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.

525,600 Minutes

Taken from a favorite song of ours, it seems to fit perfectly here...How DO you measure a year?  Let's take a look...

we measure in JOY
That's right ladies and gentleman, one year! Since the 4 month hiatus we took from our blog, we celebrated Jonah's first birthday back in July.  It was a day- really, a weekend- filled with love and laughter, memories and stories, and of course, a few tears. We were surrounded by family and friends, old ones as well as new ones. It could not have been more perfect! Jonah was kind of going through a "mommy and daddy" phase where he was happy to be a part of any social situation as long as it is from the safety of our arms or lap. So, he took in most of the party from one of his favorite observation posts and took a break to play inside with the other kids when he needed to cool off in the a/c.

Along with this post being loooong overdue, we owe our families, friends, and neighbors a joyful yet humbled THANK YOU. Thank you for your unwavering love and support! Thank you for commemorating Jonah's first year with us...each and everyone of you made Jonah's birthday so special. And, Thank you for all of your generous donations toward the Pediatric Surgical Heart Unit and the Ronald McDonald House at Hope. We personally feel such deep gratitude for the assembly of angels surrounding our family- YOU and our medical team are those angels!!!

we measure in LAUGHTER
Don't get me wrong...we have had our fair share of tears through this past year, but the parts we remember the most, that we treasure the most, are those moments filled with laughter. The worry-free-not-a-care-in-the-world kind of laughter. We can never forget that Jonah only has half of a heart, but we can choose not to dwell in the "what-if's" of that fact. Trust me, I AM NOT GOOD AT THIS. But thankfully, I have a husband who is. He is so good at keeping me grounded, but most importantly, keeping me laughing. And it seems Jonah has acquired Rob's sense of humor. He has really become quite the goofball. At least everything he does seems to make us laugh:)  Jonah loves to chase Sasha and watch her play. He goes around calling everything "da-da" in his sing song-y kind of way. Then, he points to something you just told him not to touch 5 minutes ago and says "no-no". He "moos". He "barks". He dances. If  you cough, he pretends to cough. And lately, as he is always babbling to himself "wow-wow-wow". Peek-a-boo on the changing table is a favorite since he is usually "reading a book" and that is what ends up covering his face. Jonah climbs on absolutely anything that presents to him even the slightest of challenges. He of course loves to get the most exaggerated and dramatic reaction out of you that his little jokes possibly can so Rob and I get pretty silly ourselves. It's true what they say, laughter really is the best medicine. What's not so funny is that Jonah spent pretty much the better part of September and October waking up in the middle of the night with this blood-curdling cry and sometimes not wanting to go back down for hours! We had his ears checked out since he once did this for a short time when he had a double ear infection. But, ears looked good. So with each day passing and his normal daytime self not really changing, the only thing we could chalk it up to was teething. It's pretty much miserable for all of us however. Little sleep means little ability to deal with normal child behaviors in a calm and rational way. However, his sleep has been a bit more consistent now and he has one more bottom tooth up and 4 top ones coming down, at once...slowly but surely.

we measure in LOVE
What can I say? At the end of every day, we love this kid more and more. We have hit rough patches here and there...but who doesn't, right? Like-it seems impossible to be loving at 3:00 in the morning for the 3rd night in a row when we are both working the next day. But love is the only thing that can get us through the kind of year we all have had. Our foundation is built on love. The support system surrounding us embraces us in love. It really is the simplest thing we can do and the most basic thing God asks of us. Rob reminds me in my weakest moments of all the good things that have come throughout this year, all of our abundant blessings. It overwhelms me. On the flip side of loving despite the tough times, the light hearted times have been genuine gifts. In the beginning of October, we went to the family picnic hosted by Hope Children's Hospital where Jonah receives all of his outstanding cardiac care. We love, love, love his doctors and nurses and everything that hospital does for children like Jonah. Don't get me going on how much I love Dr. Ilbawi :) We love the families we have met along the way who teach us and strengthen us. We love the opportunities Rob and I have to spend time together "just like the old days". We recently celebrated our 6th wedding anniversary and spent a wonderful weekend together in New York City with some dear friends. And, just because we love music and it is a big part of our day-to-day lives and is always playing in the house or car...we pretty much are obsessed with the Avett Brothers. A great band that I don't really know how to best describe. At the end of September, Rob and I went to their concert with my sister-Allison, her husband-Jeff, and my brother-Brian. All equally obsessed fans :-)

525,600 minutes
One year. Since our last post, I hope to have recapped the months of this year we have missed talking with you. Why does a year broken down in to minutes seem like there is enough time to savor all of the joy, laughter, and love we experience in this life like tomorrow will never come? Why do our busy days steal these simple things? Time is a tricky little devil. The actual reality is that time just goes by too fast. After such a crazy year, we won't try to describe how it feels to us but instead defer to the lyrics from another favorite song...by the Avett Brothers:)

Folk always told me that my heart would grow

The older the man, yeah, the stronger the stone
Am I losing my mind?
Am I growing backwards with time?

