Christmas here we come!

I can't believe it's almost Christmas!  We've been so busy in the Prinz house, it's just come up so quickly.  This is my absolute FAVORITE time of the year, and since we were in and out of the hospital and quarantined last year, I've been out of control this year.  By out of control, I mean with wanting to have every possible Christmas experience with Kaleb, of  course!  We've acquired most of the baby Christmas pajamas available, driven to see Christmas lights, put up the most beautiful "soft ornament only" Christmas tree, attended the Richardson opening of Santa's Village, had pictures with Santa taken TWICE(and had to be stopped on the 3rd attempt), and Santa is going to be really really good to Kaleb this year!  We're just so happy he's home and doing so well this Christmas.  What more could we ask for really?

Kaleb is still in all 3 therapies 2 times a week, and he's progressing well!  We go to Baylor Our Children's House for Speech/Feeding therapy, but PT and OT come to our house through Therapy 2000.  He's scooting all over the place, can stand on his own while holding onto something, and has just started to make animal sounds.  His MOO is absolutely adorable!  The most recent great news is that he's really starting to take bites during feeding therapy.  It's amazing how proud I feel to watch his little head move towards the spoon...which he's never done before now!  He's working really hard in each therapy, and making progress every day!

Cardiac-wise, Kaleb is doing great!  He had a Cath in early November to make sure everything looked good from the surgery and no issues had developed, and he looked wonderful!  Dr. Nugent was pleased and relieved that we checked, and now he's letting us go for a while.  Woo hoo!  We now go to Cardiac Clinic once a month for a check up and he takes a Synagis(RSV) shot once a month, too.  Very soon, Kaleb will go to every 3-months check up, then every 6...it's awesome!  Of course, there's still one more open-heart surgery in his future, but we're told it's a couple of years away.  That's fine by me!!

Right now, we're preparing for our first big trip with Kaleb!  We're spending Christmas with Karl's family in Houston, and I'm starting to freak out a little bit.  I made a list of everything we need a couple of weeks ago, and have been planning in my head forever, but it's now time to get ready to go....AAAh!  It didn't take us long to figure out that our cars are too small to take our small army of supplies, and thankfully my parents are letting us use their SUV.  Between Kaleb's medical supplies, my pumping supplies, and Christmas gifts, there's not going to be much room in the car for us!  But we really are looking forward to being there.  Kaleb has never met his cousins, Jacob and Samantha or his Uncle John, and he's only spent a couple of hours with his Aunt Jenna, so we're really looking forward to being with them on the holiday.  I'll have to let you all know how it goes when we get back.  Wish us luck!

Have a wonderful Christmas and a Happy New Year everybody! 
One day, one hour, one minute at a time,
Jenifer



Children's Medical Center Holiday Parade

 

 



20 minutes into the parade--he was out!

 

 



Richardson Santa's Village Rudolph's house

 

Another cute pic from Santa's Village

 

 

1st pic with Santa!

 

 

 



 

A favorite from November!  Love him in a pumpkin!

 

1 year pictures--more like 14 months!

 

Super Kaleb and his "super" family for Halloween

 

 

Our little "Fly Boy" w/flipper slippers

Recovered and on His Way!

It's amazing how fast time flies!  It's been almost a month since Kaleb had his LADDs/G Tube procedure, and we're pretty well settled back into our groove...our new groove, I suppose.  What is that exactly?  Well, it's pretty busy and absolutely AMAZING!  Many moons ago, when this whole adventure started, we dreamed of a day when we would flip the switch from "Survival" to "Thrival"(okay I know I made up that word...but it really fits!) And flip the switch we have!  Our new life consists of  therapies 4 days a week, day/night nursing help, maintenance appointments, and all kinds of fun with Mama and Dada(or BaBa as Kaleb says) in between! 

