Reunion

Last Friday we made our triumphant return to UVA for some follow-up appointments. It's amazing how the 9 (very long feeling at the time) weeks we were there all of a sudden felt like 3 seconds of time.

So we followed up with hematology about the blood clot in her leg from the first PICC line debacle. We've been giving her Lovanox shots twice a day to prevent it from spreading. I was hoping to convince them to stop the shots, but they said no. Boo! So we have to give her the shots for another month. We go back on May 19 to get an ultrasound on the clot and more blood levels on various things I don't really understand. The bottom line is, May 19 should be it for the shots. Yay.

They had to take blood from her while we were there and it's still just as hard as ever. After a failed attempt on her arm, the nurse told us to tell anyone trying to get blood from Molly to go straight for the head. So... now you know.

After hemo, we then met with cardiology to get her pacer checked. This is pretty much the only time anyone at UVA said all her tests came back "perfect." Woo hoo. Her pacer is functioning great. They know this because she has a little computer inside of her that collects information n her. To read the information off it, they put a huge magnet up next to her chest. Wireless technology at it's best! In fact, once we get over the initial year of monthly pacer checks, we will get to check her pacer over the phone! We just call a number and it can read her stats right there. Weird.

The rest of our time was spent visiting with nurses, doctors, moms and others that we knew. It was an amazing feeling to be able to be with everyone knowing that we got to go home at the end of the day.

On a related note, Molly is still happy at home. She loves baths, being in her car seat and smiling. She hates  her shots, being left alone and gas. She also has been noticing lately that there are two similarly-sized fuzzy things living among us. Oh and also, somehow, every song now has "Molly" somewhere in the lyrics.

Follow up cardio appt next week for another echo to check on the heart function.

Molly phase deux

Well we are home! And it feels wonderful to focus on "normal" baby things like lack of sleep and if Molly is hungry or gassy (both usually). We'll keep posting Molly's medical updates, since we're still dealing with her cardiomyopathy.

Leaving UVA was bittersweet for sure. We got to stay in the room-in room the night before. At 6am the new resident doc (who replaced our beloved Dr Mike three days before) comes into the room to check in on Molly for the final day of rounds. I remember her saying something about how she lost weight overnight (50 grams, which is tiny) and that maybe they would hold our discharge until later in the day to see if she gained weight. I almost threw her out of the room and grabbed Molly and ran for it. No one who has only been there for three days was going to keep us from leaving! Fortunately, the attending physician dismissed what she said and sent us on our way.

That morning was a whirlwind of doctors, nurses and goodbyes. These people became our family over the last 9 weeks and, in a way, it was sad and scary to leave that.

Since then we've had 2 pediatrician appointments (she has gained 6 ounces and is a whopping 7 lbs now) and one pediatric cardiology appointment. Dr Albrecht (the ped card) did an ultrasound and said he thought her cardiomyopathy (the heart squeezing issue) looked improved. Yay! It's nowhere near normal heart function, but improvement is improvement. We know that if the immunoglobulin treatment she got does work, then it will take months. Hopefully the improvement he sees will keep going.

This Friday we go back to UVA for a hematology (to check on the blood clot in her  leg) and cardiology appointment (to check her pacemaker and heart function). My hope is that hemo will say we no longer have to give her the shots. It is the saddest thing ever to have to give her shots twice a day. Brian and I find ourselves stalling often. "Oh but she's so happy." "Oh but she's sleeping." "Oh she just smiled at me. I can't give her a shot right after she smiled at me."

So wish us luck!

Some pictures from our departure...

The last day of rounds. This was my 9am meeting every morning. You can see Dr Jess, Dr Paget-Brown and Dr Mike.

Our last moments in the NICU.

Rebecca, our amazing cardiac nurse practitioner.

In the car no the way home!!

Molly's first bath with the lovely Gayle. She wasn't allowed to have a bath before because of all her tubes. She only half liked it.

Molly pondering what life will be like out of the NICU.

First moments at home and Wedge approves.

In her jaunty going-home outfit courtesy of Aunt Hilary.

Saying goodbye to Dr Mike, who rotated out of the NICU two days before our release.

Loving her newest blanket knit by "Becca"

Sleeping on the ride home.