Matters of the Heart, Part 30

As I said in Part 29, I didn’t expect to have a Part 29 of this series, let alone a Part 30. But here we are.

Looking back, Ben and I have been dealing with his heart issues for 36 years. We’ve been married for 37 years. What does that tell you?

Deciding on having the Watchman procedure done was easier than the steps involved to actually get the procedure itself approved. And it certainly wasn’t his doctor’s fault.

There were several tests he had to have first, including a new EKG, and echocardiogram. Those were simple and of course showed he was a good candidate for the procedure. 

Then he needed a second opinion from another cardiologist in his group. Time was ticking until the end of the year, and we were getting a bit antsy. 

But that appointment was finally scheduled and the doctor confirmed that with his history he was definitely a good candidate for the procedure 

Now to get it approved and scheduled before the end of the year. With Thanksgiving and Christmas affecting schedules as well.

But our doctor assured us we’d get it done by the end of the year, and we’d get a call from the office as soon as it could be scheduled.

We just didn’t realize we’d get the call just five days before the surgery date, with two of those days being a weekend. It was scheduled for TWO DAYS before Thanksgiving! And we found out on Thursday which was the Thursday before Thanksgiving Day!

He’d be the first surgery of the day, which meant we had to be at the hospital at 5:30. In the morning! And I am NOT a morning person, which meant we’d have to get up at 4 am to get ready and be there that early. Ugh.

Well, we’d take what was available. Which meant frantically rearranging both his and my work schedules, as well as finishing putting up all the Christmas decorations! Fortunately we’d started early, and if you followed the stories about our 8+ Christmas trees, plus the Christmas ledge in our two story foyer, well you can imagine how much we needed to get done since we were having Thanksgiving dinner at our house.

I finished all the big trees, and he finished the ledge. Boxes for the decorations were still sitting around which needed to be put away, but I figured our daughter and son-in-law could do that since Ben wouldn’t be able to lift anything for several days after the procedure. Talk about rushing around…!

But plans don’t always go as planned, shall we say. The night before his surgery he got a call from his doctor around 6:30 PM. From his doctor’s personal cell phone. (Yes, we have that number.) That’s a call you don’t ignore.

And you guessed it. Surgery was postponed. The insurance company still hadn’t approved it. We weren’t happy at all. However, as Ben told the doctor, “my wife will be happy she doesn’t have to get up at 4:00 in the morning.” He said the doctor laughed himself silly over that comment! After apologizing profusely, the docotr promised they would reschedule as soon as they got the word from the insurance company, and it would definitely be before the end of the year.

Things did work out for the best, though, because not only did I not have to get up before the crack of dawn, we were able to put all the decoration boxes away, and I didn’t have to beg for extra help from our daughter to get Thanksgiving dinner ready. And Ben was able to play with the grandkids on Thanksgiving without being concerned about his incisions. 

But how was this going to affect our Christmas plans? Would we have to scramble to change other things?

Fortunately, the next week we got a call rescheduling the procedure, for the following week. Our doctor must’ve remembered Ben’s comment about early mornings, though, because the new surgery time was 1:00 in the afternoon and we didn’t have to be at the hospital until 11:00 am. That worked really well, at least for me.

Then we found out the insurance company had actually approved the procedure at 4:30 pm the day before the original surgery date. They just didn’t notify the doctors in time.

Go figure. But it did all work out for the best, since Ben had a week’s vacation already scheduled for the following week after the surgery to make recuperation easier.

Surgery went perfectly. In fact our doctor told him he’d done hundreds of these procedures and usually he had to do a little maneuvering to get the device precisely where it needed to be, but this one went in perfectly the first time! Thank goodness!

Ben will now be on blood thinners for 45 days after the surgery while the tissue grows over the device to seal it in. He will then have a CT scan to be sure everything is going well, which we’re sure it will. Then he will be on a different blood thinner plus baby aspirin until 180 days after the procedure and then no more blood thinners; just a daily baby aspirin.

Naturally we’re all pleased with the results, and so glad he made the decision to do it.

What’s ahead in this saga now? Hopefully only 6 month follow up visits that will show everything is still doing well.

After three heart valve replacements, two pacemakers, and now the Watchman, I think he’s had enough.

We are so thankful for all the great doctors and nurses he’s been fortunate enough to have over the years, and I do have to say that the last two cardiologists that have been caring for him have been the absolute best!

If any of you reading this have any heart issues, or have loved ones with these issues, please be encouraged. It’s not always as bad as it seems. Yes, it’s scary, but look what we’ve been though over the years. And if you have questions please feel free to message me with questions.

