Sunday, December 27, 2009

We Wish You A Merry Christmas...And A Happy New Year!

We had such a lovely Christmas this year. Everyone was healthy, and the girls were so happy and excited about Santa. I have always loved the holidays, but seeing the magic through their eyes makes it even more awesome than it was before!

Merry Christmas and Happy New Year!!!

Wednesday, December 23, 2009

Sad News

I am so, so sad for my friends today. They have been through so much, and my heart truly breaks for them.

Pam and Namir first contacted me several years ago when their girls were very small. They live nearby and we have had a chance to meet in 'real life' several times now. Lessa and Ivy are 24-week triplets who lost their brother Galen at 11 days in January of 2006. Their brother Reid was born last October after a full-term uncomplicated pregnancy. He was unexpectedly diagnosed with Joubert syndrome after his birth and spent 105 days in the NICU.

Reid passed away suddenly yesterday after a complicated life. He was a lucky little boy to have spent his short life surrounded by so much love.

Please visit their blog to offer your sympathies, prayers, and kind words. I understand there is very little we can do to ease their pain, but at least we can let them know we care.

Monday, December 14, 2009

Thursday, December 10, 2009

Delayed Reaction

We established some time ago that Holland has food allergies. She is one of those classic kids with the eczema/food allergies/asthma trio that seems to be pretty common. She had a very clear reaction to eggs when she was a baby. After that happened, we had skin testing done - where they pricked the skin on her back and tested several different things, including eggs, peanuts, and several varieties of tree nuts. She had a positive skin reaction to eggs and cashews. She was negative for peanuts, but not long after had a reaction after getting peanut butter on her fingers. After that incident, I just always counted peanuts as an allergy (especially since John has a mild peanut allergy). I don't believe we ever tested almonds (or maybe we did and she was negative), but our nephew Connor has a pretty serious almond allergy, so we decided to stay away from those as well. So, we just pretty much followed a nut free diet for a few years. And we had an EpiPen handy at home and at school...just in case.

We steered clear of eggs with Holland for about a year. Then we slowly started introducing food items like pasta, salad dressing, cakes, and cookies with egg IN them, and she did fine. Eventually we tried egg again, and it seems like she has completely outgrown that allergy.

I guess as the time passed I kinda lightened up about the food allergy thing. I still checked labels for nuts, but didn't think a whole lot about it. About a year ago, we were grocery shopping and I had to run out to the car for something. When I came back into the store, Holland and Eden were sitting in the cart eating WINDMILL COOKIES, which are full of ALMONDS!!! I freaked out a little bit, AND realized that I didn't have the EpiPen (had forgotten the diaper bag, and didn't think about it because so much time had passed without needing it). But everything was fine and Holland didn't have a reaction to the almonds. So cool, no allergy there.

Then probably 4-6 months ago John made angel hair pasta and chicken with sundried tomatoes and pesto for dinner one night. I checked the label and it said it contained "pine nuts." We talked about "do you think she could be allergic?", but went ahead and tried it anyway. She was fine. Not allergic to pine nuts.

I guess that's where I started getting TOO comfortable, thinking that possibly she had outgrown ALL of her food allergies, or maybe even that she never had them in the first place!

Well, we loved the pesto so much the first time we decided to buy more. This time we shopped at a different grocery store, and the only pesto they had said that it contained cashews. We had another conversation about it, along the lines of "do you think she is allergic to cashews?" "Well, I guess we can try it, so far she has been fine, not allergic to anything." So we bought it and about a week later, John made it for dinner. Honestly, I didn't even think about it again.

Shortly after we began the meal, Holland started to complain about a stomach ache. Now, you have to realize that we have been through 5 years of feeding issues. It's not uncommon for either of them to complain about...well, pretty much get out of eating. So, I kinda blew it off and made her keep eating. :( Then her eyes started itching and she started rubbing them. Again...not really all that unusual. Sometimes if she is playing with the dog too much, or crawling around on the floor before dinner, and rubs her eyes, they get itchy. Then she rubs them with greasy dinner hands, and they get worse. So I STILL didn't realize what was happening, and I STILL made her keep eating. BAD MOM ALERT! I took her to wash her hands thinking that it could be the dog, brought her back to the table to sit on my lap, and put a few more bites in her mouth. Then all of a sudden it dawned on me.

