I've been surprised at how well we've all adjusted to being home from the hospital. Obviously we are all thrilled to be home, but it also is a time for decompressing after the roller coaster ride we've been on. Not just for six weeks while Drew was recovering from surgery. But for about four years since his last heart surgery. When he was four months old they told us he'd be needing another surgery around 2 or 3. And then as 2 crept closer they said maybe 3 or 4. And then once we reached his third birthday we were told he could probably wait until he was 4. The whole time we were preparing ourselves to hand our baby over for the third time and trust that these strangers, who don't know him and love him like we do, would save his life.
Anyway, we've been dealing with home life really well. This morning Drew had a follow up appointment with Dr. Mainwaring (everything looks great). Since we were at Sutter we visited another heart family who is on their own roller coaster with their beautiful 3 year old daughter. And the emotions came flooding back. My heart breaks for this family. There is nothing horribly wrong with their daughter, but it's the highs and lows that drive you crazy. She had a great morning on Saturday, walking a lap around the floor. That night she was in septic shock. Monday she was responding well to the antibiotics, talking and spending more time awake. Monday night she desatted and they had to double her oxygen to 4 liters and put in another chest tube. So I've been upset. For the first time since we've been home, I've been crying. What is wrong with me? I don't cry when it's my own child, but I can feel the pain of the mother of this other little girl. I'd like to think that I'm just a compassionate person, that I care about this other family. But I think some of it is that I see my family in her family. I recognize their pain because it is our pain. I hear her daughter's cries, and I hear Drew crying.
I don't know exactly where I'm going with this. I guess I'm just sharing this experience with the internet. But for those of you who are not familiar with this world of heart defects and heart surgery, just know that for most of us, it is not over after our kids have their surgery. There is no "last surgery." The doctors do what they can to give our kids a chance at life, but the reality is that most of them will need more interventions, more surgeries, and we don't know when. So we all do our best to live life to the fullest, but somewhere deep inside we live in fear of when that day might come.
OK, so I don't want to end the post on that cheery note, so I'll share some good news too. Today after our visit to the hospital I took Drew to the zoo. And it was the very first time that I didn't bring the stroller with me. Because he walked by himself the whole time we were at the zoo! He was running between exhibits checking out all the animals. He did ask me to carry him a couple of times, but this is such a huge increase in his energy and exercise capacity! Yay Drew!
Drew
Drew is a happy 7-year-old who loves his family, his friends, and everything Star Wars! He was born with a CHD, specifically interrupted aortic arch, VSD, hypoplastic aortic root and DiGeorge Syndrome. He has had three open-heart surgeries, the most recent was in May 2008 at Stanford. He is so strong and brave and we are very proud of him.
Ava
Ava is a spirited 5-year-old girl. She loves her family, friends and climbing, jumping and dancing. She brings us a lot of joy and a lot of drama! She is heart healthy. We love to see all the adventures she has!
This is how Drew's heart is now!
One and a half ventricle repair 1) VSD closed with a patch 2) Conduit from right ventricle to pulmonary artery . Drew still has the SVC connected to the PA in the upper left. Thank you Dr. Hanley and Dr. Mainwaring!
17 comments:
oh honey i just want to give you a big hug after reading that. you are precious and strong and just plain amazing! i love you and am so thankful to know you and call you friend. praise God for your compassion and love for others-what a blessing you are.
XOXO
-rose
there are SO MANY people who are lucky and blessed to have you--however briefly--in their lives. you are compassionate and empathetic, which makes you the amazing person you are.
Awesome for that increased energy! Awesome for your normal feelings. You are still "fresh" out of your own ride and you see yourself in this mom. Beautiful, compassionate, emotional etc. it is you all over again but this time you are "allowing" yourself to cry.
Thanks for embracing them!
Andrea
THANK YOU for putting this so well. This is what I have been trying to say for ages but nobody gets it. I think I will quote you on my blog at some point!
Here is the bit that hit home for me:
"There is no "last surgery." The doctors do what they can to give our kids a chance at life, but the reality is that most of them will need more interventions, more surgeries, and we don't know when. So we all do our best to live life to the fullest, but somewhere deep inside we live in fear of when that day might come."
Shannon
Oh...I'm so sorry that you're still feeling like the roller coaster isn't over yet (I know..it never is). A good cry is nothing to feel bad about...your empathy towards others is amazing and we all love you guys!!!
How wonderful that Drew cruised through the zoo without his stroller...good luck...I see a WILD MAN in your future!!!
Love,
Kathy
I am so sorry Andrea. I know that this has not been an easy journey for you or your family. I am amazed at your strength even though you may not feel strong, you are an amazing person and Mother! Continuting to pray for you. Please dont hesitate to call if you need a listening ear! I love you!
Dee
Drew definitely has new energy...running around the zoo! I can just picture it. This makes me sooo happy.
You're right. It's never "done." People always say to me, "So, everything is good now, right? You're done with surgeries?" This makes me sadder than anything because we DON'T KNOW. It's tough! I also experienced (and am still experiencing) many sad moments well after surgery was done, and about other people's children. I think that since we are so strong for our kids, we "let it out" afterwards for others, when we don't necessarily need to be so strong.
