A special note

I know I said my last post was the end of this blog. I just heard some sad news though and wanted to post some of my favorite song lyrics as a special goodbye letter to an amazing woman.

All I can hope for is a light to see
When I search in the dark for my soul
And when my soul comes to rescue me
I rest my resistance
Fall piece by piece into peace
And slip like the water
Back into the sea.

Okay, now for real, TFH is closed.

One year well child

The babies had their one year visit with the doctor this morning. First of all, as second time parents, we completely downplayed the colds they have. They both have double ear infections. That's four infected ears if you are keeping count. I think the first time around you get so scared about every little cough and fever. After you've had a child and been sent home after being told your kid has a viral infection and to just let it run its course, you kind of start ignoring the middle step of taking your kid to the doctor. I usually assume things are viral and as long as it doesn't seem serious (e.g. Clara's re-hospitalization last February), we just kind of leave the doctor's office out of the loop. We also happen to have exceptionally happy babies and although they've been a little out of sorts and cranky, they haven't been behaving badly enough that we would have thought they were in that much discomfort. Anyway, antibiotics will begin today.

Onto statistics:
Evelyn is 30th in weight, 60th in height, and still >90th in head. She actually lost weight again - this time we're assuming it's because she's been sick. Her head is still large (obviously), but we have now had three data points where we've seen a regular growth curve. So, although it's huge, it's no longer growing outside a regular trajectory. That was the first indication of concern before. The problem wasn't that her head was big (hello, have you met Big Head Greg) but that it had been regular sized and then got big. It went outside the regular growth curve.

Clara is 3rd in weight, 45th in height, and 75th in head. She's still a tiny little girl, but doc denied the need to start fattening her up. We talked a bit about her head. I think she still has a preemie shaped head (long and thin) and doc agreed. He's hoping that as she starts walking it will round itself out. He said even if it were craniosynostosis (premature skull suture closing that leads to a funky shaped head and other issues I'm not in the mood to go into) we wouldn't really do anything about it anyway. Since she is otherwise symptom free, we just watch.

He felt both their head and said their fontanels were nice and soft (compared to bulging and hard as Evelyn's has been in the past). We got approval to move them to cow's milk which is a ridiculously huuuuuuge saving for us every month. We also talked about their sensitive skin (continue and increase hydrocortisone as needed) and night waking. They aren't wanting milk in the middle of the night, but they do usually wake up 1-2 times at night. It may not sound like a big deal, but neither Greg nor I have gotten a full night's sleep in a year - so, you know, it kind of is a big deal. I often have a difficult time getting back to sleep and am anxious for them to knock it off and stay asleep. With a single baby, the solution would be fairly obvious. You would just let them cry it out. With two babies, though, it's trickier because they will eventually wake the other one up with their screaming. Doc suggested placing 10 pacifiers around the crib so they can reach out and find one when they wake up. We'll give that a shot.

They also passed their lead and anemia tests. Who-hoo!

In other developmental news, Clara has now on several occasions taken a step. She's never strung more than one step together to be considered walking, but she's so close. You can see it in her eyes that she wants to walk. She just needs to get past being a little scared. Evelyn isn't quite ready yet and isn't making those same connections. She's also got more trunk weakness than Clara which usually puts her a month or so behind. I'm still hoping they'll both beat Alex's first steps. He waited until he was 14 months. I know Clara will beat him. Evelyn will be around the same time.

We've got Evelyn's first homecoming around the corner (Jan 21st) with Clara's following on February 1st. I'm planning to get them each a little cake and a present so they can celebrate their own day. Before I went on maternity leave I was talking to a women at work who is a twin. She and her brother aren't particularly close and she said having a twin always just meant to her that she had to share her birthday with someone. It was more of an annoyance than anything. Certainly I hope the girls will be close (not creepy twin language close), but the homecoming days give them a chance to be celebrated as individuals as well.

And, with that, take care. Assuming no new medical news, I'm calling Third Floor Home closed. Thanks for following the journey of my sweet little momo twins.

Bald spots

There are lots of things I know how to do. Unfortunately, using an electric razor to cut my son's hair is not one of them. I'm scared to "fix" the problem in fear it will result in complete baldness.

It looks okay from about 8 feet away....

