Wednesday, September 30, 2009

Crappy Lungs

Sunday afternoon (Holland's looking good!):

Sunday evening (Eden was really sick here, but you wouldn't know it):

Monday included a trip to the pediatrician's office, mostly for Eden. I decided to have Holland seen too, at the last minute, because she had just started coughing early that morning. Eden had diffuse crackling throughout her lungs. "Sounds more like bronchitis than pneumonia because there is no focal point." Holland had some mild wheezing and a few crackles, but they cleared right up with a breathing treatment. Both girls were satting above 96 and were in pretty good spirits. We left with instructions to continue albuterol treatments every four hours with Eden, and every 4-6 hours with Holland, as well as a prescription for oral steroids for Eden if she wasn't sounding better by that evening. We never ended up giving E the steroids because she seemed to be doing pretty well by bedtime.

Tuesday morning (simultaneous breathing treatments, always so pitiful):

Both girls got treatments every 4 hours Monday night (John gave the 1am treatment, and I gave the 5am treatment), then they had another treatment around 9:30am on Tuesday morning. After that, Eden seemed to be doing pretty well and we started spacing out the time between her treatments. On the other hand, Holland started deteriorating and was needing treatments every 2 hours throughout the day.

I finally bit the bullet, and after dinner I packed our bags preparing for a stay and we headed out to the ER. She was satting 89 when we got here, and we predictably ended up admitted. Things got worse as the night progressed and she is now at 3 liters of oxygen, still only satting 93-94 when awake, and 89-92 when asleep.

Tuesday night (in the ER):

The ER pedi was calling it pneumonia, but we've had two more opinions since then. They say that every chest xray shows some areas of collapse in her lungs when she is sick. Even her one healthy xray isn't completely normal. The hazy parts of the xray (where there is some collapse) could be a breeding ground for bacteria, so they are treating with antibiotics to be "safe."

She has not had a fever, so they are not suspecting flu, RSV, or Strep (which a few people in my family have right now). She just has a virus. You know, the common cold.

And crappy, crappy lungs.

Wednesday morning (already asking "Can I go home yet?":

Sunday, September 27, 2009

Four-Eyed Family





We picked up Eden's new glasses on Friday. I personally think she looks *stunning* in them.

We've been having a lazy weekend at home because both girls are now sick (especially Eden) with stuffy noses and coughs. We had to miss our nephews Malachi and Justin's birthday parties and we had to start up the breathing treatments yesterday. I'm really hoping that they are better enough tomorrow to make it to school and NOT to the doctor. Get better quick girlies!

I'm pretty sure it's not H1N1 because they don't have fevers, but I am exceptionally anxious (maybe even irrationally so) about catching it and have been really stressing myself out over it. The girls had their seasonal flu shots on Friday (before we knew they were sick), and I've asked a couple of docs whether we should pursue the H1N1 shot when it's available. They are definitely recommending it, so we will most likely get it around the end of October.

Sunday, September 20, 2009

Eyes, Eyes, Eyes

I've been meaning to do an update about Holland's eyes. Probably a good thing I waited, because now I need to update on Eden's eyes as well!

Less than a month after Holland's last eye muscle surgery we started noticing that her left eye seemed like it was turning out instead of in. After totally obsessing and over-analyzing it for a couple of days I called her opthamologist office and asked what we should do. She told me to start patching her again for two hours a day and to bring her in for an earlier appointment two days later.

I kind of freaked out a little after that appointment, because not only did the doc confirm that the left eye was turning out, but also that Holland was not using her left eye well, and definitely not seeing as well with both eyes. We went from her "reading" the pictures on the chart at about 20/40 down to 20/70, maybe less.

The doc did think that Holland was able to pull the eye in, and feels that we should be able to correct the problem with a new prescription and more patching, rather than needing another surgery. So, that's what we're doing...again. For those that know about such things (and for my own future reference), her prescription is now at -3.75 sph +1.75 clyl. 100 axis in her right eye, and -10.00 sph +1.75 clyl. 076 axis in her left eye. The first negative number is the degree of nearsightedness and the next two numbers have to do with astigmatism. That -10.00 kinda hurt. Even though I knew it was coming, I wasn't looking forward double digits.

Also not so happy about more patching. I was so hopeful that after the surgery we would be done with that forever.

On the bright side... We had an appointment this week and she is back to 20/40 on the chart and is using both eyes equally well again. I am still noticing the turn-out with her left eye, but she was able to track pretty well with it for the doctor. We're going to continue patching for a month and see where things are then.