Kaleb's getting Speech, Occupational, and Physical Therapies through Therapy 2000, and he loves his therapists....most of the time anyway.  It's amazing how much he's improved in all areas since we really focused on regular in-home therapy around the end of August.  Speech Therapy is mostly feeding therapy for him, and he's WAY behind in this area.  He is still entirely tube-fed, and right now he's still being fed continuously.  The good news is it's now a G-tube instead of the NG, and the difference is unbelievable!  No more gagging randomly that leads to vomiting or yanking out the tube several times a day.  Also, in another month we'll return to Dr. Megison's office and he'll convert it to a G button...that will be even better. (we hear)  We're working with our fabulous therapist, Chessa, to get him interested in food, and he's finally getting Vitalstim!  Vitalstim is definitely a subject for another post, because I could go on and on about what it is, how long I've been lobbying for it for Kaleb, and how effective it was for Kaleb's cousin Noah...if you know our family history, you know Kaleb's cousin Noah had a stroke in utero and had major feeding issues in the beginning as well.  Vitalstim was a HUGE part of his recovery and eventual ability to eat just about anything he wants as a healthy happy 2 1/2 year old.  But like I said, a story for another time.  We've been working in Occupational Therapy with our wonderful therapist, Haley, on fine motor skills.  Believe it or not, he's better at these activities than anything else.  We work on hitting things together, putting objects into other things/taking them out, stacking, etc.  He's made amazing progress in this area.  Our Physical Therapist, Amanda, is awesome, but we are pretty behind here too.  We are really focusing on encouraging Kaleb to crawl...right now he is a champion bottom-scooter.  He has made amazing progress here, but we have a long way to go before we're cruisin' the Prinz casa....which is probably a good thing since "Operation Get Our House Baby-Proofed" hasn't exactly happened yet.  Soon, we keep saying, soon enough.

Kaleb had a Cardiology appointment last week, and Dr. Nugent is thrilled with how well he's doing from a Cardiac standpoint. He scheduled Kaleb for a Cath November 6th to make sure all the surgical repairs still look good, but after that we've been told to expect a couple of YEARS before his next major procedure. Did I just say YEARS?! Yes, I did. We finally made it to part I couldn't imagine. I'm so in awe of the idea of a regular life with Kaleb, I don't even know what to say...except that I'm extraordinarily grateful and blessed!

You've probably noticed in his recent pictures...especially if we're Facebook friends...Kaleb has a helmet now. All that time spent on his back and the terrible reflux that prevented tummy time created quite a case of brachycephaly/plagiocephaly and so a helmeting we will go! He's done amazingly well adjusting to wearing it 23 out of 24 hours of the day, considering he absolutely hated hats before this. Hopefully, treatment will be finished by Christmas. Until then, he'll be rockin' the helmet so hard every kid will want one! ;)

 The strangest thing we've started since returning home from his heart surgery is in-home nursing care.  We finally qualified for a "Medically Dependent Children's" program that provides respite care for parents of critically ill children, and the idea of it is amazing.  The reality of it has been really hard.  For Kaleb's entire life, he's had mommy, daddy, and Mimi most days, and not a lot of interaction with other people.  Home is his safe place, and now Tuesday/Wednesday/Thursday during the days and Monday/Thursday at night two virtual strangers come to help take care of him.  The days have been the biggest adjustment for both of us.  We have gotten used to our routine, and let's be honest....we like it!  Now we have this really nice lady with us all day 3 days a week.  I can't even believe I'm considering complaining because we've needed help for so long, but it's a bit much at the moment.  A huge part of the problem is Kaleb is terrified when he can't see me.  Any time I leave his line of sight, at any point of the day(even to use the restroom for 1 minute) he starts screaming and won't stop until I return and pick him up.  Some days he cries when I'm not holding him....all day.  It's not exactly what I had in mind for respite care, but I can understand why he's not comfortable.  He's spent an incredible amount of time in the hospital, and he's learned who he can trust...and then there's everybody else.  I keep telling myself it's just going to take a while to adjust, but it's been almost 3 weeks with very little change.  Until then, I nap on the floor next to him, and she takes him for a walk a couple of times a day so I can shower and get a little break.  The nights are easier because he very rarely wakes up anymore.  I sleep well knowing that his feedings and diaper changes are taken care of, wake up once to pump, and hope he keeps sleeping. ;)  Hopefully the next time I update the blog, this will be much better!

Coming up, a trip to the Arboretum for pumpkin pictures, a day at the Flower Mound Pumpkin Patch, picking our pumpkins with mommy and daddy, and Halloween.  So much October fun to be had, we can't wait!  God is great....life is really good.

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

 

Our 1st play date with cousins Avy and Noah!!

 

 

 Lunch with daddy at his office

 

Skunk hat from PawPaw

 

 

 Play date with Landry and Makenzie-I promise he started with pants!



 

Shopping with Mama and Nurse Patricia-he loves straws!

Driving his car in the nice weather!

 



Post LADDs

Kaleb had a rough afternoon and a semi decent night. It's always tough trying to figure out the right pain and agitation medicine. He had a couple really bad episodes yesterday's but I think we're done with those. (cross your fingers). Not sure if we'll get out of the ICU today but we'll see...

