Avery’s heart

Every post I’ve written since this one is about more than whatever I’m writing about: it’s about coming to terms with the recent news we’ve had about Avery’s heart.

All the comfort food (the gravy-soaked chicken, the soup, my return to baking cinnamon rolls, which I’ve associated with grief/comfort ever since reading Raymond Carver’s “A Small, Good Thing” ).  The thinking about Down syndrome, and advocacy, and how hard this road can be, but how beautiful, too. The tender memories of Avery as a baby, and particularly the phone call from the heart specialist.

It’s ironic that all of this began right around Valentine’s Day, when I saw hearts everywhere, hearts of love, hearts of hope, Avery’s heart on the ultrasound machine.  And now, it’s come to this.  After two echocardiograms and an electrocardiogram, it’s clear: Avery needs open heart surgery in Seattle.

What has happened is similar to an Atrial Septal Defect, which is a hole in the septum that separates the upper two chambers of the heart. Avery’s is a weak spot that balloons out like a wind sock (the doctor’s term, which I found particularly descriptive).  It needs a surgical repair.

So many things about this Dx are similar to five years ago: our shock, our feeling of being completely blindsided. Our fear, our worry. But even more so, now, is the feeling of sorrow. I wish this wasn’t happening to Avery.

Avery is the kind of kid who, when he’s in for his blood draws, will shed one giant tear, then reach out and hug the technician, because he sees how bad they’re feeling, too. He’s the kind of kid who gets a standing ovation after his well-check appointments, because he’s been so sweet and good and polite. He’s the kind of kid who makes people feel lucky, even when they’re having a bad day, which is a little bit heartbreaking, that he’s the one that has to face such a big hurt.

Tom and I are handling it each in our own ways. I’m baking up a storm, and hugging all my kids a little too tightly, and every once in a while I find myself in front of the fridge eating peanut butter straight from the jar.

Tom has decided to repaint the whole house, which I take for his need to fix things, to make things right, only in this case, there isn’t much we can do, other than wait for the surgery date. So he’s painting again, just like six years ago, and I half-jokingly asked, “What should I write on the walls, this time?” His answer, “Let up.”

I thought about what I would write, now, six years older, six years wiser. I thought about the words “strength,” or “good health” or even, “help us.” But in the end, I wrote just one word, very tiny, almost tentatively. It was the only word that fit, the only one I know I will never regret. I wrote the word love.

Some things are very different about this time: Seattle Children’s Hospital seems to be a dream hospital, a place I’d swear was designed by a group of really smart, very caring parents, as if their own children would be staying there. I’ve already learned so many lessons as Avery’s mom–how to seek out good care, how to speak up for my child, how to ask for help.

And I’m asking for your help, now. Please send your prayers and healing wishes. Please share your experiences, if you have any knowledge about heart surgery. And please keep a good though for us on March 11, which is the actual day of the surgery.

From my heart to yours, thank you.


97 thoughts on “Avery’s heart

  1. You’re coping much like I do: baking like crazy and hugging my kids. My kids are 17 and 22, so they don’t tolerate the hugging as well as your little ones might. 🙂
    I just donated “Road Map to Holland” to our school’s parenting collection. I hope someone finds peace in it, and most of all, I hope there is peace for you during and after Avery’s surgery.

  2. I’m here thanks to MOM-NOS. Your family – and especially Avery – will be in my thoughts and prayers.

    You asked for experiences, so I’ll share the one that I have. I have a niece with Down Syndrome who was born with a hole in her heart (sorry, I don’t know enough to give you more details on that). After waiting years for orthoscopic surgery to repair her heart to come off of the experimental list, she had the surgery to close the hole. The change in her body was immediate and amazing! Where she had been extremely petite and fragile pre-surgery, she grew and grew post surgery, and is now an incredibly healthy and thriving teenager.

  3. Oh Jen. I am behind on my reading and I’m just now seeing this. On Avery’s day. I’m thinking and praying hard for you. You all are very strong and will get through this.

  4. Jen – We will be thinking good thoughts for you. Our son Matthew had open heart surgery at Children’s Hospital in Boston last September to fix a congenital heart defect – he was just 4 months old. It is scary to watch your child go through it all ( most people think heart surgery and they think or middle age), but you will in fact come out stronger on the other side. Take heart that you are getting care at a great place, but don’t let that stop you from asking questions and being the best advocate you can be for your child. No one knows your baby like you do! If you’d like to talk or vent more please feel free to email me. We wish you all the best.

