A Little Something Extra

Tuesday, January 5, 2010

Micah is 2 years old today!

Love this kid!!! Time flies... It's hard to believe it's been two years, but given the fact that we've had another baby since then who will be one in a month, I certainly hope it's been two years! :-)

My blog posts around the time of Micah's birth were random at best, or I would link to a specific post. But I should probably write Micah's birth story one of these days. Suffice it to say, January 5th 2008 did not go as planned. Micah was born early (34 1/2 weeks), following a long spell of pre-term labor due to his duodenal atresia (the first part of his small intestine was not connected to the second part, thus causing an overabundance of amniotic fluid). I was huge, even after my perinatologist had done two amnio reductions (draining a total of 2.5 liters of fluid out of the amniotic sac... I'll spare you the gory details).

I was about to get sent by ambulance to Milwaukee for the delivery, but my labor progressed too quickly. And it's a good thing I wasn't moved (I wrote about that a bit before). Micah was born via emergency c-section at 2:32pm. He was beautiful! I saw him briefly before he was taken to the NICU. The next time I saw him was about 3 hours later. He was "packed for transport" for his trip to Milwaukee, so I still couldn't hold him. It was then that I saw his left hand. It was really hard... learning about that, having only a couple of minutes with him, and then not seeing him for almost 3 whole days.

Enough about that. You'd rather hear about his life NOW, right? Micah has the most charming and engaging smile. His laugh is hysterical... sort of hoarse, maybe due to his tonsils being large? He snuggles right into your shoulder, almost like he melted into you. He gives kisses (by clicking his tongue rather than pursing his lips, but it's still sweet). He is very much a mama's boy, which is both honoring and overwhelming at the same time.


Micah has orthotics to give some support to his ankles now, and that necessitated a new shoe purchase. With his orthotics on, he needs a size 4 extra wide, which is Matthew's shoe size! See pic below for the shoes. They're really cute, like baby Doc Martens (think leather monkey boot, if you're familiar with Docs). They go a bit above his ankles.

Micah still receives about 90% of his nutrition through his feeding tube. He's taking small quantities of pureed baby food (stage 2 mostly) on a baby spoon. But he won't let any other item close to his mouth, including finger food or a cup. Even if he was taking in a huge volume of food orally, he couldn't go without the feeding tube because he will not allow fluids to pass his lips. We've been on the feeding tube journey for almost 2 years now. It stinks.

Micah is pulling to stand. He recently started moving his feet a bit more. I'm hoping to see him cruise the furniture more soon. He also recently started taking a few steps forward while holding (tightly) onto someone's hands. And just today, as he was standing holding onto my hand, he briefly and willingly let go. He was only able to stay standing for about 2 seconds before sitting down, but it's huge that he felt comfortable enough to let go (without me prying his fingers off my hand).

What have I left out? Just that this little boy brings a ton of joy to our lives. I will not say it's been an easy two years. And I'm still not in the camp of those who are actually glad that their child has Down syndrome (who knows... maybe I would be without all the medical junk... but maybe not then either... would I take away that extra chromosome if I could? Probably. Am I the only mom of a kid with designer genes who would? I'm pretty sure that I'm not, though expressing these feelings might get me blacklisted! Truthfully, though, I would really miss the amazing friends I've made in real life as well as in the blogosphere who share in our journey, and I'd miss out on some amazing life lessons that God has taught me and continues to teach me through Micah). I love this boy. And I wouldn't trade him, so don't ask. :-)

Happy birthday, my darling boy.

24 comments:

The Lehnick Family said...

Happy Birthday Micah! Love the new shoes...we are shopping for some new ones this weekend, after we get our new orthotics on Friday...

Monica Crumley said...

Great post, Jennie. Micah is adorable! Love those shoes. You won't be "blacklisted" for having those feelings. I had them early on and worse. But the love you have for him is undeniable and you have had quite a few medical issues to deal with in two years. Still, you persevere and you continue to love this little guy. That's what matters. Happy birthday to the big 2 year old!

Kris said...

Happy birthday, beautiful boy!!! What a charmer you are! Give your mom and dad a big clicky kiss! LOL

James 1:27 Family said...