I sympathize with you. I want to give you a big hug. Give that growing, energetic boy a giant hug from me!
Wow, it's like you said everything that i'm feeling right now. I needed to read that. Being a new heart mom is a challenge.. watching my son suffer, and look at me with those fearful eyes really breaks my heart. I want so badly to be in his place, have nurses poke me, have 3 chest tubes, have all the nurses mess w/ me every hour. And then, I realize that I too will be in this same situation in a month, and I couldn't be happier about it. It sounds weird, but I want to suffer like he has, and know exactly what he went through. I do know that our son's will be stronger from all of this, and they will appreciate the small things in life, as do we. Being a heart child/adult, I know from experience, and I do appreciate small things. I also feel a little more mature than most my age. Another thing, hospitals don't freak me out, labs don't bother me, echos, ekg's, it's no biggy, and I'm sure they will feel the same way in adult life. Maybe, they can be in the medical field, like I am. It's rewarding. Ok, this is a long comment.
Kira
I'm sorry that you've had to go through all this. I can't understand because I've never been there, but I will keep praying for you...
That's great that Drew has so much energy! Now the real question is - can Mommy keep up with him? ;-) (Just kidding - you're in WAY better shape than I ever will be!)
Andrea: you have such a gift for sharing your heart so open and honestly that I can only imagine the scores of lives touched by your blogs! Your emotions are so natural -- while Drew was in the hospital, you guys were in "the zone" where you're prepared for the battles -- the highs, the lows, everything that comes from "the zone." Now that you're home and settling back to a life in which you've joyfully come to redefine "normal" -- i.e., Drew's renewed energy, being over the hump of that day-to-day waiting for the news about when the time would be right for surgery -- well, you're able to relax a bit and the emotions that have been stored up are more, um, accessible 8 )
God will continue to use your experiences to bless others. I will pray for protection for your exposed, tender and very dear heart.
I treasure you so much. Love, Lori
I have been reading your blog for awhile now, reliving my experiences as a kid in some ways through what drew has gone through. I was born with tetrology of fallot and have had many surgeries over the years. You said it so well, that there really is no "last surgery". I am now 33 and thankfully I have had longer times in between surgeries. Life with a heart conditions is hard, but it also puts life in sharp focus, and wow life is amazing. Thank you for allowing us to follow your journey through this, you are all in my thoughts and prayers.
Wow, Andrea! I am so proud to know that my daughter is touching so many people's lives and making a real difference in helping other families and individuals to feel understood and not so alone. I don't even have words to say how happy I am that your blog not only allows you to relieve some of your pent up feelings but that it helps scores of others, too. I am so blessed to have you for my daughter. (Not to mention my two adorable grandchildren!)
Love, Mom
Although the emotions are hard, it is a blessing that you are able to decompress from a long hospital stay and process through all those feelings. It's natural. And God is going to use that built-in empathy for other heart parents in HUGE ways. In fact... He already has. Sending you big hugs!
Amy
Andrea you are so simply amazing.. the room in your heart for others going through the life and experiences of a child with life long medical issues.... simply a gift a I think, a gift from God.
On-going medical issues is a world that only those experiencign it can fully understand, not an understanding I'd wish on anyone but you have such grace as you navigate this world... you are an inspiration to me.
Can we see you this week?
Hugs
Have you ever thought about writing a book about your journey through all of this Andrea? You have such a gift with words I am sure it would be so helpful to so many others that are preparing or that are walking a similiar path as you. I could only imagine that it might be good for you too? Praying for you right now
Kristina
"I don't know exactly where I'm going with this. I guess I'm just sharing this experience with the internet. But for those of you who are not familiar with this world of heart defects and heart surgery, just know that for most of us, it is not over after our kids have their surgery. There is no "last surgery." The doctors do what they can to give our kids a chance at life, but the reality is that most of them will need more interventions, more surgeries, and we don't know when. So we all do our best to live life to the fullest, but somewhere deep inside we live in fear of when that day might come."
I had to quote what you said because you said it so well and it hits me very hard. I was just telling Micah's OT today that I wish that someone could just tell me when exactly he would need his next surgery so I could feel prepared for it, but instead I have to live appointment to appointment wondering if this is the appointment that will change our lives again.
Anyway, thank you for writing that so beautifully.
I am so happy that you are all home and doing so well. I happen to think that you are a very compassionate person when you find tears for others...and possibly you are trying to hold so strong for your own family that you do not allow yourself to cry for your own.
Take care and enjoy your time with your precious kiddos!
Heart Hugs,
Samantha
Andrea - you have such a beautiful and special heart! Although God didn't give Drew the defect in his heart, he IS and WILL CONTINUE to use this in your life as well as others you come in contact with. You have experienced something that allows you to have a tremendous amount of empathy, and in that you can share God's amazing love through it all. You are amazing, and your strength is hard for the rest of us to fathom. You lead by great example, and you're a blessing to so many (even those you haven't met). :) God bless you all. I think of you so very often.
Taria
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