  5. You really touched my heart with this post. I cried when I read what a loving and tender boy he is… how he hugs his technicians through his own tear.

    Many hugs to you. Prayers and Positive Thoughts today and the ones that follow….. Thoughts of love for your sweet young man.

  6. Thinking of your family today, and hoping for the smoothest medical sailing possible.

    Hoping that all this affection and goodwill is helping to keep you all afloat!

  7. I’m here again, because I can’t shut up.

    Went to Costco again today and realized that I was wrong, stamp prices go up May 11th but I saw the “M” and 11th and immediately thought of Avery so I read it wrong.

    We are starting our nighttime routine, don’t know when I’ll get computer time next, but wanted you to know that as I go to sleep I will pray for God to be with Avery’s surgical team. Especially the anesthesiologist, because that’s where my fears lie, and I know others will pray for the surgeon to be careful and true.

    Big fat hugs.

  8. I’ll be keeping Avery and your family in my thoughts and prayers. My daughter had a PDA closure at 15 months. It is amazing how fast our kids recover.

    I loved your book so much and feel like I know Avery. Big hugs and wishes for a speedy recovery!

  9. We will keep you all in our thoughts and prayers. Nathaniel has been through several major surgerys and I know how I felt…hugs to you all esp Avery…

    Sara & Nathaniel

  10. Here’s something else that just occurred to me: I took lots of photos, even down to the dosage monitors they had for his drips and I think it wasn’t just documenting what was happening so I wouldn’t have to rely on my memories, but also it helped a little to distance myself occasionally through the lens. Kind of like taking a break to walk, but without leaving the room. More of a mental break from everything I was thinking and living in the moment.

    I think of you and your boys every day. My husband says I’ve been on edge and I think I’m re-living my stress because I’m thinking of you so often. Heck, every time I go into Costco (every 4 days for 4 gallons of milk) they have a big stamps display that announces that the postage rates are going up March 11th and it makes my stomach lurch. Took me maybe 3 trips before I realized that it’s not the postal rates that are stirring me up!

    We may not be in Seattle with you, but boy, we are *with* you. While you have to live through the moments of this yourself and in some sense be alone with the experience, you are not alone. And since you might convince him to read again, Hi, Tom! Just because we are talking Mama-to-Mama doesn’t mean that we’ve forgotten the dad here. You take care too.

  11. oh Jennifer, I’m so sorry Avery will have to be going through this surgery 😦 I know as parents we just want to protect our kids from ever feeling any hurt and we just can’t do that, so we hurt for them. You can add me as another one who is sending prayers – for Avery, for you and Tom, and Bennet and Carter too, and the doctors and nurses taking care of Avery, and for a speedy recovery. Hugs to you my friend.

  12. Jennifer,
    I will be thinking of you, Avery, and the rest of your family & friends each day from now until March 11th. I am so sorry you were blindsided by this heart condition and need for open-heart surgery. Our little Whitney who was born this past August had her open-heart surgery on Dec. 1st. Here is a link to our blog on the day of Whitney’s surgery: http://acbyron.blogspot.com/2008/12/whitneys-big-day-open-heart-surgery-12.html
    I know it helped us tremendously to read a blog of another family going through the same thing almost a month to the day before us, Laurie at Days with Dylan did a great job of blogging about Dylan’s heart surgery, here is the link to her surgery blog: http://dayswithdylan-laurie.blogspot.com/2008/11/small-glimpse-as-to-what-it-was-like.html. These heart surgeons truly are miracle workers and I just know you will have a miracle with Avery at the Seattle Children’s Hospital!!!!!

    p.s. I loved your book 🙂

  13. I’m so sad for you that Avery has to go through this. Your post brought tears to my eyes. I am sending you a Premio Dardos blog award. I understand if life is too busy to respond to it, but I think you deserve it nonetheless. I will keep you all in my prayers, including the doctors and hospital staff.

  14. Jennifer,
    I am storming the heavens with prayers for little Avery’s heart surgery. And also praying the Great Physician will calm his mama’s and papa’s heart through these days and nights until Avery is well.

