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Wednesday, December 29, 2010

Happy Thanksgiving, Merry Christmas and Happy New Year

It's been way too long since our last post.   Sometimes it's not the lack of time that keeps us from posting, but it's what we want to write and the theme of any given day.  To be honest, it's been a rough month or so.  We look back at many of our posts, and the they generally have a very upbeat and optimistic tone, perhaps painting a happy and blissful family picture.  The daily, if not hourly, ups and downs don't seem to be as fairly documented on this blog as they probably should be.

When Jonah came home from the Glenn,  he had taken some big steps backwards.  We knew this though.  We knew he would have the headaches and it would take some time to recover from the surgery...just like after the Norwood.  However, this time we had less patience.  We had less energy.  We had nothing left in the tank.  To have a screaming, inconsolable baby who has to feed from a robotic pump and tube for 5 months will do this to ya.

For weeks the daily grind seemed unsustainable and hopeless.   Rob would drag himself to work half asleep.  Stacie would battle all day with Jonah, sometimes by herself and sometimes with the help of her mom.  Rob would come home from work, talk Stacie off the ledges of depression and give her a break from Jonah for the evening.  We were strung out and frustrated.  We wondered if we would ever have a child who could eat on his own.  We asked Jonah if he would always hate life as much as has these first 5 months.  We questioned why this had to happen to us. We questioned ourselves as parents.  We watched jealously as our friends and family with 'normal' babies did things like see Santa, take Christmas Card photos, post videos or pictures of eating solid foods for the first time, rolling over and tummy time, or just simply kissing their babies without tape, tubes and duoderm glued to their faces.

To most these may seem like trivial things easily taken for granted, but to us they are experiences that we pray for and have missed out on.  Yes, Jonah's heart is strong and stable, and we ARE ETERNALLY GRATEFUL his first two surgeries have gone so well, but Jonah's feeding issues and disposition are factors we never imagined struggling with at this point and for this long.  All we want in this world is for Jonah and our new family to be happy and enjoy a few of these "life stages".

Instead we are priming pumps, drawing up meds, checking the pulse ox, changing or re-tapping NG tubes, and futilely trying the bottle and cereal.  Although these holidays have flown by, we have tried desperately to make the best of them.  We apologize to everyone for poor or non-existent Christmas presents this year.  We shopped a total of 3 hours the day before Christmas Eve, spending most of that time stuck in traffic near and around malls.  On Christmas Eve we took Jonah down to hang out with his extended family, but we nearly left because of a classic freak-out episode.  Luckily the next day was quieter and Jonah had a peace about him that allowed us to enjoy Christmas day.  We were blessed again with thoughtful gifts and generosity from our family.  One day we will repay.

We miss Minnesota.  Pre-Jonah, if we had Christmas in Minneapolis, we would go to Chicago for New Years.  If we went to Chicago for Christmas, we would stay in Minneapolis for New Years.  This would alternate every year.  Why should this year be any different?  So yes, we are going to try to take Jonah up to Minnesota for New Years.  We are planning on leaving tomorrow.  Are we nervous?  YES.  Jonah's never been a big fan of the car seat, but if we leave early enough in the morning we think he might sleep most of the way.  We might be stupid and crazy, but as we've stated above, we are yearning for some 'normal baby' experiences, and traveling back to Rob's home and hanging out with our friends is one of them.  Let the adventure begin and wish us luck.

We will wrap up this post with a few recent pictures.  Happy New Year and good riddance to 2010!














Saturday, November 27, 2010

Who are you Jonah Robert?

  • Two weeks ago yesterday you had your second open heart surgery.
  • You're getting really big.  We wish we knew exactly your weight, but you've out grown a lot of your clothes.
  • You are starting to really like playing with your toys, grabbing and bringing them to your mouth.
  • Speaking of your mouth, you can't keep your hands out of there.  At least that distracts your fingers from pulling at your NG tube.
  • The last couple days you've started to show signs you can be a happy baby again.  Hopefully the headaches are wearing off.
  • You love being swaddled tight.
  • You love the pacifier.
  • You love to be held, bounced and patted on the butt.
  • You hate the bottle.  We're seriously considering going to Graz, Austria to take you to a special tube weaning clinic, but we're praying you'll be more interested in the bottle now that you're feeling better after surgery.
  • You hate the bath, but boy, sometimes you sleep the best afterwards.
  • Sometimes the changing table might as well be a bed of hot coals.
  • It seems like every time Daddy changes your diaper, you like to pee on everything during the 20 second window when you're without a diaper.
  • At first you don't like the car seat, but once the car is moving you change your 'tude.
  • You're always better behaved when we leave the house.
  • You're taking the following medicines daily: Calcitriol, Enalapril, Lasix and Lansoprazole, along with Tylenol and a multi-vitamin.  In some ways it's a good thing you still have the NG tube, because there's probably not much chance you would take them orally.
  • Sometimes you sleep through the night (10pm - 6am), but other times you can't sleep longer than 2 hours at a time.
  • You don't throw up anymore.  You haven't puked since before the Glenn.
  • You like to party. Last night you didn't go to bed until midnight.
  • When you smile you stick our your tongue and your eyes just light up.
  • You might give Conan O'Brien a run for his money with your hair like a tidal wave.
WE LOVE YOU LITTLE BUDDY AND ARE SO PROUD OF YOU!!!

Tuesday, November 16, 2010

Celebrate Good Times

You know the feeling when you are really focusing on something or involved in a really stressful situation and realize when it's all over you have been holding your breath the whole time? Your shoulders are tense, your teeth are clenched. Then all at once you let it all go and...relax. What comes next is an unwinding state of peace and quiet. That is exactly what I felt today as I woke up in my own bed and continued on to have a wonderfully restful day with Jonah and Rob. I think we were all doing a little recovering today. From the moment we walked in the door last night through today I have been overwhelmed with a sense of relief, like a weight has been lifted, like I could breath easier. And I am not even the one who had open heart surgery for the second time.

