Consider Pure Joy

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. James 1: 2-3

Day of Days

(Warning, before you proceed, please know that we do post pictures below of Reese after surgery. We’ve always thought of this blog as a way to help other parents who someday might go through something like this. Nothing can prepare you for seeing your child in this condition, but we feel this blog must be as transparent as possible in order to portray the most realistic journey we’re taking. Thanks)

Today was “The day of days” for us. We were told this day would happen back in May. Due to many different setbacks, it’s been postponed 2 different times but we finally got this heart surgery done. People have asked me many times the last few weeks how I was doing and how Elizabeth was doing. I think both of us just wanted to get it over with. I wasn’t nervous until they finally came to take her back. Elizabeth hugged her and kissed her, then I picked her up, got my kisses and literally handed her over to the anesthesiologist. I don’t think Elizabeth saw me but I had tears in my eyes. Handing your daughter over to a complete stranger so they can cut her open, stop her heart and lungs so they can fix a hole….it’s almost just too much to handle.

The hole in Reese’s heart was almost a half inch long and her heart isn’t much bigger than that! Surgery was the only option and needed to be done sooner rather than later. They took her back a little before 1pm and we waited quite a while before receiving our first update. Prep for this type of surgery takes over an hour, so we weren’t told till almost 2:30pm that they had begun. Both of our families were with us and we had quite a few visitors stop by for support. In fact we had 4 different churches send either a minister or chaplain to pray and talk with us. God is good!

The first cardiologist came to see us around 3:45 and let us know that everything went great, in his words “It was an A+”. We’re a big fan of his, we’ve had him since her first hospital visit and he has great disposition and always puts us at ease. He’s the doctor who reads her EKG and signs off on each one before they start the surgery and the one after they’re done and about to close her up. We breathed a huge sigh of relief but waited for the official word until after her surgeon arrived. He came by just 15 minutes later and pronounced the surgery a successful one we all celebrated in our own quiet way. It was such a relief and I knew God had answered some serious prayers.

We now had to wait another 2 hours before we got to see her. They took her into the ICU where she’ll be for the next 24 to 48 hours and Elizabeth and I were finally allowed back. I had been told by another heart surgeon, that nothing can prepare you for what you see when you go back to the ICU. Our daughter has spent almost 6 weeks of her life in a hospital. We’ve seen almost anything they could throw at us as far as machines, cords, beeps, lights, etc. Then we walked into this.

As you can see, it wasn’t pretty. She’s a little fighter and by 8pm, that ventilator was out of her mouth! This was one of the bigger concern for doctors due to her chronic lung disease. We had been warned that she might have to have it in overnight or even longer than 24 hours. Instead, just 4 hours after her surgery, she had her eyes open and was breathing on her own. Praise the lord!

So now we spend the next 24 hours getting each and every line or wire running into her body removed one by one. If they all come off tomorrow and things are looking good, then we move into a regular room. If it takes a little while longer to remove each one, then it will be Friday before we’re out of the ICU. She will be here another 4 to 8 days depending on her recovery situation. Our main concern is avoiding infections and getting her pain down to a tolerable level.

For those who’ve asked, we welcome any and all visitors. We’ve learned from our past hospital visits to take it easy, take breaks, go home for rest and don’t wear ourselves out staying at the hospital 24/7. We have a great support system with our family and friends and will never able to thank you all enough for your help. Along with us, the grandmothers will sit with her and so will friends. Tonight is my night to stay with princess and Mommy pulls tomorrow night’s shift.

Once again we are so thankful for everyone’s amazing prayers, texts, phone calls, FB posts, tweets, and visits. Someone even managed to sneak in a Paul’s Fruit Market gift basket! That person knows who they are and we are so thankful. We of course will continure to update this blog, Facebook, and you can even find me on twitter for any up to the minute updates @unclekyle

We thank everyone but most of all we thank our Lord and Savior Jesus Christ. Without him, we wouldn’t even be able to understand why all of this has happened and how to handle it. If you don’t know Jesus, ask Elizabeth and I about him sometime. He loves you just as much as he loves our precious Reese. Accept him as your savior and your life will change forever.

Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here! 

2 Corinthians 5:17

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Pre-Surgery

Reese McClain went for Pre-Admission testing today!
Open Heart Surgery is scheduled for tomorrow at 1:00pm!


Reese’s Meme Mem’s and Aunt Sassy had the privilege to take Reese McClain!

This is Reese McClain being sassy with her mommy about getting a picture before bath time!

Of course, everything still goes to the mouth–even her letter “R”

I asked Reese to smile with her doll–Ruby.  She decided to smash Ruby’s face!

This is making up with her doll Ruby!

