Jovie Jean’s Journey
Tue, 09/12/2017 - 10:09am
admin
Late last December, as Lindsie Defrang, a 2015 Win-E-Mac graduate, prepared for the birth of her baby, she was given some concerning news.
Her unborn child had a good chance of needing open heart surgery after delivery. Lindsies’ unborn baby had a condition called AV Canal defect with left ventricular dominance.
The doctor told her that surgical pulmonary arterial bands were recommended to help direct the blood flow of the heart. Also the baby had Heterotaxia syndrome which is when parts of the heart develop in the wrong position and affects other organs as well as the heart. Most important, he stated that everything can be fixed, for now.
Lindsie delivered the baby in Minneapolis and Jovie Jean was born on January 28, 2017 at the University of Minnesota Masonic Children's Hospital and diagnosed with Congenital Heart Defects called AVSD and an interrupted Aortic Arch.
It was also confirmed she had Heterotaxy syndrome.
Jovie's first heart surgery was at 11 days old. Her chest was left open to allow swelling to subside. It was closed three days later.
After her stay in the Cardiovascular Intensive Care Unit (CVICU), she was moved to neonatal intensive care unit (NICU) with instructions to grow.
She was discharged from the hospital on April 4th and mommy and baby made a temporary home at the Ronald McDonald House. But on April 6th, after a sleepless night of low heart rates, Jovie was readmitted to the hospital.
April was filled with surgeries, recovery and Jovie ended up with parainfluenza and had to return to CVICU for treatment.
In May, Jovie showed signs of improvement against the parainfluenza virus. Small signs. Very small. They began weaning the amount of oxygen pressure, doing a deep suction of her nose every few hours, if needed, and nebulizer treatments every 4 hours to get her to cough out any junk.
May 12: We had lots of snuggles today, read all our books, twice, and fell asleep to some Bon Jovi lullabies.
Jovie’s health was in a constant state of uncertainty and Lindsie did her best to keep everyone up to date with what was going on hundreds of miles away from family and friends as she stayed strong and kept a positive attitude, “scan went well, the narrowing is not as bad as they thought, but it is on both the right and left Pulmonary arteries. A lung scan will be done tomorrow to get more information. And they will address the situation in a meeting on Friday as to what to do about it.”
May 22: 7.5 hours... Jovie is on her way back to the room and is extubated.
There were some complications. 2 of the 3 arteries were successfully inflated. While attempting the 3rd Jovie went into heart block. Her heart rate dropped to the 40s- 50s and doctors did chest compressions on her for almost 2 minutes.
After she was stable and lab work was completed they decided to retry that final narrowing and had success.
What are Congenital Heart Defects? The word “congenital” means existing at birth. The heart ailment is a defect or abnormality, not a disease. They result when a mishap occurs during heart development usually shortly after conception, often even before a mother knows she is pregnant.
June 2: Jovie is on high flow with 4 liters of oxygen and now 50% flow!
Her gtube site still seeps quite a bit when you change the dressing. According to the gtube nurse this is normal.... To me it is definitely not normal.
Congenital Heart Defects are the number one birth defect in the world. At least nine of every 1,000 infants born each year have a heart defect. In the United States that means about 30,000 children are born with a heart defect every year. Up to 1.3 million Americans alive today have some form of congenital heart defect. There are an estimated 2 million CHD survivors in the U.S. alone.
June brought Jovie back in the ICU for the 3rd time. She was on precautions while waiting for a respiratory panel to return. She became "air hungry” and her oxygen saturations dropped into the 40s- 50s. Keeping her oxygen level satisfactory remained a problem.
June 14: I received some news that I wasn't expecting today. Jovie is not a candidate to have the Glenn procedure at this time. And may not be at all. We may have to bypass the Glenn and go straight to the Fontan. The downfall of this is that Jovie is not big enough or strong enough yet to handle this procedure. Currently we have no timeline for surgeries.
These were no small surgeries, and the risk is great in both.
The Glenn procedure is the second of three congenital hear surgeries performed to correct hypoplastic left heart syndrome and other single ventricle heart defects. It is usually performed about six months after birth. During the procedure, congenital heart surgeons finish rerouting the baby’s blood flow from the upper bod to the lungs.
The Fontan procedure is the third stage of the repair. It is done when the child is between 18 months and 2 years of age. A heart catheterization is done before the Fontan. The Fontan is done so that almost all the blue blood coming back from the body goes to the lungs. After this stage, most children are much "pinker" because now nearly all of the blood pumped out to the body goes to the lungs first
Jovie just had to wait and grow
June 27: Besides having exploratory surgery Jovie was also going to have a bronchoscopy. The entire mission has been aborted. During the bronch Jovie began to destat and continued to do so very quickly. They rushed to get a breathing tube in place. And debated on another attempt at the bronch. But decided against it.
Jovie was in a Pulmonary hypertensive crisis. Characterized by an acute rise in pulmonary pressures, which causes pressure overload of the right ventricle and decreased cardiac output. Reduced cardiac output through the pulmonary circuit leads to hypoxia, further exacerbating the increased pulmonary vascular resistance.
Because of this, they kept her heavily sedated and somewhat paralyzed to prevent her from discomfort and feeling agitated.
July 1: Jovie is currently in a Pulmonary hypertensive crisis. This is characterized by an acute rise in pulmonary pressures, causing pressure overload of the right ventricle (RV) and decreased cardiac output. Reduced cardiac output through the pulmonary circuit leads to hypoxia, further exacerbating the increased pulmonary vascular resistance.
Because of this, they are keeping her heavily sedated and somewhat paralyzed to prevent her from discomfort and feeling agitated.
July also brought a brief separation of Jovie and her ever attentive mom, as Lindsie fell and was unable to be at the hospital with her infant daughter until her recovery. Returning to the hospital with her dedication and determination, things started to look like they could improve.
July 24: Today I made Jovie's 14th necklace from Beads of Courage. I've been asked what each bead means so here is the list! Originally Beads of Courage was set up for children with cancer but within the last few years began a Cardiac program as well. Today marks 176 days in the hospital, which means she has 176 yellow beads. She will have many choices for necklaces when she wants to play dress up.
August felt better, Jovie was doing amazing and working towards not being on so many machines and medicine meant that leaving the hospital was a big possibility.
August 28: So to celebrate Jovie's 7 month birthday and my 30th birthday today we did some photos with Jim Bovin at the hospital. Best Birthday Ever!
Jovie was given a discharge date of September 5th, 218 days in the hospital. Lindsie, Jovie and the hospital staff worked at making the necessary changes for discharge approval.
Sept 5: Jovie was not discharged today like we had thought she would be. Theresa two days left to wean her methadone so we decided to stay here so it's one less med to give at home.
We also are doing a contrast study tomorrow to see how quickly she moves things through her stomach.
Feeling great, Jovie is ready to get to the next chapter of her new little life with her mom. They are still at the hospital, but looking forward to moving to the Ronald McDonald house, where Jovie can be “home”, happy and healthy.
If you would like to donate to Lindsie and Jovie Defrang, there is an account set up for them at First National Bank in McIntosh. All donations can be sent to First National Bank, PO Box 129, McIntosh, MN 56556 with check made out to Jovie Defrang benefit.
You can follow and read more by searching for Jovie's Journey on Facebook.