And Ben is still going strong after all of this!

Matters of the Heart, Part 29

I really didn’t expect to be writing another installment of this series. After all there’ve been 28 installments so far, the last one being in September of 2019. A little more than two years ago.

Certainly enough stories, right?

Well, you would think so.

But after the last heart valve procedure, which is still doing very well, thank goodness, both of Ben’s doctors determined that he was a very good candidate for a device called the Watchman. This device is implanted in an area of the heart called the left atrial appendage. It permanently closes off that area of the heart in which blood clots can form for patients like Ben who have a history of atrial fibrillation or AFib (which can lead to a stroke).

AFib patients, even those with pacemakers, like Ben, are on blood thinners daily to prevent blood clots from forming. This particular device prevents such clots from forming, thus eliminating the need for patients to take blood thinners daily, which in Ben’s case have also caused a number of blood vessel ruptures in his left eye, which has had numerous recurrences of iritis, which is another story altogher.

Naturally we had a lot of discussions on this procedure, as it’s only been around a little over ten years, and we’d never heard of it. But we did a lot of reading about it, and after several talks with his doctor, we decided that it was the right thing for him to do. Particularly since it was a non-invasive procedure in which the device was inserted into his heart through an artery in the groin, much like his last heart valve replacement. An overnight stay would be required, which was no big deal.

There were several tests that had to be done prior to getting final approval by the cardiology team (not to mention his health insurance, but that’s another matter entirely).

But before we could start the process, Covid hit, and although we’ve been extremely fortunate and neither of us or his medical professionals have contracted it, all elective surgeries were put on hold until further notice.

Of course the Watchman is an elective procedure. So we were on hold. For quite awhile. About 18 months or more.

We kept checking with the hospital and his doctors and finally the restrictions on elective surgeries were lifted. We made an appointment as soon as we could with his doctor to discuss the next steps.

When we were finally able to get the appointment  with his doctor we all quickly decided this was the best way for him to go, and proceeded to schedule the testing involved to be able to apply for approval not only within the cardiology group, but also with his insurance company for their approval.

Nothing is ever simple, though. And we also needed to do the surgery by the end of 2021 to avoid a huge out of pocket expense, since he’d already met his deductible for that year. And it was already early in October 2021.

So the process began…but not without a few complications along the way. Of course.

Read the next installment of “Matters of the Heart, Part 30″, to be published on January 24.

Healing a Tiny Heart – Part 15

It’s now been a couple of weeks. A lifetime for two young parents. Long days and longer nights in the hospital…praying, crying, holding each other, and begging their two month old son to be strong and fight. To prove he is truly a heart warrior.

And he did just that.

For those if you who’ve followed this story, you already know how serious the situation was. A two month old baby suddenly diagnosed with not one, but we all later discovered, THREE, separate heart problems which required life-saving emergency open heart surgery. A baby who was already experiencing life-threatening heart failure.

Baby Cash had his surgery just two weeks ago. He was supposed to stay in the hospital at least a week, if not longer.

That did not happen. He was released and went back home in just five days.

He continues to improve on a daily basis. Some of his scars are already fading. The one in his chest looks so much better already. And we are betting by next summer we will hardly notice it.

He is back to his regular sleep schedule, or just about, depending on what time he needs his medications. He’s eating normally, and his appetite is increasing, and his personality is developing more every day. Although he has to be picked up and held differently than most infants until his breastbone heals from where it was cut open, he is just the same Cash as he was before the surgery…except healthier and happier. Because now he breathes easier, and his little heart is working just like it’s supposed to.

His mom put it beautifully into perspective just a few days ago.

“It’s so hard to believe just two weeks ago I felt as if my whole world was crashing down. I was watching strangers take my baby, my perfect little baby boy, to be operated on. And not knowing the end result.

I was praying to God like I never had before.

It was a whole new feeling. I was sick to my stomach. We were waiting almost 8 hours to be able to see him. And when we did, he looked nothing like how I had last seen him. He just laid there very still, pale, almost like a wax figure. He looked nothing like my baby.

The only movement was his chest moving up and down, all from a machine that was breathing for him. There were tubes everywhere. Just thinking about it still brings tears to my eyes. I couldn’t imagine life without my baby boy.

Looking back on everything, it’s crazy to see how far he has come in just two short weeks. I know that he will have no memory of this, and the scar will fade, but I will be sure to let him know that his scar is proof that God heals; that God answers prayers.

I have always looked at my scar from my c -section in the mirror and wished his birth went as we’d planned, but without that scar I wouldn’t have him.

We both will rock our scars with pride!”