"John, is this the pesto that had the cashews in it?" "I think she might be having a reaction to the cashews!" By then, her eyes were starting to swell...especially her left, her nose was running, she was really, really itchy all over her body, and she was complaining about her tummy hurting.

I gave her a dose of Zyrtec (which she was due for anyway) and took her up for a bath thinking I should at least get it off her skin. She was pretty cheerful and played in the tub, despite the fact that by this point it was getting late and she was in pretty pitiful shape. After her bath I did our usual hydrocort and Aquaphor routine for her eczema, put her in her jammies, and put her in bed while I went to call the doctor. I didn't know if I could/should give her a dose of Benedryl right after she had her Zyrtec, and I wanted to know what to watch out for.

While I was waiting for the doc to return my call she started throwing up. She threw up once or twice, then fell asleep. John laid with her while I was on the phone. When I came back in to check on them she started throwing up again, this time in her sleep while lying on her back. That was pretty scary. We got her up, she threw up again, then went back to sleep. After that she was fine...slept threw the night with no issues, and woke up in the morning back to normal.

I did locate the EpiPen in the midst of this, but was pretty aggravated with myself for not having it more handy. I got a little lax. But now we know. She IS allergic to cashews and I will make sure I keep checking labels and always know where the EpiPen is!!!

About a week before this incident she had an appointment with the allergist and we had talked about doing bloodwork/more allergy testing, but I still haven't followed through on it. It's not just about making the time, but about whether the benefits of drawing blood will be worth the drama of putting her through that. She had to have so many immunizations this year, on top of one hospitalization and IV in October. I'd really like to wait a loooooooong time before having to approach her with any needles again. I'm almost more comfortable avoiding peanuts and any tree nuts that we aren't sure are safe for another year or so...and keeping the EpiPen handy. Still trying to decide on that one.

Thursday, November 26, 2009

Ten Things I Don't Hate About You

One of the biggest life lessons that I have learned through the experience of having extremely premature babies and children with disabilities is to never take the good things in my life for granted. Over the past five years I have learned a new and greater sense of appreciation for so many little things in my life that may have been overlooked had I not had the experiences that I have had. There have certainly been times when I have wallowed in my misery, and have felt the grips of grief and despair. But there are also times when I can truly appreciate the beauty of my life, and am awed and humbled by how very lucky I am.

I am thankful for so many things; my children and the joy they bring, my amazing family (especially my mother who loves me and helps me out in so many ways), our health, our jobs, a comfortable house, and so much more than just what we "need."

I am also so very thankful for my husband and the amazing connection that we have. As with any relationship, things are often far from perfect. We have obviously had our share of trials and tribulations. We have had the usual stresses of any relationship, and then some... We argue and we get really annoyed with each other. We get angry and hurt, and we fight. But through it all, we have persevered, and I can truly say that I love my husband more now than I ever have. Even if it sounds cliche, I feel that our trials have brought us closer, and have made us stronger as a couple than we may have been otherwise.

In many, many ways we have always been perfect for each other....and we still are.

I have been meaning to do a post like this for a loooong time, but just haven't made the time to sit down and actually do it. I find myself waiting for the right occasion...his birthday, our anniversary, Father's Day...but then those days come and go and I don't get around to it. So, I am doing it today.

Thanksgiving. A day for giving thanks.

So, John, these are Ten Things I Don't Hate About You!
(Or Ten Things I Love About You...whichever you prefer)

10. I love that you email me links to articles or information that you find online that you are interested in and that you think I might like to read.

9. You help with the cooking and dishes, and you pick up after yourself. You also help me with my tech problems and take the garbage out!

