At the top of the world

Or... at least at the top of Mount Timpanogas.

David and I attempted our second hike up Mount Timpanogas last weekend. Our first hike up Timp was last year with David's family.

 This year, we attempted it by ourselves.

David loves hiking and is helping me to enjoy it as well. After our hike last year, we made it a goal to try to hike Timp again this summer. We knew it might not happen because we were planning on starting a family soon but we were hoping it might work at the end of the summer—after I'd recovered a bit.

So, three months and two days after Leah was born, we hiked Timp again.

We hiked 18 miles in 10 1/2 hours.


It was really tough.


We started hiking at 4 a.m. so we needed flashlights to see where we were going. The sky was so clear and the stars were so bright. It was really pretty. And, as the sun rose up in the sky, we saw the vibrant colors of autumn all around us. It was absolutely gorgeous!

But I was also really tired. Last year, I worked out in the gym 3-4 times a week and was in pretty good shape. This year, I'd recently had a baby so I haven't really been out much and my exercise has gone down to basically walking a few miles each week. So I was in a lot of pain by the end.

David was so great. He coaxed me along the whole way. He even had to bribe me with the promise of Coldstone ice cream in order to get me to the top. But we did it. We hiked all 18 miles and lived to see another day. :-)

 Here we are at the top of the mountain. We were both exhausted by at this time and we still had 9 more miles to go. Luckily, it was all downhill hiking and the view from the top was incredible. Otherwise, I might have refused to go on.

Here is a picture of Utah County. Can you see the red trees on the mountain? Beautiful, huh? We also saw a bunch of mountain goats as well.

My plan is to get in better shape for our hike next year—yes, we are already planning our next hike to Timp. We're going to do a lot more little hikes to work our way up to this one and I'm going to take Leah out on walks a lot more. We're not sure if we'll be brave enough to take Leah next year. She may be too small still and it was great motivation going down the mountain knowing that the faster we walked, the sooner we'd see our baby girl again. Either way, it's going to be another great adventure!

Thanks again to Grandma Landeen (Meemaw) for taking care of Leah while we conquered this mountain!

Leah meets world

With Leah's heart condition as serious as it is, we've been really careful about where we go and who can hold her. We've even steered clear of a few family reunions, social activities and church. So for the past few months, we basically only ventured outdoors for Leah's weekly doctor appointments and the occasional trip to visit family. We've felt silly a few times for being so overly cautious about Leah, but our doctors have told us that if she gets sick before her heart surgery, it could be really dangerous for her and she could end up back in the hospital. We definitely don't want to go through that again... or at least more than we already have to in the near future. :-)

It's been kinda hard to be inside all day, especially with the beautiful summer we've had but when I look at this adorable face, I know it's all worth it.

Isn't she so cute?!? She's getting so good at holding her head up!

 
We've already got a list of  things we want to do and places we want to take Leah next summer. And, with Leah's Down syndrome, we can get a Golden Pass that basically lets us get into any park for free or half off. Nice, huh? We definitely plan on making the most of that pass in the future.

But, we just couldn't let the summer go by without taking Leah on a few adventures. The past few weeks, we've taken Leah to my niece's baptism, jet skiing, fishing and hiking. It was fun to see most of my family at the baptism and it was fun to let Leah meet some of her cousins for the first time. And jet skiing was a blast. We put Leah in her playpen with a blanket over the top and she slept most of the time while David and I were able to go play on the jet skis. We really appreciate Deb and her family for letting us join their party. I don't have pictures of the baptism or jet skiing, but we did get some cute ones of Leah helping dad catch a fish and her first hike.

We went to Silver Lake with David's family on Labor day. Leah didn't like the sun in her eyes.

With her daddy's help, Leah caught her first fish while sleeping peacefully. Now that's talent!

Last weekend, we took Leah on her first hike to Stewart Falls in the Provo Canyon. It's a pretty easy hike of about 4 miles total with a really pretty waterfall. It was the same day as the BYU vs. Utah game so we wore our BYU shirts. Also, in this picture, some of my hair was getting in Leah's face so she's trying to grab it. She eventually got it and gave it a good yank. What a little stinker!

David sure loves his baby girl!

David's mom hiked with us. Leah loves spending time with her "MeeMaw"

We hiked to Stewart Falls the weekend before Leah was born. (I was trying to help induce labor and was curious to see if I could do the hike at 38 weeks.) It probably not my smartest move but it was fun. Also, my water broke a week early so it must have helped move things along quicker. I look like such a rolly-polly here.

