Wrapping up Part 1

I.e, figuring out our new normal.

We've been home for four days now, and in that time, I've heaved approximately six dozen happy sighs at the mere thought of being home. I have my own kitchen again (though I've hardly used it, at this point), my own bed (though Brandt makes sure that the amount of time I get to spend enjoying it is minimal), a couch to flop on without tripping over hospital paraphernalia...needless to say, life is good.

Monday morning was my first day with two kids on my own...something that I had been looking forward to with some apprehension for quite a while. I was, after all, doubling the amount of children in the house, which is no small thing when you're trying to get said house put back together again after three weeks' worth of accumulated stuff was moved back in and unceremoniously dumped on the floor. This particular Monday was a trial by fire, as the folks at Seattle Children's had scheduled our follow up appointment with Ruggerie for 9 o'clock that morning. That meant having both kids packed into the car by 8:30, as well as all the accessories that go with two kids of their ages, and let me tell you, there are a lot of things that had to be squeezed into that diaper bag.

Shockingly enough, I didn't forget anything, and even made it to the clinic on time! Mind you, it was the wrong clinic, because we only have half a million of them in town, but the correct one was just across the road, thankfully. We made it in, huffing and puffing, at 9:02; just in time to wait another twenty minutes before being called back to our room. I'm so glad I rushed as much as I did.

Anyway, the appointment was very enlightening. Almost literally. By the time we left, Ruggerie had gone down the list of stuff the hospital had sent home with us (meds, vitals, weights, etc) and crossed off everything but three medications. No more diuretics, daily weight checks, or twice daily pulse-ox recordings, and the other five meds? Nah, just stick them in the back of the cupboard. We talked over everything that had gone down at the hospital, did another echo just to make sure everything was still functioning properly (it was), and then hit the topic of pediatricians.

The one I had used with Wade (but haven't seen in probably a year and a half, as a result of missing his one year well check and forgetting to schedule another) is just a family nurse practitioner. Not only is she not an actual pediatrician (not a big deal, in Wade's case), but she doesn't have hospital privileges or have experience with kids with CHD's. Ruggerie, it turns out, had recruited a pediatrician from LA that trained in a cardiac facility, and he generally sent his heart patients to him, so they could work together on them. Towards the end of our appointment, Ruggerie informed me that he had made us an appointment with this Dr. Eckleson, in half an hour's time at yet another clinic...this one on the opposite side of town. Oy.

By the time we left that appointment, my Brandt-related work load had lessened even more! He cut two more medications out of the picture (down to just aspirin once a day, now) and decided that since Brandt has been gaining so well...about two ounces a day...we can stop fortifying his milk! Suddenly, this kid is much lower maintenance than he was when we brought him home. Thank goodness.

We got home from those appointments right around naptime, and about an hour after that, my grandparents showed up with my mother-in-law in tow! We had arranged for them to pick her up at the train station that morning, and they got to stick around for a while and get some great-grandbaby snuggles (and, in Grandpa's case, a nice nap in the rocking chair). Within three hours of Joyce's arrival, five loads of laundry were all sitting nicely folded in baskets, and the crock pot that I had been putting off washing was cleaned up and ready to go again. The next day, she made Tanner breakfast and watched both kids so I could catch up on some sleep, and then watched them again while I napped that afternoon. She doesn't know it yet, but I've decided she's not leaving.

So it would appear we've reached the end of Part One of this little adventure. The next few months will be spent living life nearly as normally as we had it, previous to having this particular bomb dropped on us. The main differences will consist of quite a number of doctor's appointments, and an increased tendency toward reclusive-ness. We can't afford to take Brandt out in public much in the next couple months (at least through April, I'm thinking) because of the risk even a minor illness can present to him. Anything that makes him work harder to breathe (a cold, even) will make his heart work harder as well, and poses the very possible reality of another hospital visit. So until cold and flu season has passed, I'm sorry to say that we won't be seen much around town.

This is going to be my last blog post for a while. When Part Two (his next surgery) starts up , I'll make sure to keep you all updated the same way I've done these past few weeks, but for now, I'm going to forget all about it and spend my time enjoying these two little squirts as much as I can before our next stint in the hospital! Thank you again for all the thoughts and prayers and assistance and cards and phone calls and texts...they've been much appreciated.