Jonah slept through the night, about 10 hours straight. We were pretty anxious on how our first night home was going to go since Jonah didn't let his guard down the entire time we were in the hospital resulting in nothing but cat-naps. Even through Lasix diapers, Jonah slept soundly in his little bassinet where we thought he'd be the most comfortable with his head elevated. Today, Rob worked from home but mostly hung out with Jonah and I as we alternated between practicing on the bottle, naps, and some light playtime. We actually saw some smiles from Jonah today as the haze seems to have finally left his face. We have not needed to use the Phenobarbital for discomfort. Tylenol and lots of swaddling kept Jonah calm and content for the better part of the day. You could just feel the healing taking place! We peeled away a few of his dressings to see his chest tube site and IV insertions sites are clean and dry. Jonah's over color is still a mystery to us. I think every time I look at him it's a different shade of PINK...not blue! It's amazing!  Back to playtime....as I write, this kid just woke up from a nice snooze and his chewing on his hands through some more smiles!  Glenn headaches...what??

Well, we know this is day 5 post surgery. We expect that anything can happen over the next 2 weeks. More Up's; more Down's. But it feels so good to take a deep breath and say a prayer of thanks that the worst is hopefully behind us. We feel so blessed!!!

1 hour before surgery




1 hour after surgery
 

 


Jonah's angel watching over him
 

A tangled mess - get me out of here Daddy!


Monday, November 15, 2010

There's No Place Like Home

We're back home! It was a long day of waiting around, but we're finally here. There's half of us that feels like our skin was crawling we wanted to get home so bad, but then there is the other half that feels eternally guilty for such a short stay. There are too many families still there who would kill to be in our place. To see and experience what happens day in and day out at a childrens' hospital will forever make you see the world with a different perspective.

Jonah is doing really good. His EKG and Echo looked great. However he's got the typical Glenn headaches and pain, and on top of his standard issue angry 'tude, you've got the perfect storm for an inconsolable baby. Fortunately we were able to convince the docs that we needed to be sent home with phenobarbital, most commonly used as a sedative to relieve anxiety. He had a couple doses when he was in the step-down unit and it really just helps him relax and be content when awake. It doesn't knock him out or make him all stoned or anything, rather he's happy and playing, so we really feel it takes the edge off him perfectly.

That's my quick update for tonight. Stacie and I are both exhausted, and we're desperate for a good night's sleep in our own bed.

Sunday, November 14, 2010

Deja Vu'

Like Rob posted earlier, at times it seems like we have never left Hope. And now, as we have made our way to the step-down unit we have landed in the exact same room we were in after the Norwood. Talk about memories:)

That's right, we were kicked out of the nest (PSHU) around 1pm. Not without a little drama however. Before we left the charge nurse, Krista, came in to remove Jonah's arterial line in his groin. First off, this is not a pleasant place to have an IV with sutures and tape. Next, when Krista went to remove everything we found some really gross looking drainage around the catheter. Even worse was a pretty good sized blister that formed underneath the tubing. I was petrified that this was going to be a huge problem...like, as in a pressure ulcer. Although it was probably the beginning of one, thankfully it turned out to be very superficial and about a 1/2 inch away from the insertion site of the arterial line. The other good thing is that I think we caught it early. Not even 24 hours earlier Jonah had his first poop after surgery and the nurse and I changed the dressing at this site because it got a little dirty. At that time, nothing looked out of the ordinary.

The plan for tomorrow is to have an EKG & ECHO done to look at Jonah's heart function after the Glenn. We also want speech to come and work on the bottle with Jonah when he is "sober". I think we pulled a fast one on him after surgery and while he was on all of his sedation he didn't even realize what he was doing as he had a few good runs with the bottle. Today Jonah wasn't too interested and seemed to be reverting back to his old ways. Still, the little man is just over 72 hours from surgery. I know we still have to get over a few hurdles. The promising thing is that Jonah has proven he CAN do it. After that we really hope to be discharged. Everything else is checking out okay...BP's under control, extra fluid gone, plan to manage headaches...

Just wanted mention that we met a really great couple while we were admitted for this surgery. Their son, Franceso, just had his Norwood and is on the road to recovery. Please send up a prayer or two for him and his mom and dad. He's another strong fighter, and we are really cheering for him and his parents to get home soon!

Saturday, November 13, 2010

Glenn update #4 - last day in PSHU

Hi all,
Jonah is still doing good.  He had his chest tube and one central IV removed today.  We're expecting to go to the step-down unit tomorrow afternoon.  Earliest we'd be discharged would be on Monday.  Here are some quick highlights...

He can still get pretty angry when he's awake, but at least it's getting easier to hold and swaddle him now that he's got fewer things attached to him.

We've had a couple scares each night.

The first night, when we came back up to see Jonah after dinner, the nurse asked us if Jonah's pupils were always different sizes.  What?  No.  Well, the one pupil was bigger than the other and they were watching his neurological signs closely, but everything else looked normal.  Obviously we went to bed worrying about potential neurological problems, but fortunately at the 3:00am assessment both pupils had returned to the same size.  They are guessing that some of the excess pressure from the Glenn had built up behind one of his eyes to cause this, and as the pressure subsided, so did the enlarged pupil.

The second night (last night), when we came back up to see Jonah after dinner, the nurse asked us if Jonah's chest gets all red and blotchy when he gets angry.  No, we replied, his chest gets the same color as the rest of his body when he's pissed off.  Sure enough, when we unwrapped him to take a look, it was obvious something wasn't right.  To me it looked like a rash, like someone had rubbed poison ivy all over his chest, but it wasn't puffy, raised or hot to the touch.  Thoughts like infection and allergic reaction are running through our heads.  The nurse quickly paged the attending doctor, and she arrived promptly.  Her assessment was that it may be a skin reaction to the Tegaderm transparent dressing they used to cover the incision on his chest.  It didn't make entire sense at the time, because Tegaderm was also on his legs and he didn't have the same reaction.  But after 24 hours the redness started to fade on his chest.  The case against Tegaderm was also strengthened when they removed the Tegaderm from his legs today, the same skin reaction took place.  I guess it's just sensitive skin when the adhesive is removed.