So, of course, I had to pose on the same rock when we did the hike almost 3 months later. It was so much nicer to do this hike with Leah in a backpack than inside my stomach.

Next weekend, we're going to attempt hiking Timp again. I was in great shape when we hiked it last year, but this year I haven't exercised as well so I'm a little worried. But it should be way fun. But we plan on leaving Leah at home with her grandma while we attempt this hike. I don't think the altitude change will be good for her this year so she'll just have to wait till next year to hike to Timp with us. :-)

Leah's new trick

So I wouldn't be surprised if you're all sick of hearing us write about little Leah so much, but, really, who wouldn't be obsessed with this adorable face?

Leah's aunt, Melissa, crocheted this beautiful dress for her.

Ever since Leah came into our lives, it's seemed like one adventure after the next—at first it was hard and stressful but lately Leah has blessed us with some fun adventures. She's definitely found her smile. She smiles at everyone all the time except for when she gets mad at her dad but that is sometimes cuter than her smile.

Leah is finally gaining weight! She's up to 7 lbs and 5 ounces. We have to keep track of how much she eats and we're supplementing her milk with formula but she's finally gaining weight very well. We love seeing those cute little fat rolls start showing up.

We've been working hard to perfect tummy time. She usually works on it a few minutes a day and her neck is getting really strong. We also play this game where we put our hands by her feet and she pushes against them to propel herself forward. She's really good at this game. Leah really loves moving around and being active.

Finally, whenever we put Leah on the floor to play by herself, she's constantly trying to roll over. I don't know why she does this because usually when she does roll over, she gets mad that she's stuck on her tummy. It's so cute to watch her working so hard on it all the time. Most of the time her arm gets in the way and she gets frustrated. She'll get so close to rolling over but her arm will be in the way and she'll roll back over to her back. But she's gotten a lot better at sticking with it and making it through. Here's a video of Leah finally getting that arm out of the way:

Now if you watch this video and are saying to yourself "My child is older than 2 months and he/she hasn't rolled over yet." Don't worry Leah is kind of like an x-men. She has a genetic mutation that allows her to be extra-special. Most likely your child will learn how to read or walk or talk before Leah but she has the rolling over powers.

Last, we want to point out some silver linings of having a child with special needs.

First - You can brag about your kid without getting other people mad at you. Leah is an orange in the midst of apples.

Second - An iPad is in our future. There are some great apps for special needs children that help them learn how to read. The iPad is very easy to learn how to use and has been used a lot while working with kids who have down syndrome. David has been working really hard to convince Chanae to let him get one and he finally found a good enough reason for her to agree.

Third - With all the training that we are getting with Leah, having more children doesn't scare us as much.

Leah 2.0: Updated and Wireless

It's been a while since I wrote anything and a lot has changed. This post will have a lot of information in it. Hopefully you can remember your high school biology because we learned even more about Leah's genetics.

Leah has made some big milestones. First, she finally weighs more than 7 lbs. That means that she is as big as most kids are when they are born.

Second, she is off oxygen!

It's amazing how happy a baby can be when they don't have stickers on their face and a tube up their nose. Leah is beginning to smile more and scratch her face less. We are all very excited. We were expecting her to have to be on oxygen until the surgery (6 months). But at our last appointment with the cardiologist, he decided to check her oxygen saturation levels without the extra oxygen and see how she was doing. They put a little monitor on her foot and turned on the machine and it said that it was at 70. It should be in the 90s. They also didn't like how low her heart rate was so they decided to try a new monitor. As soon as they put it on her it showed her in the 90s. We fed her while they monitored her and she did great. We did an over night test a few days later (which she passed with flying colors) and now no more oxygen. We are keeping her on the heart monitor just to be safe but that doesn't bother her so much and we are no longer tripping over chords everywhere we go.

We blessed Leah in church last week. It was interesting because usually when you bless a baby you talk about how they will get married and go on a mission and have kids and all that stuff but Leah might not do any of that. So she was blessed that she can be happy and know how much we love her. It was simple but applicable to her.

Ok, now on to the complicated stuff.  In the last post, we mentioned that Leah had Translocated Down Syndrome. This is what we were told. It means that her extra 21 Chromosome was attached to another Chromosome. Yesterday, we went to see a Geneticist at the University of Utah Hospital. She asked me what we already knew and I told her. She corrected me by informing us that Leah has Down Syndrome and a Translocation. They are two separate things.

