Feb. 22, 2015
It's been a relatively slow and uneventful past week. The biggest change has been in the weaning of Avery's medications. She's handling everything pretty well! She is gaining weight and we now have a chunky little monkey (she was never chunky before because she was burning more calories than she could take in. VSD fixed=baby gains weight) One of the things her team is discussing this week is the coarctation of her aorta (narrow arch) and if/when something needs to be done. As usual, we have heard too many different things, so we are praying for clarity and guidance for the doctors and surgeons who will be meeting to discuss her. We are continuing to work on her sucking and swallowing reflex so that she will be able to eat on her own, she is having to relearn this... If she's unable to gain that skill back, she will need a G-tube, which is definitely not the end of the world but it would be a surgery that she would have to be under anesthesia for and we would love to be able to avoid that, for her.
It's been a relatively slow and uneventful past week. The biggest change has been in the weaning of Avery's medications. She's handling everything pretty well! She is gaining weight and we now have a chunky little monkey (she was never chunky before because she was burning more calories than she could take in. VSD fixed=baby gains weight) One of the things her team is discussing this week is the coarctation of her aorta (narrow arch) and if/when something needs to be done. As usual, we have heard too many different things, so we are praying for clarity and guidance for the doctors and surgeons who will be meeting to discuss her. We are continuing to work on her sucking and swallowing reflex so that she will be able to eat on her own, she is having to relearn this... If she's unable to gain that skill back, she will need a G-tube, which is definitely not the end of the world but it would be a surgery that she would have to be under anesthesia for and we would love to be able to avoid that, for her.
Thank you all for your nonstop prayers, we feel them every single day. We are getting closer and closer to being home with Avery in our arms but she still has a long, unknown road ahead. Thank you, sweet angels, for being patient with us, supporting us, loving us, encouraging us, and just listening when you might not know what to say. We are so, so grateful. ❤
I see a little smile trying to happen...
Feb. 23, 2015
It's one of those nights that this momma is having a hard time keeping it together. I am physically and emotionally drained. You never know what kind of strength you have until you have no other choice. You also never know how much you will need to rely on Him until you have no other choice. This girl has taught me about a kind of love deeper than I can sometimes comprehend. From the moment I first met you, sweet girl, you've had my heart.
It's one of those nights that this momma is having a hard time keeping it together. I am physically and emotionally drained. You never know what kind of strength you have until you have no other choice. You also never know how much you will need to rely on Him until you have no other choice. This girl has taught me about a kind of love deeper than I can sometimes comprehend. From the moment I first met you, sweet girl, you've had my heart.
"If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you...If God had told me, "This soul would one day need extra care and needs", I still would have chosen you. If He had told me, "This soul may make your heart bleed", I still would have chosen you. If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you. If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you. If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you. If He had told me, "All that you know to be normal would drastically change", I still would have chosen you. Of course, even though I would have chosen you, I know it was God who chose me for you."
Feb. 25, 2015
Today, we ask that you lift the medical team up in prayer for guidance, direction, and steady hands. Also, please lift Avery up for a smooth procedure and calm transitions. Avery has the procedure to have a stent put in to take care of the coarctation of her aorta. It should take about 3 hours from the time she goes in to when we can see her again. We have full faith and confidence in this team and that this is the right next step for Avery in her recovery. Our God is an awesome God!
Today, we ask that you lift the medical team up in prayer for guidance, direction, and steady hands. Also, please lift Avery up for a smooth procedure and calm transitions. Avery has the procedure to have a stent put in to take care of the coarctation of her aorta. It should take about 3 hours from the time she goes in to when we can see her again. We have full faith and confidence in this team and that this is the right next step for Avery in her recovery. Our God is an awesome God!
Feb. 27, 2015
Thankful for this sweet reminder. I read this numerous times a day because when I feel like I can't, He tells me He can. Although the procedure for the placement of Avery's stent went well, last night and today have been rough. When I say rough, I mean terrifying, for all 3 of us. It seems that every time her body goes through a big change, it takes a while to get adjusted to it's new flow and rhythm. (Understandably so)...Brad and I both wish we could take away every ounce of her pain and discomfort. That's one of the hardest parts of all of this, feeling so helpless. There are times when I want to just leave the room because it hurts my heart so bad to watch her having an 'episode' but just when I think I can't handle anymore, something reminds me that she needs me there more than I need to run away. I pray for all of this to be behind us before we know it, I've never prayed for something so hard. Boy have we realized how precious life is over the last 2 months. Thank you Lord for strengthening us ALL.