We met with the surgeon Friday, August 17th and felt very comfortable with him taking care of our baby girl!  Of course, Kyle has done some research on him–he is an amazing doctor!

Many have asked, am I nervous? and I worried? My response: It’s completely out of my control. God has already taught me a huge lesson on that. I know God’s will–will be done to glorify him.  Reese is God’s child and on loan to me–I must follow his instructions.

“Cast all your anxiety on him because he cares for you” 1 Peter 5:7

“And the peace of God, which transcends all understanding, will guard your hearts
and your minds in Christ Jesus” Philippians 4:6

“For the Spirit God gave us does not make us timid, but gives us power, love and self-discipline”
2 Timothy 1:7 

Reese will be in the ICU for 1-2 days depending how she starts to recover.  We will have our family taking turns staying with Reese because it’s physically and mentally exhausting to stay in a hospital 24/7.   The doctors are unsure of how long her stay will be–depends on how she recovers but thinking 5-10 days.  We truly appreciate your prayers and support during this time.

My example for tomorrow–check it out! Luke 2:37

My Constant Reminder: Reese McClain is fearfully and wonderfully made in HIS imagine! Psalm 139:14

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Praise God

We are so excited that the full EGG confirmed there is NO seizure and/or epileptic activity–
Praise God!

This little family is overjoyed with such wonderful news!

Photo By: Elizabeth Lauer

Sing to Him, sing praises to Him; Speak of all His wonders… 1 Chronicles16:9

Please continue to pray for Reese’s upcoming open heart surgery Wednesday, August 29th!  We cannot thank you enough for your prayers and words of encouragement–it truly takes a village! 

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Away from Home

This past weekend we went to a friends lake house at Nolin.  Kyle and I were a little apprehensive about going but we decided we would take our chances and go!  I am really glad we took the opportunity because we had a wonderful time!  There were 8 adults and 5 kids!!!

Daddy loving on his princess before we board the boat!


Reese on her 1st Boat Ride!

 
Reese and Zoe


Big Girls (Aubrey & Harper) swimming in the Lake!

Reese tried her first table food–cheesy potatoes and Loved them!  We also gave her mushed up bananas and did well with those too!  Reese’s oxygen levels were high enough that we could enjoy the day without carrying oxygen tanks around–beyond excited!  We just spent one night at the lake house and everything with Reese’s medical needs ran smoothly.  It was a wonderful time just to get away and enjoy wonderful friends and beautiful scenery!  

Thank you so much Hack Family for amazing hospitality!

“Iron sharpens iron, and one person sharpens another” Proverbs 27:17

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Happy 1st Birthday Reese McClain

I can’t believe it’s already been a year–wow!  We have truly had our ups and downs this year but Reese McClain is a true blessing!


One of my absolute favorite moments and pictures with my lovie!

I know we have posted the link to her birth story before but I could truly read it over and over–I had an amazing and perfect birth!

After you’re done drying your tears from reading the sweet birth story… check out the 1st Birthday Blog post by Director of Awesome ….. Elizabeth Lauer is an amazing photographer, writer but more importantly a dear friend!

Reese had a birthday celebration week–nothing less was expected from her mother who loves celebrating Birthday’s!

Monday, July 23rd

Tuesday, July 24th

Wednesday, July 25th (Actually Birthday)

Wednesday evening we had Reese’s 12 month photos taken… then family came over for a Dairy Queen strawberry ice cream cake!  Reese had her own big girl cupcake that she wasn’t really interested in eating!  Little did we know Reese wasn’t herself on Wednesday evening because she had an ear infection that we discovered Thursday morning.  So, there is no photo for Thursday because she was getting lots and lots of beauty rest and love to prepare for her big party!

Friday, July 27th
Thank you Auntie Tina for the most precious outfit!

Then came Reese’s big day where she invited all her family and friends!  I couldn’t have asked for better weather–it was truly amazing because Reese was able to go outside for a little while without oxygen!  Reese was also feeling much better from her ear infection and had tons of smiles to give to her family and friends!  Daddy was under the weather but made an appearance–he was a trooper because he was really sick.  Overall, we had an amazing time and confirmed that we are beyond blessed with people that love our family so much!


Invitations designed by Elizabeth Lauer–Lizzie Loo Photography.

Between severe reflux, hospital visits, oxygen–it was a little stressful getting a photo of Reese each month but totally worth it in the end–I will cherish these photos forever!  Also, I chose not to make a traditional baby book because honestly it made me sad that Reese wasn’t meeting the milestones it noted.  Elizabeth is going to design us a very special book with these pictures and many more–no worries instead of the traditional baby book!  I think it’s a brilliant idea and really captures Reese’s precious little expressions that melts her mommy and daddy’s hearts!

Birthday Girl in her pink highchair!


