Well we had an eventful start to the day. I have been told over and over to expect setbacks and I knew that they were coming, but it doesn't make things any easier. Yesterday was tough with the trial off ECMO not really going very well and now today with this bleeding issue...we are worn out. All of the issues that Avery has going on are just so complicated and they all work against each other to some extent. If one thing goes wrong, there are so many other factors that become more challenging. It's all just so scary.
As a parent, I feel so helpless. There is nothing I can do and nothing I can say...all we can do is touch her hands and tell her we love her but somehow that just doesn't feel like enough.
For now she is doing ok I guess. Shane and I will meet with the attending this afternoon to discuss the next couple days. I will let all of you know how that goes.
Carissa
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I'm sorry, sweetheart. I know how helpless you feel and I would gladly do anything to make things easier for you in any way that I can. Just say the word and I'll take the day off work and be there with you.
ReplyDeleteWhatever you need...I'm there. Love you.
Carissa,
ReplyDeleteI know how hard this is for you. When Brayden was in the NICU with PPHN we felt like we were on a rollercoaster. One minute we were great, the next totally down. It's SO HARD. Please know you are daily in our prayers!
You do not know me but, I check up on your little Avery everyday!! Still sending prayers from Nashville, TN. Praying for total healing!! May God Bless you all!!
ReplyDeleteSissy
The helpless, frightened feelings are the worst I know. I pray for God's grace and strength for you guys. Just keep touching and loving your sweet baby - she knows you're there.
ReplyDeleteI bet she is getting callouses on her little hands and feet from all the lovin'! I hate to hear that today was a struggle, but try to take it as it comes. Take peace in knowing that it is not the norm to be an overachiever, perfect every day. You are doing an amazing job, and so is little miss Mae.
ReplyDeleteRachael
I can't tell you how many people have told me that they keep checking your blog and praying for Avery. So many more than leave comments are praying for you guys, and thinking of you so often throughout the day. Love you guys!
ReplyDeletePraying for you guys! I have been out of town the past few days, but hoping things were going good with Avery. sorry for the setbacks, but many prayers that she improves today!
ReplyDeleteAshley
I am so sorry that Avery is having setbacks. Praying doctors are able to help her and get her back on track. Try to not feel helpless... just you being by Avery's side means so much to her. Talk to her, sing to her, read her story, tell her all about her big sister will do wonders. She knows you are there with her and can feel your touch. Avery is strong and look how much she has overcome already. Fight Avery fight and overcome this hurdle!! It took my son two tries too come off of ECMO, so praying Avery is successful with the next try!!
ReplyDeleteMuch love and prayers coming your way, Tracy - Ian's mom
Our thoughts and prayers continue to be with you and Avery always. Though we are in Ohio, distance is no barrier when we are communicating with God in your behalf. May He heal sweet little Avery's body and may He let each day become easier. Goldie McGarrah
ReplyDeleteI am so sorry to hear about this setback. Just know that you are continually in my prayers and no matter what happens the Lord knows most what we need.
ReplyDeleteI just came across your blog...and I am feeling like the Lord led me here so I can pray with you. My 3 yr old is Avery, my oldest (8yrold) is Bethany, I used to have a Sadie dog, and my best friend is from Fayetteville. Wierd. Anyway--I will be praying the best I know how for you guys! I have read through your blog and can tell you are crazy about your girls, and that they are incredible blessings.
ReplyDeleteLori
katymom.com
Oh sweetie, I'm so sorry to hear about the setback. Two steps forward, one step back, right? Be strong and know that Shawn and I are praying hard for sweet Avery and that she'll have a better day tomorrow!
ReplyDeleteSending love and prayers,
Stephanie
Your love for Avery pours out of your blogs. Thank you for your honesty. I so remember that helpless feeling watching our little man hooked up to so many machines. It can absolutely break a Mommy's heart. I pray that soon you will be able to love on Avery as your heart begs you to.
ReplyDeleteKeep only good thoughts! She will pull through this. That is all I can think and Pray for!
ReplyDeleteI am so sorry that this is happening to sweet Avery! Just know we are all out here praying like crazy for her to heal and go home with you to her room!!!
Always In My Prayers!
I came acrossed your blog from another blog... and have been following it. Your little Avery is in my thoughts and prayers. When I started doing a little research about CDH, I came acrossed this website... http://www.realhopeforcdh.com/children.html
ReplyDeleteAvery is a fighter, and has so many people praying for her and your family! I can't wait to read the post about when you get to take her home, and when she gets to wear her bikini!
Carrissa Just read yesterday's blog! Sorry to hear of Avery's side step, hope today has been better! A early AM wakeup call sets the tone for the day, keeps you on edge. The ups are good the downs are very scarey and frightening. Just try and look at the whole picture she has come so far. She needs your strength! She is one tough cookie, and is fighting hard. All you can do is be there for her keep on lovn her! Hang in there. Hugs Kathy Rae
ReplyDeleteWe are thinking, talking and praying for you guys all the time. I wish we still lived there so we could help out. Come on Avery, you can do it! Even Grahammy is scribbling stuff on paper and asking to send it to baby Avery.
ReplyDeleteHi-you don't know me, but I am a friend of Beth Gillham's. We have had our own experience at ACH so I know how the roller coaster ride can be. Just hold on - read the Psalms - ask tons of questions - keep loving on that precious little girl!!! It really does make a difference! We are praying for your family.
ReplyDeleteAngie Graves
Come on Avery - Fight! You can do it!! God is Good! I'm thinking and praying for all of you.
ReplyDeleteHi! my husband, albert is a friend of danny austin. he sent us a link to your blog. just thought i'd let you know that your precious Avery and the rest of your family are in our prayers. god bless!!
ReplyDelete