Daddy's Little Girl

Since having Leah and finding out how special she is, Chanae and I have looked for blogs talking about raising children with Down Syndrome. There are a ton out there. Every one has a unique perspective from different parents. However I have yet to see one perspective and that is the Daddy view. I think it is due to the fact that Mom's have a special connection with the children and are able to eloquently describe what it's like to have a special child. So I want to put in my two cents. This post may be a little scattered but that is how dads are. So this is the voice of a new Dad who has a Daughter with down syndrome.

This last week I worked two 15-hour days due to a big conference held at work. It was good to get the overtime but I missed my girls. On Sunday, Chanae went to Rupert to go to her parents' mission farewell and so the whole day it was me and Leah. It gave me time to reflect about how much my life has changed since meeting this little girl.

Spending the day with Leah made me realize two things. 1) Chanae is the most amazing person in the world to do this every day. And 2) I go to work because I have to not because I like it more than hanging out with Leah.

One of the biggest things that I heard when telling people that Chanae was pregnant was "Your life is going to change." What was funny about this statement was how it was said. There was a negative tone to this, like "live it up while you still can because you will never get this awesome childless life back."

Though it is true that my life has changed since Leah, in more ways that I had thought that it would, this change has been good.

Having a baby is awesome!!

Part of the reason that it is awesome is because you have so many opportunities to feel accomplished. Before I felt like I needed to publish a book or find a cure to cancer in order to get a feeling like I have accomplished something. Now all I need to do is get Leah to burp after she eats. I find myself telling Leah good job for everything she does. In fact I say it so much that I caught myself telling her bottle "good job" when it warmed up.

Being a parent lets you be selfless. You look at yourself and see how strong and independent you are and then look at your child and you forget yourself completely.

I do miss being able to go out and not have to worry about hooking Leah up to her monitor and making sure her oxygen is on the right setting and that she has her diaper bag but those are small prices to pay for the feeling that I get when I walk into the house, say Hi to Leah and she wakes up because she heard my voice.

Leah is defying all odds. She is getting bigger and healthier by the day. She has rolled over a few times. I think it might be the fact that she isn't a huge fan of tummy time and has figured out that if she can roll over to get out of it.

Leah is a curious baby. She is constantly looking around trying to see what is going on behind her.

A lot of people say that they like parenthood so much they wish that they had done it sooner. Not me. If we had had Leah at any other time we would be bankrupt and I would be failing my classes right now.

Let me explain. In college we had a class where we were told that there is no excuse ever to put off having kids. It was the first semester after being married and there were a bunch of single students telling us that we should have a baby. We though about it and discussed it and prayed about it and felt like we should put it off.

After I graduated we moved to Utah and were kicking ourselves for doing that when I couldn't find a job. We had to get on Medicaid because nobody would insure Chanae. 

When Leah was born the attending pediatrician who first looked at Leah has a brother with Down Syndrome and was able to diagnose Leah and help us see how much of a blessing she would be.

Leah was born in a hospital in Provo. This hospital has a Cardiologist who works at Primary Children's but splits his time between there and Utah Valley. He was able to see Leah and give us explain to us what her heart condition is.

Leah was in the NICU for 8 days. Even if we had been on insurance and they did an 80/20 payment plan with us we still couldn't afford her 2 Eco-cardiograms, lab work, and 8 days in the NICU. Lucky for us we had Medicaid which would cover everything.

We had family close by for comfort and help. I have an aunt who works in the hospital where Leah was born and one of the most comforting things was when she came up and told us how great all of our doctors were.

A lot of time we look for miracles as being an event where seas part or water is made into wine. I think that most of the time a miracle is a process. It starts months or even years earlier when we make a decision and don't know why and ends when you happen to be in the right place at the right time.

If you asked Chanae, before Leah was born, if she had ever seen me cry she probably would have laughed and said no. In a way I prided myself on being able to keep my emotions in check. I would watch a movie and compete with the writers to see who was stronger their plot, acting, dialogue and music or my emotions and I was really good at winning.

Since Leah that has all changed. While watching the opening ceremonies I saw the Deaf Choir singing the National Anthem of Great Britain and got choked up because I saw how amazing these kids with special needs are. I can't make it through certain songs in church sometimes and I was a mess the first week after Leah.

Chanae would always joke that my heart was broken and that's why I would never cry. Well it looks like Leah's broken heart fixed mine.

Now about "The State of Leah"

We are alternating weeks with doctors between her pediatrician and her cardiologist. She almost weighs as much as most kids do when they come out. She hasn't broken 7 lbs yet but this might be the week. She is starting to find her smile.

Next month we are going to go in to get our genetics tested. I really hope that I'm the one that has trans-located genes.  It would kind of make me one of the X-men without the really cool powers. We will keep you updated.


Blessing Dress

Naked Baby Picture (Every child needs one)

Quidditch  Robes (More HP pictures to come in the future)

Last week we took pictures of Leah without here cheek patches on. I didn't know she could get cuter than she already is but without those patches...well you'll see from the pictures.

Feel free to comment if you have any advice for new parents, or just want to tell us how cute our little Leah is. :-)

Thank you for all your words of encouragement and prayers on our behalf. The doctors are amazed on how well she is doing so know that your prayers are heard.

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:

 

Me and my gal!

Go cougars!

David sure loves his little Leah.

The day Leah came home from the NICU!! We were so excited to finally have her home. And she looks so small in her crib.

Grandma and Grandpa Landeen just couldn't get enough of their first grandchild.

Grandma and Grandpa Wilson love their newest granddaughter.

Leah's first day at the park. She slept through most of the adventure but it was still fun to take her outside for a little bit.