Archive for the ‘Congenital Heart Defect’ Category
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What Makes a Child Worthy of Supporting?
Is it beauty?
Is it an appropriately sad story?
Is it the belief that others can make a difference?
What is it?
I wish I knew. I wish every video would go viral. I wish every child was fully funded. I wish every child’s sponsorship page said, “No more help needed.” I wish every surgery said, “Fully funded.” I wish every family could be supported. Why? Because I believe what Love Without Boundaries says – #EveryChildCounts.
But unfortunately that is not the case.
Some children just sit and sit on the sponsorship page. Is it that education isn’t important? Is it where you are from? Is it that your story isn’t sad enough? What is it?
I have been on the board of Love Without Boundaries for a few years now. I love the work they do. I love how they step in and fill the gap for a family or a child that just needs a little help. If you were in the room with me right now, you would see my face light up and the words just pour out of me. I believe in what LWB does!
My FaceBook feed is filled with memories of children that have been helped.
Every year those memories pop up. Do you remember Harley & James. What an amazing story! It was beautiful watching people step up and help.
Look at them now…
Or Oliver? Sweet Oliver and his mom who just wanted her baby to be ok.
People stepped up and helped in amazing ways.
Doesn’t his mama’s smile just say it all?
A couple of weeks ago, my FaceBook news feed was filled with Emma’s story and pictures. Jasmine cried and cried over Emma. “Can’t we help her mama?” Jasmine would plead. Emma was written about by LWB in 2013. Emma was a little girl, who sat with a broken leg for way too long. LWB was trying to get her the care that she needed.
Unfortunately, Emma’s story did not end the way we hoped and she passed away. We cried and cried over Emma. Emma deserved having someone in her corner, praying for her, and helping her. No matter what the outcome was!
There are pictures that pop up on my FaceBook feed of babies that have passed away. I know that I could hide the post and I wouldn’t see it every year. I could pretend that it didn’t happen. I could save myself the heartache of remembering, but then I think about my little boy, Kyle. I think about how every year I remember his birth. I remember what it felt like to feel his kicks. I remember what it felt like to hold him as he took his last breath. I remember, 33 years later, the rocker I sat in and the white curtain that was pulled around me. I remember trying to call family. I remember holding his dead body as we drove the 90 minutes back home to the funeral home in our home town because we couldn’t afford to pay for someone to come pick up his body. I cry tears and I remember.
I want to remember these babies. I want to know that someone remembers them. I don’t know anything about their family and why they chose to leave them. I am sure the mother remembers the birth, but she doesn’t know about the death. How could she know? So I remember.
Every day my inbox is filled with stories. Some stories are happy and some are not. People can be cruel to children, as we well know by the headlines that we read every day. I don’t know how Amy and our volunteers do it. They step in and fill the gap every single day. They are the heroes behind the beautiful stories of hope and healing that you read about on LWB’s blog, Facebook, and website pages.
Sometimes they are able to find the help needed in amazing ways and sometimes there is nothing that can be done. Just imagine the heartbreak and sorrow they feel when they can’t help and yet, they get up time and time again and keep trying to help. They are truly heroes.
Many of you know that we have four children who have congenital heart defects. The reason Oliver’s story resonated with me was that I know what it is like to care for a little one who has blue lips and fingertips. I, however, had the luxury of taking my children to specialists around the country. Oliver’s mom didn’t have that luxury.
Right now LWB is trying to fund 5 heart surgeries in 7 days. They are trying to step in and be the gap for families that don’t have the luxury that Dan and I did.
I don’t want to be the person that is constantly asking for your to open your checkbook and help, but someone has to tell their stories. Someone has to let you know the need. I guess I am going to be that someone today.
Please consider giving to LWB’s heart initiative. I mean seriously! Look at these sweet faces.
What is your Facebook feed filled with? What have your days been measured by? We only get one life. Make it count. Do something. Be the gap! Step up and help! When you look back at your Facebook feed next year, you will be thrilled that you did!
https://www.lovewithoutboundaries.com/heart-initiative/m.children/3198/view/4921
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28 Days of Hearts
Sharing Evie’s story this year on the 28 Days of Hearts blog…
http://www.28daysofhearts.com/2018/02/day-5-evie-eli.html?m=1
Here are our previous years stories.
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We LOVE Pink!
We got the wonderful news Tuesday that we could head home.
7 days post-op from open heart surgery and she was ready to go.