Cash is doing beautifully. Although he’s not allowed a lot of visitors right now until he has his next round of vaccines, he’s had a few times to go out with his parents and enjoy the fresh air and the beauty of the world around him.

Just see how wonderful this little man is looking! Would you have known he’d had such a serious surgery just a few weeks previous?

It’s stories like this that reminds us how important life is, and reminds us not to take anything for granted. It also reminds us that we have a Lord who is ever faithful, and who hears our prayers, and acts upon them.

God is good, and all the time. Baby Cash is a reminder of just how good He is.

Thanks to all of the staff at CHKD for taking care of this little miracle. And for the other work they do with so many thousands of other children.

Previous posts in this series can be found in the “Healing a Tiny Heart” Category on this blog.

Healing a Tiny Heart – Part 14

This story could have had a number of different endings. When Ashley B and Coleman found out that their two month old son had a huge hole in his heart which needed open heart surgery to repair, they began a journey that, although they prayed would have a happy ending, they really didn’t know.

They uncertainty and fear was tremendous. Although they had faith in the doctors, faith in God’s healing power, this was their baby. Their firstborn child. They were just adjusting to being new parents, to a new way of life which now included three of them instead of just two.

Now this.

But this has been an incredible journey. A journey of faith, and a journey of miracles. This journey has brought many people together who didn’t even know each other before. But they were brought together because of being asked to pray for one little baby boy. And they did.

Cash’s heart surgery was successful. “Almost textbook” to quote the surgeons. But for his parents and grandparents, “textbook” was not a word they would have chosen.

But he continues to do well, and his mom continues to update us on his progress. Hopefully he will be able to come home in another week or so, and they can begin to resume their “new normal” life, loving and caring for their son, and doing the things new parents want to do with their baby.

Until then, Ashley B continues to share her story with us. And we continue to lift this family up in our prayers.

“This morning [October 14] was the first time I saw Cash’s scar. It was really a whirlwind of emotions. I started to cry, but then the tears went away. Why was I crying? My boy is a true fighter. Look at him and all he has been through. My little Rockstar. God is so good.

Our boy has had an eventful morning. In 4 hours he has had 2 x-rays, an EKG, an echocardiogram, (ultrasound of his heart), his drainage tubes taken out, and the pacemaker wires removed.

This is my baby. My baby who was born at 7lbs 8 oz, 21 1/2 inches long. Pure perfection. He came out perfect. He had a head full of hair, big bright eyes, perfect skin, ten toes and ten fingers.

Fast forward just two months, and this is my baby now.

As a mother, it kills me to look at my baby with these scars, not because his skin isn’t perfect anymore, but because I know the hell he went through to get them. I know the heartache it caused to watch him go through all of this and get those scars, and I feel completely helpless.

Cash will have two scars in his stomach from the drainage tubes and a scar on his chest forever. I will tell him every day that he is mommy’s little hero. Our strong boy. A fighter. A heart warrior.

He is now breathing completely on his own, the wires and tubes are gone. It’s horrible watching your baby being in pain while the nurses are working on him. It’s even more horrible that you can’t pick him up and comfort him.

I knew the moment I felt Cash kick in my stomach I had one tough cookie, but I had no idea how truly strong he would make his Daddy and I become.

We love you so much Cash. You are our whole world, and we thank God every day for giving you to us.”

Ashley B
October 14, 2016

Cash’s scars will fade, Mommy. But he will forever wear them as his badge of courage. As a reminder of his strength and determination. Mommy and Daddy will have their scars as well, but they will never be seen on the outside. They will live forever inside of your hearts, in your spirits, and in your memories.

And today, October 15, they finally got to once again hold their son!

Cash is not the only one who has proven himself to be a tough fighter. You two have as well. That’s what parents do when their children are hurting, when they are sick.

We are so proud of all of you.

Thanks to all of the staff at CHKD for taking care of this little miracle. And for the other work they do with so many thousands of other children.

Previous posts in this series can be found in the “Healing a Tiny Heart” Category on this blog.

Healing a Tiny Heart – Part 13

Looking back, it’s hard to believe that it was only last Monday, October 3, that Ashley B and Coleman’s world was rocked with the news that their two month old son had a huge hole in his heart that would require surgery to repair. They have been through more in the past ten days than many more young parents could ever imagine.

Their initial reaction was shock, and then, of course, fear! Fear of the unknown. Fear of what lay ahead. Fear of losing their firstborn child.

But Ashley B and Coleman have persevered; they have been strong, even in their moments of weakness. They have relied on each other, and on the Lord. They have relied on the doctors and nurses at CHKD, and they have prayed. Their family and friends have surrounded them with love and support.

