Update on Presley!

As mentioned in my last post, Presley transferred to the pediatric floor last Saturday. On Tuesday she had a major desaturation in oxygenation. I mean major! She quit breathing momentarily, turned blue, and after a 'code blue' was called, followed by much mayhem and about 25 more people than necessary entering her room, she recovered. I was present at the time and I thank God that I was. It was the absolute worst 5 minutes of my entire life but I will always thank the dear Lord for allowing me to be there for my daughter. They transferred her back to the PICU to run some tests and monitor her for 48 hours. After tests were performed and by process of elimination, they are going with the assumption that reflux caused her apnea (cessation of breathing), which of course caused her oxygen level to plummet. Enough of the medical mumbo jumbo. Long to short... they have talked me in to a g-tube for her, this will be a tube inserted into her stomach for feeding. I have been very reluctant to this. You guys have to realize, I work the adult side of the medical field, and on that side, a g-tube is usually the beginning of the end. It represents very ill and very sick people. Even though, logically, I know this isn't what a g-tube means for babies, it is still a hard thing for me to accept. Luckily, Presley has some amazing doctors and the Lord sent just the right one, Dr. M, to sit in front of me, about 2 inches from my face, and say "This does not change your daughters out come. Nothing about a g-tube means she isn't going to recover just the same, go home, be happy, laugh and roll around on the floor with your other children. She will grow out of the reflux and we will pull it, done!" That is exactly what this sweet man said to me and I made a point to tell him the next day that it was his words that helped me to embrace the idea. Now I see it as a positive, I can be assured she is safe, we can bring her home even sooner post op because we won't be waiting around for her to learn to nipple and on the selfish side, she won't wake up in the middle of the night to be fed. LOL! They should do the procedure on Presley in the next week or so, I will keep you guys posted.
Presley went back to the pediatric floor on Thursday after her two day stay in PICU. We are settled in again and are getting therapy every day and doing well. Presley did have a difficult day today. She struggled with her oxygen level as well as her work of breathing. Her little heart is working so hard and I pray this next month wont be too difficult for her little body to bear while awaiting her surgery. Please keep that in your prayers.
This little Angel is so beautiful. I am sure it is because I am madly in love with her but never the less, I think she is the most beautiful child in the world. I kiss her sweet face all day, over and over and over. When I am done and I pull away, she has this crooked little smile on her face and I swear to you, her eyes are saying 'more mommy, more.' And she gets just that....more kisses, I love her so very much. I could never love one of my children more than the other but I love them all very differently. And certainly, my love for Presley is different. My heart hurts so deeply for what she has had to endure and for not being able to take her pain away. It tickles me when Mikah hurts something, she absolutely has to have me kiss it, and magically the pain goes away for her. I wish I could kiss all of Presley's pain away. The fact that I can't takes me to that very different love that I speak of. It is a love somewhat fueled by heartache, it is the only way I know how to describe it. I try to have faith in the day when she will be healthy and the only pains left for her will be the ones that are magically healed by mommy's kiss. However, days like today test that faith.
A great friend of Mikes, Zach, sent him a text the day of her last procedure and assured him she would be fine...he said "She's a Giles!" Yes, she is! A Giles with some Devlin/Desalvo blood running through her and that makes up some pretty tough stuff! Not to mention, she has the hands of God upon her and the prayers of some wonderful people...so, to all you wonderful people, thank you and please keep praying for our butterfly.