Saturday, May 12, 2007

FIVE


Jessica has had FIVE heart surgeries.

This is a picture of Miss Jess when she was three years old post-surgery.
This was the hardest recovery of all.

First, a little background information about Miss Jess.
Jessica was diagnosed with pulmonary atresia/VSD when she was two weeks old. We were told that she had very narrow pulmonary arteries and that the heart was not directly connected to her lungs. Blood flows through a large hole between her two lower heart chambers, mixing both the oxygenated blood and the unoxygenated blood. Then the blood flows up the aorta to the body. Jessica grew some collaterals from the aorta out to the lungs and that's how she was getting blood from her heart to her lungs. Jessica was very ill and fragile so the doctors wanted her to take the heart meds to stabilize her and get her to put on a little bit of weight.

Jessica had surgery number ONE when she was five months old. The surgeon put in a shunt between her pulmonary artery and her aorta - forcing blood through the pulmonary artery in hopes that it would make the artery grow. A blood clot formed and went to her brain and Jessica suffered a stroke which weakened the right side of her body and affected her speech. She has to learn sign language in order to facilitate speech. She was very slow growing and we rejoiced at ever ounce she gained! She was delayed and didn't sit up until she was almost a year old and didn't walk until she was 2. She had OT, PT and Speech weekly for months! Pretty soon it was time for another surgery.

Jess was back in surgery just a month after her 3rd birthday.
During surgery number TWO the doctors accidentally cut the shunt and Jessica hemorrhaged out. She went 8 minutes without getting blood to her lungs and in turn no oxygen to the brain. Once she was on bypass the doctors were able to replace the shunt with a larger one... tucking it out of the way. The first shunt had been pushed into the sternum by Jessica's enlarged heart and that's how it ended up in the way and was cut. Jessica remained in the OR for hours bleeding out of control. Finally at 1:00 am we were told that she was stable enough to bring up to the ICU but she was in critical condition. She remained in the ICU for a couple of weeks experiencing more bleeding, seizures and a life-threatening blood infection. Several times she was not expected to make it. Once she was off the ventilator and was able to wake up we realized that her left side (previously her strong side) was paralyzed and she was blind. The CT scan showed 4 areas of her brain had been affected. Over a short period of time Jess regained enough vision to recognize us and was no longer terrified as she had been for several days (during which time we prayed and prayed... prayed that we would accept HIS will and that she would be comforted. HE gave her the eyesight. What a gift!) During this time is when the picture (above) was taken. It is one of two pictures that were ever taken of Jessica in ICU. I just couldn't bear to photograph her with all the tubes and wires, etc. I know that I will never forget and I didn't want pictures to remind me of how hard it was and how much she went through. Jessica had to relearn how to crawl, sit up, walk and all the other things we had struggled so hard to learn the first time. She had OT, PT and Speech again. She was very determined and regained almost all that was lost.

Surgery number THREE took place when Jessica was 5yrs old. The surgeons did what was a new surgery at the time called unifocalization of the collaterals on her right lung. Jessica suffered a pneumothorax post surgery but that resolved by it's self. Brandon was just 2 months old at that time! Thank goodness Jess did not suffer another stroke or hemorrhage.

Surgery number FOUR took place just 7 months later. The surgeons did the unifocaliazation of the collaterals on her left lung and they placed a conduit inbetween her right ventricle and pulmonary artery. The thought was that it would establish continuity between the heart and lungs and they would also be able to do a cath to measure the pressures in the pulmonary artery. Again Jess suffered a few complications but nothing as major as the prior strokes. Unfortunately this was when the surgeon came out and told us that looking at the pulmonary artery he could see that it has not grown. He felt she would never be able to have complete repair and went on to mumble something about most kids living off shunts like she has don't live past their mid-teens.... they either can't fight off an infection or they get too "blue" to survive. (meaning that's how they usually die.) He also mentioned that most kids haven't been through the strokes and hemorrhaging difficulties like her and how sorry he was that they couldn't do more. He mentioned transplant but said that Jessica would need both heart and lung transplant and with the severe difficulties she's had (strokes and bleeding), he felt that she wouldn't make it off the operating table - she would have lesions everywhere. We went home to cry. Cry and pray. Jessica came home about 8 days later. I cornered one of the pediatric cardiologists and asked him exactly how much time he thought we had left with Jessica. He had been avoiding this question and finally he looked me in the eye and said, "We never expected her to last this long, Mrs. Jensen." Since we almost lost Jess several times when she was 3 years old we were already feeling like we were living on borrowed time. So we called Make A Wish and she wanted a computer. We did some things as a family that we wanted to do. We were done. We were done with surgeries and done having children. I had been put on bed rest with my pregnancy with Brandon and I just couldn't take care of a dying child and be on bed rest again.... so we thought!

