March 20, 2009 Update

Hi all,

We went to see a Pulmonologist (lung specialist) yesterday. Taylor has had some funny breathing habits since before the surgery that turned out to be a result of her very enlarged pulmonary artery pressing on her airway. As a result, her airway is a little "floppy" or as the Dr. described it yesterday - it is like a trash can with one of those lids that opens and closes with a foot pedal. Hers isn't always closed when it needs to be like when she is feeding and so she sometimes aspirates her formula. This causes her to sound really congested and to cough at times to try to clear it. The floppiness also causes the trachea to collapse somewhat when she is on her back. When she is relaxed and happy, this is not a problem. But when she is agitated or crying it can cause her significant difficulty.

So...first he wanted to send us to the hospital to have her monitored. Jason and I were not pleased with this option knowing that nothing would be resolved before Monday and we would be in hospital limbo again having to farm out Cam and Em and not sleeping. Instead our doctors all consulted (cardiologist, pulmonologist and pediatrician) and decided that if we could watch Taylor's breathing patterns here at home, especially when she is sleeping, to determine if her Oxygen saturation is staying where it needs to (80-89) and work hard to keep her very calm we could have her at home. We are going to be supplied with a pulse-ox machine to monitor her heart rate and SATs(oxygen saturation) as well as bottled oxygen for if she seems to experience distress and doesn't come out of it for several minutes. This can definitely be avoided by not letting her cry for too long or get really upset. When she does get angry she turns a lovely shade of purple. Jason and I have gotten used to it, but it is not something the doctors want her to experience often.

I had this little monkey so well "trained" before surgery - putting herself to sleep and sleeping through the night - just like the other two. Since we came home from the hospital we have been trying to get her back into her routine but she is a different kid now! At the moment she HATES being put down to sleep in her crib. Even if she is fast asleep in our arms or a bouncy seat, etc. and you move her to the crib, within 5 minutes she is wailing! Not fun, especially in the middle of the night. Jason and I spent two hours trying to lull her to sleep the other night. This is not conducive to working during the day or spending quality time with Cameron and Emileigh. Wednesday night we moved the swing to our room and let her sleep in it out of desperation and she slept really well!!! When I explained this to the doctor and asked if I should be letting her "cry it out" he gave us permission to let her sleep wherever she is most comfortable - swing, carseat, crib - and to keep her happy! So that is what we are doing. She had a great night last night and is a much happier kiddo today - and we all slept.

We also are now using a thickener for her formula which should help her to avoid inhaling it as she gulps it down. We are already seeing positive results and are looking forward to our follow up appointment Tuesday.

This weekend we are going to go an buy a newer, quiter swing for her and let Cam and Em help pick it out. So much for following the "rules" for an infant. We have learned quickly with Taylor that she makes her own rules!!! :) We can live with that as long as it keeps her healthy.

Here's hoping for a restful weekend... Thank you for the continued prayers!!!