Also, today I've got two people who need good thoughts and prayers. Freezerbuns - who is getting ready to be the mother of twins today and Vote for Anderson's grandma (one seriously kind-hearted, determined lady) who's battling some major complications in the hospital.

Take care,
Kris

1st Birthday!

It's hard to believe, but those baby girls turned 1 on Saturday. What a year!

A year ago, weighing a combined 7 lbs 3 ounces, born 8 weeks and 1 day early, and with pages and pages of health concerns and diagnoses, they looked like this:

Now, weighing a combined 38 lbs, catching up developmentally, and physically healthy, they look like this:

One more thing - my last post had a typo. Alex is 50th percentile in weight, not 5th.

Take care,

Kris

Well child visit

Alex had his 4 year well child visit yesterday. The girls tagged along to get their second dose of synagis. 2 hours later....we finally got out of the doctor's office.

Highlights: 1) Alex is 5th percentile in weight and 25th in height, 2) His belly is still distended. Not sure why. No suggestions were given to us except trying to give him more fruit, 3) We got some toileting tips for nighttime. Apparently most kids are completely dry by now. Who knew?? 4) Clara and Evelyn are back down to a 3 lb weight difference - Clara is 17 lbs, 3 ounces and Evelyn is 20 lbs, 4 ounces. I think Evelyn lost some weight with her increased mobility. Greg thinks the last reading was inaccurately high. I guess it doesn't really matter.

That's it. Not a very exciting visit.

4 year old transitions

I have a Masters degree. Yet I have conversations with statements like this, "Big boys don't poop on the floor. The next time you poop on the floor, I am taking all of your swords away and throwing them in the trash...forever."

He's been acting out a bit this week (as should be obvious by the aforementioned 'poop on the floor' incident). Greg and I are trying to remain patient and realize that he's had a big week - he changed schools and misses his friends, teachers, and routines very much. We're hoping things will smooth out pretty soon. He's behaving fine at his new school and only seems to be taking it out on us. Yay us!

Cruising, clapping, pointing, playing

Both girls are inefficiently, clumsily, and grudgingly cruising. They are not happy about it or good at it, but they are working it out and getting it done thanks to their therapist who is much pushier than I am. I tend to fold as soon as they start crying. They are also very sneaky with both me and the therapist. They have these long spider monkey arms and they can stretch and reach at least 4 inches further than you think they can. They like to stretch as far out as possible to reach for something to avoid cruising.

Clara is also a big fan of clapping and she enjoys the fun game of "Where's Mama's nose?" Evelyn is abstaining at this time from game playing. But both she and Clara like to dance. Especially when you sing "Wiggle it" by 2 in a Room to them.

Evelyn is finally crawling a regular crawl. She first did a bunch of dragging I referred to (in a totally non-politically correct way) her "zombie stroke" crawl. Then she would kind of crawl but with her right foot trying to stand during the crawl. It's hard to explain. Anyway, she's finally crawling for real now.

Both girls just started to point (Yay! Score one against ASD). They mostly point at Alex because he is clearly the funniest thing in the house. Greg and I don't even come close to making the babies laugh as hard as he does. He's also really started to play with the babies and he and Clara are even starting to fight over toys. So, we're dealing with two main fighting groups - Evelyn vs. Clara and Alex vs. Clara. You'll note that Clara is involved in both groups. She's a little stinker. She's super curious and adventurous and loves to push limits and steal. Evelyn is pretty good about not stealing toys but, man, she's a big bully. Clara is full of scratches. Evelyn uses brute force to get what she wants - she scratches, pulls, and pushes to get what she needs.

I think that's it. I'm kind of tired of blogging so I may do one or two more and then call it quits after their birthday next weekend. I really, really hope I don't have need to start up again. I hope the girls just continue to catch up developmentally. I hope Clara's lungs continue to heal and stay strong. I hope the fluid on Evelyn's brain absorbs. I hope they equal out in size. I hope we can live our lives crisis-free for many, many years to come. We're exhausted. I need a freaking nap.

Take care,
Kris

New technology

Last night I ordered a pint of cookie dough ice cream delivered to my door. I placed the order through my Tivo. Scary, right? 14 years ago I was trying to figure out how to dial into the internet to check if anyone had sent me one of those new fangled emaily things. And now I'm ordering ice cream through my TV.