Yesterday we got the most time with Speech Therapy since Jonah's been born.  The Speech Therapist worked with Jonah on the bottle and gave us invaluable information.  Most importantly, Jonah can do it - it's just he needs a lot of help and support - and you can't just shove the bottle in his mouth like a normal baby and expect him to take it.  There were techniques that we were never taught, but they worked and continue to work.  For example, we need to apply surprisingly firm upward pressure on his chin or lower jaw to help him latch on.  At the same time, we need to be placing the bottle nipple on the middle of his tongue and applying pressure downward.  He also needs frequent breaks so he can catch his breath.  We can try this for 10 minutes and then feed the remainder via NG tube.  So far it's been slowly working, however today wasn't the most ideal day for working with the bottle.  In order to remove the chest tube, they wanted Jonah's stomach empty.  Then after they remove the chest tube, they do an x-ray, and then someone has to read the x-ray before they give the OK to resume feeding.  So he went 7 hours today without eating - not a lot of opportunity to work on the bottle as you can imagine.

The Ronald McDonald House has been great, and it's really eye-opening to see how important a place like this is for so many families.  There are some families that have been here over 6 months, babies that were here when Jonah had his first surgery, but they haven't been home yet!  There are some truly heart-wrenching stories, and it makes us feel fortunate (but very guilty) that we are "in and out" so quickly with Jonah.  It's just a reminder of how serious and risky these congenital heart defects are, and that we should never take for granted Jonah's health.

Thursday, November 11, 2010

Glenn update #3

In some ways it feels like we've never left the PSHU, we just moved rooms...a lot of memories of the month long stay we had during the Noorwood.  But we were so glad they had a room for Jonah on the PSHU instead of the PICU, and it was especially nice to see all of Jonah's nurses that took care of him before.  These nurses are absolutely the best, and we love seeing each of them stop by to say hi and see how Jonah's doing.

He's extubated, on oxygen, pain meds, got the central and peripheral IVs, pulse ox, one chest tube, and a urinary catheter...I think that's it but Stacie would have to tell you about all the other medicines and things they are doing.  His blood pressure has been really high.  It was in the mid 130's for a while...the nurse said they would like to see it at 80...seems pretty darn high to me, so they are giving him some blood pressure meds and lasix to help him pee out the excess fluids.  He's woken up a couple times pretty pissed off, thus they're using some sedatives to keep him relaxed.  Much of his irritability is likely the result of all this new pressure and what they call "Glenn Head" or Glenn headaches.  He's swollen, but not as swollen as post-Norwood.  There's is a distinct 'line' around his torso where you can see the difference in blood flow (his upper half is a lot more pink than his lower half)...they tell us this will subside as his body recalibrates to the Glenn and the new blood flow.

So what exactly was done with the Glenn?

This surgery basically diverted all the blood coming back from Jonah's upper body through the Superior Vena Cava (the major vein coming from the upper body) connecting directly to blood vessels to the lungs (pulmonary arteries). Blood with more oxygen is pumped to the aorta to supply oxygen to the body's organs and tissues. This reduces the work of the lower-right heart chamber (right ventricle) since it doesn't have to pump all the upper body's blood to the lungs and can focus more on pumping oxygenated blood to the body. 

We got a room at the Ronald McDonald house!  It's only 2 years old and is surprisingly luxurious.  They have volunteers make dinner each night and there's a large community kitchen for making meals.   Other ammenities: TV rooms, library, game room, kids play room, wi-fi, laundry, and Sleep Number beds.  It really has the feel of a top-notch resort...another heart parent reminded us "It's the best place you don't want to be".  This will save us hours each day commuting back and forth from home, allowing us more time to help Jonah recover.

Before I log-off, I just want to thank everyone for all the kind posts, texts, emails, and phone calls.  It means so much  to us to have all your support and prayers.  Thank you!

Glenn update #2 - DONE!!

We can't believe it! The nurse just came by to tell us they are already finished and he's off bypass. She came out at 9:15 to tell us they were starting bypass and the next update would be at 10:30. Instead at 10:15 she came out to say they were finished. We have to wait another hour while they wrap some things up, then they'll move him to the PSHU where we'll be reunited again! So happy and one giant sigh of relief!!!

Glenn update #1

Well Jonah is back there. Morning started at 3:15am to turn off the feeds and we were out the door at 5am. We waited a bit because Ilbawi had an emergency procedure on another baby, but we were only delayed 40 minutes or so. He was surprisingly content in the pre-surgical room just before they took him back. Hopefully we'll get an update soon when they are finished prepping him.

Wednesday, November 10, 2010

Turning Point

It is the day before Jonah has his 2nd open heart surgery and he is 14 weeks and 5 days old...exactly. Those numbers hold some meaning with me because I never, in 1,000,000 years, would have thought we would be preparing for the Glenn so soon. All of the numbers that the doctors give you at the very beginning are a complete approximation. Nothing is ever guaranteed. But sitting at the table, pregnant with the baby that these ballpark figures impact the most, I was definitely holding on to the idea that Jonah would be having the Glenn done somewhere around 4-6 months. I guess I held on too tight to that and is why I still am so amazed we are actually at this turning point.

