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.

Birthdays and videos!

A very happy birthday to our niece Mariah who turns 3 today! and a happy (one day late) birthday to Jeff who is now in his "charles barkley" year - 34. Jake enjoyed helping dad unwrap his gifts...





There has been a call for more videos, and we are happy to oblige. Here's one we've titled "who's chasing who?"

The Beach Redux, 17 Months, Cookies, and Halloween

Update: Three days have passed since I first started this on Sunday, which means bonus video at the end...

Jake is down for an early nap (thanks daylight savings time) so I'm going to try to blog about October in one big post. Jake's sleeping over the past month has been hit or miss (which is much harder now than it was a year ago because we are so accustomed to that blissful 11 hours). One culprit is tiny tooth #7 which has emerged on the bottom. We also think we are spying some molars coming in - at least bulging gums making way for molars.

Jake also weaned this past month, which went easier than I thought it would. I gave serious consideration to nursing him through the winter to provide him with more antibodies to stave off colds and flu, but in the end, we were both ready. Jeff and I think Jake is now even more clingy to me, but so it goes. He's a mama's boy for now. I'm sure daddy's day will come.

At the end of September, Jake went to his first football game. It wasn't the Big House, but it was fun (and NC State actually won).

We headed out to the Outer Banks for a weekend and somehow hit the coldest weekend yet. Rainy and in the 50s. Didn't stop Jake from enjoying the beach!


And we found the crossroads of his genealogy...


I was out of town for work (first time for me to be away overnight since Jake came home from the hospital). Jeff did a fantastic job without me (who doubted?) and even took the 17 month picture...


We had a great Halloween yesterday (Michigan football debacles notwithstanding). Jake dressed up as a leopard (the bear costume will have to wait for next year) and even went trick or treating at our neighbors. (yes, that is chocolate drool running down his chin...)


If the leopard hadn't worked out, Jake's back up costume was sumo wrestler...


This year's pumpkins included an homage to our new computer, a ghost (yes, I can carve something besides a happy face!), and a bear (of course)...



Finally, for Halloween my mom sent her amazing sugar cookies. This was Jake's first time for them...Needless to say, they have been a hit!




And second finally, Jake has started imitating the vacuum (you may need to turn your volume up to hear the "vroom vroom"). He also seems to have figured out how to ham it up for the camera...

Hibernation, Flu, H1N1, and RSV

As the weather turns cooler and swine flu seems to be taking over the state, Jeff and I are realizing we are going to have to put the little bear back into hibernation for another winter. There seems to be some consensus that by age 2, most preemies lungs are much better developed and able to handle sickness better, so hopefully next winter we can be a little more adventurous. For now, we are worried about seasonal flu (although less so because Jeff and I got the flumist in late August and Jake got his shot two weeks ago), H1N1 (no word when they will have vaccine here), and RSV.

Those of you with exceptionally good memories may remember Jeff blogging about RSV (respiratory syncytial virus) last year. For those of you with a memory like mine...RSV is a virus that nearly every child has had by age two. For full-term babies, RSV typically isn't any worse than a common cold, but for preemies, RSV is quite serious. Babies born earlier than 36 weeks are at the highest risk for serious complications from RSV such as pneumonia, bronchiolitis, and other sometimes fatal complications. RSV could easily cause Jake to become so sick he needs to be hospitalized - which is very hard for people (us included) to grasp when he looks so healthy.

To make things even more difficult, RSV is spread very easily through physical contact, in the air via a cough or sneeze, or by touching an infected object. It can live as long as six hours on hands and up to twelve hours on objects.

Frequently people ask us - “Can’t Jake fight it off and build up his immune system? Kids need to get sick, right?” The simple answer is NO. Since Jake was born so early and at such a low birthweight, he did not acquire the necessary immunities to fight off infection. In the NICU Jake spent less than 72 hours on the ventilator, but he spent several weeks on CPAP and on a nasal canula - meaning his lungs were underdeveloped and not strong. His lungs are still not the lungs of a 17 month old (his actual age), and probably not even the lungs of a 14 month old (his adjusted age).

RSV is so serious that our insurance companies have (tentatively) approved Jake for a second year of receiving the Synagis shot. Synagis is not a vaccine for RSV but rather it contains the antibodies to help fight off RSV. The shot costs upwards of $1,000 each time it is administered. Jake will get a shot every 28 days for 6 months or more. As we all know too well, insurance companies do not spend thousands of dollars unless they have quite a bit of evidence that shows it's cheaper for them to spend the money now than to spend it later. Translation: BCBS and Cigna are pretty sure that $6,000+ in shots is cheaper than Jake getting RSV.

So with all that said, we are asking that if you think you may be at our home this fall/winter, that you:
1. Get a seasonal flu shot.
2. Get an H1N1 flu shot if you can.
3. Refrain from coming over if you (a) are sick, or (b) were sick and have not been symptom-free for at least 5 days, or (c) live with someone who is sick, or (d) have been in close contact with someone who is sick.
4. When you arrive, please wash your hands and use hand sanitizer liberally (anyone who has been here knows that Jeff will insure this happens :)).

Please know that we don't mean to offend anyone, but we wanted to provide an explanation as to why we're so paranoid (still). Trust us - we would like nothing better than to not have to post messages like this, but that's not our reality. Thank you all for understanding! Stay healthy, and enjoy some Jake photos!

Running through the pumpkin patch (at least trying to)

Thanks (??) to Brian M. for introducing him to funnel cake

Cousin Todd helped share the wonders of ice cream

It's not all food - he loves the water too!

Living up to his name

As you could perhaps tell from the Bald Head Island photos, Jake has turned into a Walker. He took his first steps in early August and really perfected his moves on the beach at Bald Head. He now walks almost all of the time. Here he is in action...



Preemie boys are notoriously late talkers - Jake seems to be fitting the rule there. He's not saying any words with consistency, but he does know what a few words mean - ball and dog being top on the list. He's also developed a sweet tooth - another fine Walker (and Raymond!) trait. We are trying to teach him the signs for "food" and "more," but he seems happier to just grab at what we have (a not-so-polite "sign" but a sign nonetheless) or go find food himself. Here he is after discovering a plate of brownies in the fridge...



And finally, a return of the monthly photos. He's gaining on Bernard!

But he doesn't like to sit still for long...