Thursday, May 28, 2009

The goings on....

Sorry for the lack of post but I think sometimes the stress takes it toll on me. Went to the dr. today and he believes I have shingles. I have not been feeling so great and that is hard for me to relax. The kids help me when they are playing with Annabel, but instead of relaxing I need to wash, clean, etc. I have not been resting with Annabel on the bi-pap and she was not able to clear this mucus thing up while on the bi-pap. It was as if she was trying to get the mucus out but the machine was pushing it down. She can not get the mask off herself and so there is the worry that she will choke, so I must tend to her every noise. I am convinced she breathes and sleeps better with it, but she was staying congested or her airway blocked. On Friday night I made the decision to just turn off the pulse ox and the bi-pap and see how she did. She slept and I slept and I noticed in the morning she was not coughing and choking on all the mucus. Therefore, I repeated it again Saturday night and again she was sounding so clear Sunday morning. Yesterday was our appointment with the pulmonologist to clear her for surgery and she was not making noise that I could hear. Of course, with the stethoscope he said she was noisy in her airway. He told me to keep doing what I was doing until the surgery since the coughing and breathing overall is better. He cleared her for surgery and I have been really at peace with my decision. She has had some really painful nights that she won't even allow us to hook up the tube to feed her. Her tummy is like an empty drum that sounds like it is full of air. So for this I am grateful that God has given me the confidence that the surgery is needed and has taken the choice out of my hands. We also saw her ENT on Tuesday in Houston (new dr.) and he suggested to remove her tonsils and adenoids for her airway issues. I was so glad the next day when we saw the pulmonologist that he addressed this issue and he agreed with me that the findings didn't support his thinking to remove the tonsils. I couldn't understand why the ENT thought this was necessary. He even said tonsils on children with airway issues is very hard for them. I was not for this surgery as we don't believe this to be a problem causing her airway issues. Again, God took that choice away when the pulmonary doctor said he wouldn't ok that procedure.

For anyone that has known Annabel for a while, she has been so healthy considering the trisomy 18. She has amazed many people along her path and done so well. This tummy issue is just a bump in her journey and I do believe she will be back to her old self soon after the surgery.

Some of the pictures below are with my family celebrating Tara's 25th birthday! Boy, am I getting old! The good thing about being my age is having wonderful children and being blessed six times over!

I have been following 3 precious little girls with Trisomy 18. Shane has gained her wings this past Saturday night. Her aunt contacted me soon after her birth. She and Shane's mother are so close and Shane's aunt had been through everything with the family. We talked a good while and then she passed some information along to Megan, Shane's mom. Then Megan and I began talking. What a beautiful loving family Shane has. They wanted to do everything they could for precious Shane. It broke my heart many times over when Megan could not get the medical help and support she needed. They are from Florida and sometime this happen, well most of the time this happens. This is becoming such a passion for me, to educated and show these people that some of these babies do survive and have such joy. Anyway, after struggling for two months and many request by Shane's mom to do scans, test and whatever, they found out she had no bile ducts. They also found she had many heart issues. It broke my heart that she had such little support from the medical community. Please, please pray for this beautiful family as they hold her services this Saturday morning. Megan was the kind of person that when you talked with her you felt as if you had know her for a very long time. She had such a gently, loving, sweet soul.

The other two little girls were both born on April 30th. One little girl is Lily and she is from Georgia. The second little girl is Annabel and they are from Texas. I have visited their blogs and exchanged comments and emails with their parents. They are in the very early stages of their journeys. I am going to put their links below and if you would like to visit and offer prayers for their families I know how much this is appreciated. Again, thank you for visiting Annabel's blog and being so faithful in offering your prayers. Also, I will be posting on her blog from the hospital as things unfold.