Recovery Begins!

Whew! What a surgery our boy had! His intestines have been re-positioned to avoid future obstruction, a plastibell circumcision performed, G-tube placed, and his appendix was removed! Right now, they are struggling to find the combination of meds to stay ahead of his pain. They've also added a liter of oxygen to assist when he desats as the pain meds begin to wear off. I'd do anything for him to feel more comfortable, but I know we're a couple of days away from that. For now, we're telling him how much we love him, singing to him, and holding onto anything not covered by an IV. Please keep Kaleb in your prayers for a complication-free, pain-controlled recovery...or as close to that as possible!
One day, one hour, one minute at a time,
Jenifer

Procedure Done

Everything is all done and all went great. He's in transition to the ICU. We'll be able to see him shortly!!

LADDs Procedure

It has been awhile since we posted but Kaleb is having general surgery today. This surgery is to fix his mal-rotated intestines. He is also getting a G-tube or G-button. This will allow us to get rid of the yellow tube in his nose. Yea!!!!! He is also getting circumcised.
Sounds like a lot but much less than open heart! We just got an update and he's doing great. He's been under about 15min now. Not quite sure how long this surgery will take. They said about an 1.5 hours. We'll keep you posted.

Kaleb also celebrated his first birthday at the end of August. We've just been enjoying going out to the grocery store and being with him that we have not focused on posting to the blog. Yes pic's and videos will be posted soon.
Dad

Happy Birthday to Kaleb!

What a great day! Family, cake, presents, and best of all- Kaleb turned 1! We're so proud of him and love him more than words can describe. Today's been a day for happy tears...and those are so much better!
Just a couple fun pics from today!
Pic 1-Mama and Kaleb sleeping a little longer!
Pic 2-Kaleb really enjoyed his cake!

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

GETTING READY TO GO HOME

It's been awhile since I've updated the blog.  If you want more day to day stuff please friend us on facebook with a subject line of blog follower. 

Kaleb is currently still in the hospital and is doing great!  He got off oxygen on Saturday and we're just trying to get his feeding undercontrol.  From a cardiology stand point I would say that we have won, or made it to the finals!  Everyone is so pleased at his recovery and process.

Once we're out of the hospital it looks like we'll have a birthday celebration and then another surgery to fix his malrotated intestines.  Once recovered we can then really see where we are from an eating standpoint.  It is the single item that he is the most behind.   More on that in a couple of entries.

Please also start freeing up your calendar around the 20th of October.  Childrens has their Red Baloon Run and Ride fundraiser event.  We are looking at creating a team and donating all the money to the Save at Home Program!  More to come!!

Thats about all the time I have.  Spent most of my lunch hour adjusting the layout... :)  us architects!
Anyway, attached are a couple photos from this past weekend. 

Enjoy!



I went to restroom, heard "clank" and walled in on this...... LOVE IT!

Showing off my 2 toothies

Using the bed as a snuggle buddy while trying to go to sleep!

I got this helmet and bumpo thing all figured out!

Drummin!

Taking an much needed nap during boys weekend!

Sunday morning

It's been a couple days since I posted. First off, the little K man is doing great great great! We moved out of the ICU on Friday and are in room 266 on the 8th floor. Our usual room ;). We seem to get this room a lot! He lost his IV on his head the first night we were on the 8th floor. Yea!

He has gotten his days and nights a little off. Friday and Saturday nights were a little rough. I also think that he was a little scared because he would wake up and not know where he was. But I do think he knows he is out if the ICU and is much happier! Again our parents are great and we got to go home for the first time yesterday! Sleeping in your own bed is sooooo nice! Jenifers parents are coming up today and we'll be going home again. Jen may take a nap but I think I'll stay up. Want to get to sleep earlier tonight because I have to go to work tomorrow. :(

One big highlight was on Friday we graduated from the "safe at home" program! Kim made us some sweated and dr nugent even helped with the delivery! Such a huge huge mile stone for us!!! No more quarantine!

As of rounds today, it looks like we will be here for at least another week. Kaleb needs to get weened off of oxygen and get off continuous feeds. We're very very use to this process and we know it can take a little time. Our goal is to be home for his one year birthday which will be the 29th of this month!

Again, thank you all for the thoughts and prayers!!

