When did we get here??

I keep asking myself this question. Along with How? and Why?

To answer these questions, I must face a truth that my head and my heart are in constant battle with. Yes-our precious little boy, our sweet and silly 2 year old, in-fact, has only half of a working heart. For at least the past year, we have rested in a peace that only our GREAT GOD can deliver. We have received blessing after blessing in our day-to-day lives since Jonah's recovery from his Glenn surgery. But this "comfort zone" that we have become so familiar with and...have enjoyed so immensely seems to be crumbling underneath our feet. I don't like it. I am really scared of it.

When I think of the How's and Why's of Jonah's heart, I actually feel very content. Very confident. I know without the shadow of a doubt that Jesus has given us the most amazing gift in our son's life. When I was about 22 weeks pregnant with Jonah, Rob and I had a very discerning conversation with God. Right there- in the waiting room of the doctors office. From that moment to present day, I have felt free of the burdening thought that anything different from Jonah's life being the most joyful and successful is even possible. But as I think of WHEN we got to this point, only days away from his 3rd planned open heart surgery, I must admit that I am very scared. This fear keeps creeping in. It seems heavy. And these are moments when it is my head that wins the battle. For, surely, it is my heart that holds that sacred place of peace.

I get so sad when I think of the tease that is the time we've spent between Jonah's Glenn and Fontan. How did it go so fast? Did we make every moment count? When I really wrestle with why I feel so scared and so sad, the one thing I keep coming up with is having to watch Jonah go through this difficult procedure. It has been our privilege to guard and to protect him, to love and to nurture him. We  are totally wrecked with the idea of letting him go...into the hands of his surgeons, under the abyss of anesthesia, to experience and endure the pain of recovery. We want take to take all of that away from him and take on all that weight upon our own shoulders. But if there ever was a 2 year old who can handle all of this, it is our mighty warrior. We have said this before, but when Jonah is faced with any kind of adversity, even the slightest bit of challenge... he will flourish...he will overcome. Any parent we have ever talked to, that of a child with a CHD or not, says that these types of life events are always harder on Mom and Dad. So much harder...I am not sure I even want Jonah to know. I want him to think of us as his brave and fearless parents.

With that, it seems like I have taken all of you on a bit of the emotional roller coaster that we have been on since waking up this past Sunday morning. I can't tell you how exciting it will be to get off this ride, to get on the other side of the Fontan. The anticipation of it seems like cruel and unusual punishment but we will get to the other side. And we will be witnesses to yet another miracle in our lives!!  Of this I am absolutely sure!!! I know 5, 10, 20 years down the road we will be asking ourselves the same question..."When the heck did we get here??" And then Jonah will recount all of the memories of his triumphant life from kindergarten, to college, to marriage...and we will wonder no more. Praise God!

We love you to the moon--

and back, little buddy!!!

Summer Fun and, oh yeah...the FONTAN!

Well, well, well. Here we are- 3 months since our last post! After Jonah's heart cath in June we received a "courtesy call" from Hope wondering if we would like to schedule Jonah's Fontan. At this point we had discussed our thoughts for holding out until October with our cardiologist. There did not seem to be any major red flags from the cath results so we we received the green light to enjoy the summer and schedule a later date.

And that date is......Drum roll, please......October 1st. That's right- 12 days!!! Those words sound like jibberish to me right now, but there is no denying it, summer is over, fall is beginning and we are kicking it off with a bang. We couldn't run from it forever. We can't ignore it and pretend like we are the parents of a healthy child with a whole working heart. The fact is is that we have to face this. We knew this day would come. But before I tap in to the emotions that come along with this day, we want to share with you some of the fun that we had this summer. After all, we were so blessed to have enjoyed the summer as we did and make the memories we have without the threat of another surgery hanging over our heads.

