Wednesday, March 19, 2008

Our Little Angel

2nd Day of School

Today appeared to be a better morning for Annabel. Now that she is on an antibiotic, I believe that she is feeling better. Tara dropped her off this morning curious to see how Annabel reacts to us leaving her again. When Tara was unloading her from the car, her teacher walked up and Annabel gave her a huge smile..... relief for us!! At that point I knew that I was making the right decision. I am anxious now to get through the day to find out what her reaction will be after school. I spoke with the bus company and was able to arrange for the bus to start transporting her this afternoon. 3:15 rolls around and it is time for Annabel to be loading the bus. I was told that she would probably be one of the first to be dropped off so I estimated her arrival around 3:30-3:45. At 4:00, I started to get nervous because the bus had not arrived. At this point Tara is pacing the house and looking out the front door waiting to see Annabel. Finally, I couldn't take it any longer so I called the school and they informed me that they were running late due to a lack of wheelchair ramp on the first bus. At this time I hear a horn honk in the front driveway and my adrenaline starts to rush nervous of how Annabel will react.... She was soo happy when we saw her on the bus and the lady said that she was just singing away the whole way home as if she knew what was going on. It was incredible... a complete 360 from the day before!!! She is just as happy as can be and is smiling for everyone. God has truly blessed my family with this precious angel.

March 18,2008: Annabel's 1st Day of School

I can't believe that she has lived long enough to start school. Today is a day that I have looked forward to for awhile now. It is an incredible opportunity for her to interact with other children as well as be surrounded by people that aren't her family. My daughter, Tara, is having a difficult time letting her go to school, but, once Annabel gets used to the routine, I think everyone will feel more comfortable about it. I could not get everything setup for her to ride the bus so Tara and I dropped her off this morning. It was nice to have some free time during the day to get all my errands done, but I had mixed feelings about how she was adapting. Finally 3:15 came around and I got to pick up the little angel and find out how her day went. Once her eyes made contact with me she started wailing.... her heart was broken as if she thought she would never see me again. Tara came over a little while later and Annabel was all smiles and laughs for her. To think that doctors and statistics show that children with Trisomy 18 have problems mentally... this little girl is a lot smarter than we think! Her gastro doctor called today and has setup an appointment to have a Gpeg put in her next week... he is uncertain if it is just the Gpeg or if he will have to perform a fundoplication instead. At least we are moving in a positive direction to help her with feeding and emptying.

Tuesday, March 18, 2008

March 17, 2008: Annabel's 3rd Birthday

Today was an exciting day for us all. Annabel is now 3yrs. old and we are going to enroll her in school. She did not wake up with her usual happy go lucky smile this morning. After testing her urine, we determined that she has another UTI. This is a discouraging way to start the day off since we have not heard anything about the gastric emptying scan last week to determine if she needs surgery. I am struggling to decide on which doctor to contact about another UTI. It is a daily struggle to find an antibiotic that will get rid of the infection. We went to speech and PT as usual to make sure she gets her therapy in. She dug into the birthday cake that my oldest daughter, Tara, baked for her. It is inspiring to see her eating cake and drinking gatorade like a normal child. She even signed "more" and reached for the drink, which is very unusual behavior for her. It is not typical of Annabel to drink out of a cup or even eat solid foods so she is progressing wonderfully! After discussing with the therapist and explaining my struggles with the doctors and infections, I wrote her urologist an email explaining that Annabel needs a doctor that is going to help her and not treat her based on Trisomy 18. Not but an hour later her doctor, which hasn't had anything to do with her since September, responded and called in a prescription for her infection and is now taking steps in the right direction to help her. It was as if God knew that I was stressed about what to do. Tonight we had a little family party for her with two neighbors that live down the road. Annabel loved to look at the balloons and listen to the singing one. Overall, the day ended on a positive note and she will be off to her first day of school in the morning.

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.