March for Babies, Take Two

It's that time of year again - when we shamelessly use our blog to raise money for the March of Dimes. As you all know, Jake was born too early. He was in the NICU for 87 days, and while we avoided many of the major preemie health problems, he did have trouble breathing. Within the first minutes of life, he received surfactant which essentially helped to keep his lungs from collapsing and sticking to themselves. Research into surfactant was sponsored by the March of Dimes (MoD) several years ago, and today MoD continues to sponsor research into the causes and treatment of prematurity.

Jake is part of a club no baby should have to be a member of - less than 1% of babies in the US are born before 28 weeks but almost 13% are born before 37 weeks and considered premature births. Every day, thousands of babies are born too soon, too small, and often very sick.

We're walking in the March for Babies on April 24th, and we need your help. Please consider joining our Team (Team Cubby, of course!) or making a donation. You can make a donation by clicking on the badge at the right. You can join our team by clicking here.

Thank you!!!

Jeff and Jake on the day Jake was born

Jeff and Jake on the day Jake came home

Jeff and Jake on Christmas Day 2009

GO BLUE!

After Christmas in Indy, we went up to Ann Arbor. In the interest of getting this posted, I'm going to go light on the narrative and give you what you really want - pictures and video.

"You've got big feet Grandpa Dale"

"Aunt Jen has big feet too! Her boots go all the way up my leg!"


"Another dog to love!" (that's Figo under the love tackle from Jake)


"I'll write down the gifts this year Michigan Grandma"


"This is a great book about dogs, Grandpa!"

Some of you may know that Jake's favorite book is an out-of-print title called Gas Station Charlie. It's a true story about a Golden Retriever who "worked" at a gas station in Saline, Michigan near Ann Arbor. Charlie has passed on, as has his son, but his grandson Harley works at the station now. We took Jake to the gas station while we were in Michigan. Here's Jake meeting his favorite character.


He's just a little excited.




We took Jake to campus one day. It was really, really cold (don't forget Jake is a Southerner!), so we didn't go quite as many places as we would have liked to, but we still got some good pictures and got to see some old stomping grounds.

"Down with the Buckeyes!!"

HAPPY NEW YEAR!

We're now "those crazy parents"

Okay, so we've been "those crazy parents" with regards to preemie things (hand sanitizer anyone?) for a long time, but we really jumped off the cliff into crazy parent land when we decided the best way to get home for Christmas in the Midwest was to get up at 3:00 a.m. and leave under the cover of darkness. Amazingly enough, those crazy parents know something and this strategy worked really well for us. Jake handled the 12-hour car ride like the trooper he is and we got to Indiana while it was still daylight.

Jake had a great time with his cousin Lily, Aunt Kathryn, Gamma B, and Papaw George, but his heart belonged to Bailey the dog.

"Let me show you how to open that Papaw"

"Let US show you how to open that Papaw"

"Who is this dog?"

"I like the Colts too, Papaw!"

"I love this rocking horse that was Gammy B's when she was little"

"This dog is fun!"

"Oh, so that's how you climb up and down the stairs super fast"


"I really love this dog"

"Play us another one Gammy B!"

"I really, really love this dog"

We also got to see my good friend Amy and her son Elliott while we were in Indy. It was great to catch up and for Jake to have another little playmate. Elliott was born right around when Jake was due, so they are pretty close in age.


Jake wonders how Elliott got all that hair...

MERRY CHRISTMAS!

After the fun of Indiana, we headed up to Michigan for more fun! Pictures and videos coming soon!

Catching up

Jeff and I just finished watching the special 19 Kids and Counting... (or rather, I just finished making Jeff watch it with me). Back in December baby Josie was born weighing 1 pound, 6 ounces at 25 weeks. I know people have lots of opinions about the Duggars (except Jeff who had never heard of them until tonight - my husband is not exactly a pop culture guru). But say what you will, I feel like I could actually relate to them now. The fear in JimBob's eyes is what is still with me: Jeff had that same look while we were in the hospital. A woman from a preemie board I go to wrote a really excellent blog post about the Duggars back when Josie was born. You can find it here. (and you can also read the amazing tale of Robbie!)

Enough about the Duggars. We have a lot of catching up to do around here. Here's the last few months in pictures.

Here's an outtake from our Thanksgiving day photo shoot at Cousin Todd and Aunt Suse's. A pretty good picture but we are all looking different places, which is slightly disorienting...


Todd and Susannah with Jake. We had a wonderful Thanksgiving dinner with Todd, Susannah, her sister Mary, and her mom. That makes two years in a row of Thanksgivings in the D with friends and family. Not having to cook is very nice! Thank you!!


A series from our attempts to get a "at the fireplace by the tree" shot.

"Very sweet"

"Why are you grabbing your foot?"



"Don't grab your foot."

"Okay, let's try somewhere else."

"Yeah, that's not going to work either."


