Update

As you all know we had an appointment in Dallas this past Tuesday (sorry to be a slacker & just now post) Lyric had a swallow study done & they found that she is having a little trouble swallowing due to her vocal chord being paralyzed. It can't completely close therefore a little bit of her food was "going down the wrong pipe" & she has a little bit of silent aspiration (Silent aspiration is when food, liquids, or stomach contents are swallowed poorly, and go into the lungs by mistake) They have added a thickener to her formula to give her airway time to close off completely. This has seemed to help tremendously... she hasn't coughed very much at all through her feeds!!! They want us to follow up with an Ear, Nose & Thoat Doctor in 6 weeks & have a speech therapist come to the house weekly to keep an eye on her & hopefully get the report that it is getting better :) Thank you for your prayers & please continue to pray for our dear friends

Jon, Amy & Ella
Scott, Sarah & Emma
Cody & Brittany, baby Taylor went home to be with the Lord on December 12th.

Please pray as they come to mind & have a Merry Christmas!
Love,
The Nichols

December update

We followed up with Children's Medical Center today & we will be taking a trip back down to Dallas this coming week, they will be doing another swallow study & scope test to check Lyric's throat & vocal chords. She still has no voice, coughs through her feeds & is also having trouble gaining weight. At first we thought a minor cold but the cough is different from a cold cough & only happens when she eats. We don't know why she is having trouble putting on weight because she is at 27 calories per ounce & most babies are on a 20 calorie diet. Overall she is doing good and for that we are so thankful! Thank you all for love & prayers! Merry Christmas!!

A heavy heart

Thank you all for the continued prayers on Lyric's behalf, I know that there are so many prayer warriors that come & read Lyric's blog & I am asking for prayer for two very special Heart Family's that we had the honor of meeting while in Texas. Words can not express...

The Stewart's -
Baby Emma was born on Oct the 4th with HLHS & a restrictive atrial septum. She has been through many surgeries & yesterday her parents (Scott & Sarah) were told that it would be in Emma's best interest to place on the heart transplant list. Please pray for them as they come to mind! Emma is such a tough little princess & her parents are two amazing people, loving & giving through it all!
You can follow Emma's blog @

http://emmajanae.blogspot.com/

Emma on her 2 month birthday!

Taylor Dale -
I'm Taylor Dale Paul-Cowan I was born March 24th 2010 with HLHS to my mommy Brittany Cowan and daddy Cody Paul I went home for two weeks without my mommy knowing I had HLHS on April 7th I was rushed to Children's Hospital in Oklahoma City where I stayed for a week before they put me on a jet to come to Dallas Children's Medical Center where I have been since April 14th. ( A little information on Taylor)
Brittany & Cody were told today that Taylor has no chance of survival, this is beyond heart breaking & I can't imagine what they must feel as parents. Praying for you always!
Praying for a miracle!

Taylor's blog

http://taylordale032410.blogspot.com/

Taylor at six months :)

We're HOME!!

Last night in the hospital!!
Checking out!

Before & After

Her heart was so enlarged & after only 13 days you can see the difference!

Mellissa are favorite person in all the world... take out that NG tube :)

All taped up

Tape free & Happy!

I can't say enough about how wonderful CMC of Dallas is & everyone that we came in contact with truly went above & beyond!

Mellissa was our favorite :)

At the Ronald McDonald House just chillin!!

We were a little happy to have full release... homeward bound!!

Goodbye room 204! Thank you to the Ronald McDonald House! You all were wonderful & gave us a home away from home!

She was so happy to see her Daddy & he one was happy Daddy too!!!

He had to come back for work & it killed him to be away but we are so thankful that we are all together again at home!!

Thank you for your love, support, & PRAYERS!!
God is so good!!!!!!!!

To the Ronald McDonald house we go!

Today as I type Lyric is on her way to being discharged from the hospital!!!!!!! We will continue to stay at the Ronald McDonald House until her follow up appointment on Wednesday & if we get the all clear.... WE'RE GOING HOME :)
We are so thankful that everything has gone so smoothly & that she has done so well!!! God has been so gracious to us & I will say that life has a whole new meaning! Everything is different, every moment is special, every smile is a eye opener to the fact that life is a gift! God has blessed us with such an amazing group of friends & family to walk this journey with us & I am forever grateful! Thank you for your love, support, & most important your prayers!

God is so good, God is good, God is so good, He's so good to me!

Oh, give thanks to the LORD, for He is good! For His mercy endures forever.
Psalm 118:1

Lyric is doing so wonderful!! We had her first Thanksgiving here & we have so much to be thankful for!! She is healing very well & is back to her smiley old self! We see such a difference already in her ability to stay awake, eat, & have more energy. The ear, nose & throat doctor came in yesterday and he did a scope test & found that her left vocal cord is paralyzed. This was one of the risk involved in the arch repair, the doctor said that it could repair itself or the right side would over compensate & her voice would be weak. They want to see us back here in three months to see how it looks & decide what they will do next. She has been such a trooper & I'm so proud her! The chemical reaction on her neck is looking good as well... at this point they don't think it will scar. Today we spoke with her Nurse Practitioner, Mellissa (we love her & no that is not a typo on her name) she said that it will take months to see the full effect of the surgery due to her lungs & the rest of her body getting the correct amount of blood flow now. She said that her kidneys, liver, stomach & pretty much everything beside her lungs was not getting enough blood flow & now that they are getting enough they feel a little in shock but that will work itself out over time. She had her IV's removed yesterday & today her the stitches from her draining tubes were pulled!! They have changed her medications around today & we pray that the new plan keeps her blood pressure down! They did an echo yesterday and found that she still has a few small holes but now that it is patched her tissue should grow over them & repair on its own, her arch repair looks amazing & we are so thankful they caught it & were able to repair it! God has been so good to us & has given us so much to be thankful for!

