Tuesday, February 14, 2012

Joshua's Heart Story

On November 5, 2003, Joshua was born at home. We did not know at the time that he was born with a Congenital Heart Defect: Coarctation of the Aorta. Our midwife didn't catch it, the homeopathic doctor we saw occasionally for illnesses didn't catch it. His first full pediatric examination took place after we switched doctors following the birth of our third child. On our first visit, the PA heard his murmur immediately and set in motion the series of tests that changed our lives. That was in July, 2007, and Joshua was 3 1/2 years old.

Here is a series of blog posts (with links) that were written at the time and later on as he recovered. As we all recovered.

On Thursday, Aug. 23, 2007, the day after we had running water again (after 10 days without), Josh and I went to see his pediatrician to talk about the results of his echocardiogram. She told us that Josh has coarctation of the aorta, which she described as a narrowing, an abnormal narrowing. She couldn't tell me the severity or really much else about it, but told me that she was going to set up an appointment to see a pediatric cardiologist in Grand Rapids. By the time I got home there was a fax waiting for me saying that Josh could be seen the next day. So the next morning we packed the kids up, took Emmy over to Great-Aunt Kim and headed down state. Grandma M drove up from Indiana and met us there. We were there for over 3 hours, had another echocardiogram, an electrocardiogram, and, of course, spoke extensively with Dr. Lacina, the ped. cardiologist. The sobering news was that Joshua needs surgery to repair and open up his aorta. We were sent home that day numb, in shock, and then had to wait until Dr. Lacina could speak with the surgeon and get back with us to schedule the surgery. It was NOT a fun day. Aug. 18, 2007 "Not a Fun Day"

We left for Grand Rapids early Tuesday morning with Josh and Elayna in tow. Mom and Dad stayed behind to pack up their things and do some housework for me, and brought Emmy down with them later in the day. We arrived at the hospital and did our registration and pre-op testing out of an enormous playroom. They wheeled in a portable computer and asked questions while we sat and watched Joshua play. They came and put a numbing agent in the form of a cream on both of his arms and taped it in place, then sent him back off to play. 20 min. later they came and took us to a separate room where he never felt them draw blood! Then it was back to the play room again. For each test performed it was the same, easy, smooth, and as pain-free as possible. And nothing scary or painful was ever done in the playroom. Their philosophy is to have "safe" areas, and the playroom is one of those.
After his testing, we met with the surgeon, Dr. Neal Hillman, and the anesthesiologist. During that meeting, we learned that because Joshua's narrowing of the aorta (coarctation) affected not only his descending aorta but also the arch where the corotid arteries branch off, that it wasn't probable that they would be able to fully repair all that needed correcting through an under-arm surgery, which was the plan, as far as we knew, up until that point. What this meant to us was that instead of a soft-tissue surgery not requiring the heart/lung machine, we were suddenly faced with a much more invasive and complicated surgery that would require separating his sternum and putting him on the machine. It was an incredibly hard moment and I really wanted to run screaming from the room clutching my poor little Toad to me. But I couldn't do that, I had to be calm and not lose my grip on reality.
Later we checked in to the Renucci Hospitality House, and tried to settle in for the night, played some games, tried to watch some TV, and gave Joshua a bath. There were moments of disbelief, terror, many silent tears as the children slept and many prayers that night. Sept. 25, 2007. "Arriving at the Hospital"

