Reagan Update...

This is our day...

Happy!

Mad!

Oh, so tired!

Happy again!

Ready to throw a fit!

Most of you want an update, and I hope to be as thorough as possible! It goes without saying that things have been tiring! I think though that maybe things will start to get a little more normal around here now that Dr.s appointments and clinic weight checks will be further apart. We went just this last Tuesday, June 1 to our Ear Nose and Throat surgery appointment. I almost updated everyone that morning about how I thought things couldn't get any worse, but didn't have time to do so. She had to have her last formula feeding at 05:00AM and then could have clear liquids up until 2 hours before arrival time which was 11:00AM. So, the night before surgery Casey reinserted the feeding tube down her nose. Not fun! She was mad and hated every minute of it! Things were fine and settled as soon as we had her swaddled and fed and then put to bed. Well, the swaddle came loose and after I fed her at 05:00AM through the tube, she pulled the tube out of her nose (ERG!, now I would have to reinsert it!), then she threw up in the bed. (Sheets needed to be washed, but I was going to stay at the hospital, so...) Okay, so then I try to reinsert the tube by myself and had trouble with it coming back out before I could tape it securely in place. Luckily, my 78 year old grandmother in-law was here to help me! She has been such a HUGE help! Thank you "Gran", we will now knight you "Nurse Gran." Anyway, we had 12 syringes total to give to Reagan and we had to go very slow. It took almost a half hour to administer it all. Then we had to bathe her because she had puke in her hair. Then we got all of us ready (Gran, Taylor, Reagan and myself) to head downtown for our appointment. Sure enough, when surgery was scheduled at 11:00AM, the hours rolled by... We were finally seen at 2:30ish. Casey met us at the hospital, in uniform to see if he could get an idea of what it was that we were doing. Neither one of us really knew. Finally, we got briefed and Casey was reassured that little Reagan would be gassed before she got a catheter in for anesthesia. Luckily, for all of us, she would just fall asleep instead of having to be stuck and hurt through the whole process. Anyway, things went rather fast and it only lasted about 30 minutes. The only reason we stayed overnight was that she had anesthesia and is so young. Otherwise, things went well and she has laryngotracheobronchomalacia. Yes, I know that is a mouthful! It translates; soft airways. It explains all of the squeaks and mews and strange noises that she makes from sunup to sundown. It also explains a bit why she has swallowing issues and can be associated to her going into respiratory failure. There is no real fix for this, we could see it go away, or if it is still present at 1 year of age, maybe we will have surgery for this. One thing this means for us is that we will have to continuously thicken her feeding and I probably will never be able to nurse her. Another thing this means is that we will probably hear for a long time her squeak and mew for a while. Another thing that we already knew about little Reagan is that her left vocal cord is lame. It is anatomically correct in form but functionally deficient. The right vocal cord is over compensating for this. There is no sign that the left vocal cord has atrophied to date, but it could. Again, this will be something they could correct at a later date. Her voice will be altered because of this, but until she speaks we won't know what to expect. Otherwise, as you can tell in the pictures she is a normal little girl with a heart problem that is also on the mend! She weighed on June 1, 8lbs, 9oz. which is what she was born at. YEAH! I hope you can see her double chin in the pictures! We will be seen for followups with all of these clinics, as you all know. Recovery for her heart is still on the mend. Everything is connected and all we have is time to strengthen and heal and grow. She is a fighter and definitely still spending a lot of energy healing. I still think she is skinny mini! I will upload pics of that later! Thanks for all of your prayers! R