Wish List for Bereaved Parents

When I saw this list and read through it, I felt like it so perfectly listed all of the things that a grieving parent wants to say.  For anyone who knows someone who has lost a child, a friend, a family member, I encourage you to read through this to help you better understand.  Loss is hard.  Asking for help is hard.  Don't 'stay out of the way'... yes, sometimes (just yesterday) I didn't want to speak to anyone...But some days, I long for a close friend to rescue me...not to distract me but to remind me I'm not doing this alone.  I pray this will help someone.

(This list was found on Bereaved and Blessed)

I wish my child hadn’t died. I wish I had her back.

I wish you wouldn’t be afraid to speak my child’s name. My child lived and was very important to me. I need to hear that she was important to you also.

If I cry and get emotional when you talk about my child I wish you knew that it isn’t because you have hurt me. My child’s death is the cause of my tears.

You have talked about my child, and you have allowed me to share my grief. I thank you for both.

I wish you wouldn’t “kill” my child again by removing her pictures, artwork, or other remembrances from your home.

Being a bereaved parent is not contagious, so I wish you wouldn’t shy away from me. I need you now more than ever.

I need diversions, so I do want to hear about you; but, I also want you to hear about me.

I might be sad and I might cry, but I wish you would let me talk about my child, my favorite topic of the day.

I know you think of and pray for me often. I also know that my child’s death pains you, too.

I wish you would let me know those things through a phone call, a card, note, or a real big hug.

I wish you wouldn’t expect my grief to be over in a short period of time. I wish you could understand that my grief will never be over.

I will suffer the death of my child until the day I die. Grief is a life long process.

I am working very hard in my recovery, but I wish you could understand that I will never fully recover.

I will always miss my child, and I will always grieve that she is dead.

I wish you wouldn’t expect me “not to think about it” or to “be happy.” Neither will happen for a very long time, so don’t frustrate yourself.

I don’t want to have a “pity party”, but I do wish you would let me grieve. I must hurt before I can heal.

I wish you understood how my life has shattered. I know it is miserable for you to be around me when I’m feeling miserable. Please be as patient with me as I am with you.

When I say “I’m doing okay”, I wish you could understand that I don’t “feel” okay and that I struggle daily.

I wish you knew that all of the grief reactions I’m having are very normal.

Depression, anger, hopelessness and overwhelming sadness are all to be expected. So please excuse me when 

I’m quiet and withdrawn or irritable and cranky.

Your advice to “take one day at a time” is excellent advice. However, a day is too much and too fast for me right now. I wish you could understand that I’m doing good to handle an hour at a time.

Please excuse me if I seem rude, certainly not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone.

I wish you understood that grief changes people. When my child died, a big part of me died with her. I am not the same person I was before my child died, and I will never be that person again.

I wish very much that you could understand my loss and grief, my silence and my tears, my void and my pain. BUT…I pray daily that you will never understand.

Read more: http://bereavedandblessed.com/resources-links/wish-list-for-bereaved-parents/#ixzz3eJ2JgLQg

Summertime and the livin's (not) easy.

This summer was going to be oh so much fun.  You were going to learn to walk, we would celebrate your first birthday, we would go to the beach and play in the sand, we would play outside, go on walks....

You were robbed of so much.  I'm so sorry baby girl.  There is nothing more that I wish for every single day than to have you back and for you to experience these things.  Your daddy and I try to stay busy with day to day tasks but at some point, the grief has to come out.  For me, usually it's in the mornings...For several hours... I have to let it just take over.  Some days, it's later in the evenings.  When it comes, it comes with no holding back.  So I look at your pictures that are everywhere...on the walls, on nightstands, on tables, on counters...everywhere. Your sweet smiles (still) light up every single room.  As it should be.  You're here with us, I just know it.

We miss you more and more every day...Love you my sweet angel girl.  