Wednesday

Last night was not as smooth as we had hoped for. Kaleb lost his IV and he's a very hard stick. Needless to say after 4 Attempts from the IV team we still did not have an IV which we really need to give medicine through. Luckily we have one of our fav nurses and she was able to get someone from NICU to come down that was good at IV's. Because kaleb was pretty much a pin cushion the only place for an IV was on the forehead. Yea it's weird and not the first time kaleb has had an IV there. Only bad thing is that they can't use any pain meds to insert the needle.

But this morning all was great because he finally got his drain lines out. It's one of those things that you still don't get use too and can't believe how much is in him. He did get some yummy pain meds but still cried through the procedure.

I can't complain about he afternoon either. The boy took a 2 hr nap in my lap! Ohhh how great that was!!!!

We still have some oxygen levels which may cause a more extended time in ICU. But his smiles make everything go away.

Tuesday update

It's been a couple of days. My last post was written over 2 days so it might have been a little confusing. Really doesn't matter. Kaleb is doing better and we're on a good road to recovery. We're still in the ICU and it doesn't look like we will be leaving for a couple more days. Kaleb still has his drain lines in and on a drug that helps his heart (do detailed to explain). Unroll we're off the drug and lines pulled out we will not be leaving ICU. I hope it's the end of the week if we keep trending in the direction we are right now.

Mom and dad are doing ok. Both of us were pretty tired today. Last night was not peaceful. Tonight looks better. The stress over the weekend is still lingering but more thrilled that kaleb is doing better! However, he has thrown up 5 times today and both mom and I do not want to go down that path again. Hopefully it's just an echo from his body trying to get use to the new flow!

Both of our parents have been a great help this trip. We love and appreciate all that you do for us! Sometimes we don't say it enough while we are here. Last night jenifer and I counted up all of our beads of courage and we have over 800 beads! Looks like we'll it the 1000 mark after this surgery.

Again we can't thank you all enough for the prayers and thoughts during these tough times. I still think to the poster jenifer showed me right after kaleb was born. "you don't know how tough you are until you have to be". It's very true and I'm glad that both jenifer and I have such living families and friends to let us lean on when it seems too tough! As jenifer would say: one second, one minute, one hour...

Post Glenn

Kaleb is doing very well! They took the breathing tube out earlier this evening. Seemed early for me but what they're saying to us is that the kids do better with it out. As most of you may know, this is the first surgery that changes the pressures in his circulation. The blood flows slower in is head then before. This is causing kaleb to be in a lot of pain, however the pain meds can slow the breathing now which is also very painful. We're in pain management mode and it looks like it will be a long night. It is very hard to watch tears flowing out of your child's eyes and there is nothing you can do about it. We've been told that it takes the body a couple days to adjust to the "passive" flow. Many of the nurses and doctors here say this is the worst of the three surgeries. So far kaleb is going in and out of pain spells. It looks like its going to be a long night for us and some shifts may be in order. Other than the pain everything else is great! Bleeding is slowing, labs are good, and oxygen levels are mid 70's. They drop below 70's during his pain spells and needs extra oxygen help. May sound a little bad but we're following the textbook right now and we may actually get some central lines out tomorrow.

Thanks again to all that have prayed and thought about kaleb today! Miracles do happen and you're all part of this one!!

Glenn surgery #6

We got to see the little one about 30 minutes ago. He looks better than great. We'll probably be able to go back to see him shortly.

Glenn surgery #5

Just got word that everything is completed and all repairs are holding. So we're basically done with surgery. Now they are in the process of clotting his blood, getting off bypass and possibly closing him up. Yea!!!! Such a success!!!! Looks like we'll get our first drive by look in about an hour or two. Dr. Forbess is such a great surgeon!

Glenn Surgery #4

Finishing one side and should start on the other side shortly. There is still a lot to do and probably a couple more hours till we get to see him. So far all is well and still moving along smoothly!

Glenn Surgery #3

All is still well. On last post I said they started. That was just cutting open and getting on heart lung bypass. so I was a little premature. Right now they are dissecting through the scare tissue and trying to re-figure everything. So all still as planned. Forbess did remove the stents already. We asked to keep them, but it looks like they will go toward research. I think we're getting a picture though! ;)

Glenn Surgery post #2

Got a call at 8:45am and they have already started the surgery. All is well and he's doing well!

Glenn Surgery

The little man went back around 7:30am. Same anesthesiologist as last time, who we requested. So far everything has gone as scheduled. They putting access lines in and getting him set up on the heart lung bypass machine. It will probably take 1-2 hours before the operation begins. And before we get an update. Thanks to all for wearing your shirts and praying for us.

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...