Wednesday, February 22, 2012

Two Year Anniversary

     Two years ago today GiraffeDaddy had valve sparing aortic root replacement surgery on his ascending aorta. We are grateful to God everyday for that surgery's success, and for the relatively quick healing that followed. Although there are still times he doesn't have quite the stamina that he did pre-surgery, he is pretty much back to normal.
     Instead of writing in detail about that day, I thought I would copy and paste the series of emails I sent out during our week at the hospital. They describe so much better what that week was really like.
Monday, February 22, 2010 1:07 PM
Thought I would send a quick email and let everyone know E is still in surgery. The actual surgery started about 11:30. We are anticipating they will be finished around 4:30 or so. Thanks so much everyone for your thoughts and prayers!

Monday, February 22, 2010 4:24 PM

Hey everyone. Just heard from the nurse coordinator and E is off the heart/lung machine and they are closing him up! Sounds as if everything went well and it was a success. I'll send an email later tonight after I've talked to the doctor and I've seen him, but he's doing great! Thanks so much for all your thoughts and prayers!
Which brings us to a prayer Mom and I have been in the waiting room with another family who's loved one has Marfan Syndrome and is having his entire descending aorta grafted in today. He is only 33 and has a young child. Please pray that this surgery goes well for all of them! It is a much more severe surgery than Eric has just had. Thanks!

Tuesday, February 23, 2010 7:48 AM

Hey everyone-
Sorry I didn't email last night but it was a late night. Quick update. E is doing great! He had a little trouble waking from anesthetic, and so he didn't get the breathing tube out until about 5:40 this morning. I was here with him until about 1:30 this morning, when he sent me out and told me to go sleep. He is in good spirits but is definitely feeling some pain. He really likes his drug button! They will be getting him up into a chair sometime soon, and then he'll move to his permanent room for his hospital stay (he's in the ICU right now.)
As far as the other family. Thank you for praying for them! N, the guy, finished the main part of his surgery last night about 10:30, and it was so fun to see the celebration with his wife M and his parents and siblings! There is a long recovery road for him but the hard part is done!
Please conitinue praying for both these guys as they deal with the pain and recovery!
Thanks so much for all your well wishes and emails! They feel like great big hugs buoying me up during this LONG past day! (We got up yesterday at 4:45, and I am NOT that 20 year old college girl anymore! I don't do all-nighters!)

