Leeland Neeley Our Little Bundle of Hope

It was hard not to wake up with the sun this morning.  After the rain, there seems to be a child-like exctiment to be in the sun.  It motivates me to get a cup of coffee and to just enjoy all that it brings.  The birds have joined me this morning and it’s peaceful.  I’m reminded of our call yesterday and all the light it shed on our little family.  My carrier test came back that I’m not a carrier of Cystic Fibrosis, which only means that Olive can’t have it.  God has not changed today he has just met us this morning with praise in our mouth.  I praise him with all that I am and have that he has created Olive Jean exactly the way he intended.  He has  ordained all her days and writtten them in His book.  He has seen her unformed body and knit her together.  We are overwhelmed with the amount of love God has shared with us through our children.  Through it all we know he is there wherever we are.  Thank you for joining us in prayer.

This morning we heard the word beautiful when the cardiologist was describing Olive’s little heart.  She couldn’t resist the word and I think she was almost as happy to delivery the news as we were to receive it.  Her heart is beautiful, just as described, and they didn’t have any indication that there is anything to be concerned about.  We also met with the geneticist and she did a type 2 ultrasound over and above the heart echo.  Everything measured right on que.  She was a little concerned about her bowels.  Her bowels were a little brighter white than they wanted to see.  This is something she told us not to be too concerned about but they want to monitor.  We will go back in 8 weeks and have a follow-up appointment to see if the problem has fixed itself and to rule out any other problems.  She was optimistic and told us that she thinks it will work out on its own.  We have decided to have some blood work done from me and Jonathan.  One of the possible outcomes is CF (cystic fibrosis) and we can rule that out if either Jonny or I aren’t carriers.  We should have those results in the next couple of weeks.  Thanks so much for all the support and prayers on our families behalf.  We covet them now as we wait for out next ultrasound and our blood work results.  I want to remind you that statistically the chances that everything is normal is good for us.  Because this marker stands alone and isn’t a severe case our doctor feels strongly that it will be gone in 8 weeks.  Although today was hard to hear we were surrounded by the laughter of Leeland and his sweet innocent little voice.  It’s the best kind of medicine.

If you Know my son Leeland Neeley this means you know someone with a congenital heart defect. You know someone who has fought for his life; you know someone who’s future is unsure; you know someone who has suffered, who has thrived, who has smiled, someone who has cried silently while on a ventilator. You know someone who has handed their child to a surgeon, knowing they will stop that child’s heart. You know someone who has spent countless hours praying to God to not take them away. You know someone who fought every step of the way for every precious milestone, every victory and to overcome every setback. If you know us, then you know Leeland. CHD awareness is about sharing facts, but also to let those who don’t seem to grasp the severity know just how dangerous and difficult life with a CHD is. February is Congenital Heart Defect Awareness month and I am posting this for Leeland and I thank Molly Bell, Brenda Kuhl, (Leeland’s Grandma) and Jean Militello for sharing this and sharing Lucy with all of us! We Thank God every day for the Blessings he gives Leeland and us daily!

Today Leeland is walking and getting big.  It’s hard to believe that it’s the same little baby who has been so brave through 2 heart surgeries.  We thank God for all the joy he brings.  His next cardio appointment is March 23rd and we are exciting to hear great heart news. We love you all and hope this message finds you and your family well!

I’m excited to announce that Joy and Stephen Cowell are 20 weeks into their newest pregnancy and have found out they are having a healthy little girl.  Genevieve and Caleb Elrod are expecting a healthy little boy as well.  There are so many more expecting great little healthy bundles Jessica and Craig Davis in March.  We rejoice with a new life and we praise for such good news!  God is good!

