Hello from Spain!
Last year, the Dr. del Nido managed repair the mitral valve to our son. Should avoid mitral valve replacement; the Dr. del Nido is the best surgeon in the world to achieve mitral valve repair
Hello from Greece!!your story really touched us since my little girl who is 1 year old needs a mitral valve surgery.We dont know if it is going to be a repair or replacement.we will have to travel to visit Del Nido to see what is ging to happen .I am so scared,I feel I can move forward in my life and reading stories with heart surgeries either give me courage or disappoint me.I really want to know how your little one is feeling now and if possible I would love to contant you through e mail..
Thank you for sharing this with us ,it really helps..
hi, thanks so much for responding so quickly to my post and question. is there a way to email you privately? i dont want to make sarah's guestbook all my questions! i want this to be all about her! can you see the email address that i put in the box below? you could write me there.. I would LOVE to ask you questions about your experience. as you know, this is so rare in little ones, and it is hard to get any information.
hi, i have a question for your mommy and daddy. i am glad your surgery went well sarah! my little girl is also five and was diagnosed with mitral regurgitation 6 months ago. can you tell me how you knew yours was severe? did you just go to a cardiologist appointment because of a heart murmur? i have been so so worried about my little girl. she is also completely asymptomatic. i would love if you could email me back a little more of your story. as you know, this whole experience has been all consuming for me because it was such a complete shock.
Oh no, a blip in the recovery, but guess it is not really a complication post op, but an old fashioned bug. Glad you all got through it. Big sister is a sweetie and I know she'll have her special date again. What a wonderful family you are. God bless you all.
It's amazing what God can do. My father just had bypass, heart valve replacement, and an aneurysm repair on Monday (3-21-11). He is still in ICU but everything I read on your post sounds about the same for him. Your post really touched my heart. Even though I've never met Sarah I feel like she is a part of my life somehow. I'm so glad that things went well for her and for the family. I know what it is like because it is still like a whirlwind for us.
I was so happy to read your post. Your writings reached up and tugged at my heart. It sent me back to 1988 when my daughter had her open heart surgery. The experience never truly leaves you, but you move forward and you live. You look at life through different eyes, and you celebrate the milestones with a passion that has been renewed by love, faith, and hope. Last year when I had my open heart surgery, I thought of my daughter. Not one second of what I was going through could ever, ever compare to watching my daughter go through it. You have a beautiful family and it was a privilege to travel on this journey with you! Thank you so much for sharing.
Although we have never met, I have been so touched by your story. Health is a blessing that many people sometimes take for granted. So glad to hear that your family got good news. Sarah must be one special little lady. Much luck and good health always
What a joy to read this last post. It has been an emotional roller coaster ride for me as I read all your entries each day. It is wonderful to realize that Sarah will go on to live a long, full, life. What a wonderful family you are--God bless. Post every now and then as she recovers, please.
Sarah, You remind me of my daughter. She had 3 open hearts before the age of 3. My family has gone through everything you have and with the same people at children's. Dr. Delnido was her surgeon as well. You look so well. I actually found you doing a little research for myself at 38 going for a mitral valve repair. I see you and think about my daughter and say wow if you guy's can do it so can i. Thank You so much for showing such strength. On another note my wife an i with my daughter's cardiologist Dr. Loyd Feit just started a camp in R.I. for kids with heart disease only one of it's kind in the area. Starts in late August. If Your interested you can have your Mom or Dad E-Mail me. We are doing this in name of our daughter Gabrielle. It will be a place where kids with (CHD) can meet other kids and have fun supervised by Doctors and nurse's and camp staff. You can ask around at children's about my family The Dinsmore's they know us well. We were on 8 south.
Sincerely, Jeff Dinsmore(Enjoy your summer)
Just cannot imagine what it must be like for a child to have to go through this. You can only do what you can do and someday she will be old enough to understand. I'm so much older and I can only add that it wasn't all that long being home that I was able to get back to my life. Time. It just takes a little more time. Prayers.