Reese was so blessed with so many cards!!!

Melissa Tindle–Kyle’s cousin was so wonderful to capture Reese’s 1st Birthday Party!  Melissa did an amazing job and I just adore these photos–you really should check out her work!


Thank you so much–KBJ Photography!

Other Credits:
Elizabeth & Reese’s headbands were crafted by Jessica Farmer–Bluebirdheaven
Reese’s Outfit–DolceMia Clothing
Reese’s Alterations by Janice Becker–Nini’s Creations
Cupcake–Kroger
Highchair–Goodwill and a pink paint job by Reese’s Mimi Mem

Lastly, we asked for donations for a young man by the name of Glenn who also has a rare chromosome disorder in lieu of gifts.  The community is raising money to get Glenn’s mother a wheelchair accessible van.  Reese McClain was able to raise $1,300!  I was so humbled by everyone’s generosity and willingness to help another family!

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Discharged

Reese and I had a good girls night even though she tossed and turned all night, a bright monitor stayed on displaying her brain waves and I couldn’t get to sleep–we are good!

My little lovie was so ready to go to bed but I couldn’t give her a bottle because we were waiting for respiratory therapy and medicines.  This is where Reese gets a breathing treatment to open her airways in her lungs, then a machine that thumps on her chest/back to break up the fluid and topped off with suctioning.  Last night they did deep suctioning which is extremely hard for me to handle because Reese screams bloody murder… and if you knew Reese–she is not a crier.  I held her arm and leg down and just kept my eyes shut telling her it would be ok… mommy was right there for her…and praying to God to comfort us both!

Equipment we use every morning and night at home:

Nebulizer–medicine that she breaths in to open airways
Approximately 10 minutes each time


The Vest or as we called it “Thumper” 
Of course, Reese has the pink vest but her machine is just white!
Approximately 20 minutes each time

Suction machine to get the fluid out–just a minute or so (additional uses as needed)

This is when she was patiently waiting for breathing treatment, medicine and night time bottle!

THEN after an hour and half of waiting I had a lion on my hands–pretty cute lion though!

I had asked and asked regarding all these things and I finally did what any mommy would do, I gave her a bottle!  After her bottle, the respiratory therapist came and I told them sorry you’ll have to come back we couldn’t wait any longer.  You need to wait at least 1 hour after eating because the chest/back compression could cause them to throw up.

We finally got some rest and Reese went home as planned today!  The neurologist looked at the points in which I marked with a button during the observation and said she did not see any seizure activity.  However, they have to read the whole observation and we will get those results in two weeks. So still praying for results to show no seizure activity!  The doctor believes that Reese makes the little jester when she gets excited and it’s a muscle type of response and should not be alarming!

We also got our heart surgery date today–August 29th!  We have been waiting for these dates since May!  This surgery is routine for “normal healthy babies”… but Reese is at a greater risk due to her condition.  We know the risk but pray that the outcome is greater than any risk.  If you will please pray for peace/comfort for me,  I’m having a hard time accepting all this again.  It’s like sometimes I take 5 huge steps forward and then there are days I feel like I’m taking 10 huge steps backwards!  Reese will be cut down her whole chest… she will never care about the scar but it’s just something else that will visually remind me my child isn’t perfect.  Silly I know.. but if you have a child you understand and if you don’t you will one day–trust me!  I know many of you don’t know what to say or do with all this going on with Reese but prayers for peace for me would be amazing!  I know without a doubt that…”I praise him because Reese is fearfully and wonderfully made” but that doesn’t make my tears stop flowing sometimes because I grieve wanting to have the “normal” life/routine with a baby.  I truly appreciate your prayers and faith in our father who loves us so unconditionally–even when someone like me has doubts or bad days.

“For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us” Romans 8:18

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Girls Night

Reese and mommy are currently at Kosair’s Children’s Hospital for a 24 hour observation with neurology.  When Reese get’s really excited she does an “odd” activity with her eyes/hands… not really sure how else to explain the activity.  Neurology (Dr. Puri) just want to rule out any possibility of seizure activity.  The research that has been presented to us and that we have read ourselves is really 50/50 whether or not children with XQ28 duplication have seizures.  Generally, if they do–they will develop when the child is somewhat older–not fitting the 1 year old profile of Reese.  However, we just want to rule out the possibility and praying for a good report!  Therefore, Reese and I have decided this is girls night!

On our way for observation (1st time in my Big Girl Seat)

I was so worn out after they wrapped my head up like a football player!

Of course, I woke up after mommy laid me down!

Let Girls Night begin!

We know God is in control of the outcome and we praise him for today and for our precious gift–Reese McClain Nichols!

And my God will meet your needs according to the riches of his glory in Christ Jesus–Philippians 4:19

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