Tinley

For: Tinley Claire
Organizer: Paul & Nina Baranowski
Tinley (Tinley Claire)
$10,519
of $5,000 goal.
Raised by 118 donors
100% Complete

The Story

June 7th- We are home! We are planning on keeping this site open for a month so that you can follow Tinley's progress at home. We will be posting prayer requests too! Thank you for supporting and praying for our family, we are forever grateful to you. 



3/16/17

It has been 10 days since our journey began…


Tinley is 13 months and from birth she has had a heart murmur, which was known to us as an "innocent heart murmur". At her one year checkup, the doctors suggested an echocardiogram for further evaluation. 

On March 7th we went in for her heart echo, it was there that we discovered that she has a rare congenital heart defect called Atrioventricular Septo Defect (AVSD). AVSD is a condition where the heart has not fully developed. The condition has left Tinley with three holes in her heart and a malformation of the two valves within the heart (Tricuspid & Mitral valves). These valves are normally separated by heart tissue which divides the right side and left side of the heart. In Tinley's case, the tissue that divides the heart (atrial & ventricular septum) has multiple holes in it. Because the heart did not fully develop, this caused the two heart valves to be connected as one, this is known as a common valve.  

We were referred to the University of Michigan Motts children's hospital for additional follow-up and open heart surgery.

Within a week, we were scheduled for an EKG, a second heart echo, chest x-ray, blood work and a heart catherization.

All tests (except the heart catherization) were completed on March 16th, on March 17th we were suppose to return back to Michigan for her heart cat procedure.  But to our surprise and to God’s glory, the heart catherization was cancelled later that evening! Tinley’s pulmonary heart pressure had decreased to a safe level within a week! Which now meant that we would be able to have the open heart surgery within 30 or so days.

While at Michigan we learned that the surgery would take 3-4 hours and that she would need to be in PICU the first week. The doctor said that we should plan on Tinley being in the hospital for a month with an additional 2 – 3 weeks at home after she's released. 

We are anticipating living in Ann Arbor for the next month, your support will allow us to remain near Tinley and to see her through the surgery and post recovery care.

We plan on posting all updates here, please check in often to see how's she doing or signup below for alerts. 

The button below will allow you to share Tinley's story. Please share her story and pray for her.

We appreciate your thoughts and continued prayers. - ❤ Baranowski's

Fundraiser Updates

Posted on August 1, 2017

Posted on August 1, 2017

7/31/2017 Update and Prayer Request- The doctor visit went well today! We eliminated one medication and increased the dosage of her heart medications (to account for the increase in weight gain). Her cardiologist said that her heart echo looked great, nothing concerning at this time. The plan for the next three months is to continue to wait and see, the hope is that Tinley's valve will not scar too heavily (stenosis) over the next few months. Tinley's surgeon said that typically if a valve scars, that it happens within the first 6 months post surgery, our hope is that Tinley's valve will continue to grow and function well. Overall, the doctors were pleasantly pleased with Tinley's development and weight gain (without a feeding tube), they said that she is doing well and looks great! We go back in three months for followup checkup and echo.

Prayer request- Father, we pray for no stenosis, we pray for a valve and heart that will function for a long healthy life. In Jesus' name, amen. 

Thank you for following Tinley's progress and for all the continued prayers. We will continue to try to keep everyone update on a biweekly basis. For continuous and more frequent updates, please feel free to add us on Facebook. 

Posted on July 21, 2017

UpdateImage

Posted on July 21, 2017

Thursday, July 20th Update and Prayer Request- Just a quick update, Tinley continues to do well, her color is amazing and gives us hope that her heart is well. She is starting to take 4 to 5 steps alone now, but for the most part, favors walking with the assistance of a single finger. 

As you can tell from the picture, she is finally starting to relax and enjoy the "floating" life, she's been in the boat twice this week! She's also enjoying our weekly visits to the local zoo! 

We will check back in on Monday, July 31st, we ask for continue prayers as we go into her upcoming appointment at Mott's. This month will be her first ECHO since being discharged from Motts, the ECHO will  paint a better picture of how well her heart is healing an adapting post 3 months of recovery. 

Prayer request- Father, we pray for a heart and valve that will last a lifetime. We ask for complete healing, we pray for no stenosis, no regurgitation and for a relaxed heart muscle that pumps in and out efficiently. We pray for no major issues and for continued energy and improvement. In Jesus's name, amen

Posted on July 10, 2017

UpdateImage

Posted on July 10, 2017

Monday, July 10th Update- Tinley's has had a busy week, which included a visit from a PT (physical therapist) earlier last week. The PT did a evaluation and recommended many different exercises to help encourage her to walk and build strength. Since then, Tinley has started walking, she took her first steps this past Saturday in a church in North Carolina! That's right, I said NC, Tinley went on a surprise road trip to NC to be a flower girl!

You see, Tinley was suppose to be a flower girl in her aunts wedding, she was asked and a dress was purchased BEFORE we knew she had a heart condition. We never thought that we would be able to take her, but since she's was doing well enough, we decided to make the 10 hour drive and surprise everyone! She did great in the car and she got to walk down the aisle with assistance.

Tinley's also doing well eating, her appetite and desire to eat different table foods increases weekly. She is 100% interested in eating (trying) everything we have, she literally will pull food out of our hands and take a bit! There is a BIG difference (appetite and interest) from day 1 and day 13 without a feeding tube, she is now starting to insist on feeding herself.

Today was also Tinley's first day back to daycare, it's very exciting to know that she has the opportunity to interact with kids daily.

Prayer Request- Father, we pray that her heart and value will be sufficient for this life, we pray that she will continue to do well and have the opportunity to have a normal childhood. We pray that her heart echo scheduled July 30th, will be uneventful and lack any unwanted surprises. We pray that her follow up doctor visit overall will go incredible well! In Jesus' name, amen.

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