Eleven-eleven

That's the date set for the Glenn. We have a pre-op appointment on the 8th and then on Thursday it's go time.

Happy Halloween everybody! We're off to a concert in the city. Jonah's first Halloween will be a night with his grandma, but next year we can't wait to take him out trick-or-treating!!

What Would You Do?

After having Jonah home for the last 2 months we have learned quite a bit about his cry....you know, the cry that post-Norwood babies with HLHS aren't supposed to do? :) A hungry cry. An overtired cry. A dirty diaper cry. And then there is the the-car-has-stopped-moving cry. I have to say that the last is the worst! Being behind the wheel with Jonah upset in the back seat is more than nerve-racking. The first time this happened to Rob and I, we went into major panic mode because we were stuck in some good old-fashioned Chicago suburb traffic on a Friday night. Since then, we have become more comfortable with Jonah's cry and know his limits. Our panic switch doesn't get flipped that often anymore.

Yesterday, I went out to run a few errands and was on the way to my last stop when I merged on to a pretty busy road in town and came to a screaming halt immediately. As I entered traffic, all I could see before me was a parking lot. Mind you...it is 2:00 in the afternoon. As soon as the car slowed down, Jonah woke up from a little snooze and was in no way happy that we weren't moving. I tried talking to him, singing to him, I rolled down a window to give him some fresh air. I was even able to reach far enough back to offer him his pacifier. But he just wasn't having it. He was fired up! So.....I did what I had to do. I slowly got out of traffic and very carefully drove down the shoulder to get off at the nearest exit. Now, I have to say that I am still getting to know our new community and really wasn't sure when or where that next exit would be. Turns out, it didn't matter anyway. I got pulled over immediately! Jonah is still raging in the back seat when the police officer approaches the car. License-check. Insurance card-check. Then I try to explain to this seemingly cold-hearted cop why I was doing what I was doing. Well, he didn't even take 2 seconds to hear me out before walking away. While he was likely running my info and working on slapping me with a ticket, I got in the backseat to try to calm Jonah down. When the police officer returned, Jonah is still crying and I again try to explain that it is harmful for my son to cry so hard for so long. Then, he hit me with it...a $120 traffic violation and a "have a nice day". That was it. He was walking away again as I spoke. After all that, I still had to get back in gridlock traffic to get home.

Needless to say, this was beyond frustrating. I realize I was taking a risk, but I know that I was still driving safely. Trust me, we have all seen wild-abandoned, reckless drivers with no cops in sight. But here I was, getting a ticket after attempting to de-stress my fragile baby. Go figure. Honestly, I have to say that I would do the exact same thing again if I had to. Is that so wrong?

First Cath

Quick update for every one...
Jonah's first cath went well today.  Our day went something like this:

3:30am  - turn off continuous breast milk feeding, turn on pedialite
5:00am  - turn off pedialite feeding
5:30am  - packing/preparing for possible overnight stay
6:00am  - pulling out of the driveway
6:30am  - checking into Christ
7:30am  - Jonah, 12 weeks and 3 days old, weighs in at 11.2 lbs (albeit with fleece sleeper still on)
8:00am  - go over the details with the cardiologist and anesthesiologist
8:30am  - tearful mom and dad escort their smiling, happy son to the procedure room
9:00am  - breakfast in the cafeteria
10:00am - cardiologist comes back to the waiting room to tell us everything went great
10:30am - relieved mom & dad reunited with their angry, exhausted son in the recovery room
10:31am - kisses and hugs galore
11:00am - swaddled and sleeping - first feeding since 3:30am
12:00pm - still needing some oxygen to keep sats above 70
12:30pm - 3oz bolus feed - keeps it down
2:00pm  - iPad is worth every penny
3:00pm - another bolus feed down the hatch
5:00pm - preparing for discharge
6:30pm - home
7:00pm - Jonah in bed
7:30pm - posting this blog