So excited that she is doing so well!! I guess it is time for you to officially fall apart!! You guys both did an amazing job and should be proud of each other and the team and partnership and family you represent!! I am so happy for you!!! Thank G-D!!! love Kathy!! xoxo
Wow, what great news. You will have your hands full holding her back and as she gets older she will forget some of the difficult stuff and you know she will be so much healthier with this repaired heart. You are great parents, no one wants to see their child suffer. Prayers continue for an uneventful full recovery.
Dear little Sarah
I am so happy to hear how well you are doing and before you know it you will be back at the four seasons with rachel , Mommy and Daddy. I can't wait to squeeze, kiss and hug you when I see you this summer. I love you with all my heart.
You & Daniel are so BRAVE….so very COURAGEOUS….
The way you write Sarah's story is so moving......one cannot help but feel all the emotions you and your family must be going through. Your words have touched everyone’s heart! I am so very happy that Sarah is on the road to recovery!!! I prayed for her everyday and will continue to do so. Stay strong my childhood friend…..
Mary Triquet Wrege
Sarah will be herself before you know it. The edge will soften and the memories will morph in a surprisingly positive way over time. I expect that you and Daniel will have your hands full next week trying to hold her down! Tomorrow will be a better day.
Prayers for a better day!!! But what could be better than getting through the surgery????? Sarah is young and resistant (in more ways than one!) and will do well...... Follow her lead and hang in there!
Wow! This one of yours sure is feisty. While she is not a happy camper right now, take heart and know that when she gets older she will be thanking you for making the tuff decision that was necessary to improve and prolong her life. Counseling, as suggested by Ruth, may not be a bad idea. My surgery was in July 2010 and I am just getting back to "normal" emotionally. The whole ordeal was something I don't think I was fully prepared to deal with and I had 5 months prior knowledge to come to terms with it all. I am so happy that Sarah is on the mend. You'll be amazed to see her improve by leaps and bounds with each passing day. Continued thoughts and prayers from MD.
She looks so peaceful sleeping and so beautiful. I miss her so much and can't wait until I see her. I am so relieved that the surgery is over and she is on the road to recovery. I can breath again and live again.
What a couple of days...I am beyond happy for you and dear Sarah Rose, who will now be able to live a long and healthy life. We can't wait to see you all. Eden was asking about Sarah this morning, and to be able to tell her the good news was the best thing in the world.
Much much love,
Pamela, Daniel, Sarah and Rachel -- I've been hanging on every word of these amazing updates, and waiting with baited breath until it felt safe to weigh in. I was thinking about Sarah ALL day yesterday, from the moment I opened my eyes, and while I was confident she would get through this ordeal...I didn't want to rock the universe and presume it. What an emotional ordeal. Just reading it was an ordeal, so I can only imagine what it's been like for you. But Sarah's amazing will, fiestiness and determination will get her though what I am sure will be a fast recovery. I agree with everything that's been so wisely said here: kids are amazingly resilient, and Sarah is joyful, living proof of that.
Mainly wanted to send love, and offer a prayer of thanks. It's amazing how many people--everywhere--were pulling for Sarah!
I am so happy to hear the news. I can still remember my daughter after her surgery at 20 months. Within a few days she was kicking balloons and saying Mommy and Daddy. We were home within a week and I could not stop her running all around, her energy was amazing. Kids bounce back with amazing resilience. I can still day all these years later that going through this was the most painful time of my life, but this will be replaced by the joy her life brings as she lives it.
My best to you,
That's great news that Sarah's surgery was successul. There are a lot of people praying for her recovery. Sometimes our inner strength surprises us and one day you will look back and wonder how you did it. Be easy on yourselves and yes, you are just loving parents caught up in circumstances beyond your control.
I have been anxiously awaiting news of Sarah and am so glad that the worst is behind you. Children are amazingly strong and are very fortunate to remember most of the good things and let the bad parts go. When she looks back she will only remember decorating cupcakes, her birthday and lots of love from you. Thinking of all of you and sending lots of love.
