Saturday, November 22, 2008

Sweet smiles...

Overall, I do think Annabel is better. Her spells have lessened for now. When they are happening it can be very scary but they don't seem as often. After my last post when I was hoping the breast milk had done some miracle things (poop) she was actually getting a virus(assumed). She began to run fever and then the diarrhea began. Sunday was the day she really felt bad. The medicine the pulmonary doctor prescribed to help her control her secretions works some as far as the secretions. Some of the side effects are that they will make the secretions too thick where she can't move them, also urinary retention (sure don't need any help in this area), and also slow her GI tract (it was already basically at a standstill). She was already on a low dose and today we have cut that in half. It helps with the runny nose (nasal area) but as far as the mucous in her chest, it totally turns it into a glue like substance. She can barely cough and it is so hard to get up. Occasionally, she would have some urine in her diaper during the night or if we couldn't cath her right on time, but since the meds. she doesn't have any wet diapers. Her urine output at ca thing has gone up about 80-100 cc. We have had to begin Miralax, breast milk and still no Bm's. We are having to help her in other ways. So everything seems to be a trade off.
The good thing is when the fever started her sats stayed in the normal range. Not sure if she has not been sleeping as deeply or what but now she only had a very few. That is huge news for me, as I am not nearly as stressed about get the sleep study right away.
Tonight we attended my aunt and uncle (godparents) 50th wedding anniversary. She has mutured so much. When she was little she could hardly stand to be out of my site. She went to everyone and made all smile. Of course tonight she was so happy. There was music which she loves and lots of picture taking. I didn't bring my camera but will get some and post soon of what a happy baby she was.
Praises here are that she seems to need much less oxygen, there seems to be a bit more of managing her secretions and tons more happy times than before.
If this had anything to do with her having some kind of reactive airway issue due to the storm, I am hoping the cool weather/rain has maybe washed or done away with some of the bad air. This would mean that Annabel is not experiencing anything permanent from the Trisomy itself.
Thank you to all who comment, visit her site, place calls, ask questions about her and offer prays on her behalf. Thank you to LaToya our nurse who has helped me to be able to be more consistent with her care. Thank you to our therapist, Meg and Carole, who continue to push Annabel and to put up with last minute cancellations due to her just not being able to make it. Thank you to my friends who offer me support, calling me to take me out making me feel normal and that I can have some bit of a social life, to my children who come over and love their little sister to her core. I know she bring them such joy, but they can't begin to imagine the joy they bring to her little life. God has blessed me with so much and I will pray he continues to give me the courage to make wise decisions and the strength to meet her daily needs.
P. S. by the way, she doesn't sleep with headband in her hair. We had been out and I had not removed it yet.


Anonymous said...

Thank you for the new pics, was having Annabel withdrawal! So glad to see her smilin'! Will keep prayers a comin'! Janell Ford

Hilary said...

Thankyou for the update Cathy! Annabel looks so cute in her PJ's..have a safe and bless Thanksgiving..keep feeling better little Missy :) Will keep praying :)

Kelly said...

it's good to see the little princesses smile :)

pooping is an issue i think we all face...i wish we could find the magic cure so our babies would be more comfortable. i hope annabel starts feeling well and getting her issues sorted out really soon!

May said...

you have done so much for Annabel day in day out. I'm glad the 'storm clouds' seem to be over and she's sunshining again!

Jessica mommy to Alex/ RTS said...

Love you Cathy!

ANewKindOfPerfect said...

Oh my gosh, those new pictures are TOO CUTE!!

Maya, Mieko and Hana's Mom said...

Wonderful to see Annabel's smiles. It always warms my heart.

Tamara said...

Hey girl, just wanted you to know I am stopping my with my mother in law to show her all the kids that I have met! I am overwhelmed with all the stuff that you are having to go through with her right now! Bless your heart! I am thinking of you and praying often! Love you!

Penny said...

I am so glad to see that Annabel is smiling again!!! What a blessing she is. I have become one of many that may never get the priveledge to meet her in person but is amazed at her spirit. I am been praying for some relief for your little one.

Keep those pictures coming that smile is infectous!

Melanie said...

Although my daughter Samantha's issues cannot compare to Annabel's daily trials (and the miracle that is her life), my husband and I have also struggled to find a way to overcome our baby's constipation problems.

For two months we tried all different ways to help our poor baby, as she would get severely sick every four or five days due to her inability to pass stools regularly. The doctors said there was no correlation, but we knew there was.

We finally got a new pediatrician and he told us to start putting Oatmeal Cereal (not regular oatmeal, but a flaky, fish-food, sort of mix) in her formula to help her with her reflux. I can honestly say it has not helped her reflux AT ALL (nor has it made it worse) but it helped her poop! She has now had AT LEAST one bowel movement per day the last week.

I don't know if your precious Annabel can even have oatmeal, but if so I urge you to try it. I am no doctor so I can't say that it will work for everyone but it did with us, and I am so thankful. It was a hard two months seeing my baby in pain from it. DONT use rice cereal, as it will constipate her further, our doctor told us. You can mix the cereal into her formula or milk and it goes through the nipple just fine, but I strongly suggest only using a half teaspoon in the morning and at night, until she is used to it. We started off with too much and she ended up having too many BMs.

Like I said, I don't know if it will work but anything is worth a try. My doctor also said pear juice alleviates constipation...haven't had to try that yet so I'm not sure on that one. All of this for my daughter who is two months old.

I wish you the best of luck. After reading other Trisomy 18 blogs I was very much surprised to learn of Annabel's age and her appearance. Unless you tell people of her disorder, you'd never know! She is as normal on the outside as any other baby, and beautiful to boot!

Well wishes,


Melanie said...

P.S. The oatmeal brand I use is called "Beech Nut" and it is "Oatmeal: Cereal for Baby". It is made from natural ingredients and is soy free.

Praying for you,