A little background that led us to being bereaved parents...Pt.6

In the week following Avery's death, we were surrounded by so much love and prayer and held a beautiful, perfect Celebration of Life for our sweet angel.  

May 9, 2015
I see you sweet girl, I see you. We have been so surrounded with love that it's overwhelming. Our house (mostly the porch) is filled with the sweetest smelling flowers that will give us beautiful blooms every single year. We have received countless cards simply saying you are praying for us. We are reminded every day of little (and big) ways that Avery touched our lives. And this weekend, I am reminded that Avery made me a mother and I will always be a mother, no matter where else life leads us. Who else can live on earth and not sin but an angel? We had an angel and are so grateful He trusted us with her.

May 24, 2015
Three weeks ago. It still seems unreal. I have come to realize that I don't think I'll ever understand how you can be blessed with something so perfect for such a short amount of time and then just like that, it's gone. The pain of missing this sweet angel is almost unbearable at times. I know we will learn to live again but it just doesn't feel right without our Avy Baby. Please continue to pray for peace for our family... Not only was Avery our sweet baby, she was also a niece, cousin, and a granddaughter.

May 31, 2015
It's been 4 weeks. 4 of the longest weeks of my life. There should be one more sweet girl in this picture. So thankful for these people, they are part of the group that have been our rock since day 1. It is so bittersweet making memories with only 2/3 of our little family here. What I would give for one more snuggle. Avery taught us a new kind of love that I am forever grateful for.

June 8, 2015
"Loved". That is one thing that was so true of Avery. She was loved. She is still loved. I began writing in this journal on December 23, 2013, the day I found out I was pregnant. The day our worlds were forever changed. The day that began our fierce love for someone that we hadn't even met. The day that we truly began living for someone else. And I write in it today. The topic has always been Avery, the details are just different. In December and the months to follow, I wrote about all of the joy and excitement we had, that everyone had, knowing she was on her way. I wrote about the process of preparing our home to welcome her into it. I wrote about how our love for her grew even more once we had decided on a name, Avery Marie. Now, I write about how much we miss her. How grief takes over like an ocean wave, trying to pull you under, then passes when it's ready, whether it's after ten minutes or two hours. I write about the 'what ifs'... What it would be like if we had a happy, healthy 9 month old. What would she sound like? Interact like? Crawling? (Probably, and probably all over the place) I think it's normal to wonder these things and long for her presence but oh how it hurts. I struggle with how much I want to share.. Part of me feels like it is my job to keep her story alive.. Maybe I can help someone else. Maybe her story of strength and love will reach someone and lead them to Jesus. Maybe it's my selfish way of not wanting her to go away. I don't know. Maybe I'll never know. Our hearts were forever changed because of her and I know she's not finished. So please bare with me as I continue to tell her story. Maybe it's part of my healing process. Again, I don't know. But there is just too much good that can continue to come from this to not share. Children are special. They are truly God-sent. They can all teach us a thing or two, we just have to watch and listen. 

June 9, 2015
Today, I miss the smell of diapers. Going through and trying to organize things in Avery's nursery brought on some major tears.

Looking back through our hospital notebook, I had written down this verse that brings so much peace to me today. At the time, we were waiting to find out what test would be done that would be the least risky and most beneficial for showing exactly what Avery's heart needed. Today, I needed to be reminded that she is whole and well and happy. The Lord must've known that I'd need that reassurance again.

June 15, 2015
I adore my niece. I have since the day she was born. I loved that Avery and Paisley were going to grow up together, so close in age. Now, I love that Paisley remembers 'baby'... Oh man the dreams I had for the two of them together; what a fun summer it was going to be. I am so so thankful that we have Paisley. The Lord does some amazing work through these unknowing kids and it just fills my heart with so much happiness. Today, we ate popsicles, played in the sprinkler, colored, read books, snuggled, giggled, and missed Avery. I pray that Paisley always remembers her baby cousin because I know Avery would've adored her just as much as we do.