At the end of June we took a vacation with my family to Holland, Michigan for a week. We rented a house right off of Lake Michigan and packed in 8 adults, 2 kids and 2 dogs just a short 3 hours away from home. Jonah experienced alot of firsts during this time...cruising in...& driving Poppa's boat, fishing, roasting marshmallows around the campfire, and building sandcastles at the beach. But the most exciting could have been going to bed and waking up in the room adjoined with his cousin, Nola, which included running the length of the house in hysterical giggles.

We were honored to celebrate this blessed little boy again on July 30th, Jonah's 2nd birthday! This year was a smaller gathering short a few close family members due to their being sick that same week. The day brought a pleasant reprieve from the scorching heat we had all summer which was perfect for a party. To say the least, Jonah really loves anything in the family of cars, trucks, buses, trains or tractors. On a road trip to MN in May we played the movie Cars for him and he has since become best friends with Mater and McQueen...and all of their car buddies too;-) Around the same time Woody and Buzz joined the group and the movie Toy Story 3 had a permant spot in Jonah's DVR list. I mention this because we had the most adorable birthday cake made for him and it was, of course, Cars-themed. It must have happened sometime this spring when Jonah's reaction to or recognition of something he loves made his eyes absolutely dance with excitement that Rob and I seemed to indulge in the moments that provoked such joy. It is absolutely impossible to resist and utterly priceless. This birthday was full of those moments.

With the blistering heat we had this summer, we became regulars at a few local pools. To be honest, Jonah's very first pool experience was not all that pleasant. It was indoors, in the spring, but it was chilllly. On a 90+ degree day at the waters edge of a comfortable zero depth pool- Jonah found a new love for swimming.


We visited the Lincoln Park Zoo for the first time too. Next to cars, animals of all varieties are favorite of his.


Most recently, we took the kids for a ride on our Metra train. We don't live far from our train station which is very nice. Seeing how much fun Jonah had taking the choo-choo a few stops heading East makes the daily morning commute for Rob a little more cheerful:)

Finally, this summer included spending lots of time with family and friends. I can't think of anything more nostalgic than letting the kids stay up late on a hot summer night, running around in the yard with all the dirt and grime from the days play on their hands. So fun!!

P.S. I finished this on my phone so the format of this post is kinda weird;)

Light bulb!

This past week of being home after Jonah's heart cath were some confusing and stressful days. Jonah came home last Saturday and went easily down for bed at 6:45p...he slept for 12 hours-fantastic!
Some time around Sunday evening when Jonah was starting to run out of gas, his body and head felt warm to the touch. Of course we were thinking fever, even though his cath sites looked good and infection-free. When we took his temperature- no temperature. But he was also acting like he wasn't really feeling good, not just tired. That night we woke up to hear him moaning and groaning on the monitor. Nothing like we have heard him do when he's gone through a typical teething phase, which is about the only reason he would be waking up in the middle of the night over the recent months. I couldn't shake the feeling that I needed to get up and check his temp again. No fever, but clearly uncomfortable and distressed. O2 Sats, normal. We brought him in to bed with us and he fell asleep pretty quick after getting some Ibuprofen. Come Monday, Jonah woke up feeling so-so and nothing seemed all that out of the ordinary. By nap time he was a disaster. He absolutely would not go down- after falling to sleep in my arms, the second he hit the crib he was up like a bolt of lightning. After several attempts, he finally got 2 hours in. When he woke up I gave him some Tylenol because he just seemed uncomfortable again; he wouldn't play, had a hard time finding a content position on my lap, and was over the top sensitive. About 30 minutes after Tylenol, he was like a totally different kid!! Bouncing off the walls, acting goofy, playing hard. We felt like we could maybe rule out a brewing infection by this point and by the way he acted before and after a little pain reliever, it really seemed like something else was bugging him. All the while, Jonah was getting back to his normal eating and potty patterns, so nothing there. We were making ourselves crazy trying to think of the possibilities, questioning whether we should bring him back in to have him examined again=Torture!

I called our Cardiologist that night trying my best to explain how Jonah had been acting and having a really hard time putting my finger on something definitive. He asked questions about facial swelling, oxygen saturations, signs/symptoms of infection. All I had for that was No, Nope, Nada. We hung up with the agreement to have him looked at by the Pediatrician in that maybe we were dealing with bad timing on teeth, an ear infection, or something totally random.