Every story we have read, every parent of a child with HLHS...even the doctors and nurses...says that after the Glenn, life for these kiddos becomes so much easier (relatively, of course). These babies hopefully begin to gain weight a little better, energy and strength improves, and they are overall just happier babies. Although I have heard this several times, it is not something I am quite convinced of yet. It's one of those, "I'll believe it when I see it" type of things. In a way, I think I have become used to the way things are and sort of assume this is just the way it is. And, we have adjusted. For the most part, we have fallen into a comfortable day-to-day rhythm...and as odd as it is to say...it's really not that bad!! It is all about to change though. For the better!! And, when I really let that sink in, I get really excited (of course, scared at the same time:)). Because the gift of having Jonah here with us every minute of every day learning about the world... realizing for the first time that his hand is actually connected to his body instead of floating randomly in front of him-then using it to bat at his toys, smiling and reacting to his goofy parents making all sorts of funny noises and faces, and being loved by all of his grandparents, aunts, uncles, friends, and cousins...I can't imagine life any better than it is at this very moment!!!

Even though we know the recovery of this surgery will have its challenges, we are so excited to get to the other side. To really see, for Jonah, how the Glenn will help him turn the corner after the hardest fight he has ever had to fight. The Norwood was by far the most complex of the 3 surgeries and the time in between the Norwood and the Glenn is the most unpredictable. To know that we are about to close that door and open another...I can honestly say, I am ready to go running in!!!!

Sunday, October 31, 2010

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!!

Thursday, October 28, 2010

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?

Monday, October 25, 2010

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.

Sunday, October 10, 2010

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...




Wednesday, September 22, 2010

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...









Wednesday, September 15, 2010

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.

Monday, September 6, 2010

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!

Sunday, August 29, 2010

Eat, Sleep, Cry

The first week with Jonah home was tougher than we thought.  No doubt, he's a project that requires 2 FTEs 24/7.  There are signs of improvement each day, but Mom and Dad are running ragged just trying to stay on top of Jonah's schedule.  Hence, this post will be just be some quick highlights.
  • We stopped the formula supplement, which seems to have helped his stomach discomfort a bit.  So now he's on a 100% breast milk, but in order to get the extra calories needed for weight gain the volume per feeding needed to be increased. 
  • Jonah had his first Norwood Clinic on Friday.  When they called us back from the waiting room, Jonah proceeded to puke up his meal on his only outfit (Stacie brought everything but the kitchen sink in Jonah's diaper bag...but forgot a change of clothes-oops).  This led to an unhappy and mostly naked Jonah for the rest of the visit.  We met Gia and Dr. Husayni and everything checked out okay.   His weight had stayed about even, 8.2 pounds, so they definitely want to do everything possible to beef him up without causing stomach discomfort or throw ups. 
  • Jonah's 'collicky' behavior is getting a little better, but he still gets raging mad and upset far too often than his parents would like.  It's so hard for us to differentiate 'normal' baby stuff from everything else that's he's going through.  Is he just hungry?  Is he over-tired?  Is it acid-reflux?  Is it his stomach?  Is it the Reglan?  NG tube?  Is he breathing too hard? After a call to the the PSHU staff, it was explained to us that this behavior after the Norwood is extremely common. These kids have plenty of reasons to get GI distress (too many details for the moment) and only time and maturing will relieve them of some of the issues.  
  • He's slow to take to the pacifier, and he's definitely still stumped on what to do with the bottle.  We try a couple times a day, but at his next clinic visit they will do a swallow study to make sure he's got the suck, swallow and breath coordination down sufficiently.
  • Reinforcements have been called in.  Finding time to shower, eat, clean, do laundry, and of course sleep, is a luxury at the moment.  Stacie's mom will take this week so that Rob can go back into the office.  Rob's mom will then take duty the subsequent week.
Although we were expecting a complete culture shock bringing a newborn baby home, we can't say enough how challenging the "extras" have been. We have been sticking together through thick and thin, each of us only wanting the other to have a few minutes to de-stress somehow as we take turns managing the little guy. Jonah has had us holding our breath for the last month as we learn about what it's like to raise a child with a congenital heart defect.  Knowing we still have a long way to go and so much more to absorb, we can't help but feel anxious to see Jonah grow up and grow out of this extremely fragile state.

Tuesday, August 24, 2010

Home at Last!

Yes, we're finally home with Jonah.  He was discharged Monday.  After a morning flurry of therapists, nurse practitioners and doctors coming in to assess Jonah one last time, we were finally given the green light:  we could go home.  There was a lot to do:  get pulse oximeter equipment, schedule the home health nurse, find a cooler to pack up the gallons of frozen breast milk archived over the last 3 weeks, run to Walgreens to pick up baby aspirin, reflux medications and vitamins/supplements from Walgreens (note: no cardiac medicine!), sign discharge paperwork, etc.  Many of his favorite nurse girlfriends at the PSHU stopped by to see him off.  So by 3pm we were all packed up and had Jonah ready to go in the car seat!  We were nervous, but so excited and proud....we may have held our breath the whole way home:)

Jonah did great for his first car ride.  He slept most of the way, but by the time we were pulling into our neighborhood, he was fussin'.  And the fussin' didn't stop.  We were quickly overwhelmed with trying to sooth and feed Jonah, unpack and get organized around the house.  Before we knew it, it was 7pm and we realized we hadn't eaten all day.  Luckily reinforcements, Jonah's grandparents, showed up just in time with dinner and a helping hand.  Jonah quickly behaved for his company, sleeping soundly the entire time.  Unfortunately, that would be the last time he would sleep the rest of the night.  Mom was up all night with him.  Dad got a couple hours of sleep, but often interrupted.

The schedule just doesn't allow for sleep.  Jonah needs feedings every 3 hours.  It's a 2 man operation at this point. One of us consoling Jonah and keeping him calm, and the other holding up the syringe elevated at the right height to control the speed in which the milk runs through the NG tube and into Jonah's stomach.  Each feeding takes 30-40 minutes to administer. Then there's the milk preparation, the cleaning, the diaper changes, Mom's pumping, giving the meds...and by then it's time to feed again.