Let's start at the beginning. Our bodies are made of cells and the cells are made of Chromosomes. Each person has 46 Chromosomes. 23 from Mom and 23 from Dad. So we have 23 pairs of Chromosomes. Each pair is numbered 1 through 23. Leah has 47 Chromosomes—23 from one parent and 24 from the other. So she has a pair of each chromosome but she has 3 of number 21.

Now on to her translocation. Translocation is when chromosomes get mixed up. Part of 2 Chromosomes switch places. You still have all of the Chromosomes that you need but they just aren't in the right place. In Leah's case part of her number 1 is attached to her number 4 and part of her number 4 is attached to her number 1.

In a normal person, their chromosomes would look like this:

1  1    4  4
1  1    4  4
1  1    4  4
1  1    4  4
1  1    4  4

A perfect pair of 1 and a perfect pair of 4.

Leah's genetics look like this:

1  1    4  4
1  1    4  4
1  4    4  1
1  4    4  1
1  4    4  1

Notice how all the chromosomes are there. They're just not in the right place.

Now Chromosome pairs are not found side by side like this but it is easier to understand this way. This does not affect Leah's down syndrome whatsoever. But here is why it is important: It is very common for this translocation to be passed on genetically. Either Chanae or I could have this same translocation in our body. We don't know it because we have the different Chromosomes that we need they are just a little mixed up. However, like I said, children get 23 chromosomes from dad and 23 from mom. So in order to give these 23 chromosomes, a cell made up of 46 needs to separate. When it separates it is completely random which chromosome from the pair is given away.

So let's say that one of us does have translocation in our genetics. When the cells separate and then recombine to make a baby there are 4 different combinations.
   
 Parent 1          Parent 2(Translocated Genes)
1  1    4  4       1  1    4  4      
1  1    4  4       1  1    4  4      
1  1    4  4       1  4    4  1
1  1    4  4       1  4    4  1
1  1    4  4       1  4    4  1

     A
1  1    4  4    In this case all 4 good chromosomes came over and
1  1    4  4    there is no translocation in the baby
1  1    4  4
1  1    4  4
1  1    4  4

     B
1  1    4  4   In this case 2 good and 2 abnormal came over but   
1  1    4  4   there is no effect. Translocation has occurred
1  4    4  1   but it is balanced.
1  4    4  1
1  4    4  1
                  

   C
1  1    4  4   This one has too much of 1 and too little of 4.
1  1    4  4   Results in unbalanced transloaction and can
1  1    4  1   cause severe birth defects or most-likely a
1  1    4  1   miscarriage.
1  1    4  1

   D
1  1    4  4   This one has too much of 4 and too little of 1.
1  1    4  4   Results in unbalanced transloaction and can
1  4    4  4   cause severe birth defects or most-likely a
1  4    4  4   miscarriage.
1  4    4  4


I hope this doesn't confuse you too much.

It is not guaranteed that it is genetic. This could have happened randomly and Leah is just a genetic marvel like the x-men but that is rare. If we get tested and find out that one of us have it then our siblings may also have it. That is where the problem is. To get tested it is about $3,000 a person and that is with a 30% discount. Medicaid doesn't cover it. But what are we getting tested for? We are testing to see whether we will have a hard time getting pregnant and what our risk of miscarriage is. Won't that kind of reveal itself to us as time goes on? It is a tough decision that we haven't made yet.

We also found out that our chances of having another baby with Down Syndrome is 3.5 times higher than the average person. The only reason for that is because statistics have spat out that number. In reality we don't have any different odds than anyone else except for that if it can happen once it can happen again.

2 months ago I had no idea what Down Syndrome was, how many Chromosomes were in a human cell and I hadn't even heard of translocated genes. People always said that children will teach you a lot but this wasn't exactly what I had in mind.

Still, Leah is the cutest little girl and we love her more than I could have ever imagined. This week I went to scout camp for the week and I leaned 2 things. First I leaned that I really miss my girls when I am away and second I learned that girls are way better than boys.

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.

Leah Marie Landeen: The State of Leah Marie

Here is a story of how our little miracle came to be...up until now. A lot of this stuff you may have heard from Chanae already but hopefully this will put everyone on the same page.