Smiles :)

Trying to talk... still no voice and it is so sad but still soooooo cute :)

Proud Grandparents

Great Grandma Sparks (TooGi)

Playing with her doggie :)

Her first Thanksgiving!!

Big time thumb sucker

Thanksgiving morning

Please continue to pray for the Stewart's, Emma had a very rough day yesterday & it was very scary for Scott & Sarah. They are amazing parents & Emma is such a blessing to them. Pray for them to have strength & for Emma to do well until her next surgery. They will be here until March at which time Emma will have her next to last heart surgery.
http://www.emmajanae.blogspot.com

Thank you for all the love & prayers!

Bye, Bye, CU ICU!

The last three days we have started new meds, lost all her tubes & wires, started full feeds, she is off oxygen, & out of ICU! She is doing so great & we thank God for he has done! She has a chemical rash on her neck & that is making her very uncomfortable :( It looked awful but is slowly improving! She has been taking my milk & as of today we are having to add back in the extra calories for a little while in order to catch up on the charts! God is good all the time & all the time God is good! Thank you so much for the prayers, we feel so blessed to have so many people saying prayers on behalf of our family!

Losing another tube :)

Holding Lyric for the first time since surgery! So thankful we can hold her again!!

As I blog tonight I can only think of all the grace that God has given us to make it through the last few days. Lyric's surgery could not have gone better & her recovery is going well also! Her blood pressure is a little high so please pray for that! They are trying to ween her off of her IV meds to oral meds only... that way we can leave ICU along with lowering the dose of the meds that keep her blood pressure down so that she can regulate her blood pressure without the help of the medications. I can not say enough about our strong, brave, & tough little girl, she is amazing & God's grace has been abundant! The staff here at CMC of Dallas are beyond amazing, every single person that we have come in contact with has gone above & beyond!

We had the honor of meeting the Stewart's for the first time & what an amazing family they are! We have been praying for Emma, Sarah, & Scott for such a long time that we feel like we know them & now we have met them & see that beautiful baby girl from a distance wow... all the prayers prayed for them have come to life! God is good & Emma's heart is looking great :) Please continue to pray for them as they have a long road ahead!

Ella Burk also had a surgery this week here in Dallas & is doing amazing!! We are so thankful for Jon & Amy as they have unselfishly answered all our questions & have been a blessing in our lives! We have been able to see them & spend some time with them here in Dallas & God was so gracious to allow us to have them here for this major step in our journey! Thank you Jon & Amy! Ella, I have to say you have some pretty amazing parents that love you & love the Lord... so God blessed them with a CUTIE PIE like you :)

Please pray for the Burk's & the Stewart's as they come to mind. I pray that these three girls will be great buddies one day :) Emma, Ella, & Lyric Elise... look out world!

Ready to head to Dallas, I pray that this little angel of ours knows that she is one strong & amazing child of God! He made her so fearfully perfect & wonderfully made!

Holding Lyric... She loves her sleep & she likes it in her bed but knowing that we would not get to hold our precious Lyric for a little while we took our time laying her down.

Night before surgery

The morning of Lyric's surgery, this day was so hard as a parent, I can only say that God's grace is sufficient & He alone held our hearts as Lyric as taken back for surgery & for the 7 hours that we had to wait for the surgery to be complete. Thank you also to our families that were here & for all the prayers being prayed every second!

Waiting for those doors to swing open & for our baby girl to better than ever! We thank the Lord for His grace & love for us! The surgery went so great & Lyric has been the toughest little girl I've ever seen! God is GREAT!

The first time for us to see Lyric after surgery, it was only for a brief moment.

As you know they found an additional problem with Lyric's heart & along with that the surgeon said that this was the largest V.S.D. that she had ever seen most of them being the size of the pinky nail (for a large V.S.D.) & Lyric's was the size of a thumb nail to the first knuckle! When you're talking that in the size of a walnut divided into 4 chambers... God has been so good to protect Lyric through this!

Lyric in her ICU bed.

Getting new bandages.

Tube FREE!!!

Aunt Randi made Lyric her very own sign :) Make her room look way more like her :)

Bath time!!!!!! I was able to semi-hold Lyric! I will NEVER take the simple joy of being able to comfort my daughter for granted! She cries with no noise due to being intubated & it is the hardest thing to just rub her head & tell her it will all be ok. I so badly want to pick her up in my arms & sing to her!

All clean

All clean & looking at daddy, he is such an amazing father & husband. This is by far the hardest thing we have ever faced and He is truly a blessing! Lyric & I are so blessed to call him our "Babe" & "Daddy"

My poor baby girl has had moments of pain and she will look at me with these sad eyes, as if to ask "why mommy?" They have done an excellent job at keeping her as comfortable as possible & I tell you what she is such a strong little girl!

Feeding time.... I have been dreaming of the day when I would be able to feed our baby girl through a bottle again and for her to have the strength to eat! Today that dream came true & I cried tears of joy as she looked up at me just sucking away! This is a huge step in the right direction :)

She ate like pro, she threw up a little bit but she has been eating over the course of an hour & tonight she down a bottle in ten minutes so she needs a little time to get use to her stomach getting full faster! We slowed her down a little on the next feeding and she did amazing!! So proud of her!

All full & quite content to sleep! She truly is my hero for being so strong, I only hope as she grows up she knows how strong & brave she is. Thank you for the prayers, from the bottom of my heart THANK YOU!

Summer

Call to Me, and I will answer you, and show you great and mighty things, which you do not know
Jeremiah 33:3