8. Your passion for music. I love that you play in bands and are so driven to create. I love that you buy new music for me and care about what I like, and that you are introducing our girls to music. I especially love listening to you play Hannah Montana on the guitar and that you learn all the lyrics and sing along just to inspire our kids.

7. The way you smell.

6. You always remember special occasions, even things other guys might think are cheesy (like the anniversary of our first date and sweetest day) and I love that you sometimes bring me flowers and cards for no reason at all!

5. You are the most honest and trustworthy person I have ever met. I love the security I feel in your love for me, and that I have never had one moment of doubt regarding your dedication to our relationship and to our family.

4. You are 100% a hands-on dad. You are *present* with our girls...completely involved in their care since day one, from waking in the night, changing diapers, feeding, bathing...everything. I can leave them with you on my (rare) girls' weekends with my friends and never worry for a second. You do it all, and you do it at least as well as me...sometimes better.

3. You play. I play too, but you have infinitely more patience for it than I do. The girls are so excited when you get home from work, or when the weekends come, because they know you will think up the coolest, most elaborate games to play with them...from obstacle courses, superheroes and villains, hidden clues and mysteries to solve, and secret agent notes to decipher...they love to play with you, and I love to watch the three of you together(when I am not playing myself)!

2. I love the look that passes between us when the girls do or say something exceptionally clever or cute. I love that I can share the love/thrill/pride that I feel for them with someone who feels it as much as I do.

1. I love talking to you. After 16 years I still feel like you are my best friend and I enjoy your company. We still have things to talk about, and we see eye-to-eye on the majority of life's most important issues. I always sense that you feel the same. I feel like you value my opinions, you listen to me, and you help me to always remember the big picture.

The big picture is that we are still "meant to be." You are my soul-mate and I am so very thankful for you!

Friday, November 20, 2009

Flashback Friday: Pumpkin Fun

October 1993:

October 2009:

Also quite fitting for a Flashback Friday, I got the most lovely comment on an old post today. It made me smile. Thank you Mel!

Wednesday, November 18, 2009

Fashion Show in Review

The show went great. We had a lot of fun, and we raised a lot of money for an amazing cause.

The event was hosted by our NICU Family Advisory Board (FAB), a group of volunteer parents (including me) who have had children in the NICU, and who are committed to making it a better place for all families in the future. The fashion show is the FAB's major fund raising event of the year, and the money that we raise is used to fund several important programs, including our monthly Pizza Nights, Educate and Create, Parent-to-Parent training and support, holiday gifts for NICU families, and our popular Annual NICU Reunion. These programs and gifts support and touch the lives of families during what is often a very emotional and stressful time, and often have a lasting positive impact on NICU families.

The girls were good and cooperative for the most part. I can't say it went off without a hitch...Eden was pretty zoned out because of all the commotion, and Holland was bursting into tears every 5 minutes when things didn't go according to her agenda, but we got through it and they looked fabulous!

The liquid leggings were surprisingly comfortable, and I BOUGHT them...because I go to so many events where liquid leggings would be the PERFECT touch. Not. But I feel like a rock star in them , I love them, and I WILL find somewhere to wear them!

If nothing else, I can pair them with my mask and go as Catwoman next Halloween;)

Billie Before:

After Hair and Make-up:

After Wardrobe, with my good friend Allison:

Rock and Roll Family:

Fashionable Girls:

Family on Stage:

More Liquid Leggings:

Tuesday, November 17, 2009

Happy Homecoming Day

Not only is today National Prematurity Awareness Day, it's also my original due date, and the day my girls finally came home from the hospital together for good.

I cannot believe it has been five years...

Happy Homecoming Day Holland and Eden. You continue to delight and amaze me everyday and I cannot imagine my life without you.

You are my joy.

Wednesday, November 11, 2009

A Big Day

Tomorrow is a big day for us! It is the fifth annual "Fashionable Growth" fashion show, presented by our NICU's Family Advisory Board (of which I am a member). We will be modeling this year's top fashions from Elephant Ears and Vintage to Vogue.