The next hour's event better be mom and dad in bed.  It's been a long day...one of those days that begins filled with adrenaline and anxiety, but ends in sheer joy and gratefulness.  Jonah's heart is looking awesome!  No need to "balloon" the pulmonary arteries (as can be the case with many pre-Glenn babies); his Sano shunt just had slight, but normal, narrowing; and his aorta, where they placed a bovine patch during the Norwwod, showed no blockage.  In other words, it was the perfect picture we all were praying for.  The only scare was when the cardiologist told us Jonah had a "heart block" during the procedure - which is a spasm of the heart muscle causing irregular rhythm when irritated by the catheter, but it luckily subsided after pulling it back and waiting a few seconds.  The cardiologist finished his report by saying that Jonah could not be any more ready for the 2nd surgery.  The cardiologist fellows will present Jonah's report to Dr. Ilbawi's team on Wednesday...and after that it's just a matter of finding a date on every one's schedule.  We might know the Glenn date on Friday at the earliest, but more likely Monday or Tuesday.  Crazy.  But today was good practice; a real reminder that we have more future trips to the hospital...to watch our baby being wheeled behind the closed doors to experience unfathomable life-threatening, but ultimately, life-saving operations.

Long Time, No Talk

Wow, it has been way too long since our last post! Gosh, the days really do seem to go by so fast as I would say we are now starting to figure out a few "patterns" of our new life. Not routines, no schedules, but just some of the things that seem to make time really fly by.

Jonah is still making slow progress on the bottle. We are doing more bolus feeds during the day now to give him the opportunity to feel hungry when we work on it. Also, to avoid getting too comfortable with a full belly 24 hours a day without ever having to try. He is soooo good with the pacifier, and is soooo smart too because as soon as that pacifier comes out and the bottle goes in he lets us know very quickly we aren't going to be able to pull any fast ones on him:)  We are happy to say that he is tolerating the boluses fine...after accepting that slower really is better for him. But this process is work. Every 2-21/2 hours keeps time ticking. After that we are taking advantage of the awake time Jonah has when he is happy and playful...yes, playful!! He is smiling. He is talking to us. He is getting tummy time. He is doing all of the developmental things he should be doing for his age right now.  He tuckers out pretty quick but those moments are so precious and dear to us!! In between work and play with Jonah is fitting in all of the must-do's around the house. Laundry, meals, cleaning, etc. My mom has really been the extra hands that we need to get these things done...THANKS Mom!

My relationship with the home nurse's scale, my nemesis, has officially ended. We no longer need monitoring at home and are only focusing on one weight, one scale at the cardiologists office. Long story, but Jonah had definitely been gaining weight all along and is now up to 9lbs 7oz!!! It's deceiving though, because looking at him and holding him you'd think he has finally hit double digits...but, no dice. The good thing, the only thing that matters, is that he is gaining weight at all.

Jonah had his first appointment at the pediatrician's office and with that came his 2 month vaccinations. I was really worried about the aftermath of these but Jonah handled them just fine and was never irritable or uncomfortable. One thing I am not looking forward to is a monthly injection Jonah will have to get to protect him from RSV. He will need it from Nov-April...yuck. I know it the grand scheme it is not that bad, but still...yuck:( Everyone get their flu shots??

Although we are very conscious of Jonah's exposure to the "elements", he has been able to experience life outside of the doctor's office. He made his first trip to the big city. He's checked out the local farmers market, done a little shopping. He goes to Grandma and Grandpa's quite often. Jonah has cheered on his favorite Minnesota sports teams in his appropriate sporting gear. He has been to church giving all the glory to God. And just yesterday, Jonah went to pick pumpkins with his cousin Nola! Yes, we are all loving life!!

Okay, now for the "big news" (Seinfeld fans anyone?). Jonah will have his first heart catheterization in 2 weeks. This is a diagnostic procedure where they insert a catheter into an artery in his groin and feed it up to the heart to look at pressures and blood flow. This is in preparation for the second surgery, the Glenn. Can you believe it???!!!! We are already getting ready for that! It could be done by the end of Nov. beginning of Dec. Jonah will be intubated, sedated, and observed for 24 hours with the cath. It obviously has its own risks, but we know this is the best way to determine what is going on in there and unfortunately it won't be the only one. Jonah will likely have these done as part of his life-long monitoring. When he had his Echo done Friday, it showed a slight narrowing in his shunt which Dr. Husayni assured us is exactly what starts to happen at this stage. Jonah is growing, the artificial (gortex) shunt does not. We have seen his sats drop a little bit. Low 80's has always been Jonah's normal, now he seems to hang out in the high 70's. His color still looks really good though! He's pink and he's happy...most of the time:)

And last but not least, some pictures from the last few weeks...