Surgery number FIVE took place almost a year after the fourth one. Jessica wasn't doing very well after the fourth surgery and I kept trying to tell the doctors that something was wrong. She seemed more "blue" and tired more easily. She was needing oxygen more often. Finally they decided to do a cath and find out what was going on. During the cath they found that the conduit that they had put in was causing more blood to back up into her right ventricle and she was in congestive heart failure big time! They had to either a) go in and close off the conduit or b) give comfort care - she was dying. The doctors left it up to Karl and myself. They were worried to subject her to another surgery and potentially causing another stroke or other complications. So we prayed again. We decided to do surgery ONLY if they promised not to open mid-line. She had been opened there 3 times already (the other surgery was under her right arm and around her back). She always had complications and it took months for her to get back to feeling ok post surgery. They agreed. She went in for her fifth surgery and they were able to go through two ribs to close off the conduit. Oh, did I mention I was 6 months pregnant with Austin when she had her last surgery? I don't think I will ever tell God what I can and can't go through again. ha! It was really something... but we did it and our sweet girl came home 5 days after surgery!

Now Jessica is about to turn 19 YEARS OLD!

What a miracle! We are so blessed.

For those who have asked, Jessica is still considered terminally ill. Her body is deteriorating and new problems are arising from the fact that her body is not able to get very much blood to her lungs, therefore not getting enough oxygen to her body. She is suffering from hypoxia. She is experiencing digestive problems, acid reflux, headaches, body aches, fatigue, depression, irritability, a lot of anxiety as well as other problems due to her body never having enough oxygen in the blood. Some things that I didn't mention here is that she is prone to developing blood clots but we can't put her on blood thinners because she also experiences hemoptysis (coughing up blood) due to the collaterals bursting and bleeding into the lungs. Fortunately the morphine therapy is keeping the hemoptysis under control. Jessica doesn't get out much but that doesn't stop her from enjoying her life as much as possible. She is at about the level of an 7 or 8 year old. She loves to color, trace pictures in coloring books, bead necklaces and bracelets, and play video games. She is a joy to everyone who meets her. She is so innocent and loves everyone. She is especially interested in animals (she has her own pet bunny - a netherland dwarf), she loves Disney Princesses, Lord of the Rings, Pirates of the Caribbean and Harry Potter. In fact, Jessica has written a book about a new character that she invented for Harry Potter... his long-lost twin sister, Mary. Of course a lot of the book rambles on and most of the spelling is wrong. On occasion you will see punctuation and random capitalizations but she wrote the book all by herself! And she kept up with it for 4 years until it was done. There are little drawings in there too. It is a book I will cherish forever. Jessica continues to amaze everyone. We don't know how much time we have left but we try to cherish each day. Each hug. Each smile. I try not to take anything for granted. Each day is a gift.




15 comments:

The Special Zipper said...

Thank you Nancy for sharing Jess's battle and your faith. I'm sure many people would say how can someone believe when such cards have been dealt out, in fact I'm afraid I have sometimes tried to analyse why innocent children should be subject to such terrible disease .. yet you see the achievements and world record pole vaulting of the hurdles rather than the 'stumbles' along the way.

All the best for Jess's 19th birthday. We are often told that people admire us for our approach, my admiration goes to you guys.

Dragonheart said...

What an amazing story. Jessica certainly went through a lot at such a young age. What a wonderful miracle that she survived all of that! I hope she has a very happy 19th birthday.

Awesome Mom said...

She is one amazing girl!!! You are an amazing mom too!!!

*~chelle~* said...

Wow ... what a history ... You are all so brave and should be very proud !

tegdirb92 said...

19 already? Wow how time passes. What an amazing story--God Bless.

Sara said...

Oh poor peanut.. We know about hospitals, mySon had 5 surgeries before he was 1 yr old...

Rene said...

Jessica is an inspiration, a fighter and a blessing! How wonderful to have her here after all she has been through, and for 19 years! Thanks for sharing her story!

Mama Bear June said...

What a miracle! My photo is up. ;-) I started a weight loss blog, too. Great idea!

Jannie Funster said...

I read every word of this and I am left in tears. Nineteen years old! You dear, dear soul, I cannot imagine wht you went through. I must go hug my daughter and give God extra thanks for her.

How is her heart now, if you don't mind me asking?

Drew said...

I was happy to read those last lines. Glad that Jess is turning 19.

Ruth said...

Jessica's story is such a miracle an inspiration all wrapped up into one. She is quite an awesome girl, and you are one awesome mom!!

yerdoingitwrong said...

WOOOOOOOOOOOW! Amazing is the understatement of the year. Phenomenal may fit, but that's still may not do your precious kid justice. What a girl you have. And YOU celebrate like crazy tomorrow!!! You deserve it.... Happy Mom's day.

srp said...

What a blessing your Jessica is to you, a special child of God. She loves life and through her illness teaches all who read her story such an important lesson.... none of us knows if this will be our last day on earth.. we need to live our lives in a way to make each day count, as if it were our last. Many people go through life and don't stop to cherish the small gifts and wonders.. but I am sure that you and Jessica do. Even through that sadness a mother can't help but feel, there is real joy. Happy Birthday Jessica!

Jenni said...

Thank you for sharing Ms. Jess's story all in one place. She is truly a miracle child!!

TNChick said...

What a touching story - that first photo tugs your heart - she looks so sad. Thank God for her life.