Despite my reluctance the morning came. I woke up to see Colby laying in the big bed with Josh and Emmy kind of strewn around him. The surgery was early and we just had time enough to get dressed and rush off - no time to dwell or think about where we were going and what we were doing. Even if we did, there just was no room to be upset, Josh needed us to be strong. We were in this waiting room for a while while they did some paperwork and got Joshua his wrist band and hospital gown. We waited there and sang songs and got some "Toad Toes" as the minutes slowly dragged by. The nurse finally came in and gave Josh his dose of "relaxing" meds, then immediately moved us up to the waiting room where families of children having surgeries that day watched their children play and waited for the moment to come when they'd send their babies off to the ORs. They warned me that Josh would seem hyper at first, then would suddenly crash and become unable to keep his balance. And as he played he suddenly started to fall off his chair. I caught him, thankfully, and carried him back to where the rest of our family waited in a separate sitting area. Ours was the most serious of the pediatric surgeries, and they treated us kindly. Joshua sat on my lap and complained about wanting to go play and how he wasn't going to fall off my lap, and generally got sillier by the minute. It was hard not to laugh with him, his giggle was so unreasonable and so contagious! Then, the anesthesiologist came. He had a certain look in his eye, and I knew it was time. I stood up and handed him my son, who went willingly, blankie in hand, with the Dr. through those double doors and down a hallway, and finally out of sight.
He was not wheeled away on a cold, stark bed, he was carried. And later I learned that he was put under by the use of a mouth and nose mask, before any of his IVs and such were done. I was so grateful that he wasn't scared and in pain after they took him away from me.
When we were composed again, they took us to the Meijer Heart Center and up to the waiting room, where we waited. I don't remember much about those long hours, and I can't tell you how exactly I got through them. Except I remember praying and feeling some degree of peace through those prayers. And I remember thinking of all the other friends and family, and strangers who were praying during that time too, and that comforted me. Elayna and Emmy, and little Levi kept our hands occupied. I remember the PA, Kathryn, coming out to tell us how things were going from time to time, that he was going on the heart/lung machine, that his temperature was being lowered, that the surgery was beginning, and that the surgery was ending and how his aorta was the diameter of two pencil leads instead of the size of a man's thumb, that his temp was being raised again, and finally. Finally. that he was off the heart/lung machine and would be out of surgery soon. There wasn't any leaping for joy moment like I thought there would be, just a gradual ability to breathe easier, I guess because the moment one thing is over you realize there is more to overcome before it's all said and done.
When we could, we went up to the 8th floor Pediatric Critical Care Unit and they let Colby and I go in to see him. I thought the tubes and wires would be hard to see, that they would upset me, but the truth was that all I could see was Joshua. And Joshua was alive! And breathing! And Alive! And after only a few minutes he began to respond. He squeezed our hands and he looked at us for brief moments. That was when the biggest moment of relief came, knowing he was back from the brink and on the road home.
I have some pictures of Josh in his most critical state, which are really too graphic to post here. But if someday you want to see them, you are more than welcome to come here to my home and sit with me on my couch and we will look at them together and cry together and praise God together for the life he has re-given Joshua! "September 26, 2007"

The day after his surgery, Joshua was sitting up and asking to watch Cars, nibbling on crackers, enjoying his balloons from his great-aunt Linda, and sleeping a lot. He didn't talk much, since his breathing tube had made his throat really sore. He kept his blanket close and didn't cry or complain, just rested. My parents had to head out on their long drive home, Grandpa M and Auntie Raini headed back to Indiana with little Levi, and Colby drove north to work for the day before coming back down on Friday. Grandma M stayed for the duration, and traded off with me between sitting with Joshua and staying with the girls in the Renucci house. Breastfeeding was a trick with a 4 month old in one place and a little boy recovering from heart surgery in another. Siblings could only visit for a few minutes at a time, so on the whole, the two situations mixed about as well as oil and water. But the staff was incredibly helpful, Grandma M was indespensible, and Joshua was so calm and collected. He needed information. And as long as he was informed about what was going on so he knew what to expect, he was fine. He handled it all with bravery and calmness. Sept. 27, 2007. "The Day After"

On Friday morning preparations started for Joshua to be moved down to the 7th floor regular pediatric unit and out of the Critical Care Unit. That was an exciting idea, one that involved not being hooked up to monitors and having no more IVs, but that also involved removing his drainage tube from his chest. Neither Josh nor I really understood how awful that was going to be. I knew removing the IVs wouldn't be fun, especially the one in his neck, but I also knew how relieved he'd be once they were out. But the drainage tube was an entirely different ball game. It was traumatic, and painful. But he was promised a trip to the play room after it was over, and as soon as it was out, he was asking to be taken to the play room, so we got through the paperwork and the rest of the preparations, and off we went to the 7th floor! Once we got there, we dropped off our things in the new room and went straight to the play room! He got out of his wagon and walked over to the Cozy Coupe and pushed that around for a few minutes before he got tired. It was exciting to see him playing, and terrifying at the same time! There were germs, and things to trip on, and ways to get hurt, the list went on and on! A few minutes after we got there, Grandma M came with the girls and Josh and Emmy got to play with each other for a few minutes. You could tell they had missed each other. After Josh got tired out and went back to his room to rest, I took the girls back to the Renucci house and Grandma stayed with Josh. The girls took naps and I took a shower, then we came back to the hospital just in time to hear them say Josh could be released that afternoon! Colby came back just about that time, and Grandma and Grandpa J were there for a visit as well, so we all got busy getting things in order to leave the hospital! Unbelievable that he could go through open heart surgery and 2 days later be healing well enough to leave! God is SO GOOD! Sept. 28, 2007. "Moving out of PCCU"