  15. Jennifer,
    My thoughts and prayers are with you. I think about your family all the time after reading your amazing, inspiring book. I hope that you feel the love and support pouring in from around the world on surgery day. I pray for Avery’s health and for your family to have strength and comfort during this time.

  16. Prayers from SC. I just spoke to a group over the weekend about Wil, his birth, diagnosis, and handing him over for heart surgery. An ASD and VSD. I remember it like it was yesterday. I also talked about the strength we found, through the words, prayers, and presence, of so many friends. And how Wil, as soon as he woke up, gave me a smile to let me know all was well.

  17. You got it – I will be sending my best prayers and love and good vibes Avery’s way – I am so sorry to hear this news – I haven’t popped over here in a while, so I didn’t know – big giant internet hugs coming your way from CT… I KNOW he will be OK…and you will be, too….

  18. From heart mama to another, big prayers and love from the Colorado Mountains to you and yours. We have a Heart Day of our own, November 3. That first year was so hard: the waiting for the surgery to end, getting through the night. etc. We are now four Heart Day celebrations older and, I swear, it is the happiest day of the year in our home. Good luck, we will be thinking the good thoughts for all of you.

  19. Hi, Jennifer. I am late coming to this post, but my prayers for you guys will be strong. I don’t know much about open heart surgery, but I do know that there have been incredible advancements in that area in recent years. So, if this has to happen, it is good that there are wonderful doctors and state-of-the-art technology for it. I know, that may be small consolation in the face of the fact that you have to deal with this, but think how much harder things would have even been ten years ago.


  20. Jennifer,

    Seven years, one hundred eighty eight days ago, my son had open heart surgery. It is one of the best things we have been able to do for him. It was the hardest thing we ever had to do. You are in good hands, and you certainly have our prayers. Ben was only 6 months when he had his heart repair (tetralogy of fallot). It made a huge difference in him.

    Last October during 31 for 21, I wrote about our experience over several days in my blog(October 8+ four entries). A dear, new friend of mine was facing surgery for her young daughter, and I wanted to share to help her. There is a link to her blog as well. She has pictures, and while hard to look at, may help you when you see your son after his surgery. I may have found them hard to look at before I lived something like this, but I see them and think about how her heart is healing and better than ever.

    Right now March 11 looms with significance of the unknown. In the future it will be Avery’s “heart day” and a day to celebrate.

    Meanwhile, I will be saying prayers for you and your family, knowing you will be in good hands.

  21. Jennifer,
    Kellen has had all of his surgeries at Children’s in Seattle. We live in the area. Please speak up if there is anything you can think of that we could do for you when you are here.

  22. Jennifer–
    Avery will be in our prayers. I am so sorry that you are all having to face this surgery. I know how hard that can be to watch your child have to face something you wish you could do for them. It’s just not fair sometimes. I will be praying for strength and for comfort for all of you during this difficult time.

  23. Gracie just turned 3. She had an AV Canal Defect plus Tetralogy of Fallot. It seemed like everything that could be wrong with her heart WAS. Surprisingly, she was a very strong, active baby. But she had what they call “Tet” spells where she would get upset and almost pass out. So at 10 mos. we drove up to Kansas City (overnight because they thought it was that serious) and spent our first week at Children’s Mercy, where she had her first surgery to place a shunt. At 16 mos, a catheterization, and at 17 mos the full repair, open heart surgery.
    It was scary, no doubt. The hardest part was handing her off to the nurse and saying goodbye just before. Once she was out of sight, I cried and cried. I read a book the entire time, and my husband played PSP. The hourly updates really helped. The staff was awesome. Seeing her all hooked up to drugs/machines was also very difficult. My husband was my rock through it all. And prayer, of course. And emails from family. I wrote daily email updates and that also helped.
    My thoughts/prayers will be with you and Avery and your family!

  24. Prayers for Avery, you and your family. I’m so glad you will be at such a great hospital. When we were awaiting Grace’s arrival with a heart defect, my husband added a whole room onto our house. I know Avery will be fine.

  25. Damn.

    All my prayers and love and hugs to you, mom to mom. You can spread them with the rest of the family.