Tuesday, February 23, 2010 1:30 PM

Hey everyone-
Wanted to let you all know that E is now moved out of the ICU and into the cardiac care unit where he'll remain until they kick him out of here. He is in unit 5C, room 5688 in Mary Brigh Builing at St. Mary's Hospital. I'm not sure how to call him, but at this point he really just needs quiet time to heal anyways, and you all know he is not really a phone guy anyways. At this point, while he is in pain and still getting back on his feet and germs are still a concern we need to minimize visitors, but know that I am giving him all your messages and sharing with him how many people care and are concerned. If you are thinking about visiting, talk to me first and we'll see where he is at and how he's feeling. Just know we are both so thankful for everyone's prayers, thoughts and concerns. There is no way to reply to everyone's email but just know that I am so thankful for them and they have really helped to boost my spirits! I love you all.
Tuesday, February 23, 2010 9:37 PM
 Hey everyone-
Just a quick update before we try to get some sleep. E is doing well, although he is having some anxiety about the pain and how hard this recovery really is. He's also very worried about the kids having to go through this surgery in the future. He is in a lot of pain and he is also scared of what is to come in this recovery process. (let's be real- we are scared!) I have to admit this is way harder and worse than I thought it would be, but I am also really thankful that E is alive and doing well. I can't imagine going through this without all the knowledge we had ahead of time, as so many people who never knew they had Marfan Syndrome until they reach critical aorta dilation do, or without a faith in God that it will all turn out alright. I came back down tonight to stay with him (Thanks for the ride/ car delivery Pastor Pam and Marshall!), and I am probably not heading home for the next few days. Mostly, I just don't want him left here alone. But we are both doing good overall. It's been a rough couple days. Please keep the prayers for less pain and a quick recovery coming!
Wednesday, February 24, 2010 9:29 PM
Hey everyone-
Let me start this by acknowledging that maybe we should have gotten a caringbridge site when it was offered and given everyone a choice about whether to read these updates or not. We chose not to because we really felt those should be more for the families of people suffering though long term illness that would need long term updating ability. I figured I'd send out one quick email saying surgery went fine and he's good and that would be all. I didn't realize how hard the recovery process would really be (I know, so naive of me, but our friends who have had this surgery really made it sound quick before hand, or at least that's what E and I chose to hear, and though I know this is still really soon after surgery I don't think I really GOT it before hand.) At any rate, if any of you are sick of updates feel free to send me an email and I'll take you off the list with no hurt feelings. Or just delete this.
I was so frustrated with my email account before this started because it wouldn't let me make a list, and I had to individually get the emails onto that first email, but I'm also incredibly thankful since it made me add myself to the email and I'll now have all these emails I can print out as sort of a journal of this experience, and maybe it will help the kids in the future. 
I am so thankful for a much better day for both of us. It does seem to get easier each day, and I've heard from many that day 3 and 4 post surgery are the worst so I'm prepared for tomorrow and looking forward to those easier days!
E's pain control was so much better today! He got his chest tubes out this afternoon, which was a very painful (but short!) experience, but they were right in saying the pain levels were reduced almost immediately. He's been up walking 3 times today (our goal was four, but the nurse came in and gave him a back rub right before his planned last one and so he just wanted to sleep then, and who can blame him). He's pushing himself farther each time, and he's been pretty steady and strong once he's on his feet. The getting up and down without his hands is the hard part. With his long lower legs he has to push up even further since his knees are above his waist, so this makes this even harder. But he's making great strides in mastering this. You would think they would have special furniture designed for tall people here since they specialize in aortic surgery for those affected with Marfan Syndrome here, but no such luck. I'm just thankful that E is only 6 feet or so, so that foot to knee length isn't longer.
Again, we are both very thankful for all the prayers and words of support! We love you all!
Thursday, February 25, 2010 10:48 PM
Hey everyone-
    With any luck this will be our last update from the hospital. I'll send out at least one more when Eric goes home tomorrow, as a sort of end to this part of the healing process.
    Today has been a day of celebration for us. E walked 5 times, sat up from the bed to standing twice, got to take a shower, survived on less pain meds (I'm starting to feel like a drug pusher as I encourage him to take some), lost another IV (leaving him with only one) and most importantly, passed stool tonight and was rewarded with actual food! So there have been large strides today and I am no longer scared about bringing him home, as much more of his physical care was done by me today then nurses (they still won't let me give drugs and have weird fascinations with his output).
    There were some emotional highs today too. My Dad was wonderfully kind and drove the kids down today with my Mom so they could see Daddy, and they did great and boosted both mine and E's spirits. It was hard though to watch them leave, and I had a good cry after I watched my babies go. With any luck we'll all be together tomorrow. Then, our good friend T from our Marfan Group came, who had the same surgery about 2 years ago, and he and E were able to compare war stories. I saw the first real spontaneous smile from E since surgery, which was immensely joyful. Both visits were great for our spirits.
    Life in the hospital strips away all dignity from the patients. I remember after having the kids thinking the entire world had now seen my parts, but it was nothing like the lack of privacy E has experienced this week. At least with child birth there is a baby to distract everyone in the end. And the nurses are great at trying to protect his modesty, but there are only so many things they can do with a gown that opens in the back and no undies. There is an intimacy here with E that I have never experienced before, and although I would have spared him the pain of this journey I appreciate the outcome of it. There is something beautiful in caring for the person you love's most basic needs. I have helped E do things this week I would never have thought I'd need to, and yet I would have done a million more things if it meant this same outcome. I helped him shower today, and as I gently washed his scar I thought how it represents one more victory in this war we fight against this disorder that affects our family. I hope he will someday look at that scar and not see it as something to hide, but rather something to celebrate, a badge of bravery in this step he took, experience that may one day help our own kids. This man I married showed me a whole new level of  his bravery, endurance, character, and love, and I know I leave here more in love with him than ever before. This week has been sort of like one big date for us (not sure E would see it this way, but really he takes me on walks and I get hospital ice, what more could a girl want!), a constant opportunity to connect, to let down the guards we so often put up, and to just enjoy the quiet together. I don't think I shared this, but one of the first things E did as he woke up from sugery Monday was sign "I Love You" to me, and though my tired self took awhile to get the message, it represents what this whole week has done for both of us, reminding us to take that extra minute to say those words, to let each other know we appreciate the other, to remind us to lift each other up. In these years of young kids where we sometimes forget to put each other first, it's been a great experience for both of us. In a strange way I'll miss this hospital time.   
    Enough of my ramblings. Thanks again everyone for all your prayers this week and for all your great messages. We are incredibly lucky to have all of you in our lives!
    And just to update today, N is doing fine but still in intensive care- much more serious surgery. He and his wife and M found out today that their son's aorta is also enlarged,  meaning he probably also has Marfan Syndrome. Please pray for them as they grieve the loss of perfect health for their little boy at the same time trying to heal N.
Saturday, February 27, 2010 10:58 PM

