Birth Story ~ September 12, 1996

The 7th child born of her dozen siblings, Jessica was the only one born at home. I love the precious memories I have of her birth, and now looking back, am so thankful that God allowed us to decide, out of our 12 children, to have her birth be at home. My water broke about 11 pm at night, and she was born around 5 a.m. The older children went to bed knowing . . .

they'd have a sibling in the morning. It was like Christmas, with all the children, peeking through our bedroom door, to welcome their baby sister. How I treasure that memory. Shortly after Jessica Joy was born, my husband held her up, prayed over her and dedicated her back to the Lord. Little did we know how real those words would be and how we would not take day by day for granted.

We are thankful for a personal friend who is a pediatrician who came and checked on her the day she was born, discovering a heart murmur, which can be typical of newborns. But he came back the next day, and it was still there, making it important for her to see a pediatric cardiologist. We are so thankful the way God planned all the details out . . . Had she been born in the hospital, her heart defects would have been discovered immediately, and she would have been wisked away, taking away that precious right-after-birth bonding time. She did not have to every test and every instrument hooked up to her. At six days of age we were blown away to little by little learn that her heart was quite complicated, unique and fragile. Her list of defects included Atrial Septal Defect (ASD), Ventricular Septal Defect (VSD),Atrioventricular Canal Defect (AV Canal); Pulmonary Stenosis (PS);Double Outlet Right Ventrical, and Pulmonary Stenosis but in Oct. of 1997 during a catherization before her open heart surgery, they also added Tetralogy of Fallot, heterotaxy, CCAVC sub PS, Interrupted IVC, etc. (along with other things).

The first year of her life held us in limbo. The pediatric cardiologists wanted her to get to a certain weight and over a year old. We certainly treasured that first year, not knowing what the future would hold. She was able to go until 13 1/2 months before needing surgery.


First Birthday

Jessica's first birthday was definitely one of celebration. We

were so thankful she made it to her first birthday with no medical interventions needed (up until after her first surgery she was not on any medications). For her birthday we had family and friend over, and at one point everyone gathered around her, laying hands on her and praying for her. It was a precious time.



First Surgery

How do you prepare yourself, your children, and your family to turn your child over for open heart surgery? I don't know if I will ever be able to be "prepared" as Jessica will have more in the future as well. Before her surgery we took pictures of each of the children with her. The top one is of our son, Matthew. So often we thought it would be Jessica going to heaven. At the end of 2004, it was Matthew who left us for heaven. We never know or quite comprehend, how God's ways are not ours.

At 13 1/2 months of age, on Oct. 29th, 1997, Jessica had her first open heart surgery. . .

. . .on Oct. 29th, 1997, Jessica had her first open heart surgery University of Michigan, by Dr. Ed. Bove. It is a day we will never forget, handing an outwardly very active, healthy child over for surgery. We stayed at a hotel the night before, not wanting the night to end as we played with her. She stood by the couch as we were looking at a magazine, taking those little inserts out and putting them in another place in the magazine - going back to it, moving it again. Our hearts ached so. How do we hand her over? What if she does not make it? Was it the right thing to do? Oh, all the thoughts exploded in our minds. We slept little that night, taking turns holding her in our bed, savoring her. I will never forget walking her to the OR. I've walked the same hall many times and it always comes rushing back in my mind, walking up the long ramp type of hallway as I was holding her, her little legs bobbing on me. I wanted to run, hide away with her. I've imagined Mary, watching Jesus as He was carrying His cross to his death destination.

They gave her medication that made her very "happy" and she waved good-bye to me, not fearing anything. I left the room weeping, falling to the floor outside. She made it through the surgery, and we saw her about four hours later. It was hard to see her with all the tubes and lines, her face puffy, but it looked like all went well. We were hopeful. Little did we know how the next few days and weeks would keep us in a whirlwind, near death's door.


