Hi everybody!  I'm typing this post as I watch my beautiful son laugh and clap in his Rainforest Jumperoo, and I can't help but feel blessed!  I must admit I update my Facebook page about Kaleb's progress much more regularly than here, so if you're waiting for WAY too long here, feel free to friend me over there. ;)  We have been home from Kaleb's first surgery for more than 2 months now, and we've been busy.  I should start by saying Kaleb is thriving!  Though we are still a "stented single-ventricle" kid(which Dr. Nugent has said 1000 times!) his oxygen levels are great and his weight has continued to trend up. 

Kaleb is getting ready to have his 11 month birthday, oh my gosh, which is AWESOME!  His Children's PT and OT gave us a milestone chart, and as any good mother, I've started to OBSESS about all the things I'd like him to be doing.  I'm sure there's a 12-step program I should be checking into(just like with the one for milk production), but for now I'll just have to try to keep it under control.  His new skills have been entertaining us for weeks now:
Clapping, waving, saying Ma-Ma, rolling over all the way to the point where he gets stuck on his arm and screams for rescue(he has rolled all the way over once!), raspberries w/talking, high fives with each hand and both, removing his toys from a container in record time, sitting up all by himself, and he sprouted a tooth and a half!  Every stage with him is cuter than the next, and we are truly loving having him here at home.

In addition to his developmental milestones, we've had major GI changes.  When I posted shortly after his first surgery, the vomiting had disappeared.  Unfortunately, after a couple of blissfully vomit-free weeks, it slowly returned to full frequency and volume.  We had to spend some time in Children's having this observed, and after demonstrating his impressive vomiting abilities for a few days, an Attending GI whom we'd never met walked in to evaluate Kaleb.  She suggested a medicine we'd never heard of, and in 1 dose, he didn't vomit again.  Let me say that again.....he didn't vomit again!  His miracle med is called Periactin, and it's categorized as an antihistamine.  As a GI med, it capitalizes on the appetite stimulant side effect, and for some reason some kids stop vomiting.  If you're the parent of a cardiac patient and your child has GI issues, run to your cardiologist and ask to try this medicine!  I can't say enough good things about it...truly I could go on forever here...but I won't because you might start to think I've lost it.  ;)

The GI-related hospitalization happened to coincide with the cath procedure we've had on the books forever, in preparation for his next surgery.  The cath went amazingly well!  For the first time, he recovered without complication, and was returned to the 8th floor within 24 hours.  Wow!  It was amazing, and we're told we owe it to no longer having obstructed pulmonary veins....we'll take it!  The results from the cath were equally amazing, as the pressures and resistance indicate he is ready for his next surgery.  Thank you God!

Speaking of his next surgery-it's next Thursday, August 2nd, at 7:30 AM!  Yikes, it's just around the corner.  My feelings are all over the place on this one.  On the one hand, I'm terrified for the obvious reasons:  it's our precious son having open-heart surgery again, Dr. Forbess has a lot of work to do, and this time nothing can wait!  On the other hand, Kaleb is soooo ready for this surgery...and so are mommy and daddy! The best part of having this surgery will be finally being on the other side of it! 

Last time, our incredible surgeon was able to fix the pulmonary veins, with minimal time on the bypass(very little time with his heart stopped), and strategically preserved the coronary stents in lieu of a BT shunt.  This time, he must remove the coronary stents and attach the SVCs to the pulmonary artery.  This procedure is called a bi-lateral, bi-directional Glenn.  All this work on a heart the size of Kaleb's fist. No problem, right?!  As Dr. Nugent says, "It's okay, he wears the goggles."  I have to admit, I've become sentimentally attached to those cardiac stents.  After all, they've kept him alive since he was 9 days old, and have made a surgical repair of his anatomy a reality instead of just a beautiful dream.  They introduced us to Dr. Nugent, whom we will always consider more a member of our family than just his cardiologist.  And believe it or not, Karl wants Dr. Forbess to save the stents for us.  Of course, he just wants to see them.  I want to keep them as a reminder of how everything started, and how blessed we are every day that we're together from here.

