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

More Tubes Are Out!

I am headed back to Oklahoma, but I wanted to let everyone know how Lyric is doing! They took out two more draining tubes from her tummy, and the tube on her neck. They took the catheter out, and Lyric handled it all like a pro. Summer is doing great, and we have received the BEST care from any hospital I have ever been in. they may be moving Lyric up to recover, and out of ICU, sometime in the next 24 hours!! Her feeding tube is back in, which means she is eating through that and not through the IV anymore, which is all great progress! I will update as I hear from Summer and Travis! Keep up the prayers because God is working all over!
Randi

Also Summer got to briefly hold Lyric while she lifted her up to change the bed sheets! It was a beautiful precious moment to get to witness!

Ventilator is out!!!

Lyric is officially off of the ventilator, and breathing on her own!!! They removed that this afternoon and Lyric handled it great and is doing well. At every turn we have seen the hand of God working through the amazing staff here at the hospital. They say tomorrow, Lyric should get one of her drainage tubes out and possibly additional tubes removed. Summer was able to give her her first sponge bath, but still cannot hold her. I was planning on posting some pictures but ended up staying here in the ICU room with Summer and cannot get them to upload. Lyric is looking great, and handling all of this like a little trooper!! We have no doubt that it is due to God working and all the praying! God is good and we are blessed to get to serve Him!
Thanks

Post Surgery Update

Lyric is doing great post surgery. Last night they had to put her on a pace maker, due to having to up her sedatives, she kept trying to fight them off (she is a little fighter). The next big step will be taking her off the ventilator, which should be sometime in the next 24 hours. Summer and Travis stayed in the ICU room with her last night and i will try to update after I see her today. Thanks for all the love and prayers!
Randi

LYRIC IS OUT OF SURGERY!!!

LYRIC IS OUT OF SURGERY!!!! PRAISE GOD!!! Summer and Trav got to see her for only about 60 seconds while they moved her from the Operating Room to the ICU room she will be staying in. Everything went awesome! Once the surgeon got in there they found another small hole and they were able to fix that as well. The surgeon said that she has done a million of these surgeries for VSD and this is the largest hole she has ever seen, most of the holes are about the size of a fingernail, but Lyric's was the size from the top of the fingernail to the first joint, there was virtually no wall at all. The tissue that they were worried about, that may cause another surgery, looks great and the surgeon said she was very pleased about how it looked. They were able to close the chest up which is a big blessing. She she will be intubated until Monday, which means they will not be able to hold her until the tubes are out.
Thank you for the prayers! God is amazing and we are waiting to see little Lyric again!!

My heart feels overwhelmed with gratitude towards God! I will update later tonight.
Thanks,
Randi

Lyric is now on bypass and they began the first repair about 30 minutes ago. They are about an hour behind schedule because they had a few problems getting all her lines in, but they said she is doing well. Thank you again for the prayers.

Surgery Has Started

They took Lyric back this morning around 8:00, and then they called at 9:45 saying the incision was just made and the surgery is underway. The next 40 minutes should be reconstructing the archway, then on to patch the hole. We should be getting a call every hour so we know how it is going. Keep praying!

A Few Changes Before Surgery...

Well we are all in Dallas and Summer, Travis and Lyric survived the day of pre-surgery meetings, tests, paperwork, questions and instructions. They started early this morning and did not get checked into the Ronald McDonald House (which was a huge blessing) until about 7:30 tonight. This afternoon they found out that Lyric, on top of the VSD, that she has a hypoplastic aortic arch (this is a narrowing of the major artery from the heart to the body (the aorta). The narrowing decreases the blood flow to the body and makes the heart pump harder against the smaller than normal opening, so they will have to reconstruct that as another part of the surgery. This will be more extensive and will prolong their stay in ICU after, and their stay in the Ronald Mcdonald House. The flap of tissue that was found about a month ago, they will not be working on tomorrow because it is too thin to be sutured, so they are going to keep monitoring that, but it could mean another possible surgery later on down the road, only God knows what that looks like.
Summer is tired, but is holding up well. they are supposed to check-in at 5:30 a.m. and will be able to stay with Lyric through prep time which will take about an hour. During the surgery we will be receiving a call every hour to know how it is going, the surgery will be about six hours long (minimum).
I am sure that I forgot some details but I want everyone to be updated and more importantly praying!
Thanks, Randi

Another huge praise is that Ella is doing great and her surgery went well, Jon and Amy are in the room across from Summer and Trav, even in this I have no doubt that God's hand was in the timing of Jon and Amy being there, because I know Amy has been a huge comfort and blessing to my little sister, by holding her hand and answering all of Summer's questions and concerns. Thanks Amy for letting your life and walk with God through this time be a comfort to Summer!

Lyric worn out after a full day, she handled it like the trooper she is & the staff fell in love with her!

Headed to Dallas

Hey everyone, I want to start out by saying thank you so much for all of your continued prayers and support in so many different ways we have seen the hand of God providing love, support and grace to handle all of this! The home health nurse came this afternoon and said that Lyric weighed in at 9 lbs. and 12 oz., she also brought them goody bags for the hospital and they feel so blessed to have had her as their nurse, she has been super helpful!!! The Nichols are headed down to Dallas tonight and staying in a hotel and will be headed to the hospital at 7 am, to begin testing and all the paperwork, so it will be a full pre surgery day. They will find out tomorrow if they will be able to stay in the Ronal McDonald house for the duration of the stay, so please be praying that works out. I will do my best to try to keep everyone updated as we get updates.
Also Summer and Travis' friends the Burks, with sweet little Ella are headed back down to Dallas tonight and Ella will be having surgery, I believe, tomorrow, so Summer asked us to all be praying for their family too!

