Just One More: Not Coming Home

Thursday, February 2, 2017

Not Coming Home

Not a lot to say right now. Pressures across the mitral valve are not what we want them to be. Lots of people involved and moving parts right now so we don't have a plan just yet. We are just going to be here. Very disappointed.

13 comments:

Ross HammersleyFebruary 2, 2017 at 9:59 AM
Thinking of you all and sending all the prayers and good thoughts we can for you and Bernie!!
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UnknownFebruary 2, 2017 at 10:05 AM
Oh Missy! I am so sorry for all of you. Lifting your family up in prayers honey! ((()))
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Kerry MaloneyFebruary 2, 2017 at 10:05 AM
Bern is where she needs to be. Keep trusting in that. We will all continue to pray
for Bernice and her doctors making some very important decisions today. My love to you all.
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KristaFebruary 2, 2017 at 10:05 AM
I'm sorry <3 Hoping the team of doctors can get everything working well so you can come home soon and feel good about it!
Krista
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LeslieRFebruary 2, 2017 at 10:07 AM
Oh L, I'm so sorry. Prayers. I love you all.
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UnknownFebruary 2, 2017 at 10:23 AM
Well as Jess would say, dang it! Continued thoughts and prayers!
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kasieFebruary 2, 2017 at 10:39 AM
So sorry for the news. Continued prayers for all of you!
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UnknownFebruary 2, 2017 at 10:47 AM
I am so glad she's at the absolutely best place for pediatric cardio thoracic surgery. You are surrounded by the best trained people in the field who will come up with the best plan for her. Stay strong Missy. We're all praying for your family.
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UnknownFebruary 2, 2017 at 11:01 AM
So very sorry... God's Blessings to all of you and the UofM Bernie team.
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Tina LundFebruary 2, 2017 at 11:03 AM
Thinking of you all!
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AnonymousFebruary 2, 2017 at 11:09 AM
Limbo, ugh! Sorry that's where you are right now. Sending hugs and prayers, and a virtual shoulder for tears of frustration/disappointment if desired. You had to grab the tow rope, so just keep looking uphill. love from Sadie B
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Anne SmithFebruary 2, 2017 at 11:16 AM
Sorry to hear this Missygirl. Stay strong, hugs to you and the Bern. xoxo
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AnonymousJune 27, 2017 at 6:35 AM
Well as Jess would say, dang it! Continued thoughts and prayers!
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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, February 2, 2017

Not Coming Home

13 comments:

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