    Our Biscuit has had 2 open heart surgeries and 2 catheterizations. Our experience was that the caths were MUCH worse on him and us. It certainly helped that we loved our hospital and our surgeon (my husband and I have differing opinions on the cardiologist — I loved him that’s why we didn’t switch). And the nurses, I could not have made it without those wonderful nurses.

    Our son was born with a different defect, and it was completely corrected with the first surgery at 10mo. We were blindsided by them finding more probs and deciding he needed a 2nd surgery at 20mo. (The caths were at 1mo and 18mo.) These are all the details I think I’ve ever shared on the internet, but I would more than happy to email with you about what we went through, etc. if you would like.

    The short version is to live in the Zen-like moment that day; don’t think ahead. And don’t try to wear any other hat than “Avery’s mom” — we didn’t even let the grandma’s come sit with us at the hospital because it would have meant being a son & daughter instead of just parents for those hours. Set up a phone tree (or direct everyone to something like a Care Page) so that you don’t have to tell the story of the updates over and over on that day. And drink water!

    I think I’m finally going to post a photo of him on my blog. You’ve inspired me to share more. But don’t come come looking for sweetness. What I have in mind may be something you don’t want to see until March 11 of next year.

    Thanks for sharing yourself. That’s what makes it so easy to care and worry about you.

  26. Oh my! I found myself in tears reading this. Avery is exactly that….LOVE. Oh I wish he didn’t have to go through this but you know what? He is going to amaze you again and you are going to fall helplessly in love with him all over again. My biggest prayers will be with you on March 11th, and my biggest hugs. Take care beautiful family!

  27. Joe has a complete AVSD at 15 weeks old. He was in Mott Children’s Hospital in Ann Arbor (also a dream hospital with dream-team doctors). And yet…. I learned what hell was waiting with the other parents in the cardio-thorachic ICU special waiting room. The surgery was a success, the recovery in the ICU was longer than expected, but now, six years later, he his healthy, active and rosy cheeked. My husband now defines “faith” as handing our son over to the anesthesiologist when everything in our logical minds screamed “no.” I’ll be thinking of you. I am glad Avery is in good hands at the Seattle Hospital.

  28. Your whole family will be in our prayers. It’s been 9 months since Matthew’s open-heart surgery, and I can tell you that the dread and anticipation of the whole thing was far worse than the experience itself. I was amazed by how well Matthew did, how comfortable his doctors and nurses kept him, and what an incredible little trooper he was. And, you’re right – Seattle Children’s hospital is a wonderful place, and he will have only the best care there. Lots of love and prayers going your way.

  29. You continue to be an inspiration to many. Now is your time…lean on your husband, family and friends. You ALL will be in our thoughts to prayers, including the doctors and care specialists at Children’s in Seattle. Continue to believe and pray. Avery is a champ and will continue to amaze you and everyone else.
    Your WI fan,
    Tanya Husby

  30. Oh, Jennifer. I’m so sorry your family has been thrown this curveball. We’ve recently been thrown a curveball as well: my husband has cancer. I only tell you that to let you know that I understand completely the feeling of being blindsided.

    Avery and your lovely family will remain in my thoughts. Much love and healing to you all.

  31. more love sent your way from bern. clearly you and your dear family are surrounded by flocks of love… as are the people who will care for you in the hospital. i see only healing for all of you.

  32. Oh, Jennifer. I hadn’t been here (or anywhere on the internets) for a couple of weeks and clicked over here to read this. I’m so sorry that Avery and you and Tom are facing this. Gosh, Simon just had his tonsils out and I was a nervous wreck!
    I will be thinking of all of you today and every day, especially March 11th, and hoping all goes as smoothly as possible.

  33. Hi Jennifer! I read your book shortly after Lily’s birth last May. I should have written earlier to let you know what comfort it brought me.

    Lily had surgery to correct her AV canal defect last September. While it was the absolute most difficult day of my life, it’s a day we all had to go through in order to keep our precious little girl. She blesses and amazes us everyday.

    Know that people all over the world will be lifting Avery and your whole family up in prayer.

  34. I’m so sorry that sweet Avery has to go through this. But I am glad that the medical science and skill exists to correct this problem and improve his quality of life, and that you have access to a great hospital.

