Angels in Action: Extremes

As you can imagine there is an incredible dichotomy of emotions in our household. We have the obvious joy associated with everything involved in having a new baby and of course, great concern associated with Alli. When we arrived home yesterday and I took Josh upstairs to nurse for the first time, I was over come with emotion. Each of the children has been nursed in this chair. The last to be nursed here was obviously Alli. As I sat with Josh, I was flooded with memories of the time I spent with Alli in this chair her first few days home from the hospital, so uncertain of what her future would hold. So many prayers were said with her in that corner of the room. As her medical status has become more and more complicated, we have spent less and less time in that chair, and less and less time praying about what her future holds. Kind of ironic. I told my mom last night, I feel somewhat suspended in time, just waiting to see what will happen. I still make a point to attend weekly mass, but even there find myself just sitting there taking in what is going on around me, but not really knowing what to pray for. I have come to a point where I feel like we are accepting whatever challenge we are given, but, then I wonder, if I was spending more time praying for a different outcome, would things have evolved, or be evolving differently with her? Maybe. But, then I think, of course God knows that this is not what I want for my daughter or the rest of our family - to see her hooked up on a ventilator, fed by tubes, with a catheter draining fluid from her brain - to only have a couple of hours together every day welcoming Josh in to our family - always knowing that there is one member of our family that is noticeably absent from first pictures and first times together. So, why ask. I believe He knows what He is doing and some day this will all come together and we'll understand why it had to happen this way.

Before you think I am spending all of my days wallowing, be assured, there is great joy. While I can't deny my moments of sadness, I also can't deny the moments of happiness. Every time I look at Josh's precious face and I see how excited Samantha is to hold him and be with him, I know there is a great purpose to his role in our family. He smiles. He touches my hand when he's nursing. He makes a funny fish looking face when he's ready to eat and he's searching for something in mid air to latch on to. He occasionally babbles. He is easy to console (don't confuse this with a lack of sleepless nights - there are still plenty of those :) ). He lives up every day to the meaning of his name - savior. He is starting to have more awake time during the day and I look forward to the moments when he looks up at me, or Jason, or Samantha with his bright blue eyes. I am so happy we have him.

Alli continues to recover from surgery. As of this morning, she went 25 hours without seizure activity. Therefore, they started her on a "sedation holiday." They turned off her ativan to see how she would respond. Jason reported that she almost instantaneously twitched her feet and hands. She seems to have tolerated her "holiday" well. They made some adjustments on the catheter in her head this morning and it is draining better. The neurosurgeon told Jason in rounds this morning that he is pleased, so far, with the progress she is making. From his perspective, her next step before putting her piece of skull back in, will be to send her to inpatient rehab to get a little bit stronger. From a ventilator perspective, since coming off of the ativan, she is consistently breathing over the ventilator settings, which are as low as they will take them at this point. Her next step from a breathing perspective will be to extubate her, once they see she is awake and capable of breathing on her own. So now, as we continue to reduce her sedation level, we are waiting to see how she wakes up, what her level of responsiveness is, etc. All of that will determine extubation, possible transfer to rehab, etc. Jason has done an amazing job of managing her care while I have been in the hospital and at home. He spends every night at the hospital, participates in rounds, follows up with each of the specialists daily, and just, in general, has been an amazing dad and husband. He is home for dinner at night and makes sure to spend some time with Samantha before he heads back to the hospital. He is amazing. I am sure he wishes he was spending more time at home with Josh these days and know that he too looks forward to our whole family being back together under one roof.

Samantha is overjoyed with Josh. She races up the stairs after school to see him and kiss him on the head. She takes extra care to be quiet when she is getting ready for school in the morning, so as not to wake him (or me :) ). She is so excited to be able to play with him and to help take care of him. She has also been enjoying her quality time with nanny and Grandpa John. She has taken to having "sleepovers" with them while they are here. She has a blow up mattress that is set up downstairs and she stays with them at night. Grandpa John bought her a couple of kites and they have been to the park a few times to fly them together. I am happy to be home spending more time with her. She has done amazingly well given the amount of time Jason and I have had to spend away with Alli and the new baby. She really is a trooper.

Thank you for all of your continued prayers and support. We have received many delicious meals over the past few days and are so grateful to everyone who has offered their support to us. Below are some pictures of Josh and Samantha. Enjoy!

Ready to go home...