Josh was released from the hospital on Friday afternoon on the condition that we stay overnight at the Renucci house, which is connected to the hospital, and come back early Saturday morning for a final chest x-ray. So we felt it was best to not keep Emmy with us that night for the sake of keeping Joshua as quiet as possible, so she was sent home with Grandpa and Grandma J. Grandma M headed home to Indiana, and Colby and I set up one big bed in our Renucci house room with Joshua on the trundle bed in between the other two beds so he couldn't roll off or fall out if he got disoriented. We were getting pretty settled in for the night around 9 pm when the fire alarms started going off and lights were flashing in our room and the hallways. So we grabbed the two kids and my purse and headed out! We went down the hall to the stairwell and to the lobby where we saw the firefighters and security guards trying to figure out how to reset the alarm system after a false alarm! We left so fast I didn't even have my shoes on! And they're just Crocs! So we went back to our room and the kids played on the bed for a little while since we were all wide awake after that. Sept. 28, 2007. "Leaving the Hospital"

We were told to be back at the hospital at 6:30 am for Joshua's final chest x-ray. So first thing in the morning I took Josh in the stroller over to the hospital and completely got the run around for about 2 hours before we finally were able to get that done and receive the all-clear. Then we went back to our room and got our things out to the car, and packed up Elayna and JOSHUA! into his seat, stuffed his pillow and blanket in around him, took a Deep Breath as we drove away from the parking lot, and headed north. We were going back home, and we were taking our son with us. PRAISE GOD!!! Sept. 29, 2007. "Going HOME!"

At times during those first few days at home I was beside myself with worry that something would happen, a fall, a bump, an internal malfunction, that I couldn't fix, and the experts who could fix were more than 2 1/2 hours away from us. Gradually we began to see that he was growing stronger by the day and that he was sober-minded when it came to keeping his incision and ribcage safe and not overdoing it. Six days after his surgery he was helping me do laundry in the back room. I left to take some clothes to the living room, and when I came back this was what he was doing - sitting on the ledge of the window looking out over the farm. October 2, 2007. "The Road To Recovery"

When we left the hospital, Josh still had many bandaids and even his 3 electrocardiogram sensors and wires stuck to his chest. There was no way he was going to let anyone near enough to touch any of those things to remove them. In his mind he equated the removal of sticky gluey substances to a lot of pain. So we figured they'd fall off eventually anyway, and left them alone. Within the first day home he had caught the monitors on things and pulled them off on his own. By the one week mark, the only thing he had left on him was the bandaid over his tube site suture. The look he has on his face here is because I asked him if I could take it off! The answer was a definite NO! It fell off in bed a couple days later. (unfortunately, it was a bit traumatic going to the local ped. to have the stitch removed. She also tried to remove the long dissolvable stitch running the length of his scar that was not meant to come out) Oct. 3, 2007. "One Week Later"

We've been making so many changes in our diet to be more heart healthy and one of the favorite changes has been the reintroduction of fresh home made bread! I have two breadmakers and Josh and Emmy enjoy watching them kneading the dough! We also had a beautiful rainbow over the valley on this day, two weeks after Joshua's surgery. God never forgets his promises. Oct. 10, 2007. "Two Weeks Later"

As you can see, his scab had mostly gone by this time and so much of the redness as well. Even the swelling beneath the skin had gone down significantly. It looks really good for less than 3 weeks later! Oct. 15, 2007. "Day 19"

Life is beginning to feel normal again after one month of recovery. Josh still gets tired more easily than normal, but his bursts of energy are stronger than before his surgery. He still can't lay flat on the floor on his stomach, and it still hurts him to be picked up under his arms. But when he's dressed and running around, it almost seems surreal that a month ago he was laying in a hospital bed. Oct. 26, 2007. "One Month Later"