June 16, 2015
Oh how my body physically aches to hold you. You took a piece of me with you and I won't be whole until we are together again, where you should be, in your momma's arms. You were 1 week into your little life here and I literally sat with you and stared at your perfection of a smile all. day. long. Well, in between diapers and nursing. I wouldn't have traded one sleepless night for anything. Life just isn't as sunny without you. It never will be. I love you, my sweet angel.

June 19, 2015
Never. So much was lost in that moment. A precious life, birthdays, holidays, graduations, a wedding, everything you dream of for your child. It just shouldn't happen. While our hearts seem to break a little more each day, I know our angel is well and whole. How special that she gets to experience our ultimate goal in life.. Heaven. Exactly one year ago, I wrote about how we had picked her name, Avery Marie, how we had seen her sweet face on the ultrasound, how thankful I was for every kick and roll that I was feeling. I will continue to write about her, I've found it to be healing. We have a lot to learn about grieving... I won't call it a process, because theres no end to it. We are forever changed. I am determined that we will become stronger as we continue through life, not just get back to where we were. We have a lot to learn from other people... I pray that in time, we will be able to help someone, give perspective, and truly help people realize what matters. I absolutely love hearing people talk about Avery.. Yes, it stings to hear her name, but oh it brings so much joy.

A little background that led us to being bereaved parents...Pt.5

Mar. 11, 2015
Most of you don't realize what a huge deal this is, but today this momma was brought to tears, happy tears! Avery lost her sucking reflex (hence the feeding tube) and therapy has been working with her trying to get that back. Well, today (in her own timing, of course!) she started sucking just like she has never missed a beat. This is such a big accomplishment that with hopefully continue to improve so we can return to bottle feeding with her. I've heard more times than I can count that kids are resilient and of course I cling to that but this was exactly what I needed today. Avery has got so many barriers to overcome but baby, this was one of them! Thank you Jesus!

Mar. 16, 2015
Avery is (slowly) adjusting to being home. She is getting better and better at her sucking, handling movement and transitions better, and calming quicker, for the most part. We are so happy with her new pediatrician, which is a huge thing! Avery actually gained too much weight over the last week. This has never happened for us! Poor angel, she's come so far, I'm just so proud of her. (And I tell her every single day ❤)

We have soooo many thank you notes that we owe to more people than we can count. (I'm working on them...) So here goes a long list of thank yous...

Every single day, we are shown how blessed we are by cards, gifts, money, meals, fundraisers, and prayers. The meals have been ah-mazing... Seriously, we can taste the love. The generosity of people that just want to give so that Avery has whatever she needs is still overwhelming. Everyone's support at community fundraisers has been incredible! We regret we couldn't make it out to Randy's tonight to thank everyone. So thank you! Thank you for your time and hard work that you put into these fundraisers and thank you for supporting sweet Avery. And thank you for the sweet cards that tell us you're praying for us and you love us. It all means the world.

We are also eternally grateful to the amazing medical team at Brenner's who genuinely care about her progress. I know it's your job and you are just doing what you are trained to do but thank you. Thank you for caring about Avery. Thank you for growing attached to her. Thank you for helping Brad and I get through each day. You literally saw us at our worst and you still talked to us and gave us hugs. 😳 We really do miss you guys.

We've got a big weekend coming up with my sister's wedding and I would love nothing more than for us to go as a family of three but it'll be just Brad and I. These moments are when I wish I could go back to our perfect little normal life three months ago. But we are blessed. So blessed.

We love you, our angels.

Mar. 25, 2015
Taking a 'whaley' good nap.