June 19th (Tuesday) Chanae's water broke. We were watching TV and she thought that something was off so we called the doctor and explained that she was a little wet. He said it was a possibility so we went in. They did a test and it came back negative so they decided before sending us home they would examine Chanae and during the exam her water broke so they induced labor. They told us 10 hours of dilation and two hours of pushing. We started at 11:00 pm so they estimated Noon on the 20th (Wednesday). Everything was going great and around 5 a.m. the nurse came in to check out Chanae. Then another nurse came in and then another and then a doctor. They were moving Chanae and positioning her and it was around the time that they started her pushing that they noticed that I was there and sent me to the right place so that I would be front and center to see little Leah come. 2 minutes later Leah was here. It was amazing, I cut the cord and they washed her and weighed her. 5 lb 4 oz at 17.5 inches. They explained that what had happened was that she slid down and got the cord wrapped around her neck. This caused her heart rate to drop and they needed to get her out.

She was perfect. That's what they told us the first day. We enjoyed every minute of holding her and cuddling her and seeing her do all of her magic tricks like opening her mouth and eyes and breathing and making faces and all of the things that new parents get to enjoy.

Thursday morning we met with doctor Cornish. He is a pediatrics doctor that works at the hospital. He explained that they wanted to do some tests because full term babies shouldn't be that small. They were going to makes sure that her heart was OK and draw some blood and everything like that. He also explained that one possibility for her being so small was that she could have Trisomy 21 also known as Down Syndrome. He answered questions but also said that it was possible that she was a small baby and that's that.

Leah had an Eco-cardiogram that afternoon. During the exam we asked the technician if he saw anything and he said there were a few issues. We later learned that the reason that he didn't tell us anything more was because he wasn't allowed to tell us. He took the information to Dr. Hoffman who is a heart specialist. He came and told us that Leah has a Congenital Heart Defect. He then had to leave and finish clinicals. He came back later and explained more.

Leah has 4 issues with her heart. She has 2 ASDs and 1 VSD she has a PDA and her Aorta artery is a little smaller than it should be. We will start with the ASD and VSD. Your heart is divided into 4 chambers. there is a left side, a right side, a top, and bottom. Leah has two holes in between her top right and top left chambers and one hole between her bottom right and bottom left chambers. What this is doing is making her heart work harder to pump blood throughout the body. She gets tired faster and is eating less because a baby's main form of exercise is eating. Any energy that she got while eating was being used up as she ate. She was sleepy and tired. This is a very common heart defect in babies with Tricsomy 21 (Down Syndrome). She will need surgery to fix this later on in life when she is stronger, probably around 6 months. Many have asked if these will heal on their own. It is possible but not likely. Some babies are born with this same defect where they have some small holes because the heart isn't done forming. Leah has large holes they call them canals. So they will have to be fixed with surgery. After that, problem solved, and we have a girl who will be just as energetic as her dad.

Ok now on to the PDA and Aorta. Before a baby is born they don't need to use their lungs. So no blood needs to go there to get oxygen. Your heart has a shortcut that takes blood strait from the chamber to the aorta and bypasses the lungs all together. When you are born that shortcut seals up and your blood goes to the lungs and then to the Aorta. Leah has a PDA which means that this shortcut didn't close all the way and blood is going into the Aorta before it has received oxygen. This is another reason why she is so tire. The doctors would give her some medicine and close it but there is another problem. Her Aorta artery is smaller than it should be. They are afraid that if they close the shortcut and have all the blood going strait to the lungs and then to the Aorta there will be too much stress on the artery and there will be more complications. The blood going through the PDA causes a murmur that you can hear when you listen to her heart beat. When the PDA closes the murmur will go away. They also explained that this is also a common defect in children with Trisomy 21 (are you seeing the pattern?)

If this makes no sense at all don't worry I was very confused too. Basically they don't want a traffic jam in her aorta so they are keeping the PDA open to relieve some of the stress until they know that the Aorta is strong enough.

With this information they took little Leah to the NICU (Newborn Intensive Care Unit)

Now, lets talk about Trisomy 21. Basic Anatomy. Each person has 23 pairs of chromosomes (46 total) when a baby is made it gets 23 from dad and 23 from mom making 46. This cell divides and divides and divides and keeps going until you get a baby. Each Chromosome is numbered 1-23. What can sometimes happen is the baby can somehow get 24 Chromosomes from one parent, because one of the chromosomes has already duplicated on its own, and 23 from the other making 47 instead of 46. This will cause the baby to die except for in a few specific circumstances. One of these is when the chromosome that has duplicated is Chromosome number 21. If this is the case the baby will survive but there will be some defects. That is how Down Syndrome occurs. They only sure way of testing is to draw some blood and send it to a lab and have them count how many Chromosomes are in the cell. If it's 46 the baby is normal if it's 47 then the baby is perfect because it has Down Syndrome or Trisomy 21. Once again I hope this makes sense.

