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!

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!!!

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!



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.

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!

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.

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!