The new normal

Leaving the hospital was nerve racking. First of all I have had a nurse or tech sitting at the foot of Maaike's bed or just outside our room door for the past 8 days, 24 hours a day. Yes, a trach baby gets their own personal army. Second, it was my choice to leave the hospital. Usually you have a discharge nurse come and tell you when you get to go home and are, aka, kicked out of there. In our case we are not supposed to leave until we feel confident that we can care for her trach. Our interactions with the discharge nurse went something like this:

"How are you feeling? Are you sure you're feeling okay? We can wait and discharge you tomorrow if you think that would be better. Maybe we should wait til after the weekend and discharge you on Monday. What do you think?"

Wow. Loaded questions. and believe me I weighed the decision carefully, but what I finally came to was that I know what to do and between Friday and next Monday I wouldn't be getting any additional training, so now was the time to start doing. We left the hospital with two cars filled with my suitcase and all of Maaike's gear. We had to use a wagon to get all of Maaike's stuff out to the car. I pulled over twice on the way home to check on and suction Maaike, but finally we made it. My mother in law Rita followed behind me the whole way home and when we pulled off to our exit we started sending each other high fives from car to car. It really did feel like a big accomplishment.

Just after arriving home we welcomed in Kerry, a respiratory therapist, and Tami, a home healthcare nurse, and a truck load of equipment and 3 more machines, the hospital sent us home with two. So this is the new norm.

What I am still getting used to:

• waking up without a panic to one or more of Maaike's alarms going off and unfortunately they are so sensitive that if Maaike kicks they will go off.
• remembering to bring the suction machine, pulse-ox reader, and emergency resuscitation duffel bag with me wherever we go, not to mention the old normal stuff like diapers and wipes and a change of clothes.
• Maaike's silent crys. As she breaths through her neck now no air passes over her vocal cords so she is no longer able to made audible crys or anything for now. At some point she will get a speaking valve that will force the air up and out of her mouth again, but for now the only time when I get to hear her sweet voice is when she burps. Oh how I treasure those burps.
• Seeing just Maaike and not her new appendage. I do have these moments, when I can see only her beautiful face and think of her as just my little baby, but those moments only come and go as I focus in on her daily care. I know with time all of her needs will be second nature and she will just be our little Maaike, but I'm not there yet.
• The sounds our lungs make. I had no idea how noisy our insides are, but now that we have a direct port into Maaike's lungs I know that sound and am learning to gage when it is a happy swishing, hiccuping hiss, or a gurgling I need to be suctioned kind of a sound.

This is a rare sight of Maaike with no attachments on her trach. Oh baby, you had better be a perfect teenager. I can't wait for her daddy and brother and sister to get to know her again. Sigh. Tomorrow can't come soon enough.