Joanna S. - Quilt Finished in 2006
Born: April 3, 2003
Illness: Spina Bifida, Neurogenic Bladder, Hydronophrosis of the left kidney,
VP Brain shunt, speech delay and gross motor skill delay.
A Thank you from Joanna's Family!
Written April 12, 2006
WOW! The minute I layed eyes on it I cried. You guys have done an out of this world job on this quilt! It is BEAUTIFUL!!! Joanna will treasure this quilt for eternity. I would like to send thanks to Love Quilts and every single stitcher that worked on this quilt. What love, devotion and time you guys put into this. It is truely amazing to me what people like you have done for my daughter! I never imagined in a million years, complete strangers like you guys would give so much love & support to my daughter Joanna. Though she is too little now to understand what you did for her she is never too little to understand what love feels like. Joanna has been through so much and has given so much for being so little. It feels so good to see her smile. People like you guys have given so much back to Joanna! Her smile is worth all the money in the world. Thanks Again!
Joanna and Family
Joanna S.'s Story
written by mom Lori
I was 15 weeks pregnant with my 3rd child. A routine AFP test during the pregnancy was fine. I never thought in a million years there was anything wrong with my baby. At my 20 week ultrasound appointment when usually you find out the sex of your unborn baby and how much it weighs, I found out that my baby had some kind of neurotube defect. I thought to myself, "a neurotube defect, what is that?" My little one was already fighting for survival and she wasn't even born yet. This is the moment in my life when my world took a complete 360°.
Not only did my oldest daughter Brittany have a heart defect known as bicuspid aortic valve, my middle daughter Faith was suppose to be born with down syndrome, and now I am about to face another nightmare. So all the testing began. That 20 week routine checkup turned into the complete opposite. No I didn't get to go home home and tell my girls, parents, family and friends that indeed I was having another little girl. I had to explain to everyone, even myself, that my unborn baby has the #1 disabling birth defect, Spina Bifida. What an ugly word. A word I never thought would even be part of my vocabulary. Well indeed it is.
Over the remaining 19 weeks of my pregnancy I went to checkups upon checkups and ultrasounds galore. Doctors trying their best to find out exactly how big my baby's spine opening was. Spina Bifida is when the fetus' spine doesn't form correctly. There is three forms of this. Joanna was born with the worst form, Myelomeningocele. S1 L4 region of her spine. The spine forms outside the back in a sac were all the tissue and nerves grow.
On April 3rd, 2003 at 1pm, 40 minutes from home I traveled to have my planned c-section. What a scary day. What a happy day. Finally get to meet my little one for the first time. Being able to tell her I love her and everything is going to be alright. A few minutes before 2pm Joanna Lee was born! She came out screaming. What a great feeling. I then knew she was finally here. The doctors surrounded her from Children's Hospital. Checking ever inch of her little body. Putting her into a clear plastic bag, which was a sterile wrap to keep the defect free from germs and infection. Before I could even lay one eye on her she was rolled away in an incubator to Children's NICU. And at this point her struggle began! Weighing 6lbs 13oz and 20½ inches long she was known as "The Giant" to all the nurses. Laying there next to all those preemies weighing in at about a pound. Her Daddy went to see her and brought me back a Polaroid picture. My baby girl! At 12 midnight after recovering from my c-section I was finally allowed to see Joanna. I have never cried so hard in my life. Seeing her lay there with tubes. Watching every movement to see if she had any leg movement. Joanna barely even moved her legs. It was like she didn't even know she had feet. Over the next day I was overwhelmed by all the doctors.
April 5th, 2003 she went in for surgery to close her defect. One of the scariest days of my life. What a long surgery. After the surgery she looked so pitiful. Laying there on a ventilator. Worst thing I have ever seen, the best thing I had ever seen. Joanna gained use of her legs even though her feet were still lifeless. That was ok though they were still cute. Then comes another problem, Joanna developed Hydrocephalus. Build up of the spinal fluid in the brain. Because of the damaged spine the fluid is unable to circulate properly. So Joanna had surgery again.
On April 7th, 2003 Joanna had a VP shunt placed in her brain. This is a valve that pumps the spinal fluid from the ventricles to her belly where it is then absorbed. Having a patch of her hair shaved. It was terrible, but Joanna did very well for this surgery. Next step was to check her bladder and kidney's for complications. Everything seemed to check out ok. After 13 days in the NICU we could finally take our little one home.
Three months had gone by with no complications. Time for the routine checkups. Her back healed well, her head looked great, but now we have another problem. Joanna has a Neurogenic bladder and Hydronephrosis of the left kidney. Which means her bladder doesn't function properly from the nerve damage. It doesn't empty correctly so the urine backs up into her kidneys. We were told to put her on preventive antibiotics to prevent any infections. Over the next few months Joanna struggled with kidney infections.
Nine months have gone by and Joanna has been to the emergency room 13 times, and spent several nights in the hospital. Between kidney infections and bowel issues. She has no control of her bowels what so ever. She went in the hospital several times to have an NG tube ran down her nose to push medicine to clean out her bowel. We were irrigating her bowels at home. Terribly painful to her causing urinary track infection's (UTI) from the cleanouts. So the doctors decided that we needed to start catherizing Joanna. This would keep her bladder empty, help with infections, and protect her kidneys. Thank goodness by May 2005, Joanna's bowels have been finally controlled by a load of laxatives. So it's the runs or nothing. We don't care. She is finally having regular bowel movements and few UTI's.
Joanna has been receiving physical therapy since she was around 6 months old. She wears pink and purple braces up to her knees. This gives her good support. After countless hours, a lot of crying and an excellent therapist, Joanna has began walking with a walker. Something I never thought I'd see. She has been through so much. OT therapy, speech therapy for delayed language and continues with physical therapy. What can go wrong now? Some of Joanna's doctors are concerned about her kidneys. The reflux is at its worst. Concerned that she will damage her kidneys.
May 13th, 2005 we went to Hanover, VA! An hour and a half from home to have a Urodynamics study. This shows her bladder pressures, how well it functions and how the kidneys react. This test was going to determine if my baby girl was going to have a bladder augmentation. This is when the doctors use part of the bowel and stomach to enlarge her bladder. This will help keep the pressures down and preserve her kidneys.
Well my nightmare was true. Joanna is going to now undergo a major operation to save her kidneys. We have decided to go through with the operation on July 26, 2005.
Joanna has done more than I could ever imagine. She is a bright, loving, beautiful little girl. I will always do what is best for her. Joanna has Spina Bifida, Spina Bifida DOES NOT HAVE HER! She is one strong little girl. Please pray for her and our family!
Written by Joanna's mom Lori in July 2005