On Oct. 31, Joshua and I drove down to Grand Rapids to see his Pediatric Cardiologist for a post-surgery checkup. We were planning to have another echocardiogram done, which I knew would be traumatic for Joshua, having anyone touch his chest is likely to get some flailing and many tears. So Emmy and Elayna both stayed with Grandma J all day, and it was just Josh and I. We got down there early and walked through the hospital and visited his nurses in the NCCU. Then we went to his appointment where they took an EKG and blood pressures on all 4 limbs, then based on those readings decided he didn't need to have an echo! Thankfully! Everything looked good and they weren't worried about his blood pressure or about any possible water retention around his heart. We will go back in 6 months for another checkup! After his appointment there, we went back to the Renucci house where we baked chocolate chip cookies for the residents currently staying there to enjoy. We met another family from our area staying there for their daughter's chemotherapy treatment. I hope the small gesture of fresh baked cookies will be as much a blessing to someone there as it was for me when others did that during our stay. But for Josh and I to come back there and give something back, the biggest blessing was ours. We will go back and do that again soon.
On the way home there was a beautiful double rainbow shining through the rain. It was such a beautiful reminder of God's faithfulness to His promises. Not that I could forget so soon how He has been faithful to us! Oct 31, 2007. "Check-up Day"

On Sept. 26th, 2008, we marked one year since Josh's heart surgery. Josh and I went out for a special breakfast while Grandma J. watched the girls. It was interesting to hear what Josh remembered about that time and those days in the hospital. I'm glad to be past the one year mark. One whole year of health, one year that the surgery has helped him grow stronger and one year closer to a normal life. It's a relief, and we praise God for His mercy and His healing touch!! "One Year Anniversary"

Yes, amazingly, another year has passed since Joshua's surgery. I am sitting here wishing I could find a special way to commemorate this passing of time. I like to look back and realize how far he has come, how well we have all survived. There doesn't seem to be words enough or actions enough to Praise the Lord like I want to!

Looking back, I can see that there was life before the surgery, and life after. It’s an epoch. Much the same as getting married, or having a baby is a moment that you reflect on in the same manner. Life before marriage, life after marriage. Life before babies, life after babies. Nothing looks the same. It’s a different world that you live in, marked by this one specific moment.

It was like going through a tunnel. I could look back on life before we found out he needed surgery, and see the bright light of blissful ignorance, but at times it was nearly impossible to look forward and be sure that there was light up ahead of us too. I’m pretty certain the tunnel was not only dark and VERY cramped, so that you had to crawl through with “fingertips and toes” as Jake would say, like the caves we used to explore, but it was also COLLAPSIBLE. I know this because I remember the feeling of being run over by a bus.

It doesn’t hurt quite so bad to look back on the pictures. I know how the story turns out. I am no longer plagued by the fear, the what-ifs of those days. I can look at my little boy, keeping up the pace with all of the other kids, oblivious to how he is different. Because, quite honestly, at this point he really isn't. He remembers the events of that time, but not in the same way we remember them. He knows it was painful, but he has no memory of any fear. The fear was all ours. Fear comes from knowledge of what could happen, what might happen.

What a time that was. It took me a YEAR before I could meet a new mom, or find a new kid on the playground that I didn’t feel this strange compunction to tell the story to. I needed to tell the story, to find a thread of commonality between me and the other moms who have been through this. I couldn’t control it at times, even when I tried! I’d be all sitting there chatting with some mom about how old her kids were after 15 minutes of watching our kids play together and the next thing I knew I was grabbing Josh on a run-by and lifting up his shirt. I think I scared some of those poor moms and they may never have returned to the same play ground again for fear of running into me.

But I was so thankful for the moms who saw the scar and then told me the story of their own child’s walk down the path of recovery. To look into each others' eyes and nod our heads solemnly as we gave recognition of the strength it takes a mother's heart to watch her child suffer and the anguish we feel when we are helpless to fix it.

I’m much better about it now. I haven’t even told a single other parent at his school. His teachers? Yes. Of course. But I haven’t had this compulsion to tell random strangers now for several months. It’s good. It means that I’M recovering, finally, and my emotional scars are fading, too.