There are more and more things when I look around to be thankful for in my life.  One being a loving husband who I respect and thank so much for the last 5 1/2 years.  A time filled with joy and sorrow, a journey that I pull strength and faith closer with each step.  We recently reminisced about the day we met and the weeks that followed.  Sometimes I wish I could go back and just relive that semester but, like many will say, it only gets better with time.  Thank you Jonathan for the way you love me and Leeland and thank you most for how you teach me about a God that is good and a hope that is real.  I’m also thankful for a sweet little boy that I get to squeeze and kiss every day.  He is the presence of pure joy in our lives.  He is a beautiful 14 month old little boy that has recently felt bigger than ever.  It’s not all of his new words or moves that make him feel big, it’s a little 7 week old baby that grows in my belly.  Leeland is happy to announce that he’s going to be a big brother!  Just one more thing to be thankful for.  This morning we went in and were able to see the little one and a very strong heart beat.  We now invite you into the joy we are feeling and ask for your prayers for this new addition.  The heart is already formed at 7 weeks and we pray that it continues to grow healthy and strong.  We love you all and we hope your thanksgiving is full of things to be thankful for.

Here are some recent pictures of the family.  I’m about 2 weeks pregnant in the photo, which is hardly pregnant.  

Thanks again to everyone for all of your prayers!  Today went great, he was a such a big boy.  The button is finally closed!  The nurse said he woke up after surgery she picked him up and he didn’t even cry.  We were home by noon.  He was a little sore tonight but he’s being so tough.   The clinic appointment on tuesday was even better.  His doctor said that he looked so good.  He looked over his echo and said his function was great and we even dropped one of his meds (for the medical community, Lasix).  The doc said as long as Leeland is growing and all of his numbers look good we shouldn’t plan on the Fontan (3rd surgery) until he’s 4.  He said that they’ve been waiting as long as they can so that his heart can grow.  The synthetic piece they put in for the 3rd surgery wont grow with his heart so it’s best that they wait.  He was very proud of all of Leeland’s new milestones and he said we wont have to be back for 6 months.  It feels so great to get good news and I know that you all rejoice right along with us.

I can honestly say that the last 3 months have topped my joy chart.  I have never had so much joy and happiness.  Leeland is interacting more with us and it’s been so sweet.  Just tonight I walked into his room before he was asleep and I hear, “heeeey”, in the sweetest little voice.  I can’t believe that it could get any better than that.  God is the only thing that can bring pure joy and he is the giver of all good things.  So tonight as I tucked the sweetest little boy into his warm bed, I thank God for the blessings he’s given me.   The blessing of love, family, and community.  Continue to pray for our little man and we continue to thank God for you each night.  I hope that all of you can find those things in your life that help you grasp God’s kindness and love.  We all have things in our lives that God has blessed us with, they just all may look a little different at times.  And I know there are times that you struggle to see them.  But holding on to the things that God has given strengthens our steps and stabilizes our foundation.  It testifies to others that God is greater and that his love truly is better than life.  And isn’t that the goal as we walk with our God each day?  Living that way has always stood stronger than talking that way.  Have a great week everyone!

All done!! And great. Going to feed a hungry boy some food!

They’ve started and everything is going great!

Leeland just went back. They said it would be really quick. He was so brave this morning without breakfast!

Well the birthday boy survived his birthday week!  We had a great time with family and friends as we celebrated Leeland’s first year of life.    I can’t tell you for sure who had more fun the Birthday boy or his mom.  I love watching him grow and I just love this stage so much.  Wet kisses, cheesy smiles, and crawling and climbing on everything.  I’m so proud of him and I can’t wait for what tomorrow will bring.  Thanks for making this day special.   Here are a couple of photos to get a look at the birthday boy.  There’s one in there from Wisconsin while we were celebrating with cousin Zoey!

Please keep Leeland in your prayers as we get ready to head to ACH.  We have our scheduled cardiologist appt on tuesday and then on wednesday we are getting the button site closed for good.  He will have to go under fully so we need prayers that his heart will do great. We will keep you up to date with the website.  Love you all!

We also ask that you being praying for Blake and Glory.  They are both at ACH having test done.

I wanted to share a picture of our one year old today!  Thanks God for giving us the best year of our lives!

I have some things that I want to post but today I have no time to post…we’re having a party all day with our sweet boy!  Love you all!