Some say with age that a purpose comes clear
I see the opposite happening here
Are we losing the fight?
Are we growing backwards with time?

I was young and love was fun
Now it's so serious
Now all the fun has equal pain
There's something wrong with this


For all I know there's more I don't
Oh the little I have learned
For every year of knowledge gained
Is a negative year I've earned

Folk always told me that my heart would grow
The older the man, yeah, the stronger the stone
Am I losing my mind?

Hmmmm?

We are so very sorry we have been absent bloggers. We have lots more to share with you and will be back soon!

Top 10

We seem to have taken an unofficial and totally unintentional break from Jonah's blog. Things have been going great and we've just been savoring every second we can with our happy and healthy little boy.  Because he's doing so well, we are finally able to get some things done that have been on hold for the past year.  Mainly, finishing some things around the house we never got to since we moved in a year ago.  Like unpacking boxes in the basement, painting, buying furniture, decorating, landscaping, etc.  But enough about us, we know you all want to hear how Jonah's doing.  Because it's been so long, we've condensed this post into a top 10 highlights over the last 2 months.

10.  Waving.  A wave and a smile is his go to move.  He'll wave at just about everyone, and 5 minutes later he'll wave 'hi' at you again.

9.  Clapping.  He knows when he's done something awesome and will not hesitate to applaud his own accomplishment.

8.  High Fives.  It's funny.  We worked on clapping for months, but he picked up high five in just a couple days.

7.  Feeding himself and more finger foods.  The boy loves puffs and cheerios.  If we have to do something we know will upset him, a puff or three is the perfect distraction.  We're also trying some new foods other than his pureed ensemble; like avocados, spaghetti and mac & cheese.

6.  Lots of new experiences.  Highlights include going to the zoo and swimming for the first time.   At the zoo, Jonah was more interested in all the people and other kids, than the animal exhibits.  I don't think he saw a single animal.  A tiger sleeping on a rock 100 yards away wasn't nearly as interesting as watching all the other kids.

5.  Drinks from a straw.  Jonah doesn't so much like the sippy cup, but he loves drinking water out of a straw.  And only water.  Don't try to fool him by putting that formula crap in there.

4.  No longer swaddled.  This happened practically overnight.  As he got stronger and stronger, the swaddle would easily come unwrapped while he slept.  He slept on his back swaddled for the first 8 months of his life, and then one night he just wouldn't go down swaddled.  So we gave up and just plopped him in his crib.  He then turned over on his stomach, brought his knees up underneath him with his butt sticking up in the air..and fell asleep.  Since then, that's his new sleeping position.

3.  Good 3 month cardiology check-up.  Stacie was quite a nervous wreck for this one, but it turned out everything checked-out.  We were able to take him off the Prevacid (Lansoprazole), and so far haven't seen any reflux symptoms.  The only medicines he's on now are Enalapril (blood pressure) and Vitamin D.

2.   Jonah's got teeth.  Two lower teeth popped up a couple weeks ago and at the moment he's got two upper teeth coming in.  He's been a little cranky here and there, and chewing on on every toy he's got is a must.

And finally...drum role please...the number 1 update you've all been waiting for...

1.  Crawling!  Yup, we can't believe it.  Jonah's therapist, Stacie and I were convinced he wouldn't be crawling until he was 1 at the earliest.  Just 3 weeks ago he wouldn't roll over from his back to his stomach.  But then just last week he decided he'd just skip the tummy time and go right to crawling.  It's a half crawl/half scoot, but in a couple days I'm sure he'll be crawling from one room to another.  And yes, the house has been mostly safety-proofed.  I say mostly because Jonah will be sure to help point out areas of the house I overlooked.

Well that wraps up our Top 10 Jonah Updates.  Thanks for checking in and we're sorry for not keeping the blog updated more frequently.