A top contender in the realm of possibilities Rob and I were stressing over was the adjustment that Jonah's body was experiencing to the change of blood flow after having 7 coils placed. After the Glenn, we knew that headaches were expected. Big change to blood flow with the Glenn. So we thought since they definitely tweaked things again going to the upper half of the body, a headache was certainly possible.

Finally, I talked with some fellow heart mom's who helped me think of some more pointed and specific questions to ask our cardiologist. I called him Wednesday morning on our way to work...and this is when the light bulb went on...
He said that the collateral vessels that they coiled off in the cath fed areas in and around the chest wall and ribs. "This can cause some pain and discomfort". Hellloooo?!?!?! That had to have been it! It shed A LOT of light on our particular situation. We love, love, love our cardiologist and entire medical team and respect the fact that they can't go around scaring parents over every single potential side effect under the sun. Because these kids are so different, there is literally no "textbook" to follow. But this kind of seemed like a "nice to know" sort of thing:)

A huge "thank you" to our fellow heart families out there!! The network of sharing our most personal joys, triumphs, pains, griefs, and "has your child ever experienced x-y-z" is PRICELESS!!!

A few pictures of our brave boy...

Cath update #2...and fast forward 48hours

Alrighty...a total of 7 coils placed in both arterial and venous collateral vessels. We just talked to Dr. Patel. Pressures in the heart and lungs look really good. There is no narrowing of either pulmonary arteries. Aorta is of good, normal size. No enlargement of the heart muscle. No arrhythmia's. All in all, not too bad. They said those collaterals were pretty typical of child at Jonah's stage pre-Fontan. 2 were really twisty though and 1 of those will need to get clamped during the Fontan.

Jonah came out of sedation like a bear. He was so out of sorts and irritable for a good long while. As soon as we saw him he took it up a notch. Thankfully we were able to pick him up right away as long as we kept his leg straight. We were in recovery for really only an hour and then headed up to the 2nd floor for our overnight stay. Jonah continued to allow staff to touch him without loosing his marbles but it is very likely that general anesthesia helped in that department. He stayed pretty content in our laps for a long time but he was not able to get up and walk until 4:30 in the evening. Problem was, the kid would.not.sleep. Took about a 20min snooze but that was it. He did perk up after a little Tylenol; sat up, played, ate, laughed. We tucked him his crib about 9:00 and by 9:30 he fell asleep comfortably. Unfortunately, I could not relax enough to drift off so I was kind of up & down for a while. At about 11:30 I saw a red light swirling around (oxygen monitor taped to Jonah's finger) and realized he was intent on pulling his IV out. He still needed it for antibiotics so I got him up to rock with me and he did sleep there for the most part from 1:45 until 4:45am. I, still did not sleep, at all. Rob was able to catch some z's on and off, I just couldn't wind down. The plan was to have his discharge tests start earlier with the hopes of leaving earlier so when the tech came in to do his EKG at 5:45am we woke him up to do the test. But...nothing else happened after that. Ugh. So, we decided we would just try to sleep again with very specific "do not disturb" instructions for the staff. At 8:30am we were up and at 'em again. Now it was a chest xray. We had to go to main radiology to get this done and since it was a Saturday we had to go to the adult side of the hospital. Yuck. They strapped him in to what looked like a mini electric chair to accomplish this. The very minute we walked upstairs the ECHO tech was there. By now, Jonah had completely come undone. He was so hysterical from the chest xray we needed to stop the ECHO halfway through to give him a break. He was out of control. His fear of all things medical had officially gone to another level. He absolutely lost it. This is when Rob and I basically did too. We were beyond exhausted and seeing him go through this was absolutely gut-wrenching. We tried not to, but it was hard not to think of what his 3rd surgery/recovery was going to be like when he was dealing with something minor in comparison and he was having SUCH a difficult time:( After all was said and done, Jonah passed out in Rob's arms for about 2 hours or so. And we had plenty of time for napping because cardiology didn't come by until about 1:30pm to discharge us.

