Tell the World that I’m Coming Home

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Two Hundred Ninety Six Thousand Six Hundred and Forty Minutes…

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Four Thousand Forty Four Hours…

Two Hundred and Six Days…

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Twenty Nine (point) Four Weeks…

Six (point) Eight Months….

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And just like that…our NICU story was over…

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We were all HOME…

But as much as we couldn’t wait to get here to this place…to “home”…

It was almost as though…we weren’t sure what to do next…

With a baby…who was in many ways…just a baby….

But one…who relied on plastic pieces…with no functional airway (without the trach)…who received all nutrician from a tube…who (in the most loving way) turned our world upside down…

And she suddenly seemed so fragile…

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And us…so uncertain…

But somehow…we found ourselves at the end of the day…one day wiser…

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And somehow…the morning always came…one day stronger…

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And the tomorrows became less scary…one day easier…

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And suddenly…we became “US”…and created our definition of “normal”

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We weren’t perfect, we certainly made our share of mistakes, we did things that worked for other families (that sometimes worked for us and sometimes didn’t)…and somehow…we found what worked…

FOR US…

So here they are…in no specific order…things that work for us…(again, lots of things that work for other families didn’t work for us…so it’s ok if these things don’t work for you)…

1. We made sure to be at the NICU everyday (which became much more of a logistical nightmare once Cole came home…). But in all actuality…it’s really not about BEING there (in the sense of the hours that you spend in the NICU)…it’s about actively DOING. This means that once we knew that we were coming closer to discharge, we timed our visits to be sure that we: (1) changed her trach (several times, in partners and alone); (2) did all of her trach care (cleaning, changing her trach ties, suctioning); (3) fed her (via GT from start to finish); (4) learned how to administer her medications; (5) learned her schedule (it was easiest for us to keep Audrianna on the same feeding/trach change/medication schedule that she was on in the NICU).

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2. Given that Audrianna has a trach (and no stable airway without it), our hospital required that we have nursing in place at home.

Every week, we are allotted a specified number of hours of nursing care (LPN’s) that come to our home. We have nurses overnight and when we work. (NOTE: as they are Audrianna’s nurses, the are not permitted to provide care for Cole…so when we are at work, we always have another adult at home to provide care for Cole).

Even though we have extra hours, we have chosen not to use nursing when I am home or on the weekends. For us, this makes us feel some amount of being a “normal” family.

Honestly, being the “nurse manager” is (and has been) the hardest part of Audrianna’s care. We have certainly, in the last few years, had our share of ups and downs. But…here we are…two and a half years later…lucky to have had nurses who had worked for us in the past who taught us lessons that we didn’t even know we needed to learn, who showed us amazing acts of kindness, and who have turned themselves inside out to make things easier for us. We are so blessed to be able to consider our nurses as part of our family and to them….we are forever grateful.

So, here’s my thoughts on finding nurses…it is a process…it’s difficult…in the beginning, it is awkward to have someone in your home that is not part of your family…not every nurse works out, so be patient…it’s ok to be “picky”…you are entrusting that person with your child’s life…

3. Figure out the logistics so that they work for you. A trach and no functional airway without the trach = 24 hour monitoring (meaning she can never be outside of the sight of an adult who has been trained in providing trach care). Here are a few examples of things that we have made adjustments for:

(1)  Audrianna can’t sit in the backseat of a car alone. So, when we drive, we make sure that there is another adult (who is trained in her trach care) with her in the backseat…which also means, fun times for the adult smooshed in between two car seats.

(2) Audrianna can never be left alone with anyone who has not received full training in providing her care. Which means, that we can’t just call a “babysitter”….we are super strict on this and have made absolutely no exceptions…which sometimes means that we end up with two cute dinner dates, who are still working on their table manners 🙂

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(3) Audrianna’s “bedroom” is in our dining room on the first floor…so this works for us, because after she goes to bed, we can still be within a few feet of her.

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Additionally, when she sleeps, she is on a pulse ox monitor (that continuously monitors her heartrate and oxygen saturation) and a cool mist compressor (that provides humidity to her trach).

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In addition, she might require suctioning throughout the night. All of these machines and monitors make noise…a lot of noise….so in our house (beautiful house with plaster walls built in 1900)….we worried that having her upstairs would be disruptive to her twin.

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Additionally, with having a night nurse, we understood that the nurse would need access to the fridge (for her overnight feedings), a bathroom, the fridge for their food, the microwave. Having Audrianna on the first floor allows the nurses access to all of these things freely, while keeping Audrianna within their sight.

The brown shelf next to her bed holds all of the important supplies that need to be kept within reach (we have an extra closet with all of her additional supplies)

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And on the shelf above her crib, we always keep extra trachs, ready in the event of an emergency…

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4. Sadly…there is no “sleeping when the baby sleeps”…not EVER…or showering…or anything that would make you unable to respond to your child IMMEDIATELY in the event that the monitor beeps while they are sleeping…

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And…in the end…it somehow all seems “normal”…

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