The Mom Salon reminder

Lexie and I are so excited and thankful to everyone who has donated money to the Mom Salon. If you are interested in adding to the pool of donations, please contact me at khightshoe@gmail.com by 11/20.

Thanks so much!
Kristina

Five pounds

I took the babies in for the first of their 5 Synagis shots. Synagis is a medication that helps lessen the severity of RSV, should they contract it this year. The shots weren't particularly notable, but their weight difference was. Evelyn is 21 1/2 lbs and Clara is 16 1/2 lbs. That's a 5 lb difference. We know Clara burns more calories because she works so much harder to breathe. Now I'm guessing she also burns a lot more because she's so much more mobile - crawling around everywhere. But, man, 5 lbs?? The doctor doesn't seem to care so I guess I shouldn't freak out. My other issue is that it means it's going to be a looooong time before she gets to 20 lbs - the magical weight we can move her to a front facing car seat.

Oh, and the doctor said their heads looked better than they did two months ago. He said they were holding them up better.

TTTS - 5K Race for Hope

We walked in the Fetal Hope 5K this weekend. I was pretty thankful there weren't a lot of people speaking about TTTS or other fetal issues. I'm just not ready to cry in public over my hot mess of a shared placenta. They did say that more babies die every year from TTTS than from SIDS. Crazy.

Anyway, there were tons of double strollers and it felt good to be with my people. No one asked if they were twins. No one told me that I must have my hands full. No one accosted me, asked to take a photo, or otherwise bothered us. Nope... the only question we got was, "How old are your twins?" It was such a nice change of pace to not be the freak family.

And then today I dared the aquarium where I was asked (3 times), "Are they twins?" and I even got a, "You must have your hands full!"

Back to reality I guess.

One year

A year ago today I moved into the hospital. It feels like a really, really long time ago. I can't believe it even happened to me- it feels so out of body. Although right now I have a friend in the hospital and reading her blog is too familiar so maybe it does still feel a little like it happened to me. All the information about accelerations, decelerations, long monitoring sessions, inadequate nursing, babies going off the monitors, growth checks, BPPs, etc... it's a crappy club to be a part of and no one should have to live it. No one should have to fear for their babies that much.

I also think sometimes about the one women I was in the hospital with who had the cerclage. A few years ago she had an ectopic pregnancy and lost one of her tubes. She got pregnant again though a lot of fertility treatments. Her cervix was measuring so small that she was on bed rest at home at 16 weeks. At 24 weeks she was moved into the hospital. At one point, her cervix measured 4 mm (as a reference, mine was usually 4-5 cms). Her wheelchair and floating privileges were taken away and she was only allow to sit up in bed minimally. I last visited her at 32 weeks after she had been there for 8 weeks. She was like a caged animal. It's completely unnatural to live your life like that. So, yeah, I'm glad I was there. I believe it saved their lives. I believe Clara would have died if I weren't being monitored. But, man, I can't believe I woke up and lived every day with such a heightened sense of urgency and anxiety. I'm glad this year is over and everyone is doing okay.

On to other news... we're working on day 6 of Alex sleeping at night with no diaper. So far, no accidents that we can tell. Hurray!

Take care,
Kris

Updated photos

Evelyn, Clara

Clara, Evelyn - they have the same hair whorl thing off to the bottom left

Evelyn and her little nose crinkle

Clara

Evelyn (front), Clara (back)

Evelyn (L) and Clara (R) at the Museum of Nature and Science

Clara (L) and Evelyn in their first big girl bath

Clara (L), Alex and Evelyn

Halloween - Evelyn is the bee, Clara is the ladybug

Buzz Lightyear

Evelyn eating Cheerios

Clara eating Cheerios

Alex doing a back float at his swimming lesson

Alex in a hay maze

The family at the pumpking patch - Clara is in Greg's lap, Evelyn is in mine

The Mom Salon - December 7th

Lexie (floater friend) and I are organizing a day of salon services for the patients on the Perinatal Unit at Rose Medical Center. We will provide manicures and pedicures, hair cuts, massages, and gift bags. If you are interested in donating money for the event, please email me for more information - khightshoe@gmail.com. We are accepting donations until November 20th.

Thanks!

Kristina

Celebrity Copycats

Now Charlie Sheen and his wife are having twins. All these celebrities are such copycats.