Just one long week after baby Cash was diagnosed with the hole in his heart, they found themselves sitting in a surgical waiting room, waiting for the surgeons to repair his baby heart. Waiting for the news they both dreaded and anticipated. And they were so relieved when the news was good!

This series has been mostly written by his mom and dad. Their own words are for more powerful than any I could write.

Here is the latest update:

“With so many medical terms and so many things going on, we have heard things a hundred times over, and then sometimes not really hear them at all.

Apparently our little guy had one more thing repaired that I just caught while hearing the medical team making their report last night. He had both an ASD and VSD repair apparently. ASD is more common. One in twenty people have one and never know. [ASD stands for Atrial Septal Defect which causes a hole in the wall between the heart’s upper chambers. VSD is Ventricular Septal Defect which is a hole between the lower chambers of the heart. ] Cash’s was a small flap in between the two upper chambers, while the VSD repair was the very large hole in between the two bottom chambers.

The good news is that Cash finally got to eat ate last night [Wednesday night] for the first time since Monday night. And this morning his catheter was removed. The drainage tubes are having more fluid/blood draining than they originally anticipated, so he may have that in for another day.
His blood pressure is still high. Last night they had to increase the meds; this morning they are lowering them. His blood pressure needs to be down before the IV can come out of his neck.
He will still have the other two IV’s in for a while.

Our poor baby was very restless all last night, but seems to be feeling much better with the catheter out. Who wouldn’t?! The doctors also said the pacemaker wires on his heart will most likely be removed today. Things are moving forward, and as the saying goes, slow and steady wins the race. Please keep the prayers coming. God is listening. And acting on them!”

Ashley B
October 13, 2016

Thank you all for taking the time to read about this sweet little boy. Thank you for your prayers.

Previous posts in this series can be found in the “Healing a Tiny Heart” Category on this blog.

Healing a Tiny Heart – Part 12

This post was written yesterday by Ashley B, on her and Coleman’s second wedding anniversary.

Most couples celebrate their wedding anniversaries, especially during the first few years, with a romantic dinner, a night out on the town, or even a weekend away in a romantic hotel or bed and breakfast. Just the two of them.

Ashley B and Coleman spent their second wedding anniversary having dinner at the CHKD cafeteria, while their two month old son lay in his crib in the PICU unit, recovering from open heart surgery the day before. Not exactly the romantic evening they’d planned for this event even a couple of weeks ago, but where else would they spend their evening? They certainly wouldn’t leave their son’s bedside for very long. He needed them, and they needed him.
Yesterday they received one of the best anniversary gifts they could ever have…their infant son’s open heart surgery was successful.

“While today we celebrate our two year wedding anniversary, we have a little warrior who has given us the greatest gift. A true miracle from God.

He is a fighter. It’s still so hard seeing him like this and not being able to hold him.

He hasn’t been able to eat since Monday night. He still has a catheter, drainage tubes, an arterial IV, as well as two other IV’s, and is on oxygen. But we have overcome another huge hurdle; the swelling is down and the breathing tube is out!!

His blood pressure is still higher than the doctors would like to see, and they noticed his urine is cloudy, which could mean there is some infection starting. Which we certainly do not want.
Today I’m really trying to reflect on everything my husband and I have gone through, not only in our two years as husband and wife, but in our ten years together. From boyfriend and girlfriend, to fiancé and fiancée, to husband and wife ,and now, the best part, to mommy and daddy.

The day I married my husband was the best day of my life, until the day we had our son.

Pretty close to the day I found out I was pregnant on December 4, 2015, I had prayed for Cash. I think the day we bring Cash home with a healthy heart will be just as comparable.

Happy Anniversary to us!”

Ashley B
October 12, 2016

These are the times when we realize how very lucky we are for such excellent doctors and nurses and hospitals to care for our children when they are so ill. These are the times when we truly realize what’s important in our lives.

Most of us will thankfully never go through an ordeal like this. We will never know the worry, the stress, the anxiety, the fear, of wondering what each hour will bring.

Parents, hold your children close. Hug them. Kiss them. And tell them how much you love them. Spend as much time with them as possible. They are a true gift from the Lord, and you as parents are entrusted with those children that were selected just for you. It is your responsibility to care for them, and raise them to be everything the Lord intended for them to be.

Little Cash is a warrior. He will have an amazing story to tell one day. He has already begun his warrior journey, and is winning battles none of us would ever want our children to even have to fight.

I look forward to seeing the adventures this little man will go on, and the proverbial dragons he will slay, as he grows from an infant to a child into an adult.

