Broken Hearts

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Probably more often than I care to admit, there are times where I sit in my office and cry. Today is one of those days. Going through the process of becoming a parent really puts other aspects of life into perspective.  See, it’s more than just Savannah’s broken heart and many health concerns; it’s plainly about love. Loving someone else more than you ever knew you could.

I first experienced this when I married Lori. Falling in love with her has been and continues to be one of the greatest joys of my life.  But yet, having a child is a different ball game. When you first lay eyes on your little baby, you are filled with an indescribable unconditional love. Frankly, this little child has done nothing to earn or deserve your love, but yet you freely give your time, energy, money, health, and life to give them what they need.

As I think about it, I know why God sent His Son, Jesus, to earth to die for us. As a parent, we see God’s sacrifice in a whole new light, and we have new insight into how God feels about us. Thankfully, it doesn’t just stop there. As a Christian, the unconditional love that I feel for my wife and child just doesn’t stop with them. Jesus came to save the world, not just me and my family. Everyone else on the planet matters to God just as much as I do.

This world is filled with so much hurt. Just in my corner of the world today, one of my coworkers is burying her mother. I know two other people that just recently lost their fathers. Yesterday, I saw another co-worker in tears due to concerns in her personal life. I also learned of someone else whose son may have a very serious and lethal form of cancer. Then I think of other parents that Lori and I have connected with who are slowly losing their children to cancer, heart disease, and countless other illnesses. Then just this morning, another “Heart Family” lost their little boy from complications due to his congential heart defects.

“Lord, please comfort these families. Give them peace that only You can give. And may I do what I can, when I can. May I see people as you see them. God heal our land, but break our hearts for your people.”

The Heartland

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Today is going to be rough. One of my heart mom friends is living my worst nightmare this morning. Oh how I wish she could wake up and it would have all been a bad dream.

Yesterday her sweet little boy was here. He was home and playing and living. He was winning his battle against his congenital heart defect.

This morning, he is gone. He has gone to be with Jesus and his mother is faced with what every heart parent dreads: saying goodbye to your child. Our group of heart moms banded with her last night; praying and crying and hoping. Making phone calls, emailing cardiologists, trying fervently to help. And it was not enough.

This horrible limbo in which we live is the cruelest form of torture. There is no cure for Savannah’s heart. There is no permanent fix that is guaranteed to work and provide a long and happy life. There is hope. But there is also this: a momma saying goodbye to her little boy, for whom she did all she could, who fought so hard to live. With no warning, with none heart symptoms we watch for with an eagle’s eye, he has gone from earth to heaven in matter of hours.

My heart is broken this morning. My friend must bury her son. So I hug Savannah tighter and kiss her more and cry while I watch her sleep, because today, she is here. And she is smiling and laughing and living. Today, she is winning her battle. And I pray with every fiber of my being that she continues to be victorious in to adulthood.

But today I am reminded that things can change in an instant; that no one is promised tomorrow and that I may not have her as long as I would like. And so I pray harder and cling to hope. Because I could not bear to be where she is, even though I know it is a very real possibility some day. I plead with The Lord to heal Savannah, to give her strength, to give her a long and happy life. Because no mama should outlive her child. Because my heart is torn in two at the thought.

And now, I must take a deep breath. I must continue to fight for Savannah. I must figure out how to get her to Boston and put her in the hands of the very best doctors. I must find the money to afford the travel and the food and the lodging to stay with her as she fights. I must find strength I do not have to get through all this.

Because one little boy can no longer fight. Because some day that could be us. Because hope is all we have.

Praying hard today for my friend and her family as she mourns. Praying hard for my little girl. And asking The Lord to wrap his arms around all of us who live and love in this limbo called the Heartland.

1 Step Forward, 2 Steps Back

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Throughout this journey, there have been many moments where we feel like we’re taking another step forward.  Then we realize that we’re actually stepping back.  This was true with Savannah’s heart cath last week.

Overall, the heart catheterization itself went very well.  There weren’t really any big surprises with regard to her heart or its structure.  Her pressures are good.  Her lungs are protected.  The doctor said that “we have the luxury of time” when it comes to Savannah’s heart repair.  This was a step forward.

But in the same breath, the doctor began to explain the latest development.  In the process of being intubated, the anesthesiologist had trouble passing the tube that she thought she should be using based on her weight.  Eventually, Savannah was successfully intubated using the smallest tube that they had in the cath lab.  Ultimately this means that Savannah’s airway is restricted or partially blocked in some way, shape, or form.  This felt like a step backwards.

Just as we were getting ready to see Savannah in the heart cath recovery room, we were told that Savannah had been placed in the ICU and would be spending the night for observation.  The anesthesiologist was concerned about extubating her due to the airway restriction.  Savannah was given anti inflammatory medicine to prevent her airway from swelling or restricting further.  The doctors wanted to monitor her airway and make sure that she started eating well again.

