3 months!

Happy 3 month birthday Lyla Jane!

Thank you for your prayers--she has been doing so well these past few days--she hasn't had a gagging episode for 3 days, she's eating better and sleeping better and just seems happier in general. She even giggled for the first time the other day--so cute.  I think the prayer and the Zantac are really helping!  She saw the eye doctor yesterday to check out her eye-crossing. He said her vision seems fine and she doesn't need any interventions just yet. He said the eye-crossing may resolve on its own and she'll be rechecked in 3 months. Not bad!

Here's the latest pics--she really likes her Bumbo chair. :)

That's enough of this Bumbo chair business--I'm tired.  :)

Janet & Lyndon

Lyla got to meet two new friends the other day. It was pretty cute to see little Lyndon's reactions to baby Lyla. :)

Janet, Lyndon and Lyla Jane

Janet & Lyla

Silly

Lyla and I were sticking our tongues out at each other. :)

13 1/2 weeks...

Well, Lyla is almost 3 months old now--it's hard to believe!  The time has flown.  She had another big doctor's appointment yesterday.  Here's the full report:  

• Lyla started out by getting an echocardiogram done to see how her heart is doing.  Dr. MacLellan, a pediatric heart specialist, read the echo and was glad to report that Lyla's heart is completely normal!  Thank you Lord.  It is pretty uncommon for a Trisomy 18 baby to have a normal heart.  That was exciting news for sure.
• Dr. MacLellan did notice, however, that Lyla's blood pressure seems to be higher than normal, so we are going to check it every week for the next few weeks to see if she needs to be put on blood pressure medication.  The docs suspect that the high BP could be related to the fact that one of Lyla's kidneys is not functioning.  The kidneys help regulate BP.
• Lyla also got labs drawn to check her kidney function.  The little peanut didn't even cry when they poked her. :)  We'll have to see how the lab work comes back, but her kidney function seems to be fine due to the fact that the one functioning kidney is compensating for the non-functional one.    
• Next, she had her appointment with her regular doctor, Dr. Jedele.  Lyla now weights 8 lbs. 14 oz.  She didn't gain as much weight this time because she has not been eating quite as much and we're not sure why.  To remedy this we are going to be making her formula a little stronger to increase her caloric intake.  The docs are going to try to find a growth chart for Trisomy 18 babies, to see where she's at.  We know that her growth will be slower than a baby without Trisomy 18, but she really seems to be doing pretty darn well! 
• I mentioned to Dr. Jedele that Lyla's eyes seem to be crossing more lately so we set up an appointment with a pediatric opthalmologist to get them checked out.  I guess if eye-crossing is not corrected early-on, it can cause permanent vision loss.  Joel's hoping that she'll have to wear an eye patch so she can look like a little Raider fan. :)
• We also discussed Lyla's gagging episodes again, and we decided to start her on Zantac which actually seems to be helping.  Yay! 
• Dr. Jedele also noticed that Lyla seems to arch her back a lot.  We thought this might be due to her gastroesophageal reflux, but it can also be caused by underlying neurological issues related to the Trisomy 18.  So we're going to try some tricks to help discourage the back arching.  

All in all, Lyla is still doing incredibly well.  She continues to amaze us and the doctors.  She just needs to work a little harder at everything, but she's used to that. :)  She's such a strong girl.  Please continue to pray for her progress and that mom & dad can be the best parents possible and make the right decisions for her.  Thanks!  We are so comforted to know that we are definitely not in this alone.  We have loved receiving so much encouragement in your prayers, cards, visits, phone calls, and just a general out-pouring of love.  We are humbled by it.  So thank you.  Lyla, Joel, and I send our love right back to you. :)  And we give the glory to Jesus--he continues to hold us in his loving hands.     

One more Papa pic  :)

I just had to get a photo of this outfit before she grows out of it!

Daddy and Papa Time

Lyla discovered that she really likes sucking on her fingers.

She's telling Daddy a little story. :)

Special Visitors

This past Thursday my Aunt Jane came to visit from Mankato.  We had fun catching up and of course, oogling over little L.  :)

The next day some more visitors came to meet Lyla--I like to think they're coming to see me too, but I know better. :)  :)  :)  This is my friend Tracie who lives in Florida.  She came with her mom Alice who lives in Marshfield and her Aunt Faith who lives in Rochester, MN.  They come from all over!  What a blessing they were--they brought lots of yummy food and thoughtful gifts.  A good time was had by all.

Tracie and Lyla Jane

Tracie also brought her little girl Ava (9 months old)--she's such a doll!

Papa

My (Jenny's) dad is at our house visiting this week.  He's been such a blessing to have around--doing projects and dishes and cooking and even helping with early morning feedings!  Lyla and Papa are buds.  She loves the sound of his voice and watches him very closely.  And she loves to fall asleep in his arms.  What a girl and what a Papa. :)  

Little Valentine

Faith

Joel & I have been going through the book of Mark with our small group at church.  Last night's study was focused on a section of Mark where Jesus was emphasizing the importance of faith.  He was trying to teach his disciples to have true faith in him.  I guess the topic of faith has been on my mind much more often lately because of Lyla's situation.  I ultimately know that whatever happens in her future, it is what God intends and He has a good purpose in it.  I also know that God still performs miracles.  I know that Jesus healed many people with just a touch of his hand.  I don't know what God is going to choose to do with Lyla, but I do know what He is capable of doing.  God could heal Lyla of her Trisomy 18.  So Joel and I are choosing to step out in faith and ask God to heal her completely.  We know that prayer is powerful and that God listens to His children.  This is so evident in Lyla and in how well she is doing.  So we just ask that you join us in that prayer for her.  Joel and I don't want it to be an act of desperation by us as parents who are madly in love with our child, but we want for it to be a deliberate act of faith in God by us as parents who are madly in love with our child--a love that God placed in our hearts. He knows our hearts and He is more powerful than we can fully understand.  He still does miracles.  Please step out in faith with us. 

