Tinley

For: Tinley Claire
Ann Arbor, MI
Organizer: Paul & Nina Baranowski
$7,860
of $5,000 goal.
Raised by 80 donors
100% Complete
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The Story

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 March 29, 2017

Posted on March 29, 2017

It's official, we are discharged from Mott's and home for recovery. Doctors said that it is crucial that Tinley avoids crowds and sick people while recovering at home.  So no grocery shopping at peak times or any other crowd activities that would put her at risk of getting sick. Pretty much, we need to live in a sick free bubble for a few weeks.

We have multiple follow-up appointments at UofM over the next few weeks and months. We will continue to post updates as Tinley progresses over the next few weeks.

Please pray that Tinley's heart will continue to heal and that her Mitral valve regurgitation will disappear. Please pray for complete healing and good outcomes as we follow-up with the doctors over the next few weeks. We pray all these things in Jesus's name. 

Posted on March 28, 2017

Posted on March 28, 2017

Tuesday Update- Tinley continues to thrive, so much so, that we are looking at discharge tomorrow! Everyone (nurses, cardiologists, and her surgeon) are pleasantly surprised on how well she's been doing and progressing each day. During morning rounds yesterday, the doctor had to clarify twice with the team that her surgery was in March and not in February! When the PN announced that her surgery was on the 20 and 21st, the doctor replied of??March, the nurse said! He then said, you mean 5 or 6 days ago?! To which the team smiled and said yes, he said wow, she looks great!

Today, we had to pass three tests  (chest x-ray, EKG, and a ECHO). She passed all, we have no fluid accumulations and her heart and lung pressures are within an appropriate range with the meds she's on.

Prayer needs- please pray that her heart and lung pressures will return back to optimal level (so that we can eliminate the drugs in the future) and that her Mitral regurgitation goes away. Thank you for continuing to pray for her! 

Posted on March 26, 2017

Posted on March 26, 2017

Sunday Update- Tinley was moved out of ICU on Saturday and was moved to a children's floor just for heart patients. We were able to remove her feeding tube yesterday and we started oral feedings. Today (Sunday), we are continuing to work on adjusting her heart and lung pressure medicines, the goal is to find an appropriate level of dosage that keeps her blood pressure happy. We are also working on oral feedings and bowel movements today. 😄

Prayer needs- please continue to pray that her heart and lung pressures will return to a optimal level (eliminating the need for meds). We also need prayers for her Mitral regurgitation  (valve leakage), we pray that her valve continues to heal itself as her heart adjusts to all the new changes. We ask all these in Jesus's name. Glory to God, for all he has done for us and her. ❤

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