing all of the breathing on her own! The hardest thing right now is watching her come down off of the meds...pray that gets easier for all of us. Tee tiny baby steps in the right direction and all of the praise, honor, and glory goes to The Lord! Please be patient with us as we are adjusting to new things every single day. These have been the longest 50 days of our lives but we are so thankful we have our sweet girl and all of your prayers.
This little snuggle muffin has had a big day. We moved out of the PICU to Intermediate Care, which was so bittersweet. We fell in love with the PICU team and these transitions are just hard...New set of doctors and nurses...but it's amazing that Avery is doing so well! No more oxygen support, this girl is doing all of the breathing on her own! The hardest thing right now is watching her come down off of the meds...pray that gets easier for all of us. Tee tiny baby steps in the right direction and all of the praise, honor, and glory goes to The Lord! Please be patient with us as we are adjusting to new things every single day. These have been the longest 50 days of our lives but we are so thankful we have our sweet girl and all of your prayers.
Feb. 15, 2015
I just remembered to flip to today's page and it couldn't have been more spot on. I feel such a peace today about things. And I'll be the first to tell you there are plenty of days when it's hard to have that peace, the unknown is hard. But today, I feel like God has Avery right in the forefront of his mind. You know how your ears burn when someone's talking about you? It's kind of like that, I just have that feeling that today, he's got her front and center. I can't wait to see her 'emerge' from this state that she's in and see what amazing things she'll be able to do but at the same time I know it's all in His perfect timing. Her little body needs time to get over everything it's been through. I know all days aren't going to be as calm as today has been, but it at least gives me hope. So today, please be thankful for being right at the forefront of His mind. He loves us so.
I just remembered to flip to today's page and it couldn't have been more spot on. I feel such a peace today about things. And I'll be the first to tell you there are plenty of days when it's hard to have that peace, the unknown is hard. But today, I feel like God has Avery right in the forefront of his mind. You know how your ears burn when someone's talking about you? It's kind of like that, I just have that feeling that today, he's got her front and center. I can't wait to see her 'emerge' from this state that she's in and see what amazing things she'll be able to do but at the same time I know it's all in His perfect timing. Her little body needs time to get over everything it's been through. I know all days aren't going to be as calm as today has been, but it at least gives me hope. So today, please be thankful for being right at the forefront of His mind. He loves us so.
Feb. 18, 2015
This was a week before our worlds were turned upside down. Happiest baby in the world. We cannot wait to see that little smirk again. Today, my calendar is spot on again... It says "The Lord who loves you and holds you in the palm of His hand wants to bless you today--in amazing, humbling, and breathtaking ways." One of her original doctors said last that he hopes she continues to amaze everyone and prove the MRI wrong. We are seriously blessed with the best team, they sincerely care about our sweet girl.
This was a week before our worlds were turned upside down. Happiest baby in the world. We cannot wait to see that little smirk again. Today, my calendar is spot on again... It says "The Lord who loves you and holds you in the palm of His hand wants to bless you today--in amazing, humbling, and breathtaking ways." One of her original doctors said last that he hopes she continues to amaze everyone and prove the MRI wrong. We are seriously blessed with the best team, they sincerely care about our sweet girl.
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