Tuesday, September 15, 2009
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.