A Moment In Time

Just as soon as I proudly express how well Jonah was making progress in the last week...the home nurse had to show up with her scale and burst our cheery little bubble. According to that menacing scale (my nemesis), Jonah did not gain any weight- not even an ounce- from his previous weight taken 5 days earlier. Rob and I (as well as our families) all look at him and each other absolutely baffled. How can this be? He looks as if he is gaining weight...feels as if he is gaining weight...but unfortunately, nothing.

Yesterday also marked one month since Jonah's NG tube had been placed and that meant a new one needed to be put down. Yesterday just so happened to be Rob's birthday and I kept thinking the perfect gift would be to see his son just chugging away on his bottle with no NG tube in sight. However, this gift could not be given...per se. Rob worked from home yesterday and we woke up with big plans. We were going to take the tube out and the magic was going to happen ;-) Well, that wasn't exactly how the day unfolded. I took out Jonah's NG to see his adorable face free of any tape or tube for the first time since he was delivered. We cleaned him up, got him dressed, and set our sights on bottle mania. Jonah, on the other hand, quickly told us he just wasn't ready yet. It's not as if he didn't take to the bottle at all, he just didn't take to it like we had hoped with the tube removed from the back of his nose and throat. He took about an ounce at a time which is exactly what he had excited us with at the end of last week. No more, no less.We had read so many blogs and websites, talked with many other families with stories of children who had that "light bulb" go on as soon as the NG came out. That silly tube can be the source of such irritation...reflux, congestion, swallowing difficulties, etc. We really thought that Jonah might have a better chance at the bottle without this nuisance. At the end of the day, we had to put the NG back down and rev up the pump for more continuous feeds- although, we are doing more bolus feeds again to keep practicing with the bottle:)

Rob did have a great gift though. We both did! It was a wonderful day to celebrate a moment in time without the only evidence that our little baby had anything wrong with him at all. It was so liberating for all of us to walk around the house, to walk around the block without all the "extras". We didn't hear Jonah try to cough the tube out or throw up (of course, he didn't have much in his belly to throw up) and instead we played, took pictures and reflected on how far we have come!! We have received many gifts to celebrate and this moment will soon turn into a loving memory as we delight in  all that is to come.
Happy Birthday to the love of my life!!! 

...Quick question to other mom's of heart babies...have you seen any of these children actually gain weight on breast milk alone? Or is this just a pipe dream of mine?? First, I am a naturalist at heart, breast milk has to be the best, right?. Second, I am afraid to start experimenting with formula after formula and all the aches and pains of testing each...

How Jonah Got His Groove Back

Hello everyone!!
It feels so good to be "talking" to the outside world again! Jonah has been home for 3 and 1/2 weeks now and as Rob described in the last post we were faced with many challenges right away which were so much more mentally and emotionally taxing than I ever expected.

From a cardiac standpoint, Jonah goes to clinic every Friday where the doctor and nurse specialize in seeing children who are recovering from their 3 step surgeries, specifically the Norwood. Once every month the team performs and EKG (to check heart rhythm) and an Echocardiogram (which looks at heart function)...Jonah had these done last week. His shunt and the aortic arch (where Dr. Ilbawi placed a bovine patch) look really good and are in optimal working order. We could not feel more pleased about his healing progress. God is so good!

From a GI/feeding standpoint, Jonah is also making some progress. He is doing so in small baby steps but we now understand what is par for the course and we are trying not to let our own expectations get the best of us...I should say, I am trying not to do that :) We came home giving Jonah bolus feeds through his NG which mimic a normal feeding pattern for most newborns; which is eating every 2-3 hours. These were so difficult in more ways than one. First, Jonah was growing intolerant of the feeds. Throwing up, diarrhea, abdominal cramping, etc. Second, the repetition felt like we were living the movie of Groundhog Day and we never seemed to be meeting any goals. Jonah was taken off Reglan-one step forward, and put on continuous feeds-one step backward....sort of. The continuous feeds are given through a pump that infuses the milk 24/7. It has been such a gift to get some sleep again!! For Jonah especially. He has really done well with this since he is now gaining weight and BM's look better. He is a whopping 8lbs 12.5oz. This slow and steady gain is typical for these kids since by the nature of their heart defect they are already burning more calories and the crying fits that Jonah had for 2 weeks didn't help in that regard either. I said one step back because while Jonah is on the continuous feeds he never feels hungry. If he doesn't naturally feel the need to eat, it can mean learning to bottle feed might be more difficult. Not hungry? Why try? But we are very happy to announce that Jonah took his first 5ml (basically 1tsp.) by bottle last night!!! It took Rob an hour to accomplish this with Jonah, but they did it! Rob really has the patience of a saint and that is why he is just the man for the job. I have to admit, patience is not a virtue of mine. Rob was the first to get Jonah to take the pacifier also...again proving not only to be the best dad but also my most amazing counterpart!!