Jesus said, "I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move.  Nothing will be impossible for you." Matthew 17:20       

More Lyla videos...

Smiley girl

Ignore me talking in the background on this one--I was talking to my brother on the phone while recording.  :)

Little Things

Here are just a few of the little things that we love about Lyla Jane...

The way she wrinkles her forehead like her daddy.

The way she snores (listen closely!)

Her pretty eyelashes.

The way her hair gets fuzzy after a bath.

Her baby mullet.  :)

Her big blue eyes.

Her elvish ears (note the tiny tuft of hair on her ear)

Her angel kiss birthmark.

We are amazed to know that the God who created the entire universe is familiar with each hair on her head.  He's familiar with every tiny detail that He took the time to create in her.

Matthew 10:29-31  "Are not two sparrows sold for a penny?  Yet not one of them will fall to the ground apart from the will of your Father.  And even the very hairs of your head are all numbered.  So don't be afraid; you are worth more than many sparrows."

Sleepy Time

We found Lyla like this--sound asleep and all stretched out.  What a cutie.

Little Angel

PS--Lyla rolled over from her tummy to her back the other day!  So thanks for your prayers for her muscle strength and tone. 

Grandpa John

Lyla just loves the sound of Grandpa's deep voice.  And recently we've discovered that one of her favorite places to fall asleep is right on Grandpa's tummy.  :)

Sweetie

Lyla's been into stretching lately--must be growing!

Practicing her princess wave :)

Lyla video

So I finally figured out how to get video from our camcorder and my phone onto the blog.  I'm super pumped about it!

Lyla's morning work-out.  :)

The quality is not great because I shot it with my phone, but I thought it was still pretty cute.

There will be more to come...

2 Months Old

Happy Birthday sweet Lyla Jane! Today she is 2 months old and is doing great. She had another doctor's appointment yesterday. She is now a whopping 8 lbs 2 oz! She gained exactly a pound since her last appointment. She is just about 21 inches long now too. Dr. Jedele continues to be amazed at her development and at how well she is doing. Lyla is our little tiger--she refuses to fit the mold. Thank you Jesus! Thank you for your continued thoughts and prayers. They certainly are being heard and answered. :)

Here's her progress report and some of the new things she's doing:

-she's cooing more and more (so cute!)

-she continues to have better head control--can hold the noggin up for a few seconds at a time

-she tracks items of interest to her (brightly colored things and familiar faces) with her eyes and head

-she's starting to half-smile in response to things that amuse her

-she's getting close to rolling over (almost rolled herself off the exam table at her doctor's appointment yesterday!)

-her eyelashes are getting quite long and pretty, and the hair on top of her head is starting to catch up with the hair on the back of her head!

-she's growing a bit of a pot belly and a little double chin :)

-about the gagging issue--Dr. Jedele said that she is no different than any other newborn in that respect--we just need to keep her more upright after she eats for about 30 min.

-everything else looks good according to the doctor! She continues to be an absolute bundle of cuteness and sweetness every day.

*A specific thing you could pray for her would be that her muscle tone and strength continue to improve. Thanks!*

Also, Lyla got 3 shots in her legs yesterday--Mom couldn't watch but Dad did and said her little face looked just shocked. :(  But she stopped being bugged by it about an hour afterward and hasn't been fussy at all since. What a trooper, as usual.

The Birthday Girl!

She's doing a birthday dance :)

Look at those red eyebrows!

We give God all the glory for the amazing things He is doing in Lyla and our lives. Thought these verses were fitting--

"I will praise you, O Lord, with all my heart; I will tell of your wonders. I will be glad and rejoice in you; I will sing praise to your name, O Most High." Psalm 9:1-2

"I love you, O Lord, my strength. The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold." Psalm 18: 1-2

He truly is our strength, our rock, our fortress, our deliverer, our refuge, our shield, our stronghold.

Uncle Foz and Lyla's hands

Movies

I don't know about you, but Joel and I tend to watch a lot more movies in the winter, simply because we're indoors more (especially this winter when it seems like every day it's either snowing or below zero).  There aren't too many movies that we've seen that are really very inspiring.  However, recently we've viewed two movies that are excellent.  I was so inspired by them that I felt the need to make a post about them!  They are Young At Heart and Expelled.  

Young At Heart is about a choir of senior citizens that travels internationally performing modern rock songs.  You will laugh, you will cry, but mostly you'll laugh. :) 

 

Expelled is by Ben Stein and is based on the debate between Darwinism and Intelligent Design.  It will surprise you and make you think.

  

These explanations may not sound extremely riveting, but the movies are.  I hope you will go and rent them if you haven't already!      

Daddy's Girl

Daddy loves when his girl wears camo...

Auntie Bryana customized it :)

Big yawn!

One of Lyla's many funny faces.  Sometimes she keeps her lips like this for a couple minutes.  She makes us giggle. :)  

Little L

Here's our happy-dappy girl. :)

Here's Lyla with Grandma Carol.  She's just nuts about Lyla--as you can see, the feeling is mutual. :)