Tuesday, September 15, 2009

Annabel update

On Labor Day, Annabel had a "spell".  It was the first time mommy or I noticed any breathing complications since she's been with us.  Her color never changed, but we could tell she was working hard to breathe and she was retracting, that is, her chest and ribs were visibly sinking in while she breathed.  Later that day, it subsided and we were relieved...temporarily. 
On Thursday 9/10, the retractions started again, but this time it was accompanied with nasal congestion.  We called our doctor (cardiologist) and her recommendation was either to sit back and "let nature take it's course" (I have a few problems with this, but won't go into it now) or take her to the ER at Cooks Children's Hospital.
I had a lot of trepidation about taking her to the ER.  I think mommy and I just assumed her heart was the cause of the retractions and weren't sure what to expect at the hospital.  We don't want our baby to have to deal with trachs or being intubated.  That's just not what we want for her at all.  I finally decided to call Cathy, Annabel Grace's mom.  Annabel Grace has T18 and is 4 years old.  If there was anyone who could give me some advice, it was definitely Cathy.  Cathy was so pleasant and helpful and gave me some reassurance that as parents, we are in control of Annabel's care.  She let me know that the retractions can be a result of her heart, or any number of respiratory issues and that a trip to the ER could help rules things out and answer a lot of our questions.
Well, later that Thursday, mom and I packed up and drove the 20 miles in the rain to downtown Ft. Worth.  I dropped my girls off at the ER entrance and told them I would park and rush right back to join them.  The staff at Cooks are great, and as soon as they noticed a little baby was waiting to be seen, they hurried them back to triage.  I eventually caught up as they were hooking Annabel up to the oxygen sensor.  She was at 100% oxygen saturation so that made me feel pretty good.  After they took her to a room, they sucked some boogies from her nose and tested for RSV -  result was negative.  Then they x-rayed her chest and they showed no signs of fluid in her lungs.  In the end, the fine Dr. that was seeing us let us know that we were dealing with nasal congestion and prescribed an infant nasal spray to administer every 6 hours.  The spray helps break down the mucus and then we use the suction thingy to remove it from Annabel's nose.  She hates that part :( 
I think that a lot of babies suffer from congestion, but the doctor made it clear that since Annabel is tiny and suffers from low muscle tone, as all T18 babies do, that no one can predict how things will turn out.  All we can do is continue to take care of her, clear her airways, and pray for the best.
That pretty much sums up the last 8 days of our lives.  We'll post more pictures soon.


  1. Thank you for the update. The simpliest things can be so great to our babies. When you mentioned that hospice had given her morphine, I knew that this was slow her repiration down and that can be so critical to them. You did what you knew in your heart. You know better than anyone else what you want for your sweet Angel. I can't wait to see more pics. Please, always call anytime day or night. I had someone that helped me through those early times, not sure we would be here today without it. Give her sweet hugs from the "other" Annabel!

  2. yes nasal congestion is a big issue for our babies. actually it's congestion all the way down...to the chest. Vera struggles with this every night, and has disturbed sleep. So tends to sleep long hours during the day to make up. So far she's managed to get by with nasal saline spray - we spray as necessary and not every 6 hours cos when she needs the relief it's hard to see her struggle. do check if you can spray as needed. but beware those other decongestion drops that are medicated they can worsen the problem.

  3. Praying for sweet little Annabel and her family. Hoping for comfort for her and that the congestion is just that, and that it goes away quickly. I don't think I've every commented before, but I just love Annabel, she lights up my world.

    Love and prayers from California,

  4. Praying for Miss Annabel...I am sorry she has to go thru this, she is like every other baby they all HATE having boogie's sucked out..

  5. That is quite a lot in only a few days! I am so glad you have someone to call and ask for help. Poor little Annabel. :( It is no fun having to have people suck boogies out of your nose. Keep up the hard work, Mom and Dad! You guys are doing such a wonderful job! We miss you guys!

  6. To our beautiful "Baby Annabel"

    We love u soooo much its crazy, but i know tht u kno that. U can feel it. Every1s love for u is wut is keepin u goin, nd makin u soo strong.
    I feel connected to u in a way I cant explain. The other day I felt something within myself that i knew sumthin was goin on and my 1st thought was you. I called ur daddy right away nd he told me u was a little under the weather. I have faith that u will recover just fine. Ur a strong little girl theres no doubt abt that =)
    We love u soooo much baby!!! Continue to get better. God bless u FOREVER!!!!!
    <3 UR FAMILY

  7. When I first read this my heart sank! So sorry she has nasal congestion. Something is going around like wild fire. Both of my kiddos are sick too. :( And they hate it when I suck their noses too. Carrie I hope you remembered to use those Boogie Wipes I gave you! It'll feel good on her nose after you suck out those boogies hehehe. Praying for a speedy recovery of the nasal congestion so Sweet Annabel can be happy! I LOVE seeing her smiling face it makes me smile! :) God Bless you all! xoxo--Rose :)