Alright everyone-
    I said I'd send out a final email when he came home so here it is. Sorry it didn't get out last night, but by the time the kids went to sleep last night it was all I could do to keep my eyes open long enough to crawl into bed! I just wanted to acknowledge I didn't mean to make everyone cry in the last email, but I wanted to share what this experience had given us, and I wanted it in here for the kids someday when I give them this email record. I hope they find the unconditional love that E and I share.
    Friday morning at the hospital brought a final visit from Dr. Schlott (I think that's his name), the only constant in a stream of otherwise varying doctors on Dearani's (the surgeons) team. He was our daily wake up call, the around 6 am visit with a friendly smile and fabulous accent (think Prof Bomshad from college, Matt, and yes I was smitten with him!) The rest of the morning was filled with a visit from Dearani himself, real food for E for breakfast, a final echo to double check E's heart repair, and at least 3 lectures on recovery after leaving the hospital. We also took one last walk around the unit (without the walker this time!) to make sure E really felt ready. By about 2 pm we finished all the paperwork and lectures and it was down to get drugs and then on our way home. Although Pastor Pam brought us down lots of pillows to cushion E's ride (thanks!), macho man wanted nothing to do with them and by cannon falls it was back down to just the car seat. He swears the bumps didn't bother him, although his heart pillow did cushion the seat belt. The kids were ecstatic to see him, and after hugs he went up to bed and spent much of the night there. When I asked how those first set of steps went, he didn't remember taking them, so they obviously aren't a problem (big surprise, I didn't help him cause I had to pee after the long ride and he was too quick and impatient to wait the 10 seconds!). It was fabulous to come home to a clean house, and I was so thankful for my Mom for how hard she worked while watching the kids all week! E did come back down for dinner and then spent the rest of the night watching tv in our room.
    My first hour home involved building a Lego helicopter (thanks Uncle Sean and Aunt Amber) with giraffeboy and making baby diapers out of sanitary pad wrappers for giraffegirl (you use what you got, I guess!) so it was back to reality quick for me.     
    I'd say today seemed like a normal day, and it pretty much was, but E was tired much of the day and spent a lot of it in our room. The kids were in and out visiting him, and he and giraffeboy spent tonight watching a Lego movie we got at the Library today (I left him home to run there and to Target for groceries, with the cell phone next to him and a promise I'd leave the cart and rush home if he needed anything!). The best part of being home is the change in E's moods, as he is so much happier now that we are home, much more back to his old self. I know this recovery process will take time, but I finally believe the people who said he be almost normal after a week. It's amazing how fast the human body recovers.
    Life isn't fair. E didn't have this surgery due to any decisions he made in life, any choice of lifestyle he had. The genetic syndrome that made it necessary was passed on at birth, in the same circle of life in which we passed it to our kids. But this week has been a constant reminder to me of all I have to be thankful for. In the intensive care unit that E was in Monday night still lives a 10 month old baby who has undergone 3 heart surgeries already for deformities in her heart. Next door to him Monday night was a 3 year old who was recovering from her own heart surgery. N, the other Marfan surgery on Monday, left the ICU finally today, and his recovery will be so much longer than E's is. My Mom watched as a family was taken down from our waiting room that wasn't getting good news, and though I don't know their story I know it could have been us. The girl who comforted me Tuesday night during my waiting room cry, after E opened up about his fears for our kids, was there in the hospital watching both her parents die. Life in the hospital can quickly show you how bad it can get, but it also shows you the triumph of the human spirit, and the best of humanity as we put aside our own troubles to help another in their time of crisis. I have seen more compassion and kindness shown to strangers this week than I had in a long time, and it renews your belief in the goodness in the world we live in. I don't think I will take life for granted nearly as much as I have in the past. Each day is a gift, and I plan to spend it thankful for what I have, not sweating the small stuff, taking the time to appreciate the little things. Thank you for all of your support this week, for all the email that boosted my spirits, for all the offers to help with anything we needed. It's wonderful to feel so loved during all this time. When E is up to it I'll share them all with him. I know he will appreciate them as much as I do. God has truly blessed our lives with all of you and I am very thankful for each of you. I am glad the worst of this journey is over. Unless something major happens, I won't bore you with the details of our life now that we are home. And now I'm off  to bed to listen to the beautiful sound of my husband breathing as he sleeps........  
I just wanted to end this post today with a quick acknowledgement that while we celebrate giraffedaddy's health two years later today, we also mourn the loss of my cousin Christopher, who died this past week at the age of 15. Life is short. We never know when it is our time, so take the time today to tell your loved ones how you feel. We love you and will miss you Christopher!  


  1. happy anniversary to G! thank you for sharing part of your journey with us. also, i am sorry for the loss of your cousin. you and your family are in our thoughts and prayers.

    ~ maya (marfmom)

  2. Thanks Maya! And thanks for blogging your story, as it helps so many of us other marf moms!