Project 365: Week 15

4.15.13
"Chicks Dig Scars". You bet they do, tough guy! 





4.14.13
Sunday afternoon playing with LEGOs on the rug by the fire.





4.13.13
Last fall Colby finally got the longhorn headache rack for his truck that he's wanted for years...and this spring I finally got a picture of it! This was custom made by our friend Luke Merrit. Luke also custom built our indestructible, personalized "J" log rack that sits on our hearth.




4.12.13
"Why are you looking at me instead of letting me out?!" Tucker and his non stop wiggles is a surprisingly more difficult target for picture taking than a toddler.




4.11.13
A cold return to winter weather with freezing rain covering the world with a sheet of ice, a warm bowl of potato soup and sourdough toast was just the thing.

4.10.13

Just a snapshot of the crazy critter we call Twert. This is how he sleeps, and this is what his tongue looks like all the time. You just can't usually see it when he's upright; his furry overbite conceals a myriad of oddness.




4.9.13

A tiny taste of spring weather had the kids jumping for joy. The light rain falling didn't keep them indoors, and the barn held wonders and adventures anew. Ahh...to be this young and full of hopeful anticipation again...

Little Hearts and Little Hopes

Last week we headed down to Grand Rapids to see Joshua's cardiologist. We go every two years now for check-ups, and this was just routine.






EKG looked good. All four BPs were normal and equal. But since we've been noticing that Joshua gets out of breath quickly, and since he does still have a "nonspecific systolic murmur", his doctor decided to go ahead and do the full work-up with an echocardiogram just to get a good idea of exactly what was going on with his heart.



The process of getting an echo has come a long way since Joshua's first! He was in a comfy bed, with lots of pillows to prop him and a bed that moved up and down according to the needs of the tech. At his fingertips was a remote for the TV on the wall, with an enormous list of movies to choose from to watch during the procedure!



Afterwards we waited for the doctor back in the exam room. After almost half an hour he came in, saying "Sometimes God works in mysterious ways!", and proceeded to tell us that he had just been speaking with a young man (19 years old) who had also lost his voice the same way Joshua had, but that he'd recently had a procedure done in Chicago that had restored his voice completely! Dr. Lacina was excited about the possibilities for Joshua!

We discussed how Joshua's results of the echo looked good. His murmur is not causing any problems or indicating a need for further treatment at this time. We'll keep watching it, but other than the murmur his heart looks healthy and his aortic repair site remains clear and unobstructed by scar tissue.

That's AWESOME news!!! But that also means that the breathlessness when he's active is caused not by his heart - but by his airway being obstructed by the sagging, atrophied muscle of the paralyzed vocal fold. We knew there was a possibility of obstruction eventually, but since he has not indicated any trouble with swallowing or drinking fluids, it hadn't crossed my mind that it was obstructing his breathing while active.

Up until this point the only procedure I'd heard of was one that pulled up the vocal fold and sort of pinned it back, out of the way, which resolves the obstruction, but does nothing to help the voice regain strength since sound is caused by the two halves of the fold coming tightly together and vibrating against one another, not by being apart. This was the first time we discussed anything that would restore his voice, and it was exciting!

From what little we know at this point, the vocal fold would receive a transplanted nerve, restoring tone and firmness so that the other half of the vocal fold can connect with it, however, actual muscle control would not be restored. As far as we know, there is no procedure that does restore muscle control. Dr. Lacina is speaking with colleagues and doing more research for us and I will speak to him again in two weeks to gather more information and hopefully get a referral to an ENT doctor or laryngeal specialist who will consult with us.

So what that means on a practical level is that Joshua seems to have a good chance of recovering his voice in the not so distant future, however it's not clear yet whether that will resolve his airway obstruction issue since the muscle will likely still be unable to retract. So that's the news right now!



I'm excited and I'm nervous!!! I can't wait to see what this year brings and wonder what it would like to be able to hear Joshua speak from the backseat of the car, or yell from across the yard, or not worry when he's outside that he'll be hurt and unable to call effectively for help. When he was younger he used to carry a whistle so he could use it if necessary. I wonder what it would be like to have him be at least as loud as his sisters.

But on the other hand, the surgery to complete the laryngeal reinnervation of his vocal fold is not simple. It's kind of scary, like all surgeries requiring your child be put under general anesthesia. Or where incisions are made in the neck. Or when they're going to dissect a nerve.

So, there is a lot to think about and pray about and a little bit of hope sitting there waiting like a gift under the Christmas tree!

CHD Awareness Week: Feb. 8-14

"One Year"

Joshua - Dec. 2003

Did you know that every year in the United States over 25,000 babies (1 in every 115-150) are born with a Congenital Heart Defect (CHD)?

Did you know that even though heart defects are the most common birth defect, for every dollar provided by the National Institute of Health, only one penny goes to Pediatric research, and only a portion of that penny goes to research heart defects?

In the year 2003, the year our son was born with this very congenital heart defect, approximately 1864 babies were born with a coarctation of the aorta. 303 of them died before they ever had a chance to leave the hospital. Over 16% of them never tasted fresh air, played in the sunshine, smiled at their mothers, said their first words, took their first steps, rode a tricycle, caught bugs......

I can't write those things down here without tears streaming down my face and my heart just aching and aching for the mothers who were not as fortunate as me. You see, my son was born in 2003. He should have been #1865. But we had a homebirth, and his broken heart was not counted in part of those statistics that year. Our son got to grow and do all of those beautiful little baby and toddler things until the day we sat in the pediatric cardiologist's office trying to take in the diagnosis and soak in the news that he would need surgery. Soon.