I will be wearing "liquid leggings." Total. Rock. Star.

Tickets will be available at the door. You should come!

Friday, November 06, 2009

Flashback Friday

Sigh... Watching this really makes me miss my sweet little squishy babies. They're such kids now.

Sunday, November 01, 2009

Super Heroes!

Halloween didn't exactly go as planned, but I think the girls had fun, and they will remember mostly the good, and little of the they always do.

We traditionally have my entire family over for pizza and trick-or-treating on Halloween, but at least 3 of my family members had a fever the week before Halloween, and my sister was very sick that day, so we decided to call the party off in hopes of limiting our exposure to all the germs.

Instead, Nana and Papa came to pass out candy, while John and I took the girls out trick-or-treating. It was pretty chilly, and Holland started shivering after about 15 minutes. Also dampening the experience is the fact that my girls DON'T do scary this year. They freaked out at the first house we went to because they were afraid of the music and decorations, so we almost had to call it a night right then! We finally convinced them that they didn't have to go up to any house they thought was too scary and we continued on. I carried Holland the last half of our outing, but even though she was cold, scared, and seeming a little out-of-sorts, she was a trooper and still didn't want it to end:)

Eden drove her power chair this year, and it was AWESOME! She drove up to everyone's front step and called out "trick-or-treat." With the exception of only one person, everyone came out of their house to put candy in her bag, and as usual, several people slipped her a few extra treats. Both girls were polite and remembered to say "thank you" and "Happy Halloween!"

We were home by 7:00, dumped their bags and got excited about all of the candy (that they won't actually eat), then had some pizza for dinner. During dinner Holland started complaining about a tummy ache, then complained that she was cold even though everyone else was warm. Nana thought her head felt a little warm, so I took her temperature and she had a fever (100.0).

I gave her Motrin and it came right down and stayed down all night. It was up a little this morning (99.8), but after another dose of Motrin she was fine all day. Tonight before bed she was cool as a cucumber so I don't think this is going to be a big deal.

But, I am glad I made the call to cancel the party. I would have felt really bad to give OUR germs to everyone else!

All in all, it was a Happy Halloween, and my girls were SUPER HEROES!

Of course they were.

Wednesday, October 14, 2009

The Potty Train

Okay. So we've been at this whole potty training thing for a while now. Like, close to two years to be precise. I try really, really hard to be relaxed and not stress myself out. At age 2, it wasn't even in my realm of thinking. Age 3, we started working on it, but I wasn't too worried. Age 4, we got more serious, then lost some momentum, got bored, got motivated again, slacked off, and didn't really see a whole lot of progress. That's when I started to realize that perhaps THIS was another thing that just wasn't going to come easily like it does for MOST people.

Now they are 5. And I am trying really, really hard not to freak out.

Holland is potty-trained during the day. She wears underwear to school, and did all last year as well. She used to have a few accidents a week, and would ONLY go potty when we gave her frequent reminders and basically MADE her go. She is just now getting to the point where accidents are much less frequent, and she is making it to the potty on her own accord. She is NOT however, potty-trained at night. She wears a diaper to bed and wakes up every morning soaked. She sleeps very soundly, and hasn't shown ANY signs that she is ready to wake herself up and go to the bathroom during the night. I have no idea what to do.

Eden is still in the hit-or-miss stage. She wears a pull-up during the day. The only way she can stay dry is if we take her to the potty every hour, and even then, she may have an accident. We made quite a bit of progress in the potty department last school year, and had a pretty good pattern going on. Unfortunately, near the end of the school year, her one-on-one aide had to be out for a few weeks, and I truly think I saw a regression in the potty-training at that point, even at home. Then, for several months, we made no progress at all. She was back to pooping in her pull-up on a fairly regular basis, unless we got lucky.

