Beaver Creek

The weather was so beautiful here the other day that Joel and I wanted to take advantage of it, so we decided to take a little excursion to one of our favorite places in the world, Beaver Creek.  It's a little Minnesota state park about 40 minutes away from home.  Beaver Creek holds a lot of sentimental value for Joel and I.  It is where we went on our first date and it is where, on January 16th, 2005, we became engaged.  It is a beautiful and peaceful place that we never get tired of visiting.  And we realized the other day that we have visited Beaver Creek during every season, each with its own special beauty.  We just love to go there and marvel at God's creation.  There is a hiking path which runs alongside an amazingly clear creek--and there are lots of trout in it which Joel always likes to point out.  I don't know how he can see them but he always does--it's those hunter's eyes I guess. :)  It was fun for us to think about how, when we were on our first date there, we never would have imagined that we would be back in that same place some day with our baby daughter, Lyla Jane.

If you listen closely you can hear Lyla snoring. :)

Lyla in her cozy wrap (from Auntie Abby)

She slept the whole time. :)

On one of our excursions to Beaver Creek a few years ago, it happened to be one of those mornings when the fog and mist was rising off the creek and the sun was shining down on it just perfectly--it was so neat, like a post card or something.  Well, Joel and I were walking along the trail admiring the beauty of the mist on the water with the sun streaming through it, and there in the middle of the creek stood a deer.  We got all excited because it was an absolute perfect photo opportunity.  I mean it could win awards.  Well, it turned out that our camera focused on the branches in the foreground rather than the deer in the mist, and by the time we figured out how to get the shot the deer had heard us and run away.  Anyway, all this to say that it reminded us of the song "As the Deer" taken from Psalm 42:1  "As the deer pants for streams of water, so my soul thirsts after you, O God."   

The beauty of His creation is a reflection of God and it does make us thirst for Him.  We're so thankful that we are able to enjoy it with our little Lyla.

Talkin'

Visitors :)

Well, yesterday Lyla and I received the special blessing of getting a visit from the Petchers. Jerry & Nancy are my adopted parents (they live in Marshfield) for when I'm missing my real parents who are all the way out in Arizona! They have been friends with my parents since before I was born. We were talking about how they have even changed a few of my diapers when I was a baby! Tanya is their middle daughter who has been my dear friend since birth. (We've also been tennis partners since about age 8 and intend to be until about age 98!) :) And she brought her youngest--handsome little Jack. It was such a blessing to have them here--they are just like family. And of course they came bearing gifts and delicious food for lunch, which Nancy whipped up, including her world-famous cereal bars. Yum! What a treat. Good food, fellowship, fun, and lots of Lyla love--what could be better? :)

Nancy and Lyla

Tanya and Lyla

Jack snuck in this one!

Jenny, Lyla, Tanya, Jack

PS--I did get some cute pics of Jerry and Lyla, but I suspect he sneakily went in and deleted them.  It was so sweet to see how when Lyla was fussing, he held her and walked with her and sang to her until she was comfy and fast asleep.  Thanks "grandpa" Jerry!  :)  :)  :)

This verse reminds me of the Petchers, especially the living a life of love part--

"Be imitators of God, therefore, as dearly loved children, and live a life of love, just as Christ loved us and gave himself up for us as a fragrant offering and sacrifice to God."  Ephesians 5:1

    

Smiley Girl

She brings so much joy to our lives.

 Just a little tiny hello.  :)

Praise Report

Well, today Lyla had her appointment at the clinic to get her weight and blood pressure checked. Good news--she gained 7 oz in one week! She now weighs 9 lbs 5 oz! Her increased calorie formula seems to be doing the trick. Also, her BP is in very normal range so she will not need to go on BP medication. Yay! And her renal labs came back normal which means her kidney is functioning just fine. God is so good! We are so thankful that our little trooper is doing so well. :) As always, thanks for your prayers. Enjoy the pics of our happy dappy Lyla.

She's been smiling so much lately!  

She wore that cute little dress to church.  It's from our friends Mark and Karn.  Too cute!

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 :)