Want To See Me Take My First Steps?? Click Below..
In The Eye's Of My Mommy,
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 weights, 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 4 year old daughter Brittany have a heart defect known as a bicuspid aortic valve, my one year old 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 and tell my girls, parents, family and friends indeed I was having another little girl. I had to explain to everyone even myself my unborn baby had the #1 disabling birth defect. Spina Bifida.
http://www.chkd.org/neurology/spibif.asp 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, myelomeningcele. S1 L4 region of her spine. The spine forms outside the back in a sac were all the tissue and nerves growth.
Well it's been 19 weeks since my precious baby girl was diagnosed with Spina Bifida. On April 3, 2003 at 1:00p.m., 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 all right. A few minutes before 2:00p.m. 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 little body. Putting her into a clear plastic bag. Which was sterile wrap to keep the defect free from germs and infections. Before I could even lay one eye on her she was rolled away in the incubator to Children's NICU. And at this point her struggle begins! ...................
Weighing 6lbs 13oz and 20 1/2 inches long she was known as the Giant to all the nurses. Laying there next to all those preemies weighing in at about one 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 over whelmed by all the doctors......
April 5, 2003 She went in for surgery to close her defect. One of the scarcest days of my life. What a long surgery. After the surgery she looked 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. http://www.chkd.org/neurology/hydro.asp So now Joanna will have surgery again. On April7, 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 can finally take our little one home..............................
3 months have gone by with no complications. Time for the routine checkups. Her back healed well, her head looks great, but now we have another problem. Joanna has a neurogenic bladder, hydronephrosis, & grade 5 reflux 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 kidney's. We were told to put her on preventive antibiotics to prevent any infections............Over the next few months Joanna has struggled with kidney infections............9 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 UTI's from the cleanouts. So the doctors decided that we needed to start catherizing Joanna. This would keep her blader empty, help with infections, and protect her kidney's.... She was seen by her neuro surgeon to check possible shunt malfunction. Joanna shunt has what they call slit shunt syndrome. This is when the shunt is working to well, draining her ventricles to almost nothing. Which is not a good thing. Her doctor said that we should be looking at replacing her shunt the first of the year 2006, if the shunt functions till then!!......... Thank goodness it is now May 2005 and Joanna's bowels have been finally controlled by a load of laxatives. So it's the runs or nothing. We dont care. She is finally having regular bowel movements and few UTI's......................
A few weeks ago Joanna was seen for her routine Rehab appointment. She 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, alot of crying and Dawn her excellent physical therapist Joanna has began walking with a walker. Something I never thought I'd see. She has been through so much. OT therapy with Andrea for tactile issues and social anxiety! Thanks to Andrea's hard work she graduated out of OT about a month ago! Speech therapy with Mia for delayed language. Thanks to Mia she has showed great inprovement over the past month. Her language has exploded!!........... What can go wrong now? Some of Joanna's doctors are concerned about her kidney's. The reflux is at its worst. Concerned that she will damage her kidney's.......
May 13, 2005 we went to Hanover, Va! I hour and a half from home to have a urodynamics study. This shows her bladder pressures, how well it functions and how the kidney's react. This test was going to determine if my baby girl was going to have a baldder augmentation. This is when the doctor's use part of the bowel and stomach to enlarge her baldder. This will help keep the pressures down and preserve her kidney's.......................
Well my nightmare was true. Joanna is going to now undergo a major operation to save her kidney's. May 20 we meet with the doctor to explain our options, and risks. We have decided to go through with the operation.
I will end on this note for now. Joanna has done more than I could ever imagine. She is a bright, loving, beautiful little girl. I will always due 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! I will update as soon as we find out anything. Hopefully the date soon. Please feel free to email me if you have advice or questions. perfectlyinked@yahoo.com
With a lot of Faith and Prayers,
Joanna's Mommy,
Lorie
 | ||||||
| ||||||
| ||||||
Located On The Home Page!
Blessed With Angel Care
I don't suppose you've seen me for I'm too tiny to detect, but even though I am with you all the time. I doubt we have ever met.
Before I was an angel. I was a fairy in a flower. It was God himself who hand picked me and gave me angel power. For God has many angel's that he trains in angel pools, we become his eyes and hands, we become his special tools. But now since God is so busy with way to much to do, he told me that my assignment was to keep a close watch on you, and not to never ever leave you. So when he tucked me into your pocket, he blessed you with angel care and I reassure him that I'd always be here.
