Landeen: Our Little Leah

Our little Leah is now 3 weeks old! I can't believe time has gone by so fast. The past 3 weeks really have just been a whirlwind of visiting the NICU, doctor's appointments and researching as much as we can about Down syndrome.

One fascinating thing we learned is that Leah was diagnosed with a unique kind of Down syndrome called translocation Down syndrome. That means that her third chromosone 21 is hooked onto another chromosome (like chromosome 14 or something). This kind of Down syndrome is rare (it occurs in about 1% of every Down syndrome diagnosis). Translocation Down syndrome is also the type of Down syndrome that is usually passed through genetics. This basically means that one of us could have the usual amount of chromosomes, except two of our chromosomes are hooked together, making 45 chromosomes instead of the regular 46. If that's the case, we wouldn't show any signs of having Down syndrome or anything because we still have two of each chromosomes, it'd just mean that when we have kids, the two chromosomes that are attached could transfer over to our kids to give them an extra chromosome. I hope I'm explaining this alright. David is much better at the medical stuff but I thought this was interesting and wanted to share. There is still a chance that it just happened, but there's also a big increase in the chance that we might have more children with Down syndrome. We're going to take a genetic test next month to see what the deal is and I'll keep you all posted on how that goes.

David is really hoping that he's the one with the translocation genetics because he could brag about only needing 45 chromosomes when everyone else needs 46. Then he could be unique like our precious little Leah.

Fun Facts about Leah:
Leah loves to sleep—just like her mom. She sleeps so well that we often have to wake her up to feed her or else she'd just continue sleeping. One night, we decided to let her wake up and let us know when she was hungry. After the 6th hour, I finally couldn't wait any longer and woke her up. She probably also sleeps longer because of her heart condition and low oxygen levels but I like to think it's because she's related to me. She also loves to sleep with her arms up by her head and her feet out of the blanket. Often, when we wrap her up tight for a nap, she starts squirming and kicking her legs until she gets both arms and legs out. It's really cute.

Leah loves to show off to her daddy. She gives him the best burps after he feeds her. I usually have to work for her to burp for me but as soon as her daddy tries to burp her, she lets out a good one. He's always so proud. :-)

It's scary to change Leah's diaper. She likes to wait until we're in the process of changing her diaper before she relieves herself. And when she does, it goes flying everywhere! I always thought you only had to worry about boys getting you, but Leah has proved that girls are just as dangerous.

Leah likes to cuddle with her mom. Sometimes when she gets the hiccups or is really tired but can't fall back asleep, I hold her close to me to cuddle and she snuggles right up to me. She's not too fond of cuddling with her daddy though. I think it's because he's too bony. I usually have to put a pillow on his shoulders when I cuddle with David and I think Leah has discovered the same thing.

Leah makes cute noises when she sleeps. I don't know if it's because of the oxygen or what but she makes the most adorable sounds when she sleeps. Sometimes she coos. Sometimes she snores. And sometimes she makes little wheezing noises that makes the same sound a balloon makes when someone has pinched the opening and is slowly letting the air out. It's fun to sit and listen to her when she sleeps.

Leah is very good at getting the oxygen tubes out of her nose. She reaches her tiny little hands up and grabs at the tubes until she gets them out and then starts screaming because they're in her eyes or her mouth. She's even figured out how to get them off without her hands. She just rubs her head a certain way and the tubes come out. We constantly have to fix them. Needless to say, we'll all be so excited when Leah doesn't need oxygen anymore.

Leah loves her tongue. She's always sticking her tongue out at people.

Leah hates tummy time but is really good at holding her head up while her parents cheer her along.

Leah has a great scream. She usually only gets mad when she's in pain or really hungry but when she screams, you know you're in trouble.

Leah is very good at ignoring her heart monitor. David and I hate her heart monitor because it's so loud and annoying. It usually only goes off when it's been unplugged or something. It's pretty scary when it goes off in the middle of the night. We jump up and run to her room but Leah is usually still fast asleep. I think she got used to all the beeping noises at the NICU.

Leah has had more tests done than either of her parents combined. She's spent a whole week at the hospital and will likely spend another week there after her surgery in a few months. She's had 3 echocardiograms, an EKG, an x-ray, a chromosome test and much more. She's one tough cookie.

And, finally, Leah is already loved by so many people. She is so lucky to have family, friends and ward members looking out for her. Our family has been so amazing and supportive. They've offered so much help and advice already. We are so blessed to have so many loved ones who are so willing to welcome our sweet little girl into their hearts. Our friends and ward members have been amazing as well. We are so grateful for all the wonderful people we are blessed to know.

Here are a few pictures for your viewing pleasure: