Welcome back

After a couple months off, I've decided to start up the blog again. We've had some interesting weeks and today we got some more interesting news. So....here's our update:

Alex:
Toilet trained (finally!!), loves his sisters sooo much, and all around good little guy. He's moved up to the big kid preschool and is doing well. He rode in his charity Trick-a-thon today (benefiting St. Jude). We raised $175 - thank you all so much for contributing. It was a very cute little event at a nearby park. The little kiddos even got a police escort to and from preschool.

(Police escort for Trike-a-Thon)

(Swimming lesson)
Evelyn:
Generally she's doing okay. At her 4 month well baby visit her doctor was concerned about the growth of her head. He sent her for an ultrasound to rule out hydrocephalus. The good news is that she doesn't have hydrocephalus. The bad news is that she does have fluid build-up - it's just on top of her brain instead of inside her brain. It's called extra-axial fluid. It could be a normal variant or it could be abnormal. We'll be trying to get in for an MRI soon to find out. If it is abnormal it would mean that she'd need a shunt to drain the fluid. From there we just hope the extra fluid has not caused any pressure on the brain leading to damage.

She also had a developmental evaluation and is delayed beyond her 8 week prematurity. The therapists were concerned about a general lack of strength and about her very much preferring to look to the left. She'll begin receiving physical therapy weekly as soon as all the paperwork goes through.

She's a big girl (12 lbs 2 ounces) and likes to smile and coo a lot.

Clara:
Also doing generally okay. We had a set back in February when Alex brought a respiratory virus home from preschool. Both girls got sick, but Clara got sick enough that she had to be readmitted to the hospital. She stayed there for 4 days until she was stable enough to send home. Her oxygen needs were increased quite a bit to help her recover (1/2 liter - up from 1/8 liter). She's now on 1/16 liter. Her pulmonologist thinks she'll be on daytime oxygen through the summer and nighttime oxygen until the end of the year. Medically, I know this is not a huge deal. As a mother, however, it's heartbreaking.

She also had a brain ultrasound to follow-up on the enlargement of her ventricles. She also has extra-axial fluid although not quite a much as Evelyn so there is no planned follow up.

Also like Evelyn, she's qualifying for physical therapy weekly. She's a little scrapper - 9 lbs 15 ounces as of last Monday. She also is a big fan of cooing and smiling.

Greg and me:
We're doing okay. This latest round of developmental delay and brain issues is just about enough to make us crack. We feel like we've been pretty good sports, but are simply exhausted by what feels like a constant barrage of bad news. We're ready to get some good news and start enjoying this family of ours.

In terms of caretaking twins, our transition has been easier that we thought. The girls are generally sweet and pretty predicable. We feel like we have the day to day management under control. I quit my job so I can stay home and deal with some of the medical issues. It's been a little weird not going into work every day, but I'm adjusting to my new role as house coordinator. I've got spreadsheets (color-coded, thank you very much) and a good schedule down. We're still pretty busy, though, so please please please forgive us if we do things like send Thank You notes out several weeks late.

I'm going to vent a little too...please don't say things like, "Oh, well Clara was only in the hospital for 4 days" or anything else that belittles our experience or our sadness. It drives us a little crazy. We can handle a lot, but we are a little extra special sensitive these days.

That's it for now. I'll post more when we've got more answers about Evelyn's brain.

Take care,
Kris

p.s. send out good thoughts and prayers to my friend's new baby Nate. He's getting a rough start and he, his mom, and his dad deserve some good vibes.