1/32

I keep forgetting to mention that Clara got the go-ahead to bump her daytime oxygen down to 1/32 liter. We'll test her at 1/32 nighttime oxygen in a couple weeks. The next step after that is room air during the day and then room air at night (SQUEEEEEEEEEEEEEE!!!!).

I'm sure this new found optimism on my part will mean something dark and troubling is around the corner. That's how we roll. In the meantime, I will try my hardest to keep up my happy thoughts.

In other, totally baby unrelated news, I got a lovely surprise Monday night. I'm in love with Craig Ferguson. He makes me oddly happy. My love for him is exceeded only by Ewan McGregor, for whom my love is unnatural and never ending (I can actually sense Greg rolling his eyes right now). So imagine my pure joy when Ewan McGregor was on the Late Late Show with Craig Ferguson. Check it out here. http://www.youtube.com/watch?v=OexuFE03hZk He talked about, among other things, the upcoming Long Way Down series - a follow up to Long Way Round, one of the most lovely things ever filmed. Also in the LLS was some guy doing an impression of Morrissey. Oh, wait, that was Morrissey?? Yikes!

Take care,
Kris

Navigating the world outside

This is what life looks like with a double stroller:

Personalities

I keep getting asked how the girls differ in personality. I've given kind of a vague response because, honestly, I haven't been able to distinguish. Finally this week Greg and I have been able to see some differences emerging. We've come up with this - Clara is very much like a little Golden Retriever. She's happy to see us, smiles easily and frequently, and just kind of wants to be our buddy. Evelyn is a cat. She requires us to impress her or else she will not smile. However, when she does smile and coo it's a much larger response. She's more even tempered, but when she does think we're funny, she thinks we're hilarious. Clara more just thinks everything is equally funny. So, there you go. We finally discovered some differences.

We had an exciting weekend. "Exciting" is, of course, relative when you have 3 kids. It's not like we went to a gallery opening and then sky diving or anything. I took Alex out Saturday for a mom and son day - swim lesson, breakfast, playing on the fake food at the mall. While we were at the fake food playground, I ran into a friend of Greg's from work (whose wife went through a similar experience with perinatal at Rose a couple years ago and provided a ton of support to us while I was inpatient). I also saw one of my MFMs playing with one of her twins on the fake bacon. It took me about 20 seconds to figure out where I knew her. It's weird to see your doctor out and about. I couldn't help but think, "What are you doing wearing cargo pants?? You're my doctor - put on some real pants!" But I guess she's also allowed to be a mom and wear cargo pants when she lets her kid play on the fake bacon. Today I ventured out to the aquarium with all 3 kids under the guise of giving Greg some time off. He spent it instead hustling around running a bunch of errands. His parents came by afterwards and hung out for a couple hours. So, yeah, "exciting" meant something very different pre-kids, but what are you gonna do? It's worth it.

I was also thinking how I never noticed twins around me until now. Suddenly this world is crawling with them. There is that incredibly disturbing MTV True Life: I'm an Identical Twin (note: do not watch this if identicals freak you out a little...as they do me...it will only confirm some of the weirdness). America's Next Top Marathon is on? Well, guess what? It's the season with twins. See your doctor out wearing cargo pants? Well, she's with one of her twins. Talking to a lady who works at Michael's or the lady at the Gap? They both have twin brothers. Some lady opens a door for you? She's got twin daughters. They're everywhere - books, TV, the mall, in restaurants. I swear I just never saw them before.

I'm also adjusting to being quite a spectacle in public. I think I always look a little dazed. I was reading in one of my twin books that you can spot a mom of multiples in the winter because she's the only one wearing short sleeves - she just sweats that much and is always that hot. Anyway, people are very curious about the girls and nearly everyone at least stares and most stop to talk to me. It's fine, I just didn't think about it happening so it's a little new to me. I'm used to walking about being fairly anonymous. But meeting new people and chatting and getting to share my little girls is pretty fun. All moms should get treated like their kids are fascinating.

I also never noticed how narrow the world is until I had to cart around two car seats. Mimi can attest to me struggling to get both girls through Stella's just to reach a table for a cup of tea. Aisles are narrow. Doors are narrow. Turns are too sharp to make with any grace when using the stroller. I have to use some strategy now and look ahead at least 20 feet before making a move.

It's a crazy life, but it's mine. And nothing, nothing, nothing beats it when I manage to make both girls laugh at the same time. Except for, maybe, Alex getting mad at red stop lights (because he likes it when I drive fast) and he yells, "I'm so mad at you red light!! Turn green!"

Take care,
Kris

Phew!

First thing's first....MRI results came back benign (yay!!).