He doesn't remember what his voice used to sound like, before the partial paralysis of his vocal chords. He doesn't remember what exactly the difference was in how he felt before as opposed to how he feels now - to him his life was "normal" before the surgery, and is "normal" now! It is such a joy to watch him grow and thrive and just simply be a little boy. I can't describe how proud I am of him and the kind of thoughtful person he is becoming! I look forward to being able to talk to him as he gets older about his perspective on all of this.

Praise God for His healing touch, for His bountiful mercies, for the wisdom, knowledge, and compassion He gave to the nurses and doctors who helped heal Joshua's heart and give him a second chance at life.

I thought about posting the more graphic pictures, but I still just can't quite do it. They still bring tears to my eyes and it doesn't quite seem appropriate to post them on the web.

~~now almost 6! My handsome little man, an awesome big brother, thoughtful and sweet. Happy 2nd HeartDay, Josh. "2nd Heart Day" (2 year anniversary)

June 13, 2009:

We were driving through that little city where Josh had his heart surgery and I found myself in disbelief that it has been so long. Almost 21 months have passed since that day. The skyline is changing as they build newer and bigger buildings around the hospital – a new parking garage, a big oval glass building that I think is a cancer pavilion, a tall thing still being worked on by the same cranes that Josh looked out on with wonder from that hallway window.

When we were away last week we went to the pool one day and the kids all enjoyed it very much. As I watched my kids play I noticed how faded Josh’s scar is. Well, until he gets really cold and turns purple, that is! Then the scar is white and more obvious! Sometimes I run my hand over the scar to see how it feels and am always amazed at how small it is and how well it healed.

As we drove through there on our way home I thought about that day at the pool and the scar on his chest. It took me back to the night before his surgery, when everyone else was already in bed, fitfully asleep, when Isuddenly remembered that I had been given the task of washing my son’s chest with a special antibacterial scrub before he went to sleep.

I didn’t want to do it. In fact in that moment I came pretty darn close to hating that surgeon for asking me to do it. I picked up my drowsy son and carried him to the bathroom, helped him undress, and stood him in the shower. I picked up the sealed package and tore it open. The sterile sponge had a bright orange soap solution, and I got it wet and began my job. I couldn’t cry. I couldn’t scream. I couldn’t grieve for the innocence about to be lost. I just did what a mother does; I held my chin up and talked calmly to my son and hoped he couldn’t see the terror in my eyes, while in my mind I could only ask God why.

Why did my son have to go through this? Why couldn’t I fix it? Why did I have to be so helpless? And Why did I have to be the one to scrub his chest and prepare it for what was about to be done? That perfect, smooth, unbroken skin made my heart ache to look at.

God whispered back when that last question tried to overwhelm me, “it’s a privilege, not a punishment.”

I wasn’t helpless. I had a specific job to do, a task given to me to complete faithfully, and another one following that: to get him in bed and to sleep, then to sleep myself. At some point that night I did sleep, I think, in between nursing little 4 month old Laney. And in the morning I knew I had another task set before me to faithfully complete: taking Josh to the prep room at the right time and keeping myself together. Every tiny little task that was completed was followed by another and another, until the time had come and there was nothing more to do but pray and wait, and even in that praying I had some tiny realization in the back of my very harried mind that I was not completely helpless as I reached up to the throne of God.

And so we survived. So many parents go through so much more. I know my experience doesn’t even compare to some. My heart will always be with those moms and dads, with those children with broken hearts and those with every other disease and injury that takes their lives and turns them upside down. A little piece of my soul will always be in that little city. I think that’s kind of typical of a place where you’ve lost a big chunk of your innocence.

In the end, I didn’t mind the scar. When I first saw his chest after surgery, yes, it was big and red and glaring, but it was beautiful at the same time. It meant that he was alive! He was ALIVE!! That his heart was fixed, that it was done and the fear could begin to fade just like the scar would fade, until they were both just soft, always there reminders of where we’ve been and what the Lord has carried us through. "Little City"

Follow-up posts I wrote for CHD Awareness Week:
"One Year"

"One Day"


cowartclan said...

Ahhh... so hard, I can't imagine. Thankfully God is with us all the time and carries us through those numb, tearful times with a gentle leading hand. Praise God for the outcome of your little man. What a miracle!

Rachel said...

What an emotional journey and what a strong momma you are Lisa.

alinute said...

You are very strong familly!!! And your son is very strong man, hugs...


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