Even in this day and age, very little is known about what causes some hearts to develop improperly in the womb. Chromosomal abnormalities such as Trisomy 18, 13, and 21 are often associated with CHDs, as is Down's Syndrome. Sometimes environmental factors play a part: women who are obese, who had Rubella while pregnant in the first trimester, who took certain pharmaceuticals or drugs, or who have Lupus or Diabetes have a higher risk of giving birth to a child with a CHD. None of these factors played a part in Joshua's CHD, however, there is a family connection - one of my first cousins has a son born with the same CHD also: coarctation of the aorta.

No one can tell us specifically why this happened, what exactly caused our baby boys to be born with broken hearts, but hopefully someday there will be an explanation that will help our family, our children, our children's children, to have the information they need to prevent it from traveling down the family lines.

THAT is my hope. I hope my son is the last one in our family to go through this. I hope my babies' babies are all born with healthy hearts. I am grateful for the merciful God we serve who brought us through this trial and carried us when we could no longer walk, but I hope no one else has to walk that road. That's my hope, my prayer.

If you are interested in helping to fund research specifically aimed at Congenital Heart Defects, you can go here to The Children's Heart Foundation, where they have listed several ideas for getting involved in helping fund projects, contact your legislators, participate in a webinar, and has a link to a donation page. As the only foundation that exclusively funds CHD research, it is a good choice for supporting this cause.

Of course, there are several other ways to get involved, such as donating directly to the children's hospital in your area, or the hospitality house nearby. If you have time, contact someone about volunteering. There are many ways to do it, there's no reason to be intimidated or feel as if you are not qualified enough to do it. Just ask.

In one year, in THIS year, 2012, tens of thousands of babies will be born with a heart defect. Nearly half of them will need at least one invasive surgery.

This year, you CAN do something. You can help fund research, you can support a family as they support their CHD child. It is doable.

To read about what is being done to try and detect Critical Congenital Heart Defects before babies leave the hospital, read my previous post here.

CHD Awareness Week: February 8-14

"One Day"

Did you know that every year the week before Valentine's Day is Congenital Heart Defect (CHD) Awareness week?



Did you know that CHDs account for 24% of infant deaths due to birth defects?

Or that every year in the U.S. about 4,800 (or 11.6 per 10,000) babies born every year have one of seven critical congenital heart defects (CCHDs)?

Did you also know that there is a simple, non-invasive test, called the "Pulse Ox" (pulse-oximetry screening) test that can detect a CCHD in the hospital before a new baby is released?

I didn't either!

The Pulse-Ox test is as non-invasive as the hearing test done on all newborns, a test that is standard, yet the pulse-ox test is not, though it could potentially prevent many newborns from going home with a CCHD undetected. Painless sensors are placed on the baby's skin and pulse rate and oxygen levels are tested. It takes just a few minutes, the baby does not even need to leave your room and is done when the baby is one day old (generally most women stay 24 hrs or more postpartum, so no need to stay longer than already planned).

Now, generally, I believe that there are a lot of things done unnecessarily in the name of science and medical testing. I'm not one to blindly jump on the bandwagon of MORE testing! But because this is a non-invasive diagnostic tool, I support it.

Sure, it may not be a perfect tool for diagnosing a CCHD, it will miss some infants who have a CCHD and it will throw up red flags on infants who don't, but used in conjunction with a standard newborn exam, it may help some of the almost 300 babies and their families who are unknowingly sent home every year with a CCHD.

8 years ago our son was born with a Congenital Heart Defect (CHD) - Coarctation of the Aorta. It was missed when he was born and we went 3 1/2 years without knowing it. It was not one of the 7 Critical Congenital Heart Defects (CCHD) that are potentially detected by the Pulse-Ox test, but just as deadly in the long-term. He would not have survived past early adulthood, and there is nothing worse than realizing your child has been living in a seriously life-threatening state for years without anyone knowing it.

Three states have so far passed legislation concerning mandatory Pulse-Ox screening. While I may not agree on the "mandatory" part, that does seem to be the only way most people will learn about the test and what it provides. Of course, as in all testings and screenings performed, you would still have the right to refuse it by signing forms prior to the birth at the hospital.

Some of you might not think all the disclaimers sound like me supporting it, but really, I do! I just also happen to support taking charge and full responsibility for your birth choices and what is/is not done to your baby.

So if you are inclined, you can go here and find a link to email someone in your state to get involved with this cause.

Here in our home, this is the face of CHD:


And I am so glad and thankful to God that it did not go another day without being diagnosed. Not. One. Day.


*Statistical information gathered from the CDC.

Happy Heart Day, Joshua!

~~photo taken the day after surgery

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.

~~don't take the bandaid off!

~~my sweet little boy, almost 4 years old.

~~now almost 6! My handsome little man, an awesome big brother, thoughtful and sweet. Happy 2nd HeartDay, Josh.

Little City

June 13, 2009:

Back to our trip home the other day…

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.

Josh's One Year Anniversary

On Sept. 26th 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!!

I'm working on a montage but I'll have to add it later, after I get caught up a little! I'm way behind on my posts!

Checkup Day

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.

Day 19

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.

Two Weeks 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.

One Week Later

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. Oct. 3, 2007.

The Road to Recovery

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.

Going HOME!

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.

Leaving the Hospital

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.

Moving out of PCCU

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.

The Day After

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.

September 26, 2007

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!

Arriving at the Hospital

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.