Sarah got through the surgery with a repair which is what you wanted. The worst is behind her. Each day will be better and she will be more alert and wanting hugs and kisses. The staff will manage her pain, don't worry about that. Prayers continue for your beautiful daughter and your family.
Come Sarah today is the big day!! They are going to wake you up!! Pam- for future reference better to take two Xanax then mix Ambien and Xanax together-take an excedrin and have some coffee. Today will be hard but it will be the turning point!! Everyone is so so proud of you and daniel and how you have handled everything-outstanding!! Lots of love and prayers your way and to Sarah Rose xoxo Kathy
I am reading your story with tears in my eyes and picturing the day when your beautiful Sarah tells her children the story of how brave you, their grandparents, were the day of her surgery. May G-d bless her with a life filled with beauty, health, love, peace and strength. I don't know you - but I see the you are models of strength for your daughter. May your lives get easier from this day forward.
Pam and Daniel:
My neighbor and I await every one of your journals with bated breaths and then sob through them all. The love you have for Sarah is powerful and inspiring.
She's in good hands, but of course she's scared. I'm 72, and when I had my valve replaced last September and woke up with all those tubes and all sorts of people running around me discussing what to do, it just about freaked me out, so how can a little child handle it--yet, she WILL. You will be amazed that they get her through ICU, she will calm down and be healing quickly.
Now it's time for you sweet parents to go to sleep. I hope you have some of that purple drink, or its adult equivalent, to help you get some. You need your sleep so that you can be strong for Sarah.
Do you know the old Yiddish lullaby "Ahhh baby"--you can substitute the words Sarah or Sweetheart--etc., and croon it to her when she's kvetchy. It's little more than a crooning chant, done in the lowest from-the-diaphragm sound you can produce. It's easy to sing, and kids are very soothed by it. You might try it while she's in ICU and is having some distress..
The words are simple and sung slowly: they go at a 4/4 measure and drag out in a croon: Ah-hh, Ah-hh, Ba- Be, (repeat once)
Ah-Ah, Ba-be,.Ah,Ba-be Ah.
The melody is Bflat, F, Bflat, F, Bflat, D (repeat once), then Eflat, C, A, F, F G A Bflat.
You could sing Ah.Ah Ah.Ah Saa RA! Ah Ah Ah-Ah Saa RA, Ah Ah Sa rah, Ah, Sa-ra Ah.
As a further explanation: The first Ah is Bflat, the second Ah is F, (repeat), then Ba is back to Bflat, and Be is up to D.
The first time I heard it I thought it was the most stupid lullaby I'd ever heard, yet kids up through the age of 7 or 8 are soothed by the soft but deep chant. And it works at the other end of life, too, when my 88 yr old mother-in-law was very ill, this was the song that calmed her.
the grandma down in Florida who used to be a Bostonian.
I have been watching your updates and sending prayers your way. I am from central Iowa and feel fortunate to find this website and your daughters story. My husband is 52 and will undergo the same surgery at Mayo. Your daughter is blessed to have such caring and devoted parents. I cannot even imagine watching your own child go thru this. It sounds like she is in wonderful hands, keep the faith. God bless your family.
I love you Pam. I wish i was there with you, the pain you must be going through is inconceivable. I am so sad that our baby girl has to go through all of this but thank god she now has a healthy heart. We are blessed that she is at the best hospital surrounded by the best doctors....God Bless Dr Del Nido! She will heal, her body will heal and she will get through this. I have been glued to my computer all day waiting for your update and I am glad that you are back at the hotel now. I am praying that both you and sarah have a peaceful night of rest.
Tomorrow is a new day and just know that with every new day she will get a little better.
I will call you tomorrow but please update me in the morning when you get to the hospital.
thanks so much for sharing
we are with you every step of the way and i really appreciate your updates
i'm sure she will feel so much better in the morning
get some rest beautiful mamma, u need it
xoxoxo anna, sunny and family