Previous posts in this series can be found in the “Healing a Tiny Heart” Category on this blog.

Healing a Tiny Heart – Part 11

I will not write my usual intro for this installment. Those of you who are following this story already know what has been happening. For you newcomers, please follow this link to the entire series.

The following is Cash’s mom’s account of yesterday…surgery day. I have only edited this for grammar and punctuation. Ashley B is not only a loving and brave new mom, but she has a way of expressing her thoughts and feelings that will touch your heart as you feel her pain. And rejoice with their good news.

“God is so good. Thank you everyone for the prayers. Please keep praying; our little Rockstar still has a few more hurdles to jump through.

Last night I don’t think anyone rested. Around 5 pm we had to watch our little boy being held down and pricked several times for lab tests. Several hours later we were told they needed three more labs; he was held down and stuck several more times.

His blood kept clotting and his veins were blown. It took several nurses to get two vials of blood. Upsetting him caused his already overworked little heart to push its limits to 215! Now it was 1 am.

Our little man had to stop eating at midnight (he eats about every 3 to 4 hours), and with still one more lab to do…more bad news… his IV was leaking. Now it was 2 am and our little guy was screaming with us in tears while he is held down again and being poked some more. It was so heartbreaking. But after everything was finally over he smiled at us and went to sleep!

At 5 am he had to be weighed and checked out. Now it was only two hours away from “go time”. He was very upset because he was so hungry. We were on edge trying to hold and love on him as much as we could. I wish I could have slowed down the clock.

They let us walk with him to the OR doors …the most terrifying walk of my life. At the OR doors we kissed our little boy, told him to be strong, and that we loved him so So SO much! He smiled at us as if to say, “it’s ok guys! I got this!”

Again time stopped.

In the waiting room it seemed like hours, days, months. Then the phone rang at 9:05 am for the first time. That’s the hardest phone call to pick up. I had Coleman answer. The whole room was silent.. waiting for a reaction. Watching Coleman’s face and tone. You could hear a pin drop.

He was stable, and they had begun. At 10:00 the phone rang again. He was on the heart-lung machine, meaning his heart was stopped and a machine was pumping blood for him.

At 11:20 we had another call. He was off the heart-lung machine! About 12:00 one of the surgeons cane out. Again, we all sat there trying to read him; trying to guess and prepare for what he was going to say.

“Everything went beautifully! They are stiching him up now.” We all took a deep breath. A huge weight lifted. With tears of joy I thanked God over and over again.
I could have leaped into the surgeon’s arms and given him a huge hug. Not long afterwards, the second surgeon came out and explained there was a little bit of a heart rhythm issue that Cash was having.

Now it was a waiting game again as to when we would see him. No one can ever prepare you enough for seeing what we had to see our precious little warrior going through. I cannot even put it into words what it was like seeing him for the first time after surgery.

It was my baby but not my spunky lil smiley-funny-face making baby. He looked like a doll as a machine breathed for him. A drain tube from his heart was coming out of his stomach. He had a catheter, 3 IV’s (one in his foot, one in his arm and a big one in his neck). A breathing tube took up his tiny little face, along with pacemaker wires and several other wires and tubes.

I thought seeing him would be the hardest, but no, it got worse watching him fight through the sedation, waking up and kicking. Watching him cry, but with his eyes closed and no noises coming out. Now that’s hard. Because now you know he is uncomfortable, and you can’t pick him up and love on him; you can’t kiss his sweet little face.

We were told the breathing tube would be removed shortly after surgey, however Cash had some swelling that hopefully will go down by the use of steroids, but it cannot be removed until this happens. This week has been so hard.

Today has been harder.
Cash is such a fighter. I love that little boy more then he will ever know. He is a true miracle from God. Tomorrow [actually today, since this was written on October 11] is a new day; our 2 year wedding anniversary. And although this is definitely not the way we planned on spending it, we received the greatest gift ever. We are blessed that we will get to spend it together, even it if is in ICU.

Our baby’s huge hole in his heart was fixed today.

Thank you all so much for the prayers. Please continue to pray for Cash on his long road to recovery. ”

Ashley B
October 11, 2016

Previous posts in this series can be found in the “Healing a Tiny Heart” Category on this blog.

Healing a Tiny Heart – Part 10

A parent’s worst nightmare is learning something is seriously wrong with their child. It is traumatic at any age in that child’s life, but far worse in the case of an infant.

Being told your 2 month old son has a huge hole in his heart, which will require open heart surgery to correct, is something no parents ever want to hear.