I have been so easily frustrated with these very basic baby skills. I mention expectations because I have such a bad habit of putting the pressure on that I am afraid I have projected that on to our little buddy. I kept thinking practice makes perfect and we need to carve out bottle-time during the day as much as we can. I was looking down and thinking, "Why is this natural instinct so easily lost and so hard to get back"? I, of course, was NOT helping the situation. I have slowly come to accept that Jonah will get this in his own time. They keep telling us it is like the switch of a light bulb, one day it will just turn on. So with that as a constant reminder and Rob's patient persistence, I know this too shall pass. Jonah will be eating like a big boy in no time!! As we wait, we are enjoying a little more sleep and a much happier baby. How can I argue with that? Yup, God is good.

Labor of Love

It's been a long week since our last post.  Jonah's 'colicky' behavior continued all last week.  If he was awake, he was crying.  If he was asleep, he was moaning.  The crying and stomach cramps resulted in throwing up.  And throwing up resulted in being hungry.  And being hungry resulted in crying fits.  This viscious cycle was taking a serious toll on both Jonah and his parents.  The every 2.5 hr feedings were quickly becoming unsustainable.  We knew he wasn't getting the rest he needed to gain weight, and to make matters worse, Jonah wasn't showing any signs of improvement with a bottle and he would take the pacifier maybe only 30% of the time.  It's a cruel joke to bring a newborn home who can't be consoled by neither bottle nor pacifier.

Our Friday Noorwood clinic appointment couldn't come sooner...and we weren't going to sugar-coat a thing.

However, the cardialogist and nurse didn't need to hear it from us to realize we needed to make changes.  Jonah weighed in at 8.4 ounces, which was the same weight as the week before.  In fact, Jonah had only gained 1 ounce since being discharged from the hospital 2 weeks ago.  Considering he's supposed to gain 2 ounces every day, we were failing.  All the crying, lack of sleep and throwing up was wasting all the calories we were feeding him.

The doc was quick to explain that GI issues and acid reflux are the biggest challenges post-Norwood, but there were a couple things we could try.

1. Stop the Reglan.  Reglan (or metoclopramide) is used to help Jonah's digestive system speed up the process.  Metoclopramide increases muscle contractions in the upper digestive tract, speeding up the rate at which the stomach empties into the intestines.  The idea is this helps with nausea and reflux, but it could also be a cause of his stomach cramping.
2. Continuous feeding.  Ideally, they want him to feel hungry and full sensations, but the shrinking and stretching of his stomach could also be causing his stomach discomfort.  By continuous feeds, Jonah's stomach wouldn't have to work as hard during each feeding, essentially giving his digestive system more of a break. Although Jonah would need to be connected to a pump 24 hours a day, this was welcome news for parents who weren't sure how many more "gavage" feedings they could administer to a screaming baby.

We would try these 2 changes, hopeful we would see improvement by the end of the weekend. 

So we left the Noorwood clinic, skipped the afternoon Reglan dose, and Jonah slept for the next 4 hours straight!  Since coming off the Reglan and getting the continuous feeds, he has been much more content and peaceful.  The throw-ups and stomach discomfort has decreased, and everyone is getting a little more sleep.  Also because he's overall more relaxed, Jonah seems to be getting better with the pacifier and is even tolerating the bottle being presented at times.  It all couldn't have come at a better time.  We were able to attend his cousin Nola's 1st birthday party and hang out all weekend without the anxiety of Jonah's distress and discomfort.  Not to mention he's much more adorable and sweet when he's not screaming his head off.  We're praying this trend continues.

Hope everyone enjoyed the Labor Day weekend as much as we did!