Thankfully, all turned out well in the end.  By the next morning, we were discharged to go home directly from ICU.  Unfortunately, anytime that Savannah has to be hospitalized, there’s a very good possibility that she’ll be headed directly for ICU.  She’s just such a  complex little kid!  Lori and I get it, but we certainly don’t like it.

Despite our overnight stay in ICU last week, Savannah is doing very well.  By looking at her, you wouldn’t know that there’s anything wrong with her.  Most of the time, she looks and acts like a happy, healthy baby.  She is battling the normal baby issues though.  She’s having some wicked vomiting spells, partially induced by severe acid reflux.  We hold her upright at least 30 minutes after every feeding.  This seems to help.

Just yesterday, we celebrated another milestone.  Savannah passed the 8 pound mark!  Considering that she was 4 lbs, 14 ounces when she was born, this is pretty good growth.  She has also outgrown many of the preemie outfits and preemie diapers too.  Yes, after 10 weeks, she’s finally wearing newborn diapers!

Even with all her health concerns, Savannah is still bringing so much joy to our lives.  We love her so much.  We enjoy each moment so much recognizing that we don’t know what the future holds.  In coming weeks and months, Savannah will be evaluated for her airway restriction.  It could result in anything from doing nothing to doing immediate surgery.  We simply don’t know.  Then with her heart, we have some time.  Some time could be 3 months, 6 months, or 18 months.  Again, we simply don’t know the timeline, but extreme  heart reconstruction surgery is required.

Your thoughts, prayers, volunteer hours, meals, and donations are very much appreciated.  I’d like to say a special thank you to Nicole Whitaker for organizing a Thirty-One party to benefit Savannah’s Heart, and thank you to everyone that placed an order.  Nicole is donating every penny of her commission to Savannah’s Heart, providing hundreds of dollars to help us get Savannah to Boston for her heart repair.

The road ahead will be tedious and frankly, rough.  Thanks to each and every one of you who help us take each of these steps.  May God bless you and may he continue to bless Savannah and our family.

Upcoming Heart Catheterization

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From Savannah’s Facebook group:

Savannah will be going for a heart cath next Tuesday. They are hoping to gather more information about the pressures in her heart and her venous anatomy. This will give us a clearer picture of a lot of her inner workings.

In someone as little as Savannah, this procedure is routine but not without risk. She will have to be put under general anesthesia because she is too young to understand how to lay still with just sedation. This also means she will have to be intubated. It is also difficult to work with the teeny tiny veins and arteries in a baby the size of Savannah, so there is a risk of the doctor causing injury to the inside of her vessels or her heart.

I will be honest, I am scared to death for this procedure. I know it is nothing compared to the heart surgery she will have later, but this is our first “big” procedure, and the information they get will determine a lot….how soon she’ll need some kind of intervention, a better idea of when she might need her initial trip to Boston and if she’ll need the first surgery, and more information about her ability to have a full heart repair down the road. I’m also nervous for her to be put under anesthesia and intubated. They say it’s all routine, but I’m still worried she won’t tolerate it well. No one wants to send their 2-month-old to be intubated, heavily sedated, and put through any kind of invasive procedure.

As you can imagine, this comes with plenty of things to pray for….

– first and foremost, pray that the doctors will do this exploratory cath and find a perfectly healthy heart by God’s grace.
– pray that Savannah will not be in pain. I don’t think I can stand to see her so tiny and hurting, especially when I can’t do anything to help.
– Pray over the doctor’s hands, that they would be steady and and sure and that there would be no complications during the cath.
– pray that Savannah would tolerate anesthesia well, and that she would do well being intubated with no complications. Pray also that she will eat well afterwards, as sometimes the sore throat from the tube makes babies not want to eat. We don’t want her to lose the good eating she’s worked so hard to establish!
– Pray she would stay free from any infection from the procedure or from anything she encounters in the hospital
– Pray that she will have no trouble in recovery or during healing with excessive bleeding, blood clots, or other complications.
– Pray that they will find that she does not need any current interventions or surgery and that the pressures in her heart would be what the doctors want to see
– pray they will be confident that Savannah will not need an initial open heart surgery and we can wait for her full repair to have any open heart surgery
– Pray that her anatomy would be EXTREMELY favorable for her heart repair – better than we could ever imagine – and that God would provide the doctors confidence without even a shadow of a doubt that she can have a full successful four-chamber repair.
– Pray for Ryan and me….I am scared and this is hard. I am frightened for my little girl, and she has no idea what is coming. I feel guilty as her mommy for handing her over for something like this, even though it’s what our situation mandates. Please pray we’d be held in the Lord’s hand as we walk through this first big step of Savannah’s heart journey.
– Please NEVER stop praying for Savannah’s healing. She so desperately needs a miracle from the Lord and the healing touch of Jesus.