Knowing you have access to some of the best doctors in the country at CHKD helps some, but it still doesn’t ease that knot of fear in the pit of your stomach. You’re still scared.

Worrying about the upcoming surgery is difficult.

Seeing your baby boy wheeled down the hallway to an operating room where you cannot go with him is even harder.

Waiting for word from the surgeon that the operation is over, and that it was successful, is even harder.

Watching for the door to open, waiting for an update, makes time stand still.

Seeing the doctor walk finally out, no expression on his face, paralyzes you. But that’s how they’re trained.

The good news, though, can be read in this message from Cash’s daddy Coleman:

“Quick update. Cash’s surgery went very well! The doctors say it was almost textbook perfect. They said the only thing was, that once they took him off the heart/lung machine his heartbeat was abnormal for about 10 minutes, and then fell back into sync. They told us tonight or early morning it could fall back into abnormal beating again [which is unfortunately part of open heart surgery], but they are confident with medicine being given for a few months, they can fix it if needed. But they like to give it 10 days or so to fix itself first.
Again, we are so blessed beyond belief with so many prayers…by us and by all of you. I know there were so many angels in the OR with Cash who helped make this possible. I just know it. I’m feeling so happy right now!

Nothing in the world can prepare a parent to see their child this way, but little man loves us, and we love him. We are so BEYOND grateful for a successful surgery. I will continue to pray for the success to last a lifetime.

Thanks to Dr. G, Dr. T, CHKD and UVA, and to Jesus for instilling the knowledge in these people to fix my heart warrior, my buddy, my miracle, my son.”

October 11

What heartfelt words from a father whose infant son has just been given a second chance at a wonderful and exciting life.

Baby Cash still has a ways to go. He will be in the hospital for at least two weeks. He will be closely monitored, and will require additional medications for quite some time. But he made it through this, and he and his parents will have an inspirational and uplifting story to share.

This series is not over. Because this child’s real story is just beginning.

Please continue to keep them all in your prayers.

Previous posts in this series can be found in the “Healing a Tiny Heart” Category on this blog.

Healing a Tiny Heart – Part 9

A parent’s worst nightmare is learning something is seriously wrong with their child. It is traumatic at any age in that child’s life, but far worse in the case of an infant.

Being told your 2 month old son has a huge hole in his heart, which will require open heart surgery to correct, is something no parents ever want to hear.

Although the majority of the posts in this series were written by his parents, this post is mostly written by me. Cash’s parents have far too much on their minds rigfht now to take the time to write. So I am doing it for them.

Right now, Baby Cash is in surgery. This two month old baby boy is undergoing open heart surgery to repair a large hole in his heart. The surgery is expected to take anywhere from four to six hours.

That’s four to six hours for nervous and scared young parents to sit in a waiting room with their own parents as they watch the clock slowly tick the minutes away. They will jump every time the doors open, or every time the phone rings in the waiting area, waiting for news about their infant son.

It’s been a long week for Ashley B and her husband Coleman. A long week since they were told by their new pediatrician that their seemingly healthy two month old son had a large hole in his tiny heart which would require open heart surgery to correct.

It’s been a whirlwind with medicines, rushed trips to the hospital, and suddenly being told to pack a bag and bring him immediately to CHKD, where he will be staying for a while.

His current nursery is not decorated with the nautical blue and gray whales and boats that he’s used to. Instead he’s in a pediatric crib, hooked up to iv’s, wires, and monitors, with nurses watching every breath he takes, every beat of his little heart. With his mom and dad not leaving his side, sleeping in the room equipped for the parents of their very special patients. As close to him as they can be. Protecting him as much as they can.

Nether Ashley B nor Coleman got much sleep last night. They were too worried, too keyed up. The love and heart of their life would be undergoing an operation in the morning that’s scary enough for adults, let alone babies. All they wanted to do was watch their son sleep, and tell him over and over how much they love him. As much as they wanted to grab him and take him home, away from this nightmare, they couldn’t. His life depends on this surgery.

This was written yesterday, as told by Ashley B:

“Early this morning we met Cash’s surgeons as well as many members of the team who will be working with the surgeons before, during, and after the surgery. They were very confident which helps relieve some of our worries. They made it very important to point out how hard it would be to see him after surgery. Let’s just say I’m not prepared…I don’t think anyone can ever prepare to see their child like this. I wish I could crawl in that crib with him and sleep but the nurses won’t let me. I’ve tried. We have a long day ahead but are ready for our little hero to get his heart fixed. Keep the prayers coming. Cash is a Rockstar! He’s got this.”