    I’m praying for Avery, your family, and Avery’s doctors.

  35. I have lurked on your website for a while. I forget how I stumbled on it in the first place now but I have kept coming back to read your beautiful posts. I baked your raspberry chocolate cookies at Christmastime and my kids loved them. I work at the University of Washington. I have met many Children’s Hospital doctors through my work and through my daughter, who was born with a brachial plexus injury. Everyone there is wonderful. You and Avery will be in good hands. I hope that is a small comfort. Your family will be in my prayers.

  36. Dearest Jennifer – So much to say, but here a few thoughts based on my experience in handing my baby Vivian over for major open heart surgery a year ago:
    *Do what you need to do as you approach surgery day, and be gentle with yourself as you do whatever that is: for me, that was four and a half months of holding my newborn and having Home&Garden TV on constantly, so that my mind could remodel the kitchen instead of thinking about Viv’s inevitable surgery. Baking and peanut butter eating sounds like a perfect outlet. Do what you need to do.
    *When I imagined Viv’s recovery in the hospital, I imagined myself going home at night and scrubbing floors and cleaning out closets – that I would be constantly anxious and unable to sleep. Instead, I found that post-op time so incredibly healing. As Viv’s heart healed, so did mine. The doctors and nurses who took care of my baby so beautifully also took care of my husband and me. Definitely use the “coffee test” – if a nurse or doctor isn’t taking care of your Avery in a way that also takes care of your hearts, think about asking for a switch. Surrounding ourselves with amazing people was so healing and, in my opinion, essential.
    *The prayers and positive thoughts of our friends, family and strangers were tangible. I immersed myself in knowing that people were thinking of Vivian with such love and hope. That was an amazing feeling.

    I am sending all my prayers and love and hope for your Avery, you and your family, as I know countless other are. My heart is heavy, as I so completely empathize with what your mamaheart might be feeling these days. (Please feel free to email me if you have any questions or ponderings.) Love, hope, faith and courage, friend!

  37. Hi- I read your book after finding out our unborn son has DS back in December. He is due in May and has a heart defect- AVSD- not quite what your Avery has. He will be having surgery a couple of months after he is born. I will keep Avery in my prayers as I know this has to be so hard. It’s hard for me but I do not even know my son yet so I know it’s different when you’ve been with him and can’t imagine life without him. I’m sure things will turn out fine! Just know you have a lot of people you don’t even know praying for him! Oh and by the way our son’s name will be Bennett! We came up with the name before I read your book but I thought it was kind of neat!

  38. Oh wow. I was not expecting to read this at all! I will be thinking and praying for you and Avery and your whole family. If you have any questions, please do not hesitate to ask. I don’t know how different OHS is when your child is a bit older, but I DO know that our kids are miraculously strong and courageous. Avery is no exception there! Much love to you.

  39. My thoughts and prayers are with you, Avery and your family! He has so much love going into that operating room…from his family and so many of us around the world! Hugs!

  40. I feel so sad reading this, that you all have to go through it.

    The words painted on the walls were the part of your book that struck me most (as in, stopped me in my tracks…other parts had just as much impact in a different way).

    When the tough times come, our innocence is somehow shattered, our vulnerability somehow illuminated. Our hopes and dreams seem to fade from rock-solid to vapor in an instant, and we are left wondering if we’ve been too trusting, too naive.

    Finding balance–being scared but finding hope anyway–is a lifelong challenge. And each rough patch reminds us of this.

    The end of this post–your choice of the word *love*–is perfect, and is perfectly you. You’ve already sorted out what’s most important (your love of Avery, of family, of life) and the path you are going to take.

    I hope you can feel all the good wishes being sent your way. You are all surrounded by prayers for strength, healing and peace…

  41. Avery is a strong little guy, his brave spirit will help him overcome this challenge. The POWER OF YOUR LOVE is his best healing energy source. I know Avery is going to be OK ~.

    My niece’s heart was not fully developed when she was born. She went through OHS to reconstruct her heart when she was 3 months old. I know in my heart that her courageous spirit, the force of our love and the power of our prayers helped her, she made it through. 😀

    I’m praying with all my being for Avery and all of you, starting now, every single day!!!. I will be sending healing energy his way all day long on March 11th and during recovery time. Jennifer, please know you are not alone, we are with you in spirit. Everything is going to be OK ~. Please let me know If you need anything.

