It's the Final Countdown!

Ten hours from now we'll be checking in at the VIP tent for a (hopefully) tasty breakfast.

Thanks to all of you for your generosity. You have helped us to reach and surpass our goal, and raise the most money we have so far in honor of our girls.

It's time to March for Babies!

Go Team Holland and Eden!

Spring "Break"

They call it a "break"...but it's not, really.

Don't get me wrong, I looooove being home with my kids. I also loooove working part-time! I work 2-3 days a week, and get to be home 4-5 days a week, and I find that is the perfect balance for ME. I get to shower, get dressed up a little, and spend time out of the house interacting with ADULTS. Sometimes I feel like going to work IS my "break"!! I can even get an errand or two done on my lunch or on my way home.

I am definitely not cut out to be a stay-at-home mom, though I have the utmost respect for those parents who do. I also can't even fathom being a single parent, especially having a child with unique needs (like technology and heavy equipment!).

I was home with the girls ALL WEEK, pretty much on my own. Do you know what that means? It means I had to be present for TWENTY meals, breakfast, lunch and dinner, and I had to do TEN of them completely on my own! I got ONE off because I had a Family Advisory Board meeting at the hospital. One.

Okay, okay, it wasn't that bad...at least they were healthy and actually ate (for the most part) what I fed them. But still, sometimes the boredom just overwhelms me! That's the hardest part for me. I get so BORED!

On Monday I took both girls to Holland's eye doctor appointment. They had to dilate her eyes, so the total time at the office was a little over an hour. Then I took them both to McDonald's for lunch. Then we went to the eyeglass store to order new frames with a new prescription. Then we ran to OfficeMax, Michael's and Target before picking John up for dinner at Chili's. Throughout the day the girls talked and asked questions constantly. I had to teach them the game, "let's see who can be quiet the longest." I ordered TWO ice cold margaritas at dinner because after a day like that I needed them! I felt like I deserved a medal, I truly did. It's exhausting!

Then we went home, bathed the girls and put them to bed. We came downstairs to a house that looked like it had been ransacked. Those girls can destroy a perfectly clean...um, I mean somewhat picked up...house in minutes flat. I spent the week trying to work on our Team Shirts, and quickly realized that if you aren't constantly cleaning up it's impossible to stay on top of it.

I went back to work today and right away someone asked how my "break" was. I automatically replied, "oh, it was great!" Then I started thinking about it, and it hit me that it really was great. Despite the boredom during feeding, the kids who make a mess in my house and won't stop talking...it was great.

It was great because I have them. They eat. They make a mess. They talk.

I have them, and I am oh so grateful.

Please support Team Holland and Eden as we March for Babies! Our walk is just FOUR days away, and we need your help to reach our goal. If everyone reading would donate just $1, we'd be ON OUR WAY:)

Hoppy Easter 2009

Go Team Holland and Eden!

Walking the Walk

Holland and Eden are VERY excited about March for Babies this year. We've picked out a color (RED) and pictures for our "team shirts", and have been talking about it for weeks. They remember how much fun it was and even remember some details from last year that I wouldn't expect them to. They both have excellent memories. I think they get that from me, as they certainly don't get it from their dad!

This is the first year that I feel like they "get it" enough to talk about WHY we are walking. I tell them we are walking to help babies...so that other babies won't be born too early, too little, too sick, and have to stay in the hospital for a loooong time like they did.

I don't go into a lot of detail because it makes them sad. They always ask for reassurance that I was there too. I tell them "yes, Mommy came every day to visit you and hold you at the hospital." I tell them that the doctors and nurses helped me take good care of them so they could get better and come home. They know that they needed machines to help them breathe and tubes to help them eat. They know that Holland did NOT wear glasses in the hospital, and that Eden did NOT have her "hearing." They know that they DID get better, and they DID get to come home.

I don't tell them about the other babies who aren't so lucky.

We are walking to raise money for the March of Dimes. We want to help fund research exploring the causes of premature birth so that it can be prevented, as well as research into providing better care to babies who are born prematurely so that long term disabilities can be minimized.

Holland and Eden would not be here today if it were not for life-saving research funded by the March of Dimes. But clearly there is a lot more work to be done. I live with this fact everyday when I am giving breathing treatments, stretching muscles, lugging equipment, and trying to get my girls to eat so they will gain weight.

There is more work to be done.

I feel that as the parent of surviving micropreemies, I must do my part in educating people about the long term effects of prematurity and encouraging people to become part of the solution. It takes time, it takes money, and most of all it takes research.