April 6, 2015
We all knew she probably wouldn't like us trying to put this Easter bunny coat on her but it was pretty sweet. Bless her little heart. I have been reminded several times (there are no coincidences, momma says so) randomly that it's all about perspective. I try day in and day out to stay positive and see the good in our lives right now and I'll be honest, it's hard sometimes. We need to always look for God working in our lives because when you stop paying attention, you might miss it. We might not always get exactly what we pray for but when we pray for His will to be done, it is always perfect. That is my daily prayer. The good lord gave us this sweet gift for a reason and when we make our perspective that SHE is our purpose in life right now, the sleepless nights and the inconsolable times that just break a momma's heart are much more bearable. We have been blessed beyond measure and I KNOW that we would have never known this kind of love without going through such turmoil. I still pray every day that we will see our sweet one smile at us with that beautiful big smile. We would love nothing more. She will get there, in her own time, I just know it. We are constantly surrounded by so much love and I know she feels it. 

April 27, 2015
Friends, I know we haven't had many updates recently but today we need prayers. Avery was admitted back in to the PICU today for an extremely high temp and labored breathing. Right now, the team is trying to determine the cause for the sudden temp. Please pray that our sweet angel is back to her sweet self soon.

May 2, 2015
We have been blessed with this sweet angel for 8 amazing months. While our days with her are limited we know she was put here to show us a new and amazing kind of love.  Happy 8 months to the sweetest and prettiest girl in the whole wide world.

May 3, 2015
We always knew our sweet girl was our angel but now she truly is dancing and smiling with Jesus. Our hearts break with this reality; 8 months just isn't long enough with your baby. From the moment I first met her I knew my world was forever changed. I never could've imagined I could love someone so deeply. We were blessed with the strongest, sweetest, most loving, funny, beautiful little girl any two people could ever pray for. Our hearts will always have a huge piece missing but to know we will see that smile again brings a lot of peace. Learning to live without our Avery is not going to be easy and I don't know if we ever will, but she made us mommy and daddy and taught us a love that we never knew before. We have been so surrounded with love and support the last 8 months and we are forever grateful. I think Avery could easily be the most loved little girl I've ever known. She is the lucky one to go before us and live without pain and we couldn't want anything more for our sweet angel. Thank you from the bottom of our hearts for all of the love, prayers, hugs, and support. Thank you for loving Avery. Please continue to pray for peace, comfort, and healing for our families. I cannot wait to hear that little giggle again.

A little background that led us to being bereaved parents...Pt.4

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.

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.

"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!

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.

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.

Mar. 4, 2015
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.

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!! 

A little background that led us to being bereaved parents...Pt.3

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.

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!

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. 

Feb. 8, 2015
"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!!

Feb. 9, 2015
"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.

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.

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.

A little background that led us to being bereaved parents...Pt.2

Jan. 19, 2015
Today, Brad and I got to hold Avery again. A month ago, I would've never been able to imagine not holding my sweet girl every. single. day. Only holding her twice in 3 weeks has almost ripped my heart out. I just want to scoop her up, nestle into her soft little neck and kiss her all over. I want to take away all of her pain, discomfort, agitation, confusion, and restlessness. I want to trade places with her. Please pray for continued healing of her lungs and the ability to keep her airway open, so that's she is able to breath on her own. That will determine the next steps in this whole process.

Jan. 24, 2015
Blessed. We have never felt more blessed. In the midst of what we feel is a 'nightmare' we have seen some of the most amazing acts of kindness shown to our family, people being brought to their knees to pray for our baby, and our faith growing deeper every single day.

We are so thankful for the time, money, and love you have given to our family. We are just blown away by all of our amazing friends and family members that are doing all that they can do to help us. Every fundraiser (tshirts, spaghetti supper, Zaxby's night, Randy's Barbecue, Chad's Challenge 5k, and more!) and community prayer that has happened has left us saying 'wow' every single time. There is a lot of bad in the world but man, there is so much good.

Avery's Angels, we thank you from the bottom of our hearts. 

Jan. 25, 2015
Tomorrow's a big day... We will find out what this amazing group of doctors feels is best for Avery's heart. What kind of surgery is needed and when it should be. We pray for guidance and clarity for the doctors.