Long ICU Stay

Jessica's surgery was on October 29th. The next couple of days had many ups and downs, including fevers, too low of blood pressure levels and other stats that just were not optimal. However on November 2nd she was extubated, having the breathing tube removed from her chest and just having the nose canula. We thought we were on the road to healing. I was so hopeful to hold her soon. The next day my husband and I went to lunch . . .

and were put into immediate shock as we walked into her room seeing blood coming out of her nose and many doctors and nurses working on her. We quickly learned she had a hemorrhage to her lungs, her blood was not colagulating and they were giving her both blood plasma and blood platelets. We were told there was a potential danger to her liver. She was on a 100% oxygen and put on paralyzing medication so she would not move or fight any of the treatments. I wrote in my e-mail that night:

"Our hearts are breaking and we need a lot of strength and grace at this time. We were at her bedside a little while ago, and crying, and one little tear slipped out of her eye. Oh, we love her so. God WILL bring us through this.

Psalm 94:19 ~ Lord, when doubts fill my mind, when my heart is in turmoil, quiet me with renewed hope and cheer.

November 4, 1997 ~ The next day we were told she was barely in stable condition. We were asked to try an experimental drug called nitric oxyide which was to expand her blood vessels. We had to sign permission for it, as the side affects were that it could hurt the red blood cells. We just did not feel we had any options. It was only used for a short time that day. It did not work.

Later that day they tried an oscillator ventilator on her which is mainly used on premature babies which pushes over 400 breaths into her per minute. It sounded like a loud air compressor and literally shook her whole little body. She stayed on this ventilator for two full days, and was finally able to be weaned to a conventional intubation.

Though she was on this ventilator, she was not out of the woods and still a very sick little girl. She had pneumonia, and also found out shortly after taking her off the vibrating oscillating vent. that she had a horrible bedsore on her neck, about the size of four quarters (which she has a scar on her neck to this day).

One thing I've neglected to share, was as we were going through all this, I was pregnant. On November 7th one of Jessica's cardiologists did an ultrasound on me, and we learned the baby was heart healthy.

The next few days were rather calm - not much in the way of changes - but not completely stable either. We also were missing our 6 children back home who were divided up with friends and family. I was able to go home for a short visit after Jessica was in the hospital 17 days. It was a long time not seeing them, but I was able to bring the three oldest back with us.
They kept Jessica pretty well sedated so she would not move much. There were concerns along the way of brain damage, loss of hearing, etc. but were thankful all tests proved she was healthy as far as that went.

By November 17th Norm had to go back to work . . . and worked when he could, making the three hour trip back to the hospital often.

However, the next day after he left, Nov. 18th, Jessica slipped again, the pneumonia getting worse and running more temperatures and had to put her back on the paralyzing drug. On Nov. 20th an ultra sound was done and it was then proven that her mitral valve was leaking considerably which was putting too much into her lungs. But at this point the doctors were not sure what to do.

We were amazingly uplifted by friends and family throughout our stay, with letters, e-mails, cards, gift cards, money gifts, etc. The nurses were shocked we were receiving gifts from people we did not even know. We sent out a daily e-mail and our e-mails were getting forwarded more and more.

On November 22nd good friends of ours, Scott & Wendy March asked others to join in with them for a day of fasting for Jessica.

We spent Thanksgiving & Christmas in the hospital with Jessica. We were told shortly before Thanksgiving that "time would tell". If her lungs showed improvement over the next 2-4 weeks, then the mitral valve was not the cause. But if she was not healing, then, we'd have to think of another surgery - and this was very risky because she was still in critical condition.

December 2, 1997 ~ Though Jessica was stable she was staying at the same level and not really improving and the docs were seriously considering another open heart surgery. A mitral valve is rarely replaced on a young child because of the risks during surgery and the risks leading a normal life afterwards. She would have to be on coumadin (blood thinner) for the rest of her life, which had risks of severe bleeding or if it was not thin enough, clogging her mitral valve.

But the doctors kept us in limbo. It was not like they immediately made the decision and did the surgery. It was neat that one pediatric cardiologist had to go to a convention, meeting with cardiologists from around the world, and he presented her case to them to get input.

On December 13th, a trial extubation was done to see how Jessica would do. How thankful I was for my midwife friend Tami & her husband Neal, being with us during this discouraging time. Norm & Neal stayed with Jessica when they removed the tube, and put her in an oxygen tent. I was thankful I did not see her, as the hour in that was sheer dispair for her as she fought for breaths. I was told it looked like she was trying to break out of the tent.