Since 2006 Team Holland and Eden has raised over $10,600.00! This year I'd love to see us raise more than ever, and have set our team goal at $5,000.00. It's a lofty goal, but certainly possible, isn't it?

My own personal goal is $3,000.00. If you'd like to support me you can visit my personal page to make a donation. I know times are tough, but if you forgo that Starbucks frappucino, or fast food lunch for JUST TODAY, you could brew your own coffee, pack a bag lunch, and donate just $5 or $10 dollars for a good cause. Or as Eden would say, "to help other babies in the hospital."

If you are thinking about, or planning to walk with us on April 25th, I would HIGHLY encourage you to go to our Team page, and sign up as a new walker. I'd like to challenge everyone on the team to get out there and raise their own money this year! Each of you has your own circle of people...friends, family, co-workers, church members, bowling league...that you can ask to donate that I might not be able to get to personally. And if you raise at least $125 you can get your own March for Babies t-shirt:-) Thank you Kim, Liz, and Patti for already signing up!

If you are planning to walk with us, and want one of our red "team shirts" give me a call or an email to let me know your size. These shirts are $5 each to cover costs and will be ready the week before the walk. I will bring any not picked up on the day of:-)

As Holland would say..."I can't wait." Or in Eden's words again, "It's going to be weally fun!"

Wordless...Um, Thursday?

Go Eden Go!

I thought I should share Eden's progress and recent accomplishments with the world! She is doing so awesome with her sitting and...well, I guess you have to watch to see what else:)

Feeding Micropreemies

It's not fun.

Not. Fun. At. All.

I've been meaning to do a new eating post for a very long time, but every time I sit down to do it I get discouraged and stop. The truth is that it's very complicated and there are no clear cut answers. Actually, there are very few answers at all and after more than four years of doing it I have very little sound advice to offer anyone.

All I can really offer is empathy. Feeding these girls has honestly been one of the (if not THE) most difficult hurdles on our journey, and one that we have yet to overcome.

All in all I think we have made a lot of progress over the past year. But just when I start feeling like we are in a good place with eating and weight gain, something happens (like RSV or another bout of pneumonia) that sets us waaaaaay back and brings all of those terrible, paranoid feelings to the surface again.

Eden had a really bad week last week. She was sick with another cold, which turned into pneumonia again, which in turn led to over a week of severe regression in her eating, and probably close to a pound of weight lost. Now, given that she had just FINALLY surpassed the 25 pound mark, 1 pound lost is a major, major deal to us. We went from making comments aloud about how she seemed to be filling out (as subtle as it was) and seeming overall slightly less skinny and quite a bit more sturdy, to once again noticing every rib and the slightly sunken in look to her face that makes us (John and I) more than a bit edgy and glum.

We feel like we need a plan, but at the same time feel like we've not just exhausted all of our ideas, but also our energy/motivation/want-to. It has been four years, after all.

So here's the last four years in review...

For the first couple of years, the girls drank bottles of Expressed Breast Milk (EBM) fortified with Enfacare formula to 27 cal/oz. When the EBM ran out we switched to straight Enfacare, still at 27 cal/oz. It was never easy, particularly with Eden. We struggled to get 2-4 ounces at a time in the beginning, but gradually over the second year they would drink 3 or 4, 6 to 8 ounce bottles at a time. At their worst we would struggle to get 8-10 ounces in a day, and at their best, Holland might drink 24-28 ounces and Eden 20-24 ounces.

We introduced rice cereal and baby food on the usual schedule and honestly never had any real luck. I can't say that my kids ever finished an entire jar of baby food in one sitting between the two of them. Holland again did somewhat better. Eden always had trouble swallowing pureed foods without gagging, and many meal ended with big vomits making it seem ridiculously pointless and depressing. We relied on the bottles for the majority of their calories for such a long time.

Around 18 months we went to 3 bottles a day, and around 2 we cut back again to 2 bottles a day trying to get them to eat more food. We discovered that they really preferred table foods of all types to baby food, and started having a bit more luck.

Well. Maybe I wouldn't call it luck. We had to bust ass to get them to eat anything at all. That's the truth. For close to two YEARS we had to practically tap dance on the ceiling to get them to eat. They required just the right amount of distraction, without distracting them too much, so they would allow us to put food in their mouths. We tried for months to use positive reinforcement with each bite, and that worked a little bit. Sometimes. But soon we discovered the power of the television. We could put a high interest DVD on and they would become much less resistant to eating. We made progress.