All of these tests were done to make sure that Jonah's heart and body was adjusting to not functioning with those collateral vessels. Over time, the heart function adapts and changes with these vessels but it is not necessarily in an efficient way. So clotting them off could be enough of a change to tweak things a little. Thankfully, all of Jonah's results were good. No areas of concern. Nothing new. Soooooo, after Dr. Ilbawi and surgical team reviews Jonah's cath on Wednesday, we will get a call from Dr. Ilbawi's nurse to schedule the Fontan. To lock it in. To commit and never look back. I can't even begin to describe our mixed bag of emotions on that one...

We are home and Jonah is not feeling great but not feeling horrible either. He for sure needs some time to reset but he is clearly happy just to be here. He had a big smile on his face when we walked in the door, immediately wanted to look for Sasha, and had a good 12 hours of sleep last night. Home IS where the heart is.

Cath update #1

We made it! So...we got here this morning a little bit before 630am. I pretty much started sliding down the slippery slope of my emotions on the walk in from the parking lot. I am surprised the sweet lady that checked us in didn't call the psych ward to have me checked in:) After she told me a personal story about her own daughter, I was able to get a hold of myself and rest with the fact that, as always, God puts people in our path for a purpose.

Jonah's usual reaction to all things resembling the outside physical structure of a hospital or doctor's office began at pretty much the same time. He settled nicely with Rob of course. He continued to be upset pretty much through taking his weight and vital signs. He soaked his jammies (and Rob's shirt) pretty much right away so we quickly got him into his gown, got his "cool cars" and iPad out and he actually did really, really, REALLY well!!! Rob and I were prepared for a solid hour of uncontrollable crying but in true Jonah fashion he pulled up his bootstraps and handled the whole process like a champ!! His versed surprised me the most- I thought they would need to give him enough to take down a small elephant in order to pry him from our arms but he swallowed it easily and in what seemed like only a few minutes he was drunk as a skunk. We carried him to the cath room doors, he gave us both kisses with the silliest grin on his face and went in to the grips of the RN and MD to get this ball rolling. He cried out for "daddy" a couple of times but that was it. Barney, Blanket and his pacifier accompanied him to the table and the nurses assured us those buddies of his did not let him down:)

As I started this, I got a call from the nurse and Dr. Patel was able to get the appropriate access he needed on the first attempt"s"...plural-because they actually have to insert the catheter in two places in order to obtain all the data they need. In the groin and in the left arm. He goes in through the arm in order to get the most accurate info from above. Given the nature of Jonah's new anatomy, they are not able to fish all the way up from the bottom. We also were told they need to coil some collateral vessels around Jonah's super vena cava. These collateral vessels are completely expected and pretty much unavoidable. The body is always trying to compensate for the compromised blood flow to and from Jonah's heart. These collateral vessels are kind of like a little spider web or finger-like vessels that are very small but they can allow for increased blood flow/pressures to areas of the heart/lungs that the Dr's do not want. This intervention means we will need to spend the night here while Jonah is observed and gets some antibiotics. We knew this was a possibility but in our heart of hearts wanted nothing more than to leave this place in our dust tonight:( Good thing we brought reinforcements!!!

Stay tuned!

Pre-Fontan Cath Tomorrow

Hello world,
You might be asking yourselves, just as we are, Uh...Fontan? What? Seriously, where has the time gone?? We say on almost a daily basis, "We need to post an update on the blog".  We are very bad bloggers and we apologize.  When we start what we think will be a quick post, it turns in to the process of what one could imagine writing an article for the New York Times or something. The amount of time we try to make everything perfect takes much longer for us than just putting our thoughts out there.  So tonight we are going to make this quick and skip the editing process.