Jan. 26, 2015
Favorite part of my day. She nestles right in and falls into a sound sleep. ❤

The plan for Avery is to have open heart surgery on Wednesday to repair the VSD. After that, we will begin the weaning of the ventilator again to the point of extubation. Our prayer is still that she is able to keep her airway open on her own. We feel very confident with the team's decision to operate sooner rather than later; we know she is getting the best care.

I can't say this enough: thank you so much for the nonstop prayers. We can feel them and I know our God can hear them.

I was reminded of Exodus 14:14 today... "The Lord will fight for you. You need only to be still." Thank you, lord. 🙏 I pray we can just be still.

Jan. 28, 2015
I can't begin to describe my love for this girl. We were prepped today with "it's gonna be a roller coaster, just be ready" and boy has it been just that. Avery endured the open heart surgery and is being closely monitored. A short while ago, she had some bleeding that the surgeon decided needed to be looked at, so they went back in and fixed the problem. My sweet baby has gone through so much this past month and still has a long road ahead. Please continue to pray for her strength, healing, comfort, guidance for the doctors, nurses, and surgeons, and peace for our family. We love you all.

"She is clothed with dignity and strength. She laughs without fear of the future." Proverbs 31:25

Jan. 31, 2015
We are so thankful Avery's heart surgery is behind us. She did have some bleeding after the operation but it was fixed with another small procedure. Right now is just a waiting game (waiting is hard!!) to see how she handles her body's new 'flow'. She has had episodes of pulmonary hypertension, which gets pretty scary, but the episodes seem to be getting fewer and farther between. Right now, her little lungs need to continue to heal so that she won't have so much trouble when the time comes to try to get her off of the ventilator. We have heard lots of positive things from the doctors and nurses (who are the best, by the way) about her small improvements. We hold onto these little celebrations because each day brings something brand new and we have to stay positive for our sweet girl, who is fighting so hard.

Please hug your little ones tight tonight, we would give anything to be able to do just that.

We sure do love all of Avery's Angels.

Feb. 1, 2015
I hesitate to say that it's been a good day but it has been a good day! Her 'episodes' have been very spread out today and they have been able to come down on her meds a little bit. I am reading a book now about holding on to hope and it said something that really hit me... It says to "take comfort and find confidence in knowing that although the purpose in your suffering may be unseen, God does have a purpose, and part of that purpose is to display His work in your life." I have said since day one that there is a reason in all of this, I don't question any of it, and I know we won't be given a test without an amazing testimony coming out of it. We are so thankful for this little face.

A little background that led us to being bereaved parents...Pt.1

Dec. 30, 2014  
Brad and I have been blessed with THE strongest little girl in the entire world. After several long days of painfully watching her fight a nasty virus and pneumonia, going through respiratory arrest, and 45 minutes of CPR, she fought through with our amazing Lord giving her strength. It is going to be a long road but we know we've got a little miracle. Thank each and every one of you that prayed a prayer in her name. We love you.

(later that day) Please, please, please continue praying for our sweet Avery. Your prayers and her amazing strength have pulled her over one hurdle after another but we have so many more hurdles to overcome. We learned today that Avery was born with a hole in her heart 9mm in size which has caused some issues when paired with the pneumonia and virus that she has. Her little lungs and heart were literally at their breaking point. We need prayers for Avery's continued strength to fight the sickness she has, healing and recovery of her lungs (a machine is working for her lungs) as well as the rest of her body, guidance for the doctors and nurses who are making decisions for Avery's health, a smooth transition from the machine she is on to only a ventilator, and healing of her brain, as we don't know what kind of trauma happened to her brain during the long period of time with no oxygen to it. We also need prayers for peace and comfort for Brad and I as well as the rest of our families. This has all happened so fast we still haven't wrapped our head around everything. All we know is that we still have our Avery and God is good. God is amazing.