The vast majority of the progress we made was totally as a result of trial and error, and my own background and training in behavioral psychology. Our doctors offered us very little helpful advice, and I didn't really know anyone with older preemies to bounce ideas off of or even to vent to. Since that time I have come to realize that we are SO NOT ALONE in the feeding woes. In fact, our issues have been relatively mild considering what might have been. We had gagging and vomit with Eden, and serious reluctance and avoidance with both girls, but it wasn't every day and through it all they kept eating, even if some days their intake was extremely minimal.

I have read about other people's experiences with feeding therapy, and it seems like a lot of the techniques that other therapists offer are really similar to the things we kind of came up with on our own. So, I like to think that we did okay, even though I have a lot of guilt about all of the meals that ended in tears and utter frustration for everyone involved. Sure, I knew the importance of making meals a "happy time" and didn't want to create a (more) negative attitude toward mealtimes and food, but there were many days when I had just HAD IT and didn't feel like I could take it anymore.

Around this time last year I was really feeling at the end of my rope. Eden was in the hospital in February, and I remember talking to John about "where do we go from here?" I was honestly beginning to consider that we needed either "official" feeding therapy, or we needed family therapy to help us get past all of the negativity we had come to associate with feeding our kids.

We made a concerted effort to back off a little. We knew we couldn't back off entirely, but we worked hard at giving the girls a little more say in the matter and respecting their wishes. We tried to relax more, be more cheerful, stop when they were done, and quit with the outright bribery. It was far from perfect, and we still had an occasional bad meal, but overall things got better.

This past July, when the girls turned 4, we stopped the bottles altogether. It was extremely hard for us, because it was something that was finally EASY. They liked the bottles, drank them without a problem, and still got a good chunk of calories from their high cal milk. But I felt like it was an important milestone because they were getting set to start preschool, and we were starting potty training. I wanted them to feel like "big girls" and I felt that getting rid of the bottles would be good for them socially and emotionally, even though it was difficult for John and I (and Nana!) to see them go.

After stopping the bottles, they both lost weight. I think Holland lost close to 2 pounds, and Eden maybe 1. Their eating, however, definitely picked up.

Nowadays they eat an excellent variety of foods, and neither is what I would classify as "picky." They generally eat 3 meals a day, with 2 snacks in between. We have more good days than bad days, and on a good day I think they eat what anybody would consider a fairly "normal" preschooler diet. They both have particular food that they especially like, and each has come to me on numerous occasions and said the most wonderful words..."I'm hungry."

There are of course, a few clinchers. The most major clincher is that, left to their own devices, they would each eat a bite or two on their own then completely lose interest and quit eating. As far I can tell, they would joyfully waste away into nothingness. Well, of course we can't let that happen, so we end up feeding them almost every bite of every meal. And, as much as they have become accustomed to their routine, they eat best when watching TV, drawing, or playing while we feed them. Meals easily take between 45 minutes to an hour and a half. On average, we spend at least 3 hours a day just feeding them.

When I think back to how things used to be, I can recognize our progress. At times it makes me feel like I should just be grateful for what we have. At the same time, I can see that we have completely stalled in our operations and I am feeling drained of my gusto. Part of me wants to just do what's easy...and I guess that means feeding them in front of the TV for another year or more to see what happens. The other part of me realizes that it's time to move forward. They will be five this summer, and they really should be on track to feeding themselves.

I know what I have to do. I have to turn the TV off, sit with them at the table for three square meals, and just LET IT GO. Don't talk about it, don't give in...just let them feed themselves. I know they can do it. I know they WILL do it. Well....I think they will, anyways. But it's still so scary.

It's scary because they never really regained those pounds lost when we stopped the bottles. They MIGHT regain them by the time their fifth birthday rolls around, but who knows? It doesn't help that each time I get my self psyched up to do it, someone gets sick, stops eating, and loses weight.

I mean, my kid is 4 1/2 years old and isn't even consistently at 25 pounds. What does that mean? Does that mean I am a terrible mom? In denial of the fact that she should have had a g-tube a long time ago and saved myself years of frustration? Or, does it mean that I have saved her a lifetime of tube feeds, and taught her to really enjoy food?

The thing is that there is NO clear answer. I feel like overall I have made good choices considering our circumstances. Sometimes there is a nagging doubt in my mind, but at other times, when I see her scarf down an entire happy meal from McDonald's, I feel better. The thing is that NO one can say that she would be bigger, stronger, healthier, or happier if we had had the tube put in. In fact, it's just as likely that she would not be any of those things.

But for the love of all things holy! What I wouldn't give to have back some of those hours lost to feeding, and to avoid any of the hours still to come...

I'm not sure how much I have left in me.

Daddy Dearest

Happy 33rd Birthday John!!!

You don't look a day over 21.



Clearly you don't act it either! (Except when you need to, of course:))

Have a great day. We love you.