She was ready in two seconds flat with her cape, sparkly boots, phone, and purse with all her critters.
Dr. Marx came to say goodbye and to let us know how pleased he was with her recovery.
She could barely contain the giggles in the elevator.
Everyone thought she was very stylish!
We said our prayers before we took off.
She was so happy to be home with the other littles.
And the middles…
And the bigs were happy too. Although I did not take any pictures to prove this fact.
It’s hard to tell which little is the happiest to have her home.
Trying to get a picture with Lainey proved to be quite the challenge.
After 2 1/2 years of having little blue ones in the house, the surgeries are done and everyone is PINK!
WE LOVE THE COLOR PINK! It looks pretty good on our Evie Faith!
We have been so blessed through the past year with all your prayers. It started with Evie’s heart cath in August of last year, we had four more heart catherizations and three more open heart surgeries. Each one of the kids did unbelievably well. With each of the last three surgeries, the kids were discharged on post op day 7. Have I told you how much I love the number 7? Here is the definition for the number 7 in the Bible.
Seven is the number of completeness and perfection (both physical and spiritual).
Seems pretty appropriate for these little ones who are healing emotionally, spiritually, and physically.
Thank you again for every prayer said, every word of encouragement uttered, and for standing with us during this busy, busy year. We can not possibly put into words how much it meant.
Praise be to God!
We are indeed seriously blessed!!!
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Evie Update
Amazingly, two days after having open heart surgery, Evie was discharged to the cardiac floor.
Today, post-op day 3, she no longer needs extra oxygen. She has started eating again and is acting more like her sweet, little self.
Yesterday and today have been healing days.
We have blown bubbles to help us clear our lungs.
We’ve dressed up in our pretty jewelry that daddy bought so we can pretend to be a princess.
And we’ve taken lots of naps surrounded by our soft, cuddly friends.
As Dan and I sat there today looking at her sweet face, we were reminiscing about what she looked like when we first met her on that day in May of 2013. She was a 26 month old, bald, very blue little girl with oxygen sats in the 50’s, weighing 13 pounds, unable to even sit up by herself, and able to fit in a 6 month pair of pajamas.
Even then, as sick as she was, you could see her big personality shining through.
Dan and I are feeling very blessed this evening. What an amazing journey this has been.
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Today is the Day
Today is the day that the Lord has made. Let us rejoice and be glad in it. Today Evie has her Fontan surgery. Today Evie gets a chance at a longer life. Today is a beautiful day!
For some reason getting ready for Evie’s surgery has been extra difficult. Ben and Eli both had great results, better than normal results even, but this time there has been a small voice whispering “You’ve had too much good luck!”.
I know this isn’t the truth. It’s not luck. I have nothing to do with it. It’s not based on rewarding or punishing me. Evie’s life has been forever known to God. God did not set out to harm Evie. God did not leave Evie on the side of the road. Man did that. I won’t get into debates about whether God made Evie this way or why her parents had to leave her. I can not even begin to fathom the whys of the world.
If you know Evie, you know she oozes joy. She is a beautiful soul. She is full of laughter and light. She makes friends wherever she goes. Evie’s plan is most assuredly John 9:1-3. If you have never heard this verse, here it is…
As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him. John 9:1-3
I see that with Evie. I see the works of God displayed in her. How many of us can say that about our lives?
As I was flying to Boston I had lots of time to just look at my girl. I watched as the flight attendants and people around us interacted with her. When we landed, the gentlemen in our row told me that he flies all the time and has never, ever seen a child behave so well. If you had seen us earlier when we arrived at the airport, you’d know what a miracle this was. We arrived at the airport and Evie refused to get out of the car. She cried and yelled, “I don’t want to go.” She knew exactly where we were going.
As we headed to security, I went over the plans. We would fly to Boston. We would have a good night and go to our doctor’s appointment. The doctor’s appointment would have no big owies. We would have two days just to hang out and have fun together. I told her we had three days until surgery. I told her if she was sad and worried leading up to surgery, she wouldn’t have fun the next three days. I asked her if she trusted mommy and she said, “YES!” From that moment on she has done really well. Whenever we went to radiology, labs, echo, she was nervous, would cry a bit, and I would say, “Do you trust me?” and she would yell, “YES!” and smile. I can not even begin to explain what that did to my heart.