We are all looking forward to this next chapter in our lives with Kaleb.  With this surgery, we graduate from Children's Safe at Home program.  I don't know what we'll do when we can't call Kim and Joy for advice on anything from getting donor milk from the milk bank all the way to his constant vomiting and weight-loss issues.  What will we do with ourselves not having to weigh Kaleb every day, spot-check his oxygen, and record every feeding in our log?  Hmmm...let me think about this one for a minute. ;)  And yet, there's a bitter sweetness to our graduation.  Without this program, Kaleb wouldn't know what it's like to be home!  We're so thankful for this program, we're researching ways to help them keep it going long after we're finished.  But that's a blog post for another time...

Please keep Kaleb in your prayers this week, especially for the surgery and recovery.  If you have a Kaleb shirt, please wear it again Thursday.  We are so sorry we didn't order more shirts, by the way.  So many people have been interested since we placed the original order back in March, and we wish there was time to place another one.  If you don't have a Kaleb shirt, wear something green or with frogs!  Please post pictures of yourselves wearing the shirts on Facebook, or email them to me at shoopmaj@earthlink.net please!  The support we've received from all of you that follow us through family members, friends, Prince of Peace, WRA/Rockbrook, Facebook, this blog, or however you've found us is incredible.  When Kaleb recovers from this surgery, we can't wait to introduce everyone to him.  We are so close, we can taste it!  Thank you, thank you, thank you!  Enjoy the pics!

One day, one hour, one minute at a time,
Jenifer

With Yuki showing off the canvas letters of his name for his bedroom!

Cooling his emerging tooth on Mimi's drink!

The best of a bunch of not-so-great shots of the tooth and a half!

Mommy loves my Elmo jammies best!

I love to play my piano with my hands or my feet!

 Mommy's Butterfinger and Daddy's Oreo blizzards were delicious!

 Mama's 1st Instagram Pic of me sweetly sleeping!

One Down, Two To Go

Wow!  Time sure flies when you're finally home! The last time I posted, Kaleb was a very sick baby.  The pain team finally met with us, and for 2 days, we really thought we had the answer.  He was on a pretty amazing medicine regimen:  Tylenol, Ibuprofen, Lortab, Morphine, Atavan, and a couple of others I can't even remember now.  Our wonderful nurse at the time, Liz, wrote all his meds on the marker board, and I really wish I had taken a picture of it.  He was on at least 1 med per hour, and some hours several.  But the important thing is he finally stopped screaming.
It's an amazing thing when your child is in as much pain as Kaleb was that weekend.  Time seems to stop and all you want is to figure out what's wrong and make it better...whatever it takes.  Unfortunately, his belly continued to grow, and his breathing was becoming quite labored.  When we found blood in his diaper, they sent us back to the ICU.  That was a first, and it was pretty scary.  When our fabulous nurse Marianne came in with the Charge Nurse and the Resident in charge for the night, we knew it was bad.  We've never packed so quickly or looked so forward to getting Kaleb to the ICU to figure out what was wrong with him. 
When we got downstairs, things moved really quickly.  Dr. Clay, Casey, Scarlett, and so many others were drawing labs, hooking Kaleb to the monitors, asking/answering questions, and reassuring us as soon as they could that Kaleb was going to be okay.  What had taken days to communicate while we were upstairs, was understood and acted upon within hours in the ICU.  The scariest possibilities were eliminated fairly quickly, but it was a long night.  The next morning, everybody's favorite Cardiologist(okay ours!) Dr. Nugent, was on in the ICU and that was the turning point for Kaleb.  The first thing he did was remove all the pain meds.  Somehow, he could tell by the way Kaleb was breathing that he was over-saturated.  He adjusted Kaleb's oxygen, and the combination was exactly what he needed.  Kaleb started improving immediately, and within 2 days, they were moving us back upstairs.  For the record, Dr. Nugent is AWESOME!!
When we got back upstairs, Dr. Mahoney was on service and we love her.  She has helped us with so much, and this time was no different.  At this point, the only things we needed to have under control were Kaleb's belly and his feedings.  As a result of all of the narcotics, his precious belly was so bloated, his innie was a very strange outie.  It took time, but Dr. Mahoney and her team turned him around, and we began increasing his feedings.  For the first time since he was born, the Drs let us give him straight breast milk!  Of course, this meant giving him a lot more milk to make up for the calories missing from the fortification. This presented a unique problem for us, or rather for me.  I've been pumping 5 times a day, taking as many herbs/meds as possible, drinking like a camel, sleeping all the time(ha! ha! ha!)...you name a tip/trick to produce milk and I've probably tried it!  My max production is 25 ounces a day, though, and I was panicked it wouldn't be enough.  I was sure gonna keep giving it my best though!
The best news about taking him off the fortifier(aka formula) was that he stopped spitting up!  Before the surgery he was spitting up 10+ times, so we were really worried about how we'd adjust to life without all the spit-up---KIDDING!  It was awesome!  Kaleb was able to sleep in a BED for the first time, and he started learning how to roll since he finally had the opportunity to be flat. We were having so much fun with all of the new things we could do with him and how great he was feeling, and we were still in the hospital. 
When his feedings were under control, we started weaning him from the oxygen flow.  He had been on room air for quite some time, which is 21% oxygen, but he really needed the flow to help keep his lungs open.   To achieve this, he had really big(for his little nostrils) nasal cannula pushing 4 liters of flow per minute.  It sounded a bit like an airplane ready for take-off, so you can just imagine what it must have felt like.  It took some time, but he did really well with the wean.  Dr. Mahoney sent me home TWICE this time, and I have to admit it was really good for me.  She was right about getting a better night's sleep outside the hospital-just don't tell her I said it!  Kaleb was really close to being able to go home and it was Mother's Day weekend.  I was just so happy he was doing well, and when we woke up Sunday morning, it felt every bit as special as if we were at home.  As we were waking up, Karl asked me if I wanted to know what my present was...a confusing question since he could obviously just hand it to me. ;)  I cautiously said yes, and he told me that we were going home that day!!!  What an amazing gift, and a surprise at that.  Way to go Kaleb, daddy, and Drs and nurses!  The second part of my gift was an amazing finger/toe painting created by my fabulously talented son and loving husband.  It's an amazing collection of colorful smears by his precious hands, and hundreds of tiny toe prints...priceless to be sure.  And the best part?  Our fabulous nurse, Sarah, videotaped the creation of my gift, and I love every second of it! Oh boy, for Father's Day I'm gonna have to bring my A game. ;)
Well, that was a little more than 3 weeks ago, and we're loving being at home.  There's so much to tell about what we've been doing since we got home, but that will have to wait for my next entry.  Kaleb is taking a nap, and mommy needs to pump and consider a shower.  Enjoy the pictures below!
One day, one hour, one minute at a time,
Jenifer