The lab results are still out and we will get them back probably sometime next week. That's when we will find out if we have a normal baby or a perfect one. (Don't you just love the gospel?)

Now for the State of the Leah. Leah is currently hooked up to more wires than most computers now days. She looks more serious than she really is. They are constantly monitoring her pulse, blood oxygen levels, and respiration. They have a feeding tube going up her nose and into her stomach and an oxygen tube blowing into her nose. (See picture at bottom of page) They also had an i.v. to give her some more liquid but that is out now.

I hope you aren't freaking out because she is actually doing great. The feeding tube is so she can eat and rest at the same time. We still are feeding her 3 times a day but the rest of the time they just feed her through her tube and let her sleep (what a life!!!). The oxygen is also there to help her conserve energy. It actually isn't blowing extra oxygen, it's at the same amount as the rest of the room but just gives her a little blow up her nose. Doctors are great. They won't let you take a baby home that you can't take care of. When we take her home she will be stable. In order for her to be discharged she needs to eat enough consistently, not need the oxygen, and they will do another Eco-cardiogram to see how the PDA is doing. They said that it would be Wednesday at the earliest.

Today she ate enough every time we fed her. She is needing very little help from the oxygen and her murmur went away. Seeing as her Aorta artery didn't explode we think that this means that her PDA/Aorta problem is good. If it ever comes up again they can do a surgery to expand the Aorta artery. Tomorrow they will probably up her feeding to us feeding her 4 times a day and doing the rest by tube. So this is definite progress. Then we will go from there and eventually work our way up to her being fed by us 8 times a day. She needs to eat 33 ml every time and she is doing awesome. They said that with her heart condition eating is like running a marathon for her, so we have a very strong baby. Another great thing is that she is being upgraded from a warming bed under a heater (that they don't need to use) to a Crib. She has had 3 different beds in 4 days. Once again she's spoiled.

Being in the NICU has been an amazing blessing because we get special training from the nurses. We learn why babies sneeze and get the hiccups, around 15 ways to burp a baby, and tons of different positions for feeding. It's also nice because we get sleep at night (though we would gladly give that up if we could bring her home.) And every time we start feeling sorry for ourselves we look around and see the babies who were born 3 months early and have to be in bubbles with more tubes than Leah. It makes us feel grateful for what we have instead of focusing on what we don't have.  We can visit her at any time we want and can still hold her and feed her and change her diaper (though sometimes we let the nurses do that). We celebrate together for every little bit of progress and buoy each other when things don't work out like expected. 

Our little Leah is winning over the hearts of all the nurses that take care of her. She is this tiny thing (5 lbs) that loves to move. We have been blessed so much by ward and family members. We now have a better understanding of the power of prayer. With so much going on it is strange to think that Leah is only 3 days old. She has come so far in these 3 days and will continue to get better and better.

We will send out updates as they come and try to let you know as soon as her results come back for Down Syndrome.

We haven't put any of this on Facebook yet. But might in the future.

Thank you for all of your prayers on Leah's behalf. Miracles do happen.

We are excited for you all to meet Leah

David, Chanae and LEAH!!!!

UPDATE:

Leah Marie is Perfect
 
Since Leah has been born I have had to learn about what an ASD and VSD is, what a PDA is and where the Aorta Artery is. Plus why a baby might have Trisomy 21. Well the doctor called and it turns out that we are going to get to learn what it is like to raise a girl with Trisomy 21. Leah Marie Landeen has Down Syndrome.

I will admit that at first we were terrified. Even though we had been planning on it for the past few days it was suddenly real. We really didn't know what to think or expect. It was tough but by relying on the Lord and on Each other we were able to accept our lot and say come what may and love it.

Leah has been eating great today. The plan is that she is on a 8 hour on-demand eating schedule then tomorrow she goes to a 24 hour on-demand eating (on-demand meaning that she has to wake up and signal that she wants the food.) We will also learn about how to use the oxygen and monitors that she will come home with and then we get to bring Leah home to the most loving family (immediate and extended) in the whole world.

We understand that it will be hard but that's what being parents is all about. At least we don't have to worry about her ever coming home with her tongue pierced.

Thank you for all of your prayers on ours and Leah's behalf.

I am putting this on facebook so feel free to comment here or there.

Leah Maire, Chanae, and David.