Eden had an eye doctor appointment this week as well. It was her first appointment in a year, and we had a good idea going into it that she would probably need glasses this year. She goes to all of Holland's appointments with us, so she knows the drill and was really looking forward to picking out her own frames. She did an excellent job "reading" the chart for the first time and she was proud of herself. Her first prescription is -2.00 sph in the right eye, and -2.25 sph in the left eye. We had a pair of purple frames with pink temple bars picked out from previous visits (I really loved them), but Eden saw a new all-pink pair when we got there, and quickly had her heart set on them.

They should be ready in about a week, but until then, here is a preview of her wearing Holland's old pink frames.

I know that she looks super-cute, and in the grand scheme of things it's not a big deal at all, but I still kinda wish that we didn't have something else to worry about keeping on her head, in one piece, unbroken and functioning properly.

And just to make the whole eye issue a little more complicated...our wonderful eye doctor, who has seen the girls since they were in the NICU and whose opinion I really value and trust, is retiring in November. Boooo. This really bums me out. It's so hard to find good doctors who take adequate time to get to know you, value your input as parents, and are really, really sharp at what they do. We are really sad to lose another one of the best.

But, not to end on a bad note. I am so grateful that both of my girls can see, hear, talk, smile, laugh, love, and learn. They continue to amaze me everyday.

Thursday, September 10, 2009

Monday, September 07, 2009

All Good Things Must End







Our summer has come to an end. As usual, I didn't accomplish many of the things that I had set out to do this year. I didn't get rid of our broken hot tub. I didn't get my new counter tops. I didn't get the ceiling painted in the family room. I didn't hire someone to help clean my house.

But I did accomplish some major things. Holland had her eye surgery (questioning now if that was a good decision...more on that later). Three appointments later, and Eden has a new pair of pink DAFO's with rainbow straps. Eden's new pink Rifton Gait Trainer was delivered and we started practicing with it. I got Holland enrolled in Hippotherapy and she got to do six sessions with Eden this summer. The girls went to a week of day camp at the Center of Exceptional Families. John and I took a trip alone to Traverse City for our anniversary (11 years!). We went camping! I helped my siblings and parents out and hosted a massive garage sale at my house (together we made over a thousand dollars!). Eden gained THREE pounds in three months!

Best of all, I really, really enjoyed spending time with my girls. It was our best summer together so far. The hard things were a little easier, I had my routine down a little better, and it wasn't quite so hard to manage all of the appointments with both girls on my own. Holland and Eden are getting so much better at playing nicely together and entertaining themselves for longer periods of time, so it was a little easier to shower and get things done around the house. We talked a lot, played a lot, stayed remarkably healthy, and had generally a really great time together.

I'm not looking forward to going back to work tomorrow. But I'm sure I'll be okay...once I can get back into the swing of things.

Thursday, August 20, 2009

Camping

My family camped a lot when we were kids, and some of my best childhood memories are from our camping trips to Ludington State Park. John and I camped quite a bit before we had kids as well, and we always enjoyed it. I know it's not for everyone, but it's for me. I just love the laid back feeling of it all. I love the smell of the outdoors, campfires, tents and sleeping bags. I love eating meals cooked over the fire or cooked in a single skillet on the little propane stove. I love s'mores, dough boys, and pies cooked over the fire. I love going a few days without a shower and not worrying about who cares! I even love brushing my teeth out of a plastic water jug and squatting in the brush to pee. Love it!

Holland and Eden mentioned that they wanted to go camping for their 5th birthday not long after our big trip to Disney World last year. It was an idea that stuck in my head. After a year with Eden's power wheelchair, I just knew that it was time! The wheelchair didn't necessarily make this trip possible, but it certainly made it more fun and a hecka lot more convenient. She was able to get around on her own, and spent a lot of time rolling around the campground with Holland on her bike. I love the joy and independence that the powerchair gives Eden and wouldn't want to imagine life without it at this point. She is an amazing driver and people stop us to comment on how awesome she is:)

(As an aside, I should mention that Eden's chair got a makeover for her 5th birthday. We took off the old, worn out princess stickers, and put on some new Hannah Montana ones. She is so proud.)

So we loaded up our gear...our new two room cabin tent, power chair, fishing poles, and all, and headed out for our first camping trip. We didn't venture too far from home (a 30 minute drive, just in case). But we got to do everything on our agenda. We went to the beach, rented a canoe, fished, and biked. Our trip was going to be 4 days, 3 nights, but we actually extended it an extra night since we had such nice weather and were having so much fun!