Early morning back in the ICU-Special nap w/Mimi while Mama ran for coffee

Cutie pie catching a nap w/Mama

Happy as can be during his "day with daddy"

The beginning of his love affair with cups

Our wagon ride wouldn't be complete without our giant froggy friend

Napping in style

The best 1st Mother's Day art project ever!

Watching Children's Med in our rear view on Mother's Day!

Moving on Up

Good morning everybody! Happy Sunday from the 8th Floor of Children's Medical Center. That's right! Kaleb is recovering so well physically, they kicked us out of the ICU. We are enjoying our new view, the ability to hold Kaleb a little bit easier, eat/drink in our room, and have a private bathroom. Yes! His recovery has far exceeded everyone's expectations, and mom and dad couldn't be more relieved to have the first surgery behind us without any major complications developing.

Now that his critical care is behind us, an unexpected(and unwelcome) complication has become obvious. Kaleb is experiencing withdrawal from the powerful medications used in the days following his surgery. Though we started noticing it in the ICU several days ago, it's been a bit hard to determine the cause with certainty until now. For the past 3 days, when Kaleb is awake, he's screaming and unable to be calmed in any way. This is HIGHLY unusual, as anyone who's met Kaleb knows, he's a really happy baby. We totally understand this is the first surgery. There's more pain. He's been weighed down by IVs, all variety of cords and lines, nasal cannula in his nose from oxygen-he even acquired a pressure sore on the back of his head from being in the same position for so long. He has every reason to be upset. We were prepared for many hours of crying. We have been shocked by the hours of relentless screaming that end with medication or passing out from sheer exhaustion. As you can imagine, Karl and I are doing the best we can, and mentally/physically exhausted from having to watch him go through this. Thankfully, we are meeting with a Pain Team today, that will assess his current condition, and create a plan for his recovery. Whatever the plan, we pray it starts helping soon!


Thank you for all the prayers, well wishes, emails/facebook messages, and visits! We are so blessed to have such wonderful friends and family. There is much more to post, but no time now. There's a sweet boy to comfort!

One day, one hour, one minute at a time,
Jenifer

Early post-op family picture

Recovering from open-heart surgery, he can still rock a faux-hawk!