In early December we headed out to the Outer Banks again. This time hitting the southern end and a really nice little town? spot? named Frisco. Jeff's boss at Datatel took the whole team out to a little shack by the sea (aka, a huge 9-bedroom house that sits right on the beach with a heated pool, hot tub, the works!) to celebrate the end of the NC Project. We had a lot of great food and drink and the company was wonderful as always! Jeff was lucky to get to work with such a great bunch of folks for such a long time.

Mom and son in front of the Cape Hatteras Lighthouse...

The Datatel NC team (with Jake wandering in)

In early December Jake was evaluated by a speech pathologist because we had some concerns that although he seems to understand most things, he is still not saying much. She confirmed what we essentially already knew. His receptive language was at a 19-month level (ahead for even his actual age at the time) but his expressive language was at an 11-month level. The pathologist had a number of things for us to try, and for Christmas I did get what I wanted - Jake's first word, which fittingly is "woof." He's now added "moo" and the occasional "meow." It seems that he really wants to talk to the animals before he talks to us. Fortunately, he signs for "food," "more," "help," "all done," "please," "bye bye," "book," and he blows kisses, so we know, roughly, what it is he wants. We are going to start speech therapy this month, so maybe sometime soon we will have a video of Jake talking.

He may not be trash talking yet, but this kid is already a baller. Here he is in late November with Dad's basketball...

Not forgotten

Just a quick note to say that we have not forgotten about the blog. We were busy with the holidays, our computer was out of commission for two weeks, etc, etc. Posts in the coming days will cover: Thanksgiving, a visit from the speech pathologist, Christmas, a trip to the Midwest, and a trip to the ER (all ends well). Stay tuned!

18 Months!!

Jake had his 18 month checkup today, and he is doing great! He was 31.25 inches and 24 lbs, 3 ounces -- 25th percentile for both measurements. His head is still off-the-charts big (97th percentile + is how they politely put it) but is following the same curve, so that's good. His doctor is really pleased with everything and pronounced that we don't have to come back until May for his 2-year old checkup, unless he gets sick or we feel the need to come in. So let's hope we don't see the pediatrician's office until May! He continues to gain on Bernard. I am amazed at the difference between now and a year ago....

Jake still loves to eat. His pediatrician predicted he will become more picky by age 2, but she did think his love of all foods is great for his catch-up growth. Here he is feeding himself some butterscotch pudding. Enjoy!!

Blog for Prematurity

Last summer, people would often say to me "it must be so hard to leave your baby at the hospital" or sometimes fellow preemie moms would say "leaving the hospital without my baby was the hardest thing I've ever done." I would always smile and nod politely. But the truth is, it wasn't hard to leave the hospital without him. He was two pounds, he couldn't breath on his own, he was getting all of his nutrition through a central line going through his belly button, his heartrate would drop dangerously low, his blood pressure would spike and "stroking out" became a possibility, without caffeine he would forget to breath (even with the machines) and needed stimulation to be reminded to take another breath. We knew he needed to be in that hospital or he would die. So, no, it wasn't hard to leave him there to save his life.

Prematurity has robbed us of a lot. I didn't fall in love with my baby the first time I saw him. He looked so tiny and so sick, machines were beeping non-stop, and it seemed that everyone else in that room knew what to do better than than I did. Not easy for a first-time mom to realize she is basically irrelevant. Prematurity meant I didn't hold my son until he was four days old and even then it was only for an hour and I was scared out of my mind. Prematurity meant knowing what it looked like for our son to brady and to have apnea spells and learning how to stim him back to life. Prematurity meant he didn't breastfeed until he was nine weeks old and even then, his heartrate would drop so low he'd have to stop. Prematurity meant people stared at us not knowing whether to say "congratulations" or "I'm sorry." Prematurity meant seeing new moms being wheeled out the hospital with their babies in their arms was difficult but not nearly as hard as it was to see pregnant moms being wheeled through the NICU for their tour and seeing the fear in their eyes.

Eighteen months later prematurity still takes from us. Jake stays hibernated to stay healthy, and we stay isolated from the world. We burn through our savings to pay for his nanny. We study growth charts and calculate what rate of growth it will take to hit that magical 50th percentile. We worry about developmental milestones and subtract three months to see if Jake is hitting them at his "actual" or his "adjusted" age. We will most likely remain a family of three (and not four or five like we had always pictured) because medical science cannot tell us why and cannot give us much hope for not repeating the same fate.

But yet prematurity has given to us. We are more grateful. We are stronger. We know how fragile and precious, and yet resilient, life is. We know that life can be fundamentally unfair, but you keep going. We have persevered, and Jake is the most persistent 18-month old you'll meet. We have our little boy and he is wonderful. I cannot say that I see those three months with him as an extra "gift" as some preemie parents say they do, but I'm slowly starting to see it all as less of a burden.

Today is the day to blog for preemies. If you have a blog, I encourage you to post something about prematurity or put up a link to the March of Dimes. Or make a comment here and tell us what prematurity means to you.