Jan. 8, 2015
Avery had a good night with the ECMO capped off, meaning her lungs were doing the work of the machine. The ventilator is still running bc her lungs need help being inflated since they are so heavy from the pneumonia and fluid. The plan is to take the canula out of her neck today, taking her completely off of ECMO. Big steps!! AND the X-ray shows improvement of the pneumonia!! We are so thankful for daily victories!!

(later that day) It was a successful day getting Miss Avery off of ECMO (hallelujah!) so now she is resting and breathing with the help of only the ventilator while she continues to recover from the pneumonia. The next big step is an MRI of her brain and despite what doctors are saying COULD be, we know we serve THE great physician who is capable of things unimaginable. Heart surgery is still in Avery's near future but today we are praising the fact that we have our baby and she is one step (of many) closer to being through all of this.  We are so thankful for our amazing work families, friends that we call family, and the amazing medical team that has worked with us.

Jan. 10, 2015
Small steps today... Avery has tolerated small changes made to the ventilator and X-Ray of chest looked better... We will continue to celebrate little victories for our little angel.

Jan. 12, 2015
"All of God's grace in one little face" couldn't be more fitting for our little Avery.

We know that He is working through her and healing her tiny body. She has done so well coming off of the IV medicines and is keeping all of her 'numbers' at great levels. She should be off of the ventilator in a couple of days (🙌) and then it will be determined if she is able to keep her airway open on her own.

We have loved seeing her beautiful blue eyes today, as she is coming off of sedation. Brad and I both cannot wait for the day we can hold her and kiss her all over.

Tomorrow, Avery will have an MRI done of her brain. This will show brain activity and any damage that might have happened. We are staying positive though because this little girl has been winning one battle after another right before our very eyes. Prayers tomorrow for an EXCELLENT scan, peace for Brad and I, and continued healing of miss Avery's lungs.

We love you all so much and are eternally grateful for every single prayer lifted up for Avery.

Psalm 91:2

Jan. 14, 2015

I'm gonna keep this update short and sweet, as we are trying to process everything and every day brings something completely new.

When we met with neurology today, we received a less than positive report. A report that knocks the breath out of you. I won't go into details but we know that the neurologist doesn't have the final say. Avery WILL continue to prove the medical world wrong, beating to her own drum. She's done it since the day she was born.

We continue to have set backs every day but at the same time we have silver linings. It is amazing how much this little girl has done in her first four months.

We love all of our 'Avery Angels'. We love you for your prayers and for loving our Avery so much.

Jan. 15, 2015"It is The Lord who goes before you. He will be with you. He will not leave you or forsake you. Do not fear or be dismayed." Deuteronomy 31:8

Be brave, my little girl. 

Jan. 16, 2015
Last night, after waiting until almost midnight, we were able to get Avery out of her bed and hold her. I think all three of us needed that snuggle time, I just know she knew what was going on.

She's got a big day ahead of her with several little procedures to try to smooth out some bumps in the road but we are looking forward to more snuggle times. I think it should be in the doctors orders.

We are so thankful for little moments like this.

Jan. 17, 2015
"I can barely stand right now
Everything is crashing down
And I wonder where You are
I try to find the words to pray
I don't always know what to say
But You're the one who can hear my heart

Even though I don't know what your plan is
I know You're making beauty from these ashes

I've seen joy and I've seen pain
On my knees, I call Your name
Here's my broken hallelujah
With nothing left to hold onto
I raise these empty hands to You
Here's my broken hallelujah"

I found this song so relatable. There are no other words for what we have except a 'broken hallelujah'. We don't understand things right now but I know He hears our hearts and our cries. Yesterday, my sister sent me a quote that is so true.. "We want the testimony but not the test." I pray every day that all of the praise, honor, and glory goes to Him. We serve the mighty physician that can do things that medicine can't. I know He is working right in the middle of this chapter in our lives and is keeping Avery safe and making beauty from these ashes.