Then later, in the middle of the night, I received this text:

“This night so far has been horrible. They took blood from him at 5:00 pm. Poked him in 2 spots. And told us he couldn’t eat at 2:00 am. Now they told us 12. And that they need 3 more vials of blood. I had to step out and cry while poor Coleman has to help hold him down. His heart rate is skyrocketing and now they just told us his IV is leaking and they have to re-do it. I have to listen to my baby scream again. And I can’t even comfort him with milk…”

My heart broke again for them.

And now they are all sitting in that waiting room, praying, worrying, wondering, and praying some more for good news from the surgeon who drove some four hours from the University of Virginia to CHKD to perform this lifesaving surgery on little Cash. As confident as they are in the surgeon’s skill, they’re still scared to death.

Following the surgery Cash will remain in the hospital for several weeks while being closely monitored by a group of extremely dedicated and highly professional doctors and nurses at Children’s Hospital of the Kings Daughter’s (CHKD) in Norfolk. When he is released, it will have been some three weeks for him being away from his own home.

Open heart surgery is scary for anyone, no matter the age. My husband had to undergo open heart surgery for a heart valve replacement less than a year after we were married. At the time I didn’t know whether I’d be a young widow or not. As much as my head told me he’d be fine, and he was, my own heart was terrified. He wasn’t worried until the night before when we’d toured the ICU where he’d be recovering, and saw actual patients who’d just had similar surgeries, wires and tubes and monitors hooked up to them everywhere. Seeing all of that suddenly made everything so much more real.

My husband’s surgery was 31 years ago. Open heart surgery has changed quite a bit since then. When he had to have a second surgery done some 18 years later to replace the valve again I wasn’t quite as nervous. But still, the heart is one of the two most vital organs in your body. How can you not be scared?

My emotional heart is aching for Ashley B and Coleman, crying with them, and praying with them. Our daughter and son in law, very close friends with Cash’s parents, are equally nervous and worried. Baby Cash and our granddaughter Rachel are very close in age, and already seem to know each other.

I know this story will have a happy ending. But it’s a terribly emotional roller coastal ride for the parents, grandparents, and friends. Please take a moment to pray for this sweet baby boy and his family. Cash is a fighter, and has a great future ahead of him in his adult life. His story will encourage many others.

But now, we all wait…..

Previous posts in this series can be found in the “Healing a Tiny Heart” Category on this blog.

Healing a Tiny Heart – Part 8

A parent’s worst nightmare is learning something is seriously wrong with their child. It is traumatic at any age in that child’s life, but far worse in the case of an infant.

Being told your 2 month old son has a huge hole in his heart, an enlarged heart from it working overtime to compensate for that hole, as well as having fluid in his lungs which is affecting his heart function even more, is devastating.

Ashley B and Coleman are fighting for their son Cash. Their family, extended family, and friends have rallied to their side, and we are all supporting them as much as possible as they begin this long and unbelievably frightening journey.

Even after having his surgery to repair the hole, Cash will still have to remain in the hospital for several weeks while being closely monitored by a group of extremely dedicated and highly professional doctors and nurses at Children’s Hospital of the Kings Daughter’s (CHKD) in Norfolk.

We now have a surgery date for this little guy. It’s Tuesday! Tomorrow!

“Ashley and I can’t even begin to express how grateful we are for all the love and support you all have sent our way. Helen and Julie [friends of theirs] starting a GoFundMe site all on their own was an incredible and gracious surprise. What a huge heap of help this will be to offset medical costs. We truly feel like we don’t deserve all of this. Honestly with all the hate in this world, and never seeing anything good on the news anymore, it is so incredibly uplifting to receive all the kind words and prayers from so many people.

After the surprise of the GoFundMe site I was blown away by the support and the insane amounts people donated; people we don’t even know. We are literally awestuck. From people we haven’t seen in years to close friends and even complete strangers to actually take the time to donate their hard-earned money for our son, it just blows me away. And it makes you realize just how awesome people are! I truly can’t express the gratitude we have for each and every one of you and how much your words are motivating us.

As for Cash, he is like an entirely new baby today, his liver swelling has gone down, not completely, but it’s headed in the right direction. The bilirubin count which was also very high has improved. His heart is still working extremely hard, but has also improved due to the medical care here. He is much healthier and prepared for surgery.

The doctors stated the half pound to a pound he could gain by waiting to the end of month isn’t a huge difference in the surgeon’s eyes, so an extremely qualified doctor from UVA Medical, the doctor that we really wanted from our research, a doctor who specializes in severely complicated VSD surgeries, drove down here yesterday. He will be meeting with us Today and performing Cash’s surgery on Tuesday. Keep the prayers coming! They are working!

wdding-photoAshley and my two year wedding anniversary is the day after the surgery, so we are counting on Cash to give us the best anniversary gift of our lifetime!