"Our God is greater, our God is healer, awesome in power our God...."

Prayers and Support

Hey Everyone!! Thanks for all the prayers for beautiful Lyric Elise, sometimes just helping out I get exhausted (and I only do the night time feedings every three nights or so) and I realize how much harder it must be for Summer, Travis and little Lyric. The truth is though, this is just not just a physically exhausting thing, but on top of that it also adds a financial strain to their family. They have insurance through Travis' work, but insurance alone is not enough, they still have to come up with about fifteen to twenty thousand dollars out of their own pocket with deductibles and other expenses. This would put a strain on any one family, but that is where we can help carry the burden. This is not something that Summer and Travis have asked us to do. However, many people have asked how they can help in addition to praying and this is a way you can! We are working on putting up a paypal button (which should be up within two days) so you can donate that way or you can email me at randitylr@yahoo.com and I can give you an address to mail it to.
Speaking of praying, here is one major request, even as I write this tonight I have stopped to clean up throw up with Summer, this seems to be a consistent problem, we feed her through the tube only to pick her up to lose what seems like all of the food she just took, please pray that this will let up. The doctors say that this is normal but it does not make it any easier.
We have a surgery date and we are so thankful for that, that there is an end in sight on this side of it all, but in reality we know this will still be a long journey.
Thanks for the prayers and support!!
Randi

A few details from Dallas

Travis, Lyric & I will head down to Dallas after Travis gets off work on Wednesday the 17th, Thursday morning at 8:00am we go into the hospital for her pre-op & they said this will be an all day thing. Friday morning we are due at the hospital at 5:30am and her surgery will begin at 7:00am. Please pray that Lyric does not get sick in the mean time because they will have to reschedule her surgery.
I am in contact with the case worker from Children's & she is helping us with our lodging while we are in Dallas. We are hoping to be able to stay at the Ronald Mcdonald House near the hospital in order to have a place to go if need be. Thank you for your continued prayer!

Please be praying for our dear friends the Burk's & their sweet baby girl, Ella Dawn Burk.
http://elladawn.blogspot.com/

Also for the Stewart's, we don't know personally but our hearts go out to them.
Scott, Sarah & Emma Stewart
http://www.emmajanae.blogspot.com/

And whatever you ask in My name, that I will do, that the Father may be glorified in the Son. If you ask anything in My name, I will do it.
John 14:13-14

Dallas

We received word from Dallas today & Lyric's surgery is scheduled for the 19th of this month... which is next Friday! The paperwork is not final but the doctor said it will be by tomorrow morning & they will call us with more details of what to expect. Travis, Lyric & I will go down the day before the surgery to meet the doctors, see the hospital, & do one final echo (they will sedate Lyric for this one & it will take about 3 hour) to make sure they know exactly what they are going to do when she goes in for surgery the following morning. We are thankful that we now know when the surgery will be taking place but at the same time this is very scary. It is so hard to think of all that Lyric will endure & it breaks my heart that she will have to feel any pain. I wish every second that I could have the surgery for her & take away the pain that she will face. Please pray for Travis & I to have strength & peace, this by far is the hardest thing we have ever faced. We know that God is so good & only wants the very best for Lyric, we are resting in the promise of His goodness & grace. Thank you for all the prayers!
Thank you for the gifts of love!! We have been so blessed by your generosity & we feel so honored to have such amazing family, friends, & even the love & prayers of those who have never met us! THANK YOU!

Prayer request!!
I am getting a cold! We can not get sick so please pray that it passes & that Lyric stays healthy! Thank you!

November 5th update

We heard from Dallas for the first time today & we now have a contact there! Dr. Day is the cardiologist handling Lyric's case & I spoke with him this afternoon. He was extremely kind & very helpful! He called to asked if the next couple of weeks would be open for us & our families to schedule Lyric's surgery. We have been waiting for this call & are ready but at the same time sooooooo not ready!

We will have her officially surgery date on Monday.
Lyric weighed 9lbs 8oz this morning, she looks & sounds great! We love Lyric's home health nurse, Jennifer... she has been a blessing in so many ways! I will update you the moment we have a date! Thanks to everyone who has prayed to get get us to this place. God has given us much grace so far & we know His grace is sufficient.

A picture to brighten your day... She is growing :)

Weighing in!

Lyric weighed 9lbs 5oz this morning!!!!!!!! For the first time in her life she weighs more than 9lbs!!!! For now we are taking it as great healthy weight gain :-)
She will also be starting her Synagis shots this month depending on her surgery date which we're praying we get word tomorrow!
Synagis is the only FDA-approved medication to help protect high-risk babies from severe RSV disease. Even though Synagis is given as a shot by your healthcare provider, it's not a vaccine and it works differently. Each Synagis shot provides a dose of virus-fighting substances called antibodies that help prevent severe RSV disease from infecting your baby's lungs.
She will receive a monthly shot now through March :(
Pray that she handles it well & also for her to continue to maintain & gain weight!