Yesterday afternoon, we had a two hour meeting with a social worker in order to begin the process. I never realized how much planning is involved in something so seemingly simple. Like the need for our nurse and respiratory technician to meet us at the house upon our arrival. I can't imagine anything else requiring this much precise organization. The house itself needs to be coordinated specifically to meet Little Bird's needs. This, meaning she won't sleep upstairs in her cradle next to our bed. Instead, we overhauled the downstairs in order to comply with a few standards. Such as her and her equipment needing to be as close to the kitchen as possible, as well as have a constant source of overhead lighting in order to properly complete certain procedures that are part of her daily care. In other words, half of our living room just became a children's unit. But this is something we've anticipated, and there is a big difference between a sterile hospital environment as compared to the comforts of home.
Parents wear a lot of hats. Last night, I was a NICU nurse, and a respiratory technician. We got there early, and Little Bird was sound asleep. We hung out at her bedside for a while, looking over her chart and the stacks of instructions and protocols that we eventually took home with us to study and memorize. It didn't seem like she was about to wake up any time soon, and we were still two and a half hours away from her next care time. So we took a walk to the cafeteria for a quick cup of coffee and to kill some time. We got back to the unit a little while later to find Little Bird wide awake, and in need of a suction and a diaper. Her nurse was called out to a delivery, and I didn't feel like either was something she could have waited for. I also saw no need to call for backup. This was something MFH and I could do ourselves, and so, we did. Ten minutes after we finished, it was shift change. Her evening nurse arrived and was pleasantly surprised to see that we not only took the initiative, but accomplished the task sufficiently. Team Little Bird, for the win! We took so many photos, as well. Apparently Daddy is more comical than Mommy. I couldn't get her to crack a smile to save my life, but for MFH, she wouldn't stop...
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| Waiting For Little Bird To Wake |
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| So Comfy |
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| And So Peaceful |
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| Dreaming Of Flying |
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| I'm Awake! Pick Me Up, Please! |
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| Blurry, But She's Smiling :) |
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| Telling Me About Her Day |
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| Her Kissy Face! |
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| Thinking About Tomorrow |
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| Discussing Our Plans |
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| More Kisses, Please! |
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| She's Very Excited! |
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| Look At Those Eyes! |
Little Bird has also worn a lot of hats. I mean this very literally. Before we left last night, her nurse gave me a paper bag. In it was every single hat she wore since the time of her birth. The pink one. The smallest of her collection, worn only when they opened her bed for procedures such as x-rays, ultrasounds, and PICC line placements. The rainbow colored pastel one. The first one to properly fit her head, once she grew into it. The one with the ruffled brim. As tiny as the others, but it was her first real dress-me-up accessory. The pale purple one. The one she was wearing the night her breathing tube obstructed and she crashed. I haven't seen them since before she transferred to Philadelphia, since she grew out of them. I never thought I would see them again. And I certainly never expected such an amazing gift from the nursing staff.
With the exception of CPR certification which is scheduled for tomorrow evening, we've completed the rest of the training. Today was our last 'free' day at home, and today, I was a secretary. So many phone calls and emails. Including her pediatrician, to give him an update on her progress and this projected release. Our electricity provider, because they needed to know the specs of the machinery in the event of any weather related urgency. The hospital, just to double check the plan. The in-home respiratory specialists, because we have a relative who does this for a living and we're trying to get him assigned to Little Bird. And an impromptu dental crisis which Number One began experiencing last night. But we're getting there, and knocking each task off of our itinerary one by one. During dinner tonight, we had a meeting of sorts with the big kids over dinner, just to make sure we're all on the same page in regards to the changes that are about to affect us all. Their questions were interesting, and not quite what I'd expected. Does the vent have an alarm in case of an emergency? What do they need to do if it alerts? How soon will the nurse get here? Our family, as we knew it, is no longer, and we are all very much aware. It's about to become very complicated, and we are about to become complete.
MFH and I will spend the rest of the evening packing Little Bird's welcome home bags, and an overnighter for myself. We have an early afternoon meeting with her team tomorrow. One last get together before the big day. Tomorrow night, she and I will begin our slumber party. Rooming in at the NICU until I'm confident enough to say that I can handle her care on my own. The staff will be there as backup, just in case. And once I can give them the green light, we will be on our way.
I can not believe that this blessing is actually upon us. The fact that she has made it this far is a testament to her will to live. There were so many nights spent at her isolette, silently praying for the next morning. And each time the sun rose, a tiny sigh of relief. For how exciting these days are, they are also riddled with anxiety. We are not safe yet, this we know. Even after she's here. Especially after she's here. But it is a very welcomed and huge step of her recovery. To be able to come home means, at least to me, that she is truly stabile. Life for Little Bird is about to truly begin. We have so much to look forward to.
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