Finally allowed to have a "bath", this shampoo-filled shower cap was soothing

Sleeping peacefully with his Bunny Lovey

Sometimes all you can do is tell him how much you love him...

Wednesday update

Everyone is doing great. Kaleb has had some pain to manage but cardiac wise he his making A+'s!!!!

Looks like our next surgery will be in a couple months instead of a couple of weeks. We're all happy about that! Right now it's possible that we could be home by this time next week.

All in all a very text book recovery. Jenifer is finally able to hold the boy!!! See how precious the moment is below!

T-Shirt Support

Want to re-post all the pictures of people wearing their shirts to support Kaleb. We are soo blessed to know so many wonderful people!!!
Karl

48hrs post surgery.

Our little man is doing extremely well! He is slowly starting to wake up. About an hour ago he really noticed our voices. It's hard to not talk to him, but we need to keep it low key so he can rest. Jenifer and I are outside enjoying the water feature while grandpa and nana watch the boy. It is nice to finally feel sun on the skin and get outside for a little bit.

As promised some detail information about what was all done and our future plans. There were two procedures that Forbess was planning on doing and those were the shunt and fix the pulmonary veins. The pulmonary veins all come together behind the heart and then go to another vein as one big vein. Forbess disconnected the big vein and connected that into the heart. The area where the big vein connected to the other vein was were the obstruction was. That should be removed now. Could grow back at the heart, but its not in our conversations. The shunt was the other procedure that was not done. In short when you go on bypass they have to clamp the stents to prevent blood from going into the lungs. Well if you clamp a stent, what happens? You break them, so that is why we were going to have to install the shunt. The stents are our shunt right now. Kinda ironic that due to a surgical procedure we were going to have to install something we already had. Well, that was not the case. Forbess was able to clamp between the stents and the lungs and keep the stents. Therefore very little time on heart lung bypass. Pretty special that Forbess made that decision on the fly when he got in there. 76 minutes total bypass time and his heart was stopped for 23 minutes.

So what's next? Now that Forbess got a good look inside it has been determined that we're not a good candidate for the 4 chamber heart. We'll have a 2 chamber heart. That is the circular system that I've explained and not the figure 8 circulatory system we have. There is still a chance we could have a 1.5 ventricle heart. I've never really explained this and judging on Forbess's mannerisms it's probably not going to happen, so no need to confuse everyone.. :). Therefore, our next heart procedure will be the Glenn.

When will we have the Glenn, I'm glad you asked.. :). Again, because Forbess was able to actually look into his heart he realized the veins were big enough now to do the Glenn. Where normally in Kaleb's case, he would need to be 8kg. He's 6.5 now which is about a 4.5lb difference. So it would be better to do the surgery now then later because there would be less scare tissue at his chest and Kaleb would not be at a high risk of infection. After the Glenn we would not be on the save at home program anymore and can take Kaleb with us to the store, restaurant, see family members, etc. no more quarantine. As usual there are steps to get there and that is where we are.

Kaleb needs to get stable enough to go back to the cath lab. They're talking that that would be next week. Amazing right!!! Currently we still have a breathing tube in and a drain line in his chest. We're looking like the other drain line will come out tonight or tomorrow and breathing tube out Sunday or Monday. So really not out of the question to go back to the cath lab at the end of next week. So the reason to go back to the cath lab is to check his pulmonary pressures. As you may remember prior to this surgery Kaleb's pressures were really high, about 200% more high than should. Everyone is hoping that by fixing the pulmonary veins (and obstruction) these pressures will decrease. Therefore, if the pressures are low enough we'll have surgery in two to three weeks. If the pressures are still to high, then Nugent will enlarge the stents or we'll let Kaleb grow and get bigger. Now, his oxygen levels play hand in hand with the pulmonary pressures. To high we wait, to low we go for the Glenn, etc. So we're in a waiting game at the moment. But in short we will have his next heart surgery in the next 3-6 weeks or 2-4 months pending his pulmonary pressures. And just to be thorough, his next surgery after the Glenn will be the Fontain when he's 3ish....

That's our life for the rest of this year. Yes we will have some GI surgeries soon as well, but everything is looking so so positive right now. We can't thank everyone enough for all the prayers and thoughts. We also revived a lot of pictures of people waring the shirts to support Kaleb. I'm hoping I can post all the pictures below. If not I'll have to do it later.
Karl