Thankful for this sweet reminder. I read this numerous times a day because when I feel like I can't, He tells me He can. Although the procedure for the placement of Avery's stent went well, last night and today have been rough. When I say rough, I mean terrifying, for all 3 of us. It seems that every time her body goes through a big change, it takes a while to get adjusted to it's new flow and rhythm. (Understandably so)...Brad and I both wish we could take away every ounce of her pain and discomfort. That's one of the hardest parts of all of this, feeling so helpless. There are times when I want to just leave the room because it hurts my heart so bad to watch her having an 'episode' but just when I think I can't handle anymore, something reminds me that she needs me there more than I need to run away. I pray for all of this to be behind us before we know it, I've never prayed for something so hard. Boy have we realized how precious life is over the last 2 months. Thank you Lord for strengthening us ALL.
Feb. 28, 2015
Pure joy. Holding my sweet girl for the first time not being connected to ANYTHING in 2 months. It lasted about 15 minutes but loved. every. single. minute. By the way, today was MUCH better than the last few days. Let's pray this trend continues. Thank you so so much for every prayer lifted up.
Pure joy. Holding my sweet girl for the first time not being connected to ANYTHING in 2 months. It lasted about 15 minutes but loved. every. single. minute. By the way, today was MUCH better than the last few days. Let's pray this trend continues. Thank you so so much for every prayer lifted up.
Mar. 4, 2015
Bubbles and lashes.
Bubbles and lashes.
(later that day) I'm a couple days late, but thank you for blessing us with your sweetness for the last 6 months, baby girl. We love you more than this life itself.
It's been 68 days on a roller coaster that I wouldn't let any one ride on if I had any control over things, but we can (finally) say we are heading home on Friday!! As in two days, Friday. Home. What a beautiful word. We have waited on this day to come for far too long. We are excited beyond belief but terrified about our new normal. Please understand that we are just so lucky to be coming home with our baby girl in tow. Many didn't think that would even happen. Her little body has gone through more than most will ever have to in a lifetime. She has endured some set backs, many of which we won't realize or understand until she is a little older. Our family has some major adjusting to do and will just need some time to get back in the swing of things. Parenting is always an around-the-clock job but we have some important, new duties that are going to keep us very busy. Please, please, please be patient with us and understand we are overwhelmed.
Everyone's love, encouragement, gifts, letters, support, and PRAYERS have been such a blessing during this season and we are forever grateful. Every single day and night I have prayed that The Lord blesses each and every one of you for taking time to lift our sweet girl up to Him. There is no greater gift you can give someone who needs something that only He can provide.
I will try to continue updating on Avery's progress as I can because who doesn't love sharing GOOD news?! I know we will have trying days and good days but we aren't alone... We haven't been alone during any moment of this. Please continue to pray for complete healing... I believe in miracles because I've seen them.
Mar. 5, 2014
We started our goodbyes tonight and oh man, tomorrow is gonna be hard. Saying goodbye to some remarkable people...thank you just doesn't touch it.
We started our goodbyes tonight and oh man, tomorrow is gonna be hard. Saying goodbye to some remarkable people...thank you just doesn't touch it.
Mar. 8, 2015
Home is so much more comfy than the hospital. We made it home on Friday after a not-so-bad car ride. Avery handled being strapped into her car seat a lot better than we expected. (She is super sensitive to touch and movement and gets very upset so we were really worried about getting her in her car seat). The last couple days have been a big adjustment and just trying to get into some kind of routine that we can stay sane in. Thank you all so much for your prayers during this transition. We will continue to need them as each day brings something new but being home is definitely wonderful. Love all of you angels!!
Home is so much more comfy than the hospital. We made it home on Friday after a not-so-bad car ride. Avery handled being strapped into her car seat a lot better than we expected. (She is super sensitive to touch and movement and gets very upset so we were really worried about getting her in her car seat). The last couple days have been a big adjustment and just trying to get into some kind of routine that we can stay sane in. Thank you all so much for your prayers during this transition. We will continue to need them as each day brings something new but being home is definitely wonderful. Love all of you angels!!
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