Currently we have 2 challenges:
  1. 1 in every 3 meals has been ending in a spit up/throw up. We're still trying to figure it out, but it seems like something is causing an upset stomach.  We have a couple theories and are just trying different tactics.  It might be the formula (which is added to the breast milk for extra calories).  Each time we've skipped the formula, Jonah has kept every drop down.  It could also be the timing of the Reglan. 
  2. Keeping Jonah calm and happy.  Jonah's heart is still healing, so it's important to calm him down the minute he starts to fuss.  We understand he's a baby...and babies cry, however when Norwood babies get too worked up it causes unwanted blood flow and pressure in the lungs and can make for further distress. 
Overall, the first 24 hours seemed to be a balancing act of what works and what doesn't, what is normal and what isn't. We're scrutinizing every detail. Needless to say we are facing as much of a mental challenge as we are emotionally and physically. Then again, each moment we have had with Jonah in our arms, looking up at us in the comfort of our own home, we delight in the fact that we have our courageous little boy with us completing our family!


My first bath


My Radio Flyer ride to step down room



Hit the gas daddy, we're going home!

Saturday, August 21, 2010

23 Days in a Row

We spoke too soon in the last post. Even though Jonah was ready to be moved to the step down room on Wednesday, it wasn't until 11pm on Thursday night that a spot finally opened up. We packed up the PSHU, threw Jonah in a Radio Flyer wagon and wheeled him down to the 2 Hope unit. We were happy to finally get a room, but we also knew this meant our chances of being discharged before the weekend were gone. Luckily we had packed a duffel bag full of clothes, pillows and blankets in the event we had to stay the weekend.

After getting Jonah situated and tucked into bed, we looked at our new sleeping accommodations for the foreseeable future: bathroom, shower, sink, TV, DVD player, mini-fridge, sleeper chair, recliner and of course Jonah's bed and equipment all packed into a 250 sq ft room, give or take. Sleep did not come easy. They have Jonah's monitoring alerts programmed to a very narrow range, so the constant beeping never seemed to stop. Jonah was awake too, mostly by his own free will, but he also had a couple visitors throughout the night, including a respitory therapist come for a chest physio therapy session at 4am. Chest physio therapy (CPT) sessions (pounding on the chest and back to keep the lungs loose and open) has been something we've grown accustomed to lately, but not at 4am.

Before we knew it, the morning rounds and the hustle and bustle of the day had begun. We met with the cardiology nurse practioner who gave us the low-down on discharge and home care. A social worker then stopped by to discuss insurance and home health visits. Next a physical therapist dropped in to advise us on exercises and miscellaneous "do's and don'ts". Then we were given the assignment to replace Jonah's NG tube - this is something that really pissed off Jonah, but Stacie did great! Afterwards, we went to CPR training. Then it was time for another CPT session. Then it was time to try gavage or "gravity feeding" (think beer bong, but with breast milk). By the time 6pm rolled around, Jonah and his parents were tired and cranky. Thankfully Jonah was ready for a good sleep after being up and bugged all day, granting mom and dad with the opportunity to eat dinner (thanks Mrs. Schwab), shower and clean up. Dad also ran to Target to pick up a magazine and the latest seasons of Dexter and Curb on DVD.

We expect the weekend to be much quieter with fewer things on the agenda. We still have the Car Seat Challenge (how does Jonah react in a car seat and parental instructions) and the Swallow Study to look forward too. The Swallow Study is a little disappointing to hear, because it means they suspect Jonah may be aspirating (meaning when he swallows liquid, it may be going into his lungs instead of his stomach – which can cause pneumonia). We’re hoping this is a very precautionary assessment since he won’t be able to continue trying to feed out of a bottle until they are positive he is not aspirating. Although it does not dictate we get discharged, but ideally, we would like to begin alternating feedings via bottle and NG tube as soon as possible. Jonah can’t even try a bottle until speech therapy approves it and/or the Swallow Study results are cleared.

Our biggest challenge is if we can take 2 more nights or more of this step down room. It’s like a loony bin and sleep deprivation could get the best of us. Not to mention we have been at the hospital for 23 consecutive days, starting with the final fetal echo on July 28th and subsequent induction on the 29th. Needless to say, we are eager to bid farewell to our home away from home.

Wednesday, August 18, 2010

Almost Home

Quick update.  We know it's been a few days since our last post, but mom and dad are exhausted (and Jonah's not even here yet).  We were anticipating moving downstairs to the "step down" unit today.  We had our bags packed and were all ready to settle Jonah into his new room.  Once there, the nurses are less hands on and expect the parents to take on more responsibility, including overnight care.  Jonah's daily routine consists of feedings, medications, therapy sessions, diaper changes and getting held by mom and dad - so definitely not enough to warrant ICU status!

So we waited around until after 9pm when they finally told us that there was not going to be an available room for Jonah tonight.  "Our" plan is that we move downstairs early tomorrow and be dicsharged on Friday early evening.  The next couple days will consist of a lot of teaching and training (NG tube placement, CPR, medication administration, car seat challenge, etc), so if we can pass all of their tests, maybe there is a chance we could all be home for the weekend! 

Since the last post, he's off the oxygen completely and had the central IV pulled. Just a few days ago I needed a calculator to count the number of tubes and wires connected to him, however as of tonight he only had 3 (NG tube and two IV's)! It's awesome to see him looking like, and acting like, a typical baby.

Jonah, you are our champion, and if these few weeks of your life are any indication of what you are capable of, the sky's the limit for you buddy!