    Sending LOVE, PRAYERS, HEALING ENERGY, STRENGTH and POSITIVE thoughts to all of you ~

  42. All of my heart felt thoughts and positive prayers being sent Sir Avery’s way. May he be surrounded by angels the whole time he is in Seattle, and that his recovery is peaceful and speedy.

    All my love, TM

  43. Our family will be sending prayers and all our love for Avery’s surgery on March 11th. I understand the fear of the unknown very well when it comes to heart surgery — and prepare yourself for the post-op visuals because they are scary…BUT the most remarkable thing happens. I promise. Soon after you’ll see YOUR Avery emerge and be strong and healthy. I remember lamenting over Gabriel’s perfect little chest prior to his VSD repair. I thought of his upcoming scar as a reminder of all thing out of my control, and of my fear. But you know what? His beautiful scar reminds me only of his strength and how vital is life is to our family. The grace of Avery will protect him and soon you’ll be in wonder over how well he is doing. Sending lots of support your way. ♥

  44. Jennifer – That is terrible – I am sorry to hear it – having had Hannah have an AVSD repair – let’s just say you and Avery and the rest of your family will be in my prayers and thoughts every day until Mar 11. I still look at hannah and marvel about that time. I trace her ‘zipper’ when she pats it to indicate her heart. Avery will be fine. He’ll be amazing – you’ll be amazed and like we were, forever grateful. Thankful for the wonderful skills and kindness of medicos but mostly for the precious gift of life – something we still try not to take for granted. Take care

  45. Oh Jennifer, I am so sorry that Avery and your family have to face this now. John had OHS when he was 5 months old. He went in on a Wednesday and I kid you not was home on Saturday. It is very scary and seeing your child post op will take your breath away, but don’t lose sight of how strong he is. He will come through this just fine. You will be a wreck, but he will continue to amaze you with his spirit, determination and strength. I’ll be saying lots of prayers. If you need someone to talk to–just email me.

  46. Oh Jennifer. Wow. I was NOT expecting to read this when I clicked over here.

    Your sweet boy. I will be thinking about him, and your family, on March 11, and every day and night leading up to that. And afterwards. Big, giant, miraculous healing vibes coming Avery’s way.

    You can do this. Tom can do this. And, most of all, Avery can do this.

    From a mama who has been there…

  47. I will be praying for avery’s ease in surgery and speedy recovery. We went through this while Nik was still in the NICU. I won’t lie; it was terrifying to think about. I do have some “practical” bits of information to share via email. I will email you tomorrow after my own little one’s surgery to remove and replace a feeding tube and do an endoscopy.

    Sending you love. So much love. xo

  48. I will absolutely be thinking of you and sweet Avery on the 11th.

    We haven’t been though surgery, but the “wind sock” description sounds very much like what M has.

  49. I am 7 months pregnant with my daughter, Ivy, who has DS and will need surgery for the same thing at about 3 months. Your book and story have inspired me so much and made me start to enjoy my pregnancy and baby again after being shocked by the results of the amnio.
    Our whole family will be praying for Avery and thinking of him often. You have an amazing family!!
    Much love- The Leake family

  50. Jennifer–I wish I knew what to say. Of course, as always, your writing about this reveals such grace. I am praying for Avery, and for you, and your family. I am sending good, healing energy. You sweet boy is strong, as are you.
    If I could send a hug over email, I would. If I could come and hold your hand, I would.
    Please know, so many people, many of whom you’ve never met, are holding Avery’s heart, and yours, in theirs.

  51. oh my god! YES YES! prayers are streaming out of me in fat links, like a never-ending string of sausages. my own heart is now in my throat after reading this even though i know, I KNOW avery will come through this with flying colors. I KNOW. how do i know? I KNOW.

    march 11.

    sausages up until that day and then beyond.

    please let me know what more i can do. meet you at the airport? i live in massachusetts, but if you really needed the ride, i’d be there.

    xxxxxxx times a million

  52. Sending healing thoughts Avery’s way. I’ll be thinking of him. My Caleb had is OHS at Mary Bridge Children’s hospital in Tacoma, WA. Avery has touched so many lives through your book and blog. We’ll be repaying the gift on that day by praying for him. It’s funny that you wrote love. This diagnosis has stripped away the detritus of life and left the only important thing…love. If I had to describe this first year with Caleb, I would use three words, “love, strength, and surrender”.