We went to Children's Hospital yesterday for an "urgent" MRI. We went into Radiology to get ready for the MRI. There was an nurse there who tried her absolute hardest to keep Evelyn still to avoid anesthesia. No luck. Evelyn was insisting on moving. As we were waiting for the anesthesiologist, Lexie's partner Becky (who happens to work in Radiology) came by to say hi. I honestly can't even put into words how comforting it was to see a familiar face. It also reaffirms my belief that Lexie and I shared that crappy perinatal experience because we were meant to be in each other's lives. So, we finally get Evelyn into the machine around 1:00. Two things - 1) MRI's are really, really, really loud. I had no idea and 2) We weren't allowed to be there for the anesthesia which, in retrospect, was a good thing. I'm not sure I could take seeing her go under. They gave us this little pager thing like you'd get in a restaurant and said they'd page us when she was out of recovery. We got a quick bite and went back to the waiting room. Becky came out and brought us back. She was able to get information from the radiologist so we knew right way that it was good news (again, I can't explain how wonderful it was to have Becky there - we owe her a night of free beer).


Because Evelyn is so young gestationally, we had to stay for a 24-hour observation period to make sure she didn't have any side effects from the anesthesia. Mostly they were looking for apnea...more on that later. We got sent up to another more general department to get our room for the night. After some basic check-in stuff, Greg and Clara left to go pick up Alex and go home while I settled in with Evelyn. So, the radiology department was absolutely fantastic. Every person we encountered there was kind, compassionate, and went out of their way to help us. The folks on the more general medicine floor, however, appeared to be organized by a bunch of monkeys. We've been very lucky that since November we've had excellent nursing and other medical staff care. It's amazing how lucky we got with all our nursing care. Nurses are so important to your experience in a hospital - much more so than the doctors because you really build a relationship with your nurse. You look to your doctor for information and news, but you look to your nurse for support and advocacy. We've been so pleased. Now, that being said, last night was an exception. We've only had a problem with 3 of our providers: 1) weird affect nurse lady who asks questions, completely ignores the response, and then looks at you like you're crazy, 2) dangerous nurse lady who walks around the NICU wreaking havoc on tiny little babies fighting for their lives, and 3) dumb as rocks nurse lady we got during the night shift last night. Just a taste...she comes in during the night to check on Evelyn. She has the door wide open to let in light, she opens the bathroom door to get more light, she then shines a flashlight in her face. Evelyn (unsurprisingly) wakes up. Nurse Dumb-as-Rocks says, "Oh she's awake. She must be hungry." And she does this TWICE! Greg suggested I find where she lives, shine a flashlight in her face, and when she wakes up say, "Are you hungry?" Anyway, I have lots more dumb nurse stories to tell but I'll stop there.

Okay, moving on....they had Evelyn hooked up to a crappy pulse oximeter that was making her look like she was desat-ing. Once they finally figured out the issue (at 4:00 am), they got her hooked up to a better one that also monitored her respirations. My question is - why wasn't that always hooked up to her since we were there to monitor for apnea?? Stupid monkey department.


Venting done. The really great news was that the fluid is benign. I'll quote from the report:
- No signal abnormality within the brain
- The brain appears normally formed
- No malformation of cortical development is seen
- Ventricular size is normal
- Myelination is appropriate for age
... and so on leading up to:
- Findings are consistent with benign extra-axial spaces at infancy.

She does have two small sub-dural hematomas most likely due to stretching of bridging veins. She also has a funny shaped head ala the alien from Alien due to prematurity.

This is nothing new to us. She and Clara have always had heads shaped like this. They're actually getting quite a bit better.

So now we just watch her head and follow-up as needed. Here's a picture of her brain:

All that white stuff around the brain is fluid. It looks like a lot to me, especially compared to a normal brain (below) but I'll take their word for it. Note:this picture is a different type of imaging. The only thing to really focus on is how much closer the brain is to the skull than Evelyn's is.

I guess the brain with either absorb the fluid or it'll eventually grow into the skull.

I have to say that the last 5 days have been incredibly hard, but I recognize the relative nature of this type of scare. It's hard not to after staying the night at Children's and seeing 4 year old cancer-stricken kids walking around. My issues are harder than, say, someone who's worried about constipation, but they are nowhere near as difficult as what some other parents go through. And to see the little ones really just fighting to stay alive is empowering and terrifying at the same time. My heart goes out to those families. I cannot imagine seeing any of my children go through that. It really is something very abstract until you have children and your entire life's purpose completely shifts. All you want in the world is for your baby to be okay. I couldn't shake the feeling last night that somewhere in that hospital some mother was saying goodbye to her little baby.

One more thing - the local Harley Davidson chapter came by the hospital yesterday to provide free pizza to all the families and I know it sounds weird but it just brought me to tears because it was so incredibly kind. They were so sweet and had such kindness in their eyes.

So now let's hope that Greg and I are done with these scares. I have never fallen apart into such a complete mess the way I have been since last week. I really felt like it was too much to handle. I feel like everything leading up to this has been hard, but I've maintained a sense of humor throughout the sadness. This one felt like a punch in gut and I'm so relieved to hear the word "benign" and I am so happy it came from someone I know (Becky) and I will always associate her with one of my happiest memories. So, thank you Becky.

Take care,

Kris

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.