It was then that I understood why I was so nervous. Evie was trusting us to do what was best for her. We are trying to make the best decisions we can with the information we have. Dr. delNido is skipping the second stage and going straight to the third stage. This is wonderful because it will save her having another big open heart surgery but it makes it a little more complicated. We are trusting the doctor’s decisions. They know so much more than we do and are the best that there is in cardiology. But the risks are still there…complications, strokes, and death are possible. Every time you head in for open heart surgery you take a chance. You are hoping to extend their lives, to give them a better quality of life and a longer life, but the truth is it doesn’t always work that way.
I was feeling a little nervous and then I read this devotional. I have mentioned many times how I love that God brings the words to me that I need to hear when I need to hear them.
“The truth is that all things belong to God, including our time and our children. Every heartbeat is His gift. This perspective encourages us to make our offerings as true worship because we realize we have no claim on the things of this earth. It is only because of grace that we are able to have fellowship with Him and offer those gifts in the first place.” – Parenting by Design
Every heartbeat is a gift. I truly believe that. It is only by grace that I have been granted the opportunity to be Evie’s mama. I am worshiping a God who has graciously granted us 525 days with Evie. 525 of the most beautiful days that you could ever hope to have. Today I praise a God of possibilities. I praise a God of second chances. I praise a God that knows every hair on Evie’s head. He has always known her and will hold her in His hand. He loves my girl even more than I do.
We arrived at the hospital at 6 a.m. They took her to the O.R. at 7:30. They are expecting it to take at least six hours and I will update how it goes in the comment section.
Please continue to pray for Evie. Pray for the doctors and for everyone who will come in contact with her. May they see God’s love and hope in everything that we do. May Evie’s life continue to be a beacon of light showing all of God’s good works.
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Little Guy Updates
Little guy was extubated on Friday. He is doing remarkably well. Everyone says his lungs are the best they have ever seen after a unifocalization.
Every single one of our heart children from China have required unbelievable amounts of sedation to keep them comfortable and knocked out while on the ventilator. I don’t know why this is, but it’s hard to watch while the doctors try to find the perfect number to keep them under and comfortable. Every time we go in we comment on this fact as the doctors keep going up on the narcotics. At one point, the doctor stopped and said, “I can’t believe this. I’m pretty sure this amount would keep three adults asleep.” I don’t know if that is true or not, but it is still a large amount.
Because it takes so much to keep them sedated and comfortable, it takes them even longer to fully wake up. Eli was still pretty out of it all day Friday but Saturday morning when I walked in the room, he was with it enough to look right at me. It was so good to see my boy and hear him whisper mama, but it broke my heart when he said, “mama up”. There were still too many tubes to be able to hold him.
By the end of the day he was doing much better. He even smiled a couple of times.
Isn’t it amazing what they can do? Here is a 3-D animation of the procedure.
Dr. Hanley took Eli’s collaterals, spliced them open and then built him pulmonary arteries. Absolutely mind blowing and amazing!!!!! He then put a conduit in Eli’s heart and added a valve. And then to top things off he stood for three hours and tried to get rid of all the small little tiny vessels that Eli’s lungs were growing while they were trying to get some oxygen. They had to get rid of those vessels and make sure they weren’t still bleeding. It’s a time consuming job.
How do you thank someone for that? I look at Eli and can’t believe it. In China he was deemed inoperable, terminal and here he has a second chance at life.
He spent his weekend eating popsicles, watching Veggietales, and…
recuperating.
Saturday night the nurse tried to convince me to go get some sleep. Unlike most of the other hospitals we have stayed in, there are no sleeping areas in the ICU rooms here. I was okay sleeping when he was stable and completely out, but not when he could wake up and need me. We worked really hard to earn Elijah’s trust during his first year home. The last thing I wanted to do was have him wake up afraid and not be able to find me.
She told me that she could comfort him all I had to do was tell her what makes him comfortable. A stuffed animal? A blanket? A special song? Nope…..
It would be just too hard to leave my hand there. When Eli is afraid at night, which doesn’t happen very often anymore, all he does is cry out “mama” and reach for my hand. All he needs to know is that I am there. There is no way in the world that I wasn’t going to be there when he needed me the most.
Sunday afternoon we were moved to a private room on the general floor. He is down to one i.v., three chest tubes and a smidge of oxygen. He is doing amazingly well. We have been told this fact over and over again. He is still a little sad and his stomach hurts but all in all he is doing well.
Praising God for the chance that was given to our little guy. Blessings beyond measure for sure! Thank you again for all the prayers.
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