Well, this was unexpected! Dave and I got lots of quality time with Tess – she did much better at kangaroo! – as well as having a nice brunch together and seeing a movie (John carter of mars). It actually felt like Saturday. Who knew?
Tess is getting fortified milk and tolerating it well. She’s still on high- flow air, but they told us she’s lucky not to be on a ventilator. So we’re still in preemie healthy happy land. Still, a nurse called her a micro preemie today and my heart sank. I don’t know how to describe what holding your breath for weeks feels like. Tess’ roommate is graduating and going home. It’s given us a peek at what the future holds, but it also made going home feel that much farther away. It makes me tired just thinking of all the weeks stretching out ahead of us. I guess the closest thing is watching someone try to get sober – it really is one day at a time, one hour, one minute. I don’t mean to be negative, as Tess is skating through these important early weeks, but the fear doesn’t shrink based on her success so far. The nurses said when she had an open PDA they were almost relieved; no kid’s NICU experience is this smooth.
All that to say, we are really, truly grateful for every day she doesn’t have an infection, or lose weight, or seem crankier than usual.
Today she tried out a new trick: sticking her tongue out! It looked like she was licking her hand. 🙂 apparently that’s a great development step, and goes along with her mauling her pacifier any time she can keep it in her mouth. They’re thinking she’ll be a great eater when we can use bottles.
So to return to the waiting and the worry, tiny things like hand-licking excite us, and crankiness makes us panic. It’s like the extreme sports version of having your first child. Thank god we have nice nurses and good friends!
I know too well how much those little, tiny words hurt…well, more like make a black hole of fear tear through your heart. For me it was “defect” for a while, but strangely I got used to the word (or used to the black hole) and can even use it myself now without holding back barf. I don’t know what sort of NICU you have there, but I know our neighbor in Ben’s high-level pod was micro…and that baby was probably half the size of your Tess and at least a month younger. THAT is micro. Of course, Ben being full term made pretty much every baby there look micro. 😉 I will bet for a while it will be hard for you to hear “tiny” and “small”…and maybe even “angel” if things get really bad. It’s okay. And think of a really good, hilarious reply for those little words that sting like.
Here is my word of advice: banish the word “discharge” from your vocabulary. Maybe you’ve forgotten (because I thought you memorized our blog! hahahaha), but you will jinx yourself if you say “discharge” too much. I swear with every hospitalization the minute I even let myself *think* the word, suddenly that coveted date would evaporate in a sea of complications and setbacks. So, you have to invent a nickname for it immediately! A code word. Something you and your family knows what it means, but you never ever say the d-word. Like knit, bungee jump, descrete math calculation, write a novel, invent a new source of alternative energy, etc. As in “In almost two weeks Tess might be calculating descrete math!”
Also, as I’m sure you know and have read and have been told over and over, you have to take it day by day and sometimes hour by hour. And keep looking at the improvements. There WILL be setbacks. But the overall curve will head in the good direction. I know when our son was born and we were told what the future would hold (three surgeries) it was like the future was impossible. Thinking ahead to those surgeries slowed time down as the weight of them loomed in our future like huge dark clouds of doom and gloom and the possibility of losing what we love the most. And as you know, those three turned into four…and five…and six and seven. I think it was around surgery #4 that we learned to give up on the future. Or, more, focus on the present and appreciate the past. Go back right now and read through your blog here and look at your pictures and marvel at where YOU were just a few weeks ago and behold the awe that is your gorgeous Tess. Know that the future will be just as incredible and awesome.
And I’m telling you, my VACTERL friends and I make fun of premie moms like you. Oh boohoohoo your kid is just there to grow!? 😉 Kidding and in fun, I promise. We all know how much it sucks there.
Assignment for the day: Tess is so good at writing notes, now she needs to start baking. Tess cannot possibly bake enough cookies for her nurses so she better get started now. With nurses, a little bit of baking goes a LONG way. She should bake up a tray of her favorite cookies and leave them at the nursing station with a love note.
..Oh… the picture of her foot and Dave’s ? thumb is so precious .. You guys are going to be alright. What an adventure you three are having. !