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My Story

Mikella was diagnosed with Total Anomalous Pulmonary Venous Return at 3 weeks of age. By the age of 3, she's undergone 3 open heart surgeries, and just had a pacemaker implanted in December of 2009. She is our strong little fighter! You can follow her progress on this site and please sign the guestbook!



Mikella was born with TAPVR, a condition in which the pulmonary veins instead of attaching from her lungs back into her heart, attached to her liver.  She was misdiagnosed at birth, and not diagnosed until 3 weeks of age.  She had emergency surgery within 24 hours of being diagnosed, which lasted about 11 hours.  Mikella spent 6 weeks in the hospital recovering from surgery.  She suffered from severe Pulmonary Hypertension post-surgery, in addition to developing pneumonia and a Chylothorax, and required ECMO support post-op.  

Mikella was home for 6 weeks after discharge, and at her first outpatient check-up was found to have Post Repair Pulmonary Vein Stenosis.  The Pulmonary Veins that had been attached to her heart had closed off from scar tissue in the veins and she had no blood flow to her left lung.  Another complete repair was done, and due to inflammation found in her heart, Mikella was given a 50% of continuing to have her veins stenose and for it to be eventually fatal.  Again post-op, Mikella developed pneumonia and Chylothorax.  She was discharged after 3 weeks in the hospital.  A residual ASD was left to protect against future stenosis.

Mikella did well in the coming years, despite oxygen saturations that were in the low 90's or high 80's.  By age 2, she was seen on Echo to have a severe narrowing of her Superior Vena Cava.  When a pre-op cath was done, it was found that the patch from the previous repairs had given way.  In addition to the severe SVC stenosis Mikella also had a large ASD, blood being rerouted out of the heart that should be going in, and blood flowing into both Atriums at the same time, causing a sort of PAPVR.  A repair was done in April 2009, and was successful and Mikella now has normal oxygen levels.

Unfortunately, because of having so many surgeries in the area where the sinus node is, Mikella's sinus node (the heart's natural pacemaker) was damaged and her heart rate continued to slow.  Her heart and liver were enlarging and her pulmonary pressures were increasing.  Mikella had a pacemaker implanted in Dec. of 2009.  Because of her size, she had to have another full sternotomy and the pacemaker was implanted in her stomach.  Mikella is treated at the University of Minnesota and is under the care of Dr. Jamie Lohr, Cardiologist, Dr. Ann Dunnigan, Electrophysiologist, and Dr. James St. Louis, Surgeon.

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Sarah Ruley posted a new journal entry, "Cardiology Check-Up".

Mikella took a trip up to the Cities today to see Jamie, her Cardiologist. It had been 1 whole year since we had seen Jamie last, the longest we've gone between visits so ... Read more

Leah Strand signed Mikella's Guestbook.

Sarah,Thanks for the update!  We'll be sure to say some extra prayers for Mikella.  We miss all of you!! Read more

Sarah Ruley posted a new journal entry, "Pacemaker check".

Mikella had a pacemaker check on Oct. 30 with Ann.  We were supposed to have gone back in August or September but we were a little busy at that time with our new ... Read more

Sarah Ruley posted a new journal entry.

It has been a busy time in our household this week. Mikella and Karenna welcomed their new baby sister Ainara on September 5th, Yes, that is one day before Karenna's ... Read more

Sarah Ruley posted a new journal entry.

Sorry, I realize I was a little delayed in posting an update after our appointments on Friday.  We no more than got home and immeadiately started getting ready for a ... Read more

Sarah Ruley posted a new journal entry.

Since the next month will be filled with more dance competitions, recitals (7! ACK!), and dress rehearsals than I can count this seemed like a fitting background.  Both ... Read more

Sarah Ruley posted a new journal entry.

Mikella had her Cardiology check-up this Wed. with Jamie. It had been 9 months since we'd seen Jamie, so it was nice to see her smiling face again! Mikella was very ... Read more

Sarah Ruley posted a new journal entry, "Pacemaker check".

I just realized how long it had been since my last update!  Things have been going very well for Mikella, I guess we just haven't had much new to report.  Mikella ... Read more

Sarah Ruley posted a new journal entry.

We had a good visit at the U of MN yesterday with Mikella.  Well, the logistics yesterday weren't the best, but for the most part we got good results back! We woke up ... Read more

Sarah Ruley posted a new journal entry.

Mikella has some check-ups coming up at the end of the month.  We'll be going to the U of MN on June 28 for a Pacemaker check with Ann, a medication check with Dr. Burke ... Read more

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