Moving on...Greg took Clara to her pulmonology appointment today. She looks good. Her pulse oximeter reading was 98% (who-hoo!!) and her weight gain looked good. She's still got this thing happening that I don't really know how to explain. When she inhales the area below her neck draws in pretty deeply. It's a sign that she still struggles a little with her breathing. Not a big deal, but it's still happening.

He said the frequency of her wheezing episodes was kind of borderline. We have a couple choices - we can do nothing or we can start a daily asthma medication administered through an inhaler type thing. The nebulizer is a joke when talking about a baby. You may as well be trying to put pantyhose on a tiger. Anyway, to help us make the decision he wants us to keep a little diary of her wheezing to make sure it really is only occurring a couple times a week. If it's occurring more frequently, we'll likely medicate.

He was also supportive of the decision to keep her out of child care until the end of this cold and flu season.

I think that's it. Like I said, Greg went to the appointment, so I'm not sure of all the details.

Take care,
Kris

6 month review

The babies had their review with their therapy service providers today. They met the whopping two goals we set 6 months ago - not hard to do as the goals weren't particularly lofty. I think one was more neck strength and the other was not overly favoring one side or the other. Check and check for both girls. We set a new set of goals for the next several months for gross motor (cruising), fine motor (more difficult manipulations), play (cause and effect, initiation, movement beyond parallel play), and speech (a few words). Things are looking really good. The girls are progressing nicely and, at this point, there doesn't seem to be much talk about a need for occupational therapy. My service coordinator said speech therapy could be an option if we had concerns, but she didn't think there would be a strong need. Our PT stuck around a little longer than everyone else and chimed in as well. She thinks that once the girls get up and start walking, the need for therapy would just be one of maintenance. She was hopeful we could discontinue therapy prior to age 3.

As a point of reference, we had Alex in therapy until he was three. He received weekly therapy for speech delays and occupational therapy. He had gross and fine motor therapy for a shorter period of time - maybe 2-3 months or so. Alex didn't sit up unsupported until 8 months. He crawled at 10 1/2. Walked at 14. Spoke his first word ("more") at 18 months. He had sensory issues making basic care taking difficult - he hated water, hated having his face and hair washed. He had food texture issues that greatly limited his diet and caused all sorts of fun digestive issues. He screamed bloody murder at the mere thought of a diaper change. The pressure from strapping him into his car seat led to more roadside fights than I care to admit. He's come a loooong way. Meeting him now I think elements of this might still be visible, but he's a tremendous little guy who navigates the world just like any other 4 year old. Greg and I are extremely proud of him and, honestly, of ourselves for forcing issues with him. We committed to the therapies and worked really, really hard to work beyond the problems. He was a tough baby, but who he is now is totally worth all the work. He's a funny little man and so full of energy and excitement. I can't say that I look back at his early temperament fondly, but I love who he has become. And I really can't imagine a better older sibling. That kid loves his sisters so much. He's so eager to help bathe them, change them, and feed them. He's constantly kissing them and he loves to make them laugh. He is a really good older brother and a great kid.

Anyway, we are believers in early intervention. The funny thing is that having a child with developmental delays sets your barometer off a little. I don't really see the girls as delayed because they are at or earlier in pace than Alex. Their gross motor looks pretty similar to his. Their fine motor looks better. Their speech certainly looks better. They imitate more. They are more playful and more social. So when the therapy service coordinator is asking me very earnest questions about where I want them to be in 6 months, it's hard to not laugh. They are so much further than I ever expected and further than my only other experience. My answer is that I want them to keep doing what they are doing.

So, here's a list of all their fabulous accomplishments. Not a single one is taken for granted:

• Clara is crawling. Evelyn is maybe two weeks away from crawling. Probably more like a week.
• Both girls pull themselves into a sit and sit completely unsupported.
• Both girls pincher grasp their food.
• Both girls are full of babbling: da-da-da, ba-ba-ba, ya-ya-ya.
• Both girls are incredibly social - especially loving peek-a-boo, songs being sung to them, and anything Alex does in front of them.
• Both girls bang toys together.
• Both girls can stand for long periods of time either supported in front or back.
• Clara takes a few wild steps at a time if you hold her fingers and hands up above her head.
• Both girls are imitating a few gestures and sounds.
• They don't like having toys taken away.
• They turn at the sound of their names.
• Clara follows me out of the room everytime I leave. I think Evelyn would too if she could crawl. She mostly just looks at me like I've stabbed her in the heart everytime I leave.