  53. If you need anything, anything at all, please don’t hesitate to call me.

    E has had some fairly weighty blood issues in the last week. Troubling stuff. I have been worried sick. I know how the worry about the potential storm can be, been there, done that, many times.

    I’m sure Avery will do just fine. Good hospital. Good doctors. Good vibes, good vibes coming your away.

    All my love…. all my love…

  54. hi jennifer,
    my sweet ben boy also had an ASD repair, when he was three months old. i can perfectly remember my fears and the darting thoughts surrounding that time. there was no clarity. just a mask of confusion.
    what surprised me the most, was coming to the realization that this was really going to happen. and that it was going to happen to my child.
    i’ll be praying for avery and for your family.

  55. PS- is there anymore I can do? If you’d like to talk about the surgery,my experience please feel free to contact me. I will say it is remarkable that the kids are up and walking around within 24 hours or so of the surgery and mine was home within 4 days from start to finish.

  56. Jen and family- so sorry that you all have to go through this. It can be very frightening to face this kind of surgery and so hard to witness the experience for your child. My daughter was 4 when she had her AS and patent ductus repaired at Children’s Hospital in Boston. She had been diagnosed at age 1 1/2 during a routine ultrasound screening despite no murmur or illness. It was a difficult time but good to get it over and know that her heart was as good as new so we could move on.The blessing of DS is that many children have this silent danger but because the screening is so thorough for Kids with DS it gets caught early and there are virtually no longlasting medical effects when caught in childhood. Will you get a Care Page? It’s a kind of way for folks to keep track of things long distance- Children’s hospital offers one and it was so helpful since we have a lot of family long distance. Gosh, this is bringing back a lot of memories… I’ll be thinking of you and your son…

  57. Oh Jennifer. I am so sorry to hear of this news. I will absolutely be thinking of you all on March 11.
    Our little guy, Dylan, is now 8 months old and had OHS on November 4th. The surgery was meant to repair a complete AV canal defect, however when the surgery began they found an additional defect called an AP Window. We later found out that the surgical team in Boston had never before seen an AV canal defect with an AP window. Ever! This added an additional 4 hours onto an already 4 hour long surgery.
    It was hard, Jennifer. The most difficult day of my life. But, you know what? We got through it and our love for Dylan grew even stronger.
    You will see.
    Hang in there. I’m thinking of you…
    ((Big Hugs))

  58. My Archie had heart surgery when he was six-weeks old. I remember how very scared we were, and how very sick our baby was. But we made it through, all three of us, even though the surgery didn’t go as smoothly as we expected it would.

    I’ll be thinking of you all and sending many healing thoughts your way. I’m so sorry you have to go through this all now.


  59. I’m praying for you. And sometimes open jars of peanut butter are really the only dressing you can give wounds of your soul, in my opinion!

  60. I am an absolute lurker.Never have posted just enjoyed the read but found myself drawn to post on this one.We have a little miracle of our own.Not yet two but one of these darling ones who got hit with everything under the sun … and then some.AV Canal repair being actually the least of it,in hindsight.Although she was a baby,not old enough to know,like Avery,the feelings for you and I are much the same.Fear,trepidation.Sorting through the unknowns.But to this I say,what I know you know because as I have said before,I have been here.I know your words and have heard your heart through them.This too you will wade through and come to the other side.The in between times will take care of themselves.You will see to that.And Avery will show you the way.That I promise.This road once again will be forged and fought with your precious Avery in the lead.As you process your news I send you prayers for peace and strength and the knowledge that this too will be put in the been there,done that,category.All our best,Zoey and her mom Heather

  61. Sending you all the healing wishes my heart can muster. March 11th is Kailey’s second birthday…the day we got the news about the common bond between my daughter and your son. I am sure it’s a good sign from the universe. Much love.

  62. I’m so sorry.I will be praying for your sweet child.I will be praying for God to direct the surgeon’s hands and for Avery to heal quickly.I’m praying now and will be praying everyday until you let us know how he’s doing after his surgery.

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