Monday, August 16, 2010

A Quiet Weekend

Now where were we?? Ah, yes. After Friday's interventions, Jonah continued on the fast track towards healing and recovery. By Saturday morning Jonah was holding his own after his oxygen and medications continued to be weaned. He was now completely off of all sedation and pain medications. The team was finally able to change the dressings that were placed after the chest tubes were pulled. These had been looking pretty gross since the site had leaked the extra fluid when the tubes were removed. At the same time they took off the dressing on his chest incision. Jonah's scar will forever mark his start in this world and remind us of the road he has traveled. Looking at how smoothly his baby skin has been restored and thinking of what he has already experienced it reminded me of a great song by Jars of Clay...
"This road that we travel may it be the straight and narrow
God, give us peace and grace from You, all the day
Shelter with fire, our voices we raise still higher
God, give us peace and grace from You, all the day through"

We know Jonah's path has been paved with peace and grace!! And Rob and I are so blessed to walk this walk with him!! 

Saturday got even better when we were able to hold Jonah again for only the 2nd time since he was born. To feel his weight in our arms made us both want to break him free of the remaining tubes and IV's he still had connected and run for home:) It was not as comfortable for any of us because of all of these things but Jonah found a cozy spot and was able to take a short snooze while we watched him intently and snapped a few pictures. He has started to get the hang of his pacifier which encourages us greatly since it is a sign we can attempt a bottle soon...maybe this week!

Sunday continued along the with the same progress. Jonah's feedings of breast milk were advanced so that he is meeting his goal in terms of the amount he will receive in 24 hours. They added a little bit of fortified formula so that he will get a few extra calories too. We were able to hold Jonah, change diapers, dress him in a onesie, and interact with him just like any parents would do with their newborn. There was no sight of the sick E.T. we saw on Friday, instead we joyfully enjoyed the quiet on the unit and the friendly conversation with the staff that we become so close with. By the time we left on Sunday we discussed the plan for Jonah this week with his doctor.

  • The only remaining central IV will be removed today (Monday)
  • The only remaining continuous infusion of medication for his blood pressure will be stopped
  • All meds will now be converted to an oral form
  • Jonah will meet and work with therapists of all varieties...physical therapy, occupational therapy, and speech therapy to build up his strength and coordination
  • Possibly move Jonah down to the cardiac step down unit sometime midweek!!!!! Here Rob and I will assume all cares for Jonah and get all of the teaching we need to take this little guy home.
I can't believe that we are crossing this bridge already. So much has happened in such a short time after waiting for so long. The idea of having Jonah home with us is too wonderful for words.











Friday, August 13, 2010

Tale of 2 Days

We knew the extubation today was going to be a big challenge, but neither of us could have predicted how the day would unfold.  When we first called into the PSHU (Pediatric Surgical Heart Unit), as we do first thing every morning, they told us they had already extubated Jonah.  He was doing just fine, and they were watching him very closely.  Relieved, we left for the hospital happy, confident and excited to finally see our son without a breathing tube down his throat.  However when we walked into Jonah's room, one of Jonah's favorite nurses told us he was doing just "ok".  Immediately we could feel the tension in the room.  As parents we are constantly dissecting the energy and body language of the doctors and nurses, and it was obvious the nurse felt things could be going better.

After getting the scoop, our previous confidence and excitement had been replaced with fear and anxiety.
  1. His lactate level was elevated and climbing.  This acidic buildup was causing unwanted stress on the heart.
  2. Blood culture results showed bacteria, a strong indication of infection.
  3. Jonah's temp reached 101.5, which caused us concern the infection had started a fever.
  4. The bandage site from where the chest tubes had been removed continues to "ooze" and was seeping towards the chest incision and central IV.
  5. Jonah's overall color was very pale, indicating his heart may not be delivering enough blood to his entire body. He reminded us of a sick E.T.  :(








To say the least, we were very, VERY worried.  It was the first time we had seen him really struggle.

But to the credit of the PSHU staff, they were on top of everything.  It's incredible how prepared they are and how quickly they can respond and treat these heart babies.

  1. Dobutamine was given to help relieve the stress on Jonah's heart
  2. They increased the oxygen fed through the nasal cannula
  3. Antibiotics were administered
  4. A new peripheral IV was put in his right foot
  5. A blood transfusion given
  6. Cleaned and redressed the central IV
  7. Changed Jonah's sheets and blankets
As all these activities initiated, we thought it would be a good idea for us to take a break, get some fresh air and de-stress. 

When we returned to Jonah's room, the cardiologist and nurse were just wrapping up with all the above proceedings.  The tension was gone and they were smiling.  Jonah was doing GREAT!  His lactate level was much better, the fever was gone, the color pink had returned to his body, and he was sleeping "like a baby".  He looked so comfortable and at peace.  After a daunting afternoon, the warmth of Jonah's healing heart had revived our spirits.







Breathin on my own!

It's a New Day

By the time that I touched base with Jonah's nurse this morning, several things were already checked off of his daily "to do" list. The catheter in Jonah's bladder was taken out...and he had already peed twice on his nurse Julie; both of his chest tubes were pulled; and he had already started his first trial of the day to again evaluate his readiness for having the breathing tube removed. It was when we arrived at the hospital today that we discovered something that was definitely contributing to Jonah's labored breathing yesterday. The chest tubes had not been draining much fluid for the last couple of days and the team firmly believes in doing away with the invasive things that are no longer needed as soon as possible. When we were getting settled in for our visit, we learned that when the tubes were pulled a pretty significant amount of fluid followed...a "gush" as Dr. VanBergen and Julie described. It turns out the chest tubes were clotted somewhere near where they entered the lung space and the chest xray did not clearly show this fluid in the bases of Jonah's lungs. After this happened another chest xray was taken and showed a much better picture. Also, Jonah was breathing more comfortably...and the quality of his breaths greatly improved.
As a result, the CPAP trials Jonah had failed yesterday were a walk in the park today.