The girls loooooved it. Just when we finished setting up our tent Holland said to me, "mom, thank you sooo much for bringing us here!" At the end of the trip the consensus was that we ALL love camping and will definitely do it again at least once every summer!

Monday, August 17, 2009

Conversations in the Dressing Room

"Mommy, you look beautiful. You should get that dress and wear it for Christmas!"

"Awww. That is SO CUTE!"

"WOW! Fancy!"

"I'm going to be little mom and you can be big mom. Hi Big Mom."

"Hey big mom. You should try this on!"

"Can I see your panties?"

"Mom, I like your boobs. When I grow up I want to have BIG boobs. Just like you."

Sometimes I wonder what people outside of the dressing room might think! Funny, funny girls.


Monday, August 10, 2009

My Five-Year-Olds



I honestly and truly cannot believe that five years have passed since Holland and Eden made their dramatic entrance into this world. In some ways these years seem to have flown by so fast, and in other ways they have dragged on and on. In the month leading up to their birthday I felt a lot of those old feelings of sadness and guilt creeping back into my head. They were less this year, for sure, but still there below the surface. Each year I relive the moments leading up to their birth. I remember very specific details of things I did, even what I ate, on the day that I went into labor. I vividly remember sights, sounds, and smells while I laid in that hospital bed drugged out of my mind, trying to keep my babies inside my body. I remember every detail of their birth.

One memory that sticks with me, and can still bring me to tears, is the memory of a single tear that slid down my husband's cheek as he looked into my eyes, when we heard that first faint squeaking cry and wondered how in the world we were going to survive what lay ahead. And even then, in that time of great fear, we had no idea how much our lives were about to change.

Five years later these children of mine bring me so much joy. I feel relieved that we have made it past some of those earliest struggles, when we still weren't sure they would be okay. Certainly there are struggles that still lay ahead, but at least we have gotten to know them, love them, and accept them for the little people they are. We know their strengths and their quirks, and we love them all the more for them. Those strengths and quirks are what make them who they are.

Holland is a unique and interesting little gal. She loves books and movies, or stories of any kind. She pays keen attention to detail, noticing and remembering the most unusual things. The other day I mentioned needing to run some errands. She asked me what an "errand" is. I gave her a basic definition, and John reminded her of the Dr. Suess story "What Was I Scared Of?" when the character in the story came out of the Brickel bush to run an errand...to get some Grin-Itch Spinach. Twenty minutes later, after sitting in the car while we went to pick up supplies for their bday, Holland chimes up, "No Dad...he didn't come out of the Brickel bush to get the Grin-Itch Spinach. He needed to Pick a Peck of Snide!" How in the world did she remember that!? We had only read that story three times total, and at least a couple of weeks before this conversation. And she really doesn't even know what a peck of snide IS!


Holland definitely marches to the beat of her own drummer and doesn't let societal norms dictate her tastes. She continues to love Spiderman, Cars, and most importantly TRAINS more than anything else. She knows all of the Thomas the Tank Engine characters and can spend hours building tracks and playing with her Thomas train sets. She also loves to dress up and pretend. She has a Spiderman costume that she likes to wear, and even wore the mask out shopping and to eat a few times. A lot of people comment on her costume, and she will hug me and say, "everyone likes my Spiderman costume Mom." She also routinely dresses up like princesses, fairies, rock stars, and Hannah Montana, depending on her mood. As often as she can, she gets Eden to play along with her, though Eden will sometimes refuse just to get Holland upset.


Just as she always has been, even as a baby, Holland tends to be a bit bossy and likes everyone to do things HER way. She has a hard time regulating her emotions (aka moody) when things don't go as SHE plans. In other words...she still throws a fit when it's time for the fun to end, when we won't play the game HER way, or when we won't buy her the toy she REALLY WANTS! She's also pretty reasonable though, and can usually be talked out of her fits before they go too far. She still has a hard time staying focused when there is a lot going on around her. In crowded or busy environments it is really hard to get her to look at me and listen to what I say. She also has a harder time emotionally in these situations, and can be prone to meltdowns.

Holland is happiest listening to music, riding her bike, digging in the dirt, playing with trains, reading books, watching movies, playing her Leapster, and pretending. She is smart, affectionate, and passionate about the things and people she loves. She can be a little bit dramatic and high maintenance, but that is all relative, and for the most part she is simply a delightful and interesting little girl who strays from the beaten path. I am proud of her uniqueness and hope that she continues to pursue her own interests regardless of what others think is "socially appropriate." (Yes, we did have a professional say in a meeting that "digging in the dirt" is not "socially appropriate" for a little girl.)

