Today has been a good day for Annie. She is still having some arrhythmias, but in general, they seem to be decreasing in frequency and rate. Her chest tubes are draining very little fluid and will probably come out in the next day or two. Everyone now seems to be focused on the ventilator. Annie is very weak from all that she has been through and requires a lot of support from this machine to breathe. This, combined with her anatomy and the possibility of continued airway obstruction, makes coming off of the ventilator a big hurdle for her. The doctors think it will probably take a few weeks for her to condition and build strength before they will be able to attempt to extubate her. They have told me that the day she is extubated will likely be very stressful and if she doesn't do well, they will have to re-intubate her. They would then give her more time to build strength and eventually, let her try again. They plan to be patient and give her as many tries as she needs, but there is a possibility that she will just not be able to do it. If she is unable to be successfully extubated, they will do a tracheotomy and we will bring her home on a ventilator. She would likely be able to come off the ventilator at some point (probably a year or two) as she grows and gets stronger.
I know that we have been granted so many miracles with Annie already: she took that first breath and even cried when she was born; we were able to hold and love and rock her for three-and-a-half-weeks before she had her surgery; we brought her home and for two days our entire family was blessed to be together; even her very life was spared when medical means to save her were all but exhausted. Our sweet Annie is a living, breathing testament of the power of prayer and faith, when aligned with God's will. She is alive, and every day I give thanks for that miracle. I feel so humbled and grateful for all that have exercised faith in Annie's behalf. Cameron and I cannot help but get emotional when we talk about the love and prayers that have carried us through this most difficult time. I believe that all of you have helped bring these miracles to Annie and our family. We will never be able to say thank-you enough, so please know that our hearts are filled to overflowing with gratitude for your part in her journey. Is it too much to ask for another miracle? I hope not.
Now that the focus is on helping Annie to come off of the ventilator, I find myself feeling anxious anticipation. Not because I don't trust in God's will for my daughter, but because, as her mom, I can't help but want every good blessing for her. Back in January, when I was reading about and researching her condition, I learned that coming home on a ventilator was a possibility. While this is certainly not the most important detail in her story, it has always mattered a great deal to me. Every wish of my heart is for her to be able to breathe, and eat, and grow, and play, and do all the things that babies do; and to do these things without being tethered to a ventilator. I have a friend that often asks me about the details of Annie's progress and our most current concerns for her so that she can pray specifically about these things (love you, Emily!). I am always impressed with this and love that she knows that Heavenly Father is interested in all the happenings along the way- not just the final results. With this in mind, I would ask you to please pray specifically for Annie to grow strong enough in the coming days and weeks to be successful in coming off of the ventilator. I know that Heavenly Father will not ignore these prayers offered in her behalf, and if this desire for Annie is compatible with His will, it is certainly within His power to grant this additional miracle. Having said that, I also know that coming home on a ventilator may ultimately be a necessary part of her recovery. If this is the case, then I trust that He, who knows best, will still bless Annie and our family in answer to these many prayers.