The rest of the day today was great! Jonah was actually able to be swaddled like any 2 week old baby should as he had no more tubes or drains connected to him from the chest down. He was also much more awake and energetic in a way that was almost playful instead of irritated as had been the case the last few days. We left this evening after listening in on rounds and hearing the plan for tomorrow...the big task- getting rid of the breathing tube!! They are thinking this will likely be done by 10am. We will be able to see his face again, we will hear him cry again, and hopefully he will take a pacifier:) As with everything up until this point, removing the tube can come with its fair share of challenges. The first 24-48 hours of breathing on his own could give Jonah a run for his money, but the way he has been managing things so far, we think he will do just fine!















Wednesday, August 11, 2010

Goals

It has been one week and one day since Jonah had his Norwood surgery. Even before Monday when Jonah had his chest closed, his medical team was already prepping us for the goals and expectations they had for him once this big milestone was reached. This was explained to us very loosely; no guarantees, no promises.

Jonah has continued to tolerate his chest closure very well.  Yesterday was another big day...the tentative plan mentioned previously was executed. One chest tube was pulled. One central IV line was pulled. Epinephrine was stopped. Feedings of breast milk started at a slow drip. Sedation significantly decreased. The next goal was set for Thursday...Jonah's doctors want to remove his breathing tube. Rob and I could not have been more thrilled to even hear them speak of this so soon. Again, when the path was mapped out for us, the timing of this was, and still is, not written in stone.

Before they can remove the breathing tube, Jonah is "tested" to evaluate his ability to breath on his own. This took place today. The staff do this by essentially turning off the breaths of air that the ventilator is giving him and allowing him to take those breaths on his own. He continues to receive assistance from the machine but it is only intermittent and serves to give his own breaths a little boost. While this trial is being run, there are many things to monitor. The nurses draw frequent blood samples called arterial blood gases. This results in several values but an important one is Jonah's carbon dioxide levels in his blood. Carbon dioxide is exhaled normally when we breath...too much left in the body is not good. It truly becomes about the quality and not the quantity here. During Jonah's first go of it, he did okay. Not great, not horrible, but just okay. Basically, the quality of his breaths were not quite sufficient enough to plan on taking the breathing tube out tomorrow; his carbon dioxide levels were a little higher than the doctors would like. Also, Jonah is still kind of shaped like a bowling pin (as Rob has described it). He has just a bit more fluid to loose around his belly, a factor that is not helping the situation. With that, they will "test" him again tomorrow looking at possibly removing the tube Friday or Saturday.

We are so thankful for many other things today. Jonah has been handling the breast milk in his stomach wonderfully. It's the first time in his short life that he has actually been fed!! Pretty basic, I know, but this is major. Until now Jonah has been getting his nutrition through an IV.  He is waking up a more and more from his sedation which he needs to do in order to start working on his own. And, Jonah continues to get rid of the extra fluid. So, we are giving credit where credit is due....Way to go big guy, keep up the good work!! We love you !

Monday, August 9, 2010

Keep on Truckin'

Somehow, somewhere Jonah must have read the rulebook on recovering from the Norwood procedure. He is doing absolutely wonderful!! We could not be more proud of the little guy! This afternoon after Jonah's chest closure was quite relaxing. We did not see Jonah's eyes open again as he fell "comfortably numb" into a sedated sleep. His nurse today told us that if problems were to arise after the chest closure they would have started to see signs immediately after the procedure. There were no alarms, no bells or whistles indicating that things were changing. Instead we listened to some music while sharing some pictures and dog stories with Jonah's nurse, Lana.

It has been such a joy watching the nurses grow more and more attached to Jonah as the days have gone by. They are just so good with him, so gentle. They have made us feel more confident at Jonah's bedside also. Now we are encouraged to touch him, we can tuck him into his little blanket and I was even able to rub some lotion into his scaly hands and feet today. It feels so good to be able to do something, anything for him during these days and weeks. Our hearts overflow with love for this little boy and we want more than anything for him to know that he is not going through this alone.

Each time we leave for the night, we say our prayers of thanks with Jonah for all of the days blessings. We feel a sense of peace walking out knowing that even though we are going home to rest, God is settling in to watch over Jonah, his doctors and his nurses.

Plan for tomorrow...tentatively:)
1. Stop Epinepherine infusion
2. Pull another central IV, the one in his left femoral artery (the other was already pulled out)
3. Remove 1 of 3 chest tubes
4. Feeding small drips of breastmilk through the NG tube
These are big moves!!
















Chest Closed

(Big sigh of relief), well Jonah's chest is closed and all went smoothly.  We arrived at the hospital just as they had began the procedure.  We knew the exact time was going to be unpredictable; Dr. Ilbawi and team have four surgeries scheduled today, so all we knew was they would squeeze in Jonah's chest closure when they had a spare hour.  When we got to Jonah's unit around 3pm they already had his room quarantined off as they transform his room into a mini-OR.  We sat in a crowded waiting room feeling guilty we hadn't shown up in time to see him off.  But we knew he would do great, and he did!

When they were finished and called us back, Jonah was waiting in the room with his eyes open ready to greet us (which is astonishing considering they had increased his sedatives and pain meds for the procedure)!  Jonah looks very comfortable with the heat lamps warming him up...you just want to jump into the crib and curl up next to him!  They will continue to closely monitor him overnight, checking blood gases every hour and making adjustments as needed.  If he continues to respond this well, they will give him 3ml of milky goodness via the feeding tube.

We will post some pictures later tonight.

Sunday, August 8, 2010

Chest Closure Monday

The nurses are saying he is ready to have his chest closed tomorrow.  Although this is another great milestone, it still makes us nervous not knowing how Jonah's body will react.  If all goes well, he could get his first sip of breast milk through the NG tube by tomorrow night or Tuesday. 

Jonah is looking really good.  The swelling has almost completely disappeared from 2 days ago, especially in his head, hands and feet.  Currently Mom is reading Jonah books while Dad posts this update.  It's quiet and peaceful here, enough so that Dad might close his eyes and share some Z's with Jonah.

