Just One More: This Valve Came Out

Thursday, January 26, 2017

This Valve Came Out

Just met with Dr. Romano. Everything went well. Her new valve is in, but we are waiting for her normal heart rhythm to come back. It may take a couple of days. This is always a risk as an intervention has taken place near the heart's conduction system.

This is the old 16mm valve (about the size of a nickel) that came out for us to see (upon my request). It was layered with tissue around it like a big pie crust with a hole enough to move the leaflets of the valve. It is actually pretty cleaned up here. Remember: This was the valve shoehorned in when her heart was the approximate size of a golf ball and she weighed about 12 pounds. Once pathology is done with it, we will take this little gem home with us, but this is what has kept Bernie alive for the past 9 years. Amazing, right?!

Bernie should be upstairs to the PCTU in about an hour.

8 comments:

LeslieRJanuary 26, 2017 at 3:25 PM
Wow, medicine is so amazing... and so is Suoer Bern! Thanks UofM docs! Go Blue!
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familiagoldmanJanuary 26, 2017 at 3:41 PM
Fascinating. We have been praying here as a family. She is a strong girl!
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Amycarsonsmith January 26, 2017 at 3:45 PM
Yay!!!!!!! We're celebrating this news tonight! Cheers to that valve!
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UnknownJanuary 26, 2017 at 5:08 PM
Hooray for Dr. Romano and her talented U-M team! Hooray for Bern! Thanks for the update and sharing the pic of the valve -- it is truly amazing! Praying for an uneventful recovery :)
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CarrineJanuary 26, 2017 at 5:53 PM
Wonderful! Our prayers will continue… xo
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AnonymousJanuary 26, 2017 at 6:31 PM
WOW on the value! Thanks for sharing. That is big for how little her heart once was! Makes me wonder how big her new valve is now? I hope all still is going as well as it can! xo
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UnknownJanuary 26, 2017 at 7:17 PM
Amazing! Prayers for normal heart rhythms, and recovery.
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UnknownJanuary 26, 2017 at 9:34 PM
Yeah Bernie! Yeah Dr Romano! Yeah Smith family and Bernie fans! We all rejoice tonight with you.
Did you meet Faith Smith? Just left Mott today. T18 8 year old with recent 1st open heart. She is amazing. Brad and Jessi Smith were some of my angels during our journey.
Attempt some rest. Long night no doubt. We love you!
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About Bernice

A Note From Bernie (aka "The Bern"), our "one more"

Hi, my name is Bernice and I was born Wednesday, October 3, 2007 at nearly 30 weeks gestation weighing 3 pounds, 9 ounces, 15 and 3/4 inches. I have lots of hair and energy for my age. I have three older sisters and their names are IzzyB (13), Sadie, and Lucy (twins, 11) and a dog named Fergus. I have Trisomy 21 (Down syndrome) and was born with a significant congenital heart defect called a complete AV canal defect (balanced AVSD).

After 57 days in the NICU and 10 days of hospitalization in February for RSV, I finally got to have my heart surgery in Ann Arbor on April 10. Just when we thought it was all fixed and I was about to go home, I took a sudden turn for the worse and had to have a second heart surgery on April 25 to repair my mitral valve. We left Ann Arbor on May 24.

I was hospitalized for a couple of days in Traverse City for pneumonia at the very end of May.

By the beginning of July 2008, I showed more signs of respiratory distress and was again taken to the ER at Munson Medical Center where I was treated for sepsis, rapid respirations, and signs of potential heart failure. I spent 2 weeks at Helen DeVos Children's Hospital in Grand Rapids until we decided it would be best if I were in Ann Arbor to be closer to my surgeon at the University of Michigan. I love her, so I didn't really mind the ride even though the survival flight team wasn't so sure I'd make it.

I was discharged from Mott Children's Hospital in Ann Arbor on September 28, 2008 after recovering from my 3rd open heart surgery. I received a prosthetic mitral valve on July 21. Even though I am doing really well now, there were days just after this last surgery where the nurses told my parents they could not care for me anymore. Every time they tried to perform basic care, I would go into cardiac arrest. All but one doctor said there was nothing else they could do for me to keep me alive. After being placed in a pentabarbitol coma, receiving regular doses of ketamine, and getting LOTS of prayers, I left death's door and started recovering from my severe pulmonary hypertensive crises and reactive airway disease.

My heart now has good function, but I continue to battle issues with stenosis. I can do that. I eat from a fork and spoon, run all over the house, and define the word miracle each time I look in the mirror. Now you know why I love my doctor SO much! I just can't wait to grow up and be a little girl!

It has been four helicopter rides and about 220 days in the hospital my first year of life(most very far from our home) since my mom's water broke on September 17, 2007.

I rallied through my 4th open heart operation to resection my left ventricle and was home 10 days later.

I know I have a lot of friends and family who love me and care about me very much.

Lots of love,

Bernie

Her electronic birth announcement sent out Friday, October 5, 2007 read:

She is beautiful!

Even though this precious little girl arrived ten weeks early, she and let us know how spunky she is by letting out loud cries and showing off her very full head of sandy brown hair.

Missy is recovering just fine from her C-section at Munson Medical Center . However, we have short term and long term challenges ahead of us as far as Bernie’s health is concerned.

Being born at nearly 30 weeks, Bernie is premature. In addition, Bernie has a heart defect which will require surgery most likely when she is 6 months to 1 year of age. Until she reaches full term, in another 4-6 weeks, she will be at Helen DeVos Children’s Hospital in Grand Rapids (she was air lifted there yesterday) where they have a neonatal cardiologist who can more precisely care for her. We will be traveling there as parents and together as a family on a regular basis for the next month or more to love, support, and get to know Bernie.

Her heart condition is directly related to the fact that she most likely has Down syndrome. Genetic testing has not confirmed this as of yet, but physical traits highly suggest this is the case. Despite many surprises in the past few days, we are thrilled to have Bernie as the newest member of our family.

Just One More

Thursday, January 26, 2017

This Valve Came Out

8 comments:

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