Happy Birthday, Micah! I have been in love with him since he was born and I've never seen him in person. I'm sure you and Mark are overflowing with blessings. I think it's totally normal for you to wish he didn't have down syndrome. I wish my son didn't have to endure a deadly blood disorder when he was a baby. I wish our new daughter didn't have a multitude of things she has. If you get grief for saying that, I'm sure it's from people who deal with much less than you do. You rock, Jennie! Love hearing the updates!

Love,
Amy

Jonathan's Mom said...

He is just precious! Happy b-day, Micah, and happy 2nd anniversary of this part of your parenting journey, Mark and Jennie. Jonathan still prays for Micah daily. I'm so proud of him for standing. That is awesome! He'll be cruising around before too much longer!

Love,
Amy

Emily said...

Happy Birthday to you sweet boy! There's no way I would "blacklist" you for your feelings. We are all entitled to our own opinions. We are all being taught some amazing things with our sweet ones, but it can still be very hard and challenging. I don't want to wish away Justin having Down syndrome, but I would wish away a lot of the challenges he has and will face. Great post my blog friend!

Melissa Tiedt said...

Happy, Happy birthday sweet Micah!! WOW, I cannot believe how big he has gotten since I last saw him! Such cute pictures! Hope all is well Jennie... I miss you guys!
Melissa

my family said...

Happy birthday precious boy!

Kelli said...

Yay! Happy Birthday Micah! You are super super adorable and I fall in love with you every time I see your picture! Keep up doing all of the great things you are doing!

And by the way Jennie....I can totally picture Micah snuggling in after your description...so wonderful!

Thanks for sharing!

Rena said...

Happy birthday, Micah! I remember when he was born. Jennie, through you I have learned so much about designer genes. I worked with a colleage for a few years who had a daughter with Down's and though she was open about the challenges she faced, it was kind of in a way that she knew people wouldn't quite understand. And really I didn't. You have so much courage and I have learned so much through you. I remember you talking about your early feelings and now I see you as an advocate, a leader really. Micah is a ray of sunshine and I look forward to seeing how he continues to grow.

Kelly said...

Happy Birthday sweet Micah!! Jennie, I don't get on fb often but happened on it this evening and wept as I read your entry. I amazes me that two years have gone by. Micah's picture is too cute - he just looks so lovable and sweet. Enjoy the celebration. We miss you guys!!

Kim Rees said...

Happy Birthday Micah! You are one sweet little boy! Jennie you are amazing and you have every right to your own opinion. You still have me as a fan! Hey we definitely can relate with the tube feeding issues. I can't believe how alike our kids are in that department. I would love to see what one of those stretchy bands looks like that you talked about on my blog. Email me at ksrees@mac.com and then I will email you back my address. Thanks for all your helpful information! I really appreciate it!

Anonymous said...

Your blog keeps getting better and better! Your older articles are not as good as newer ones you have a lot more creativity and originality now keep it up!

Michelle said...

Happy Birthday, dear Micah!!

sara p said...

Micah... your two!!! Happy Birthday little man:) all the amazing things you have been up to, i wish you where closer so i could see you do them in person:( but i love seeing pictures your getting so big!!

and mom, no way would you ever be blacklisted for your feelings... we should all be able to say how we feel without judgement. in a way i would have to say i agree, if i could take away the bad things i think max will feel due to have Ds i would in a heart beat, i know that micah has more health problems due to Ds and if that was my child, i think i would be right with on if there was a choice to take hurt like that away... what mom wouldn't?

but agian this day is a happy one... happy birthday Micah:)

doozee said...

I love your honesty... and of course, your choice in names (my boy is also Micah!) - my little girl who is yet to be born tested positive via amnio for Ds.

Happy Birthday to Micah! And to Mommy!

- meriah

ATLKrafts said...

Yeah Micah! Happy Birthday buddy!

Pallavi said...

Happy Birthday Micah! You are so sweet...

Sally Carter said...

Happy Birthday Micah! What a cheeky grin! Great blog, glad you're all doing well.

thetaooftulips said...

Happy Belated Birthday to Micah! What a little darling he is!

Jessica said...

HAPPY (belated) BIRTHDAY MICAH! You sure are an adorable 2 year old.

Kim said...

Happy late birthday! He is such a cutie!!

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Kelly said...

What a CUTIE!!