We're pretty excited and are hopeful that things will just keep progressing. Greg is taking Clara in tomorrow for a pulmonology appointment. Hopefully all goes well there. She's been wheezing a bit, which I believe is an early asthma symptom. Not surprising given her history.

Take care,

Kris

Election '08

I took the kids on a walk yesterday and we passed a house with a bunch of Obama signs. Here's the conversation that followed:

Me: Can you say Obama?
Alex: Obama
Me: Hopefully Obama will be our next president.
Alex: Oh....Can you say Spiderman?

You really can't beat the thought process of a 4 year old.

Take care,
Kris

What happened to my body?

Having a baby, or two or three, wrecks your body. Carrying twins does all sorts of terrible pulling and stretching and wrinkling things to your body. Having a high risk pregnancy, living in a hospital, and caring for special needs babies sucks the life and color from your skin. You turn gray. Your skin gets dry. You see more wrinkles in 1 year than you have in the previous 31.

I was looking at my ravaged body and assessing the damage. I have thought recently about getting some sort of surgical intervention to repair my stomach. No amount of dieting or exercising can fix what having twins did to my stomach. My weight and pant size will never again align in a normal way. I even talked to my dad about all this. My dad. That's how much it's been bothering me. I made a decision today. To do nothing. Or, rather, to learn to love the changes in my body.

My body has become a passport. It's documented places I've been, things I've felt, and changes in my life. Who am I to try to alter the journey? I've earned every stretch mark, every piece of sagging skin, every wrinkle. Getting rid of them would be denying what has happened. So my decision is to let my body tell its story. Part of getting old is accepting that I have a story and what better way to go back and reread that story than to look at myself and celebrate all I've been through.

I was also thinking about this because Alex has recently started to freckle. As a child and teenager, I hated my freckles. I hated being called "dirty" and I hated looking different than every magazine and movie star I idolized (let's face it...not very many freckle faces out there). I don't want my kids to go through this - or at least I want to try to slow down the self-hatred. So, I've been really talking up his freckles. Having him count them with me. Celebrating them. Telling him every freckle is a kiss from the sun. Because, when you think about it, each freckle means I left my house. I was outside enjoying the world. Each freckle means I ate outside with my friends in high school, went skiing, went on walks with my husband, went to the beach, or went on a hike. They are part of my story and I've learned over the years to really love them.

So, yes, I've decided that my freckles will be joined by sagging, loose skin. And they will be joined by wrinkles. And lackluster skin. They are all coming together to tell my story and they are all part of aging gracefully and accepting where I've been.

Not that I'm about to walk around in a bikini to show off the new body. Not everyone wants to read my story :)

Take care,
Kris

New therapist

We saw the new therapist on Tuesday and I like her so much more than the last one because she actualyl listens to me. Anyway, we got lots of new exercises - helping to transition to a sit and stand (in various ways, depending on which girl I'm working with since they have different strengths and different ways of moving), practicing a side sit to build of core strength, and helping with crawling. What I also like about this new therapist is that she seems more flexible with the exercises. She said she wants to girls to master their next skills in the easiest way possible for them. From there, we work on them mastering the spectrum of movement. So, for example, Evelyn wants to pull up to a sit from her side. Clara is less traditional and wants to get to a sit from a crawl position. We hold weight down on Evelyn's thigh to get her to pull herself up and, for Clara, we get her on all fours and then tug on her hips to get her to scooch back into a sit. The therapist said that once they can do the movement, the other ways of getting there will come more naturally. Our old therapist would have had one way to do an exercise and made us force it.

Take care,
Kris

Brain Ultrasounds

The girls had their ultrasounds last week. No change. Clara's ventricles look the same and Evelyn's fluid looks the same. Certainly we were hoping for things to be improving, but staying the same is better than getting worse. As long as we're still looking at benign anomalies, we're happy.

We start PT with our new therapist tomorrow. I'm happy to get some new exercises as the girls have outgrown their last set.

And, finally, good luck to Jordy today.

Take care,
Kris