The nurses and doctors have been so wonderful, we really can't thank them enough.  Last night Stacie and I were discussing about how we can give back as we learn more about all the fundraisers, golf outings, dinners and many other ways to donate or volunteer.  There's really a tight niche group of doctors, nurses, patients and parents here - and the appreciation of the staff and love for these kids is very apparent.  There is something unique and special here.  We're just so fortunate and grateful, that no matter the outcome, we have been exposed to a community that will always be a part of our lives.

Friday, August 6, 2010

Quick Update

Both Stacie and Jonah are doing great.  Stacie's fever has passed and Jonah's swellling is way down.  It was Jonah's 1 week birthday today.  Happy Birthday little buddy, you're doing awesome!





New URL coming soon

Unfortunately we will be changing the url to http://jonahandwhale.blogspot.com/ at some point over the weekend.  Since the blog has spread and is searchable, we want to remove our last name referenced in the url.  Please save this new url or replace it if you are using it as a bookmark.  If you click on the new url before we have switched it will say "The blog you are looking for cannot be found", but when you see this message on the current or old url, you will know that we have moved to the new site.  We will give everyone some time to jot down the new address before we make the switch.  Sorry for the inconvenience.

New Hospital, New Patient

Stacie woke up this morning with a fever...aches, chills and a 101.8 temp.  So after calling around to find out where/who to check in with, we ended up driving to the closest ER (Good Samaritan in Downers Grove).   And that is where we're at now, waiting for blood and urine tests to come back.  However regardless of the results, Stacie will not be able to visit Jonah for the next 48 hours.  We're praying it's not something contagious and Jonah's not at risk.  Dad feels fine and will probably visit Jonah later this evening once Stacie is back home and rested.  It's devastating to know Stacie can't be with her son over the weekend.

Jonah is still doing good.  The docs are getting more aggressive on getting the fluids out of him, so they got Diuril and Lasix to make him "diurese" (i.e. pee a lot).  If over the next few days his swelling subsides, they will probably close his chest on Monday.  Jonah is also on TPN now, and they are turning the dial down on the respirator which allows his lungs to work more independently. 

Yesterday was also the first time Jonah opened his eyes since surgery!  He was looking around, looking at his parents, looking at all the machinery surrounding him...but it seemed like he started to realize where he was and noticed the breathing tube jammed down his throat.  I would be pissed too.  The more he fought the tube, the more air he gulped into his stomach - which caused hiccups.  Imagine hiccups with your chest wide open...  We could see Jonah making all the faces like he's crying out, but it's silent.  On one hand we were ecstatic to see his eyes open, but on the other hand, the more awake he was, the more irritable he became.  The nurse agreed it would be a good idea to turn up the sedative and pain med, and based on the report we got last night, he slept much more comfortable overnight. 

Since I started this post, Stacie is feeling better and sweating out the fever....she's at least good enough to squeeze a pumping session in the ER gurney...oh how I wish I had a picture to post!!!  :)

Thursday, August 5, 2010

The first 24 hours...

Yesterday, sometime around 4:30pm, Jonah sailed right past the 24 hour post operative period with flying colors. During this time after the Norwood procedure, there is an elaborate dance between medications, ventilator settings, blood pressures, lab results, IV fluid in, urine and chest tube fluid out...and our 6 day old little Jonah gets to choreograph the whole thing. The doctors and nurses take this process very seriously and would do nothing to push Jonah too fast. Basically, with every finely tuned adjustment the team waits for his response to the change and move on methodically from there. This is what makes these hours so unpredictable. In turn, it makes Rob and I hold on to every breath every time our phones ring. Of course, Jonah has made us so proud! He is taking this whole thing like such a champ!! He has tolerated every change the medical team has made and is moving in the right direction. We celebrate and are so thankful for each milestone he meets while at the same time remind ourselves that anything can happen. With that being said, my anxious heart is always met with the calming peace of our loving God ultimately reminding me that He has the upper hand in all of this.

At the end of such a big day (and after having to go back to the hospital at 1100pm last night to get some pumping supplies I left there), Rob and I came home to our "first child" (our dog) Sasha!! There was nothing better than seeing her at the door shivering with excitement as we pulled into the garage and the jumping around at our feet as we met her in the yard!

Somehow everything just seemed alright.

Tuesday, August 3, 2010

Miracle on 95th St

Up at 4:45am, the day started with a torrential storm, however we still made good time to the hospital (on 95th Street).  Which was important cause we wanted to get there early enough so we could hold Jonah for a few minutes and see him off to surgery. Once we got to the surgical waiting room, it was wonderful to see our family there.

We got updates every hour and a half. Time went by fairly quickly. We took a lot of breaks, whether it was pumping, grabbing coffee, stepping outside, or hitting up the cafeteria. The most anxious hour was when we knew they were taking Jonah off the Heart and Lung Bypass machine, as this is when they restart the heart and see how these babies respond to the whole ordeal. Jonah did awesome! The surgery could not have gone better from what we were told. Afterwards, Dr. Ilbawi stopped by to tell how well he had done, but reminded us that the battle is only half over. The next 72 hrs are still very critical.

Everyone had warned us how different Jonah would look after surgery, and they were right. He is very puffy and the swelling will increase over the next 24 hours.  He is also hooked up to nearly triple as many tubes, IVs, monitors, medications and pumps compared to the NICU. Although we were warned, we were both overwhelmed when we finally got to see him.  We have so much to be thankful for. Jonah made it through surgery without complication, and among many other things, he has his own room with highly specialized nurses caring for him 24/7.

Mom and Dad are utterly exhausted. We actually can't define how we're feeling right now, so this post will be short tonight. Although we want to share a few pictures, we will give the same warning the doctors gave us. These pictures are what made the decision for surgery so very difficult, but we know this is what's required in order for Jonah to experience life.


First time holding Jonah since birth




New and improved Jonah
Proud parents

Dr. Ilbawi and team

Jonah's new room