Tuesday, March 18, 2008

The Beginning....

At 10:00a.m., Annabel was born by C-section at 35 weeks gestation. She weighed 5'1oz. and was 17" length. At this time, Annabel seemed to have a grey tent to her body and struggled to eat very slowly. For the first few days, Annabel was on an oxygen machine in the hospital She stayed in NICU for 11 days. She was diagnosed at birth with a VSD and bicuspid aortic valve.

At 13 days, we received the results from genetic testing showing her diagnosis of full Trisomy 18. I made an appointment with the geneticist and he informed me of the statistics of children with this genetic disorder. He stated that 95% of these children die at birth and only 5% live to see their 1st birthday. The doctors were very skeptical of her lifespan and explained that it could be hours, days, or weeks at the most. There was NO hope offered by any of the professionals and experts that I spoke to.
Annabel came home breathing on her own without being hooked up to any machines. It was a bit scary to leave the hospital given that the doctors informed us that she will probably die from aspiration on her bottle. For the first 8mos. she slept on my chest in hopes that my heartbeat will keep hers beating. I was not informed about a sleep apnea machine to help her breathing. At the time, it took almost 2hrs for her to eat a 1oz. bottle and then she would sleep for hours from exhaustion. She was supposed to eat every 4hrs. so we were constantly feeding her between naps. For the 1st year, Annabel was placed in the hospital about every 6mos. for infections.

Annabel had a blessing at our church after mass. It was a little ceremony honoring the life she has lived and blessing her future.
At 3 months:
Annabel began having febrile seizures very quickly. Not knowing what to do, we took her to the pediatrician which in turn admitted her into pedi-ICU. That evening at about 7p.m. her heart stopped. After several days and many tests later, she was found to have Bilateral Grade IV Vesicoureteral Reflux.... which means that she is refluxing on both sides from her bladder to her kidneys. This infection had gotten into her blood which caused her to become septic. It appeared that all of the things the doctors told us were coming true. We did believe that this could be the end, but the little fighter that she is, she pulled through. After 2 weeks, she was discharged and came back home.

At 9 months old, Annabel again became sick very quickly. Tests soon revealed that she was septic. What was so alarming at the time is how she would be fine and within 30 minutes would become so sick. According to the urologist, Annabel was having episodes of life-threatening urosepsis in spite of the prophylactic antibiotic. The right kidney reflux had progressed to Grade V, which is the final stage.
After much consideration, Annabel was scheduled for Bilateral Urethral Reimplantation.

Annabel had bilateral urethral reimplantation surgery to correct her reflux from the bladder to the kidney. Annabel recovered quickly from the surgery, but she required a blood transfusion which kept her in the hospital an extra 2 days. The surgery was a success and she currently has no reflux.

Since September of 2007, we have been catheterizing Annabel to help relieve her distended belly. She has been diagnosed with a neurogenic bowel and neurogenic bladder so the only way for her to empty herself is through catheterizing. Since this, she has consistently had urinary tract infections. It is a constant battle of whether we are helping her or harming her by catheterizing. She does suffer from extreme constipation and has always taken a laxative for it. It is a vicious cycle to get enough fluids down her to help alleviate the constipation and fight the UTIs. She has always eaten by mouth and steadily grown... slowly. Annabel had many different tests performed to rule out potential problems.
We were told that:
-Her vision is fine.
-Her hearing is normal.
-An Upper GI for reflux and PH Probe both reveal no signs of reflux.
-It did show that she has a very narrow airway which makes it difficult for scope and surgery.
-Abdominal scans every 6 months look normal and there are no signs of Wilms tumors.


Anonymous said...

Annabel you have always been such a fighter, reading your story makes me so proud of both you and your mom.

Anonymous said...

is she adopted?

Linda S. Cina said...

Did they ever check her for Achalasia, a esophageal motility disorder? I have it and it can make eating and drnking every difficult.
Just a thought!
Hugs and prayers,
P.S. If you have not read yet, my husband and I are expecting! I am 7weeks pregnant!