I love, love, love, seeing how my two girls, twins who grew together in my womb (short-lived as that was) and grew up in the same home under the same circumstances, are growing up to be So Very Different.

Eden is my girly girl. She loves all things pink and sparkly and definitely notices that some things are for "girls" and some things are for "boys." She becomes indignant if we ask her to play with something she perceives as for "boys" though she will make an exception for trains, and even cars if she can *be* Sally (or the female character). She is going through a big Hannah Montana phase right now, and loves listening to her music and singing along.


One of my favorite things that Eden does right now is sing to herself. Any time she is playing alone for a period of time you can hear her singing under her breath. She sings songs she knows, often repeating one line of lyrics over and over, or she makes up her own songs. Of course she sings "Best of Both Worlds" a lot, but another of her favorite lines is from a David Bowie song..."oh you pretty things, don't you know you're driving your mamas and papas insane!" Hmm. I wonder where she got that;)

Eden is a very visual, very observant little girl. She notices everything and likes to point out everything she sees. God forbid you have a giant pimple on your nose. Eden will notice and mention it the minute you enter the room! "What is that on your nose?" "You have a big pimple on your nose...hahahahaha!"

Eden looooves talking about when she and Holland were babies, as well as when John and I got married. Babies and weddings. She likes to dress up like a bride and pretend that she is marrying daddy. Yes, it's a little odd. She isn't satisfied with cursory answers either. She wants to know details. Did you wear a veil over your face? Why? Who walked you down the aisle? Did you marry Papa or Daddy? Why? What did you say at your wedding? Why? Did Daddy give you that ring? Why? Did daddy kiss you? WHY?

Then she tells me "when I grow up I'm going to live in my own biiiiiiig house. Bigger than this house. It's going to have a bedroom and no daddy. Actually, Daddy can live there too. He can sleep in my big bed with me." I ask, "What about me?" "No. You can live in your house and daddy can live in my house with me." I tell her there is no way that daddy is going to sleep in a big bed with her when she grows up, but she hasn't figured out that girls just can't grow up and marry their daddys!

She also told me that she wants to drive a pink convertible with blue stripes, and that she will take us all for rides. And she is going to have a job working on the computer. At daddy's work. Daddy is going to work there too. Hmmm. Well, I'm glad she loves her daddy!

As you can probably gather, language-wise Eden is doing AWESOME! She is talking all the time now, and the complexity of ideas that she is able to verbalize seems to increase every day. She is even bringing up things that she remembers from the past that she has the words to express now, whereas she didn't before. It astonishes me sometimes. She is also comprehending and recalling many more details, concepts, and story lines from books and movies.

On our recent camping trip (more on that later) she was looking at a compass and asked me what it was for. I explained that is shows us direction, like North, South, East, and West. She said "like in the Zax story by Dr. Suess!" (Another story from The Sneetches and Other Stories...highly recommend it!) We read the story again that evening, then as she was trolling around our campsite in her powerchair I could hear her saying "I never budge. That's my rule. Never Budge." I asked her what that means, "never budge", and she said "it means don't move!"

Both girls like to pretend and reenact what they see and hear constantly. If we are not reading a book or watching a show, we are acting it out. Luckily they are getting muuuuch better at playing together for extended periods of time, and they act out a lot of stories on their own. I occasionally get a break from having to *be* one of their characters, though I still hear the question a hundred times a day "Mom, who are YOU?" It's an interesting question, and one I am still figuring out for myself!

For the most part, life is good at age five. The girls delight and amaze me everyday. I love these kids and feel so loved BY them. It would be selfish to ask for more, when other people have so much less.

Even so, I still have my own personal pity parties once in a while, and I have to give myself permission to do so. I am doing a really hard job.

I still feel a tinge of sadness when I see other little girl twins, younger than my girls, running around playing together. Occasionally a wave of emotion will hit me when I am lugging kids and equipment out to another appointment, wishing we could be doing something fun instead. Or when I am changing yet another poopy diaper. Or spending an hour spoon feeding my kids their lunch...

In my own little world things feel pretty normal. But sometimes when I am out in the real world, I realize that we're still not quite there, and we probably never will be.

Five years out I feel more at peace than ever. But the intense love and joy I feel being the mother of these two amazing little people is still sometimes tempered by sadness and longing.

Sometimes I wonder how so many conflicting emotions can live in one person's heart.