We reinstated Eden's potty chart near the end of July. I tried, at the same time, to start a "chore chart" for Holland so that she could work toward a goal as well, but it was SO much drama...Eden couldn't stand that Holland got stickers for chores, and thought she should get stickers for chores too, and it detracted from the whole goal of potty-training, so I had to do away with Holland's chart, and just let Eden work on potty-training. Really, it was pathetic, Eden crying big crocodile tears saying, "I can clean up my toys too!!! I don't want to go potty. I want a chore chart TOOOOOOO!" I just couldn't take the drama.

So anyway, back on topic... Eden was able to earn a sticker on her chart for every time she peed, pooped, asked to go potty and actually went, and was still DRY. So, she could potentially earn up to 4 stickers at a time. When she reached one of the small stars on the chart, she and Holland could pick a small (dollar store) prize out of the prize box. When she got to the BIG star at the end of the chart she earned a trip to the TOY STORE to pick out a BIG prize. It started kinda slow, but after a little while she got the hang of it and started making progress again. It took her about two months to make it to the end of the chart and to earn her BIG prize.

So, where are we now??? It's still hit or miss. Most of her poop (like 80-90%) is making it to the potty. She asks to go potty a lot more often, and experiences a lot more success. If she says she has to go, about 90% of the time she really does. The problem is that about 50% of the time, she is still wet when we get to the potty. We have tried on multiple occasions to put her in underwear, but she just can't seem to hold her pee for long enough to really be successful at it. Like, literally, she will have an accident within a half hour after using the bathroom. We'll try again, and within another hour, another accident.

I am at a loss. They are 5 years old. Cognitively, Eden completely understands the concept, and knows what she is supposed to do. I find myself getting frustrated with her, especially with big accidents (poop), but then she will apologize profusely, and I feel like a total schmuck for giving her any grief.

At what point do I stop trying to get her in underwear and just accept the pull-ups? I have always assumed that it is possible for her to be potty-trained, but what if it isn't? How do I know? I don't want to push the issue if it just isn't physically possible for her to control those muscles that are necessary for her to hold it and control her bladder. But, at the same time, I have heard from multiple sources that there is no reason she should not be potty-trained. Apparently some people believe you can potty-train anyone, even kids with very significant impairments.

And what about the potty-training at night thing? I'm feeling some real pressure...stemming from cultural expectations, the feeling like someone might judge me as a bad parent for not having my kids potty-trained at AGE FIVE, like maybe I have absolutely no clue what I am doing despite years of training in behavioral psychology....and on and on.

I'm at a loss. Anybody out there have any ideas? I'm open to anything...but would especially love to hear some success stories from families in a similar situation.

Has anyone experienced success at FULLY potty-training their child with a physical disability after the age of five???

Please help!

Wednesday, October 07, 2009

Sunday, October 04, 2009


Needed to write an update to let you know that we are all home...and very happy to be here.

Very busy, and it may take a while to regroup, but for now, John and I have polished off a bottle of wine, and are off to bed...together.

The girlies are sleeping snug in their beds. I can't say that we are completely out of the woods yet. We will be heading to the pediatrician tomorrow, and the pulmonologist in a week. I don't think they are quite ready to go back to school yet. But, we are home for now.

And happy to be here.

Saturday, October 03, 2009

Staying Put

Well, we're still here... Holland is definitely feeling better, and was up and around playing and having a good time without oxygen or an IV all day yesterday. We thought for sure we'd be heading home this morning. Unfortunately, last night didn't go quite like we'd planned. As she was falling asleep her oxygen saturation kept falling to 87-89. She needs to be able to stay above 90 while sleeping in order to go home. We ended up putting the oxygen cannula back on. We tried weaning it down throughout the night, but any time we went less than a half liter she started desatting again.

It's especially discouraging when we get our hopes up.

Eden is in good spirits and feeling better too, though not quite back to normal yet either. I took her to the pediatrician yesterday, and we ended up starting some steroids with her as well. Her lungs are still sounding tight and crackly, but she is still oxygenating well, still eating, and still happy. I think she'll be okay.

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?":