We have so much to share to bring this blog up to speed.  The last post highlighted Jonah's walking progress.  I guess the next major milestone has been his speech.  He is quite the jibber-jabberer (crazy about singing) and we have loved watching/listening to him pick up new words each day. By the way, he has had his ABC's locked in for a few months now:) Health-wise he couldn't be better and we have been so blessed with our time between the Glenn and the Fontan.  Time. Has. Flown. By!

And now the Fontan is upon us.  Jonah has his cath tomorrow morning.  Just got the call today that he has a been moved up to be the first case tomorrow.  So instead of planning at being at the hospital at 9:30am, we have to be there at 6:30am.  Good and bad I suppose.  Worlds of emotions going through us as we try to pack up Jonah's essentials, an overnight bag (just in case), and make arrangements for our dog Sasha to stay with Stacie's sister.

It will be much harder this time around to let the doctors/nurses take him from us.  He is just so much bigger, more aware, than the last time we did this...it could possibly be his worst nightmare...and I don't blame him because what could be worse for 23 month old little boy than having "white coats", who have poked and prodded him his whole life, drag him into a strange room where he will be without the two people who are always right there by his side.  Stacie has argued numerous times to let her go back with them until they sedate/gas him, but it doesn't sound like they will make an exception for even a fellow nurse.

Not only will we be anxious to get the cath over with, but we will also be anxious to get the results of the cath.  We know the results could mean anything.  They could find something that requires immediate intervention or maybe the surgery needs to be moved up.  Or they could find nothing and let us have more freedom scheduling the Fontan.  We just pray that whatever the results are, we will have Jonah back home with us tomorrow night.

For now, we must "Let Go, and Let God". If there is someone out there reading this tomorrow around 7:30am...please say a pray that we are reminded of this!!

Goodnight

Hey...I'm walking here!

For the last few months, Jonah had been been very comfortable walking as long as he had a tight grip on both of our hands at all times. However, if we let go he would stop dead in his tracks and retreat to crawling. He was always so proud with a huge smile on his face when he reached his destination. We got a push toy for him to use in the basement where it is all carpet and for the longest time he wanted nothing to do with it. He was happy pushing all the buttons and playing the music from the safety of the floor. One night when I was upstairs making dinner, Rob called me downstairs telling me there was something I had to see. There was Jonah, practically running behind his toy, again with his huge smile lighting up his eyes. This went on for a few more weeks. He'd push his toy where he wanted to go and when it got stuck he'd back up and turn it around. Chasing Sasha was just taken to a whole new level ;-)

Most recently, we would encourage Jonah to stand up and walk with us when we went from room to room around the house. He was getting so much more confident with this that he would only hold on to one hand...sometimes only a finger. But still, we couldn't get him to take a few independent steps as Rob and I sat a couple of feet apart on the floor arms open wide, cheering him on. He'd put on the brakes.

This past week and weekend, Jonah had pretty much mastered his walking skills from our corner couch to the ottoman to the recliner to the window ledge. All very short distances but he seriously went from object to object over and over again that it was only a matter of time before he would drift out into wide open spaces. We thought that he might be doing this for a while though. At no point in this process had Jonah ever tried standing up on his own unsupported. He played a lot on his knees or with one foot down but we never saw him muster the courage to stand up.

Literally overnight, the little man took off. Last Sunday Jonah spent all day surfing the living room furniture and Monday he wanted nothing to do with hand-holding and marched right down the hallway all by himself!!! He is still trying to figure it out and doesn't go very far with out falling but we get him up and try, try again. We are definitely not used to turning around and seeing this guy-vertical- walking across the room! He will get himself to a standing position with the support of something or someone and then he's moving. He's still got that huge excited smile on his face but it's pretty funny because you can see him pick up speed, his eyes get bigger, and his smile gets wider....just as he's about to bite the dust.

So at 15 months, Jonah is officially walking. I'd say that isn't too bad for a small dude who had a lot of catching up to do. We will see Jonah's physical therapist in 2 weeks. In the meantime he's got to work on refining a few things, but if she likes what she sees we might just graduate from Early Intervention...for now.