Thank you so much again all of you!!!!”

October 8, 2016

Previous posts in this series can be found in the “Healing a Tiny Heart” Category on this blog.

Healing a Tiny Heart – Part 7

A parent’s worst nightmare is learning something is seriously wrong with their child. It is traumatic at any age in that child’s life, but far worse in the case of an infant.

Being told your 2 month old son has a huge hole in his heart, which will require open heart surgery to correct, is something no parents ever want to hear.

Baby Cash will be having open heart surgery on Tuesday. He will still have to remain in the hospital for several weeks while being closely monitored by a group of extremely dedicated and highly professional doctors and nurses at Children’s Hospital of the Kings Daughter’s (CHKD) in Norfolk.

This series is their story, told in their words. I have only edited them. And I could not ever write the following post as well as Cash’s mom has done.

“Nerves…my nerves are shot today. I try to sleep but my mind just doesn’t stop going. My stomach is sick.

Cash knows no different; he is a strong, happy boy. His smile really does just light up the whole room.

I’m so nervous to meet the surgeon tomorrow. To hear possible outcomes and that in just two short days this will be happening. Open heart surgery on our 10 week old 10 lb baby.

I have had the ability through social media to talk to some amazing families of CHD warriors who have shared their stories, offered advice, and words of encouragement.

Here is a little piece of advice I wanted to share that was given to me from a CHD parent:

‘Your health mental and physical is important for a good outcome for all. Document your child’s journey. You will have lived it, you need to be able to recreate the story for them. Take pictures of things you probably won’t want to. It will be important later. Trust in God. Remember this is part of him and you. Good luck and God bless, praying for a great outcome.’ “

Ashley B
October 9, 2016

Ashley and Coleman, we are all praying for you and Cash. I do know how scary it is for a loved one to be facing open heart surgery, because my own husband has had it twice. The first time we hadn’t even been married a year, and I didn’t know whether I would be a widow before our first anniversary. Yes, I thought that. But he is fine, as you know, and has actually come through two such surgeries.

It’s more frightening when it’s your child, though. I cannot truly imagine. But God has this, and we are all joining you in praying and believing for total healing for your precious little one.

Stay strong meeting the surgeon. Ask questions, as many of them as you can think of. In this situation there are never too many questions, never one that’s dumb or silly. The surgeon is the expert; you and Coleman are not. You’re learning more than you ever wanted to learn, and have become your son’s greatest advocate. As it should be.

Previous posts in this series can be found in the “Healing a Tiny Heart” Category on this blog.

Healing a Tiny Heart – Part 6

A parent’s worst nightmare is learning something is seriously wrong with their child. It is traumatic at any age in that child’s life, but far worse in the case of an infant.

Being told your 2 month old son has a huge hole in his heart, which will require open heart surgery to correct, is something no parents ever want to hear.

Baby Cash will be having open heart surgery on Tuesday. He will still have to remain in the hospital for several weeks while being closely monitored by a group of extremely dedicated and highly professional doctors and nurses at Children’s Hospital of the Kings Daughter’s (CHKD) in Norfolk.

This series is their story, told in their words. I have only edited them. And I could not ever write the following post as well as Cash’s mom has done.

“October was always my favorite month. It’s jeans and hoodie weather. The leaves change, the trees put on a beautiful display of colors, and the nights are perfect for bonfires.

I had so many things planned for this month: our first fall family pictures, taking Cash to the pumpkin patch for more pictures, carving a pumpkin for him and dressing him all up for his very first Halloween, along with Coleman and my second wedding anniversary on October 12.

Now in six short days our lives have drastically changed. October…once my favorite month… has become one of the most challenging times of my life.

A month of pure heartache. A day before our wedding anniversary Cash will be having open heart surgery. A surgeon from UVA Medical will be coming down on Sunday to meet with us on Monday. He deals with more the complicated heart surgeries.

I’ve never been more scared in my life.

Meeting with several doctors a day to get a game plan established, I sit here still…motionless… listening…or should I say, trying to. While I sit staring at Cash’s eyes as my own fill with water, trying to hold back the tears long enough for everyone to leave the room.

I’m forcing down food and sleeping with what seems to be my eyes open.

These short 6 days have been hard, but they are trying to prepare us for harder times.”

Ashley B
October 8, 2016

Previous posts in this series can be found in the “Healing a Tiny Heart” Category on this blog