New heart, New beginnings!

I can't express enough how thankful I am to be on the other side of Dex's surgery.  Aside from some sleeping issues (that are getting better, day by day), he is just an amazing baby.  I never imagined that his recovery would be so quick, so seamless.  When I look back on the last 6 months, there were some hard days.  Hard weeks.  Sleepless nights.  But all I really see now is just a road filled with fun -- exploring first foods (see below!), crawling, walking, TALKING!  Agh, I can't wait for it all.  Now that we have this major hump behind us, we can just concentrate on the JOY that this baby brings us.  And man, does he BRING IT!

Dex has kind of monopolized the blog lately (for good reason) but I can't forget to praise his big brother and big sister.  They have been amazing big siblings and are conquering milestones of their own everyday!  They just started 2nd and 4th grades and they were SO excited to go back to school (that will be the case every year in the future, RIGHT?!)  It was so sweet to see them reunite with their friends and get excited about school again.  I don't love the early mornings (although Dex had that covered anyway) and the upcoming homework, but I do love that we are back in some sort of routine.  And FALL SPORTS are coming!  YAY!  Jacob will be playing baseball and football again.  Maddie will be playing soccer.

Cheers to a great school year!!

He seriously loves eating his feet

First time sitting like a big boy in the grocery cart!

Jake and Maddie's first day of school.  Jacob gets to wear red polos this year (this is a big deal) and he is now in the "big kids" building with the middle schoolers!

Dex is SO MUCH better in the car!  yay!

He really did NOT know what to think about his taste of his first food (peas!)

 

He LOVES his bouncy seat!

 

We're Home!

We were discharged from the hospital on Saturday, August 6th.  We stayed in Houston for the week until our follow up appointment at the hospital on Friday, August 12th.  I haven't written anything from last week mostly because it was LONG and exhausting.  Ever since Friday night, August 5th, Dex's night sleep has taken a major turn for the worse.  He's up 7-8 times a night and will not go back down unless he has a bottle in his mouth. It has made for very long, tiring days and we were just trying to muscle through it. 

At his follow up appointment yesterday, he got a clean bill of health and we got our ticket home.  It's really astounding how well he has done (aside from the sleep regression) since his surgery.  They finally took the steri-strips off along with the last couple of stitches.  His incision scar really looks amazing so far and I just know in a few years it will be hardly noticeable.  His heart sounds perfect - no more murmur - and he's been back to his smiling, giggly self for over a week.  If we could just get him to sleep at night!!  There are plenty of restrictions for the next 6 weeks while he heals.  We can't pick him up under the arms (we have to scoop him whenever we lift him) and he can't do tummy time.  His development may be a bit delayed because of it, but I know he'll catch up in no time.  I can't wait for what is to come -- starting solids, sitting up, crawling and more! 

We finally got back to Austin yesterday afternoon and I couldn't have been more excited to be here.  Being gone for 2 weeks under such stressful circumstances really does take it's toll on you.  Big thanks to Grandpa for allowing all of us to crash at his house (I know he was ready for us all to leave!) and big thanks to Nanny and Papa for making the trek to Houston with Jake and Maddie and helping entertain them all week.  It really does take a village -- and we are blessed to have the best grandparents EVER!  It's so nice to be home and starting back on our routine -- just in time for school to start in a week!

I am so, so thankful that there were no complications and that he is doing so well.  Being in a hospital surrounded by families with sick children puts things into perspective, and I know we were one of the lucky ones.  I am counting our blessings.  There is such an immense relief that I feel now that we have this huge obstacle behind us. 

Check out our little champ's progress from Day 1 of surgery.  These videos may be a little graphic but I want him to see one day what an amazing little fighter he is!

8/2/16:  Day of surgery - in ICU

8/3/16: Day after surgery - in ICU

8/4/16: 2 Days after surgery

 

8/12/16:  Follow up appointment!

Surgery Update - Day 4

Now that Dex is no longer in the ICU, Mark and I can stay with him at night.  We originally thought we would take turns spending the night with him but we both wanted to stay last night.  The night went well except all of our sleep was interrupted every couple of hours with vitals and meds and feeds.  They wanted us feeding him every 3 hours (on the dot) as if he were a newborn again.  Since we've all been sleeping much longer stretches than that recently, this was hard to do!  I actually woke up at 3:30 am with the nurse in my face saying "Did you feed him at 3 am for his scheduled feeding?!"  CRAP.  No, because I was fast asleep and so was he!  Thank goodness we don't have to do that anymore.  They have "liberalized" his feeds which means we can feed him as much as we want, when we want now.  So, we will hopefully go back to his regular schedule.

This morning the goal was to get his Echo, EKG and chest xray done as soon as possible.  Echos are becoming my least favorite thing in the world.  It's basically an ultrasound of the heart and you have to keep your 5 month old still, flat on his back, while someone sticks a wet probe deep into his chest where he just had open heart surgery!  NOT.  FUN.  We muscled through it and we ended up getting all 3 tests done before 10 am.

The Doctors did rounds around 12:30.  We sat outside his room looking at all of the images from the day and phrases like "perfect repair", "he's doing amazing" and "what a strong kid" came out of the Doctor's mouth.  They could not have been more pleased with how he was doing and we were so grateful!  He even talked about being discharged today (it would have been a stretch) but we didn't push it and told them we didn't mind staying another night. A few minutes after they came by, the charge nurse came in and told us they were moving us to a different floor (no longer a cardiac floor) because a child was moving out of the ICU and they were short beds on the cardiac floor.  We were told later that basically Dex was the healthiest kid on the floor which is why we were booted.  I'll TAKE IT!

Nanny and Papa were amazing and drove the kids from Austin to Houston today so we finally got to see them!  I swear they grew 5 inches in the week we've been gone.  I love how happy they were to see us and and how sweet they were with Dex.  I can't thank Nanny and Papa enough for letting us get through this week without having to worry about Jake and Maddie -- all the while knowing they were in the BEST hands.  Thank you Nanny and Papa!!

Now here we are resting on the 14th floor in a regular room where the nurses only check in on us every 4 hours and basically just take vitals and let us go about our business.  In the morning, we hope they will remove his chest tube bandage, remove the IV port and let us GO HOME!  Well, home to Grandpas house for the time being.  We have to remain local until next Friday when we come back for our follow up visit.  Then we can go home to Austin!

Spending the last 5 days in a children's hospital has been humbling.  While walking through the hospital today, there was a bake sale benefiting children with glioblastoma.  The parents were there selling their home baked goods while the pictures of their children were displayed proudly on the tables.  My heart ached.  We were one of the lucky ones.  Our baby's heart could be repaired -- quickly and efficiently -- and now we never have to worry about his sweet little heart.  Now that it is repaired, he will go on to live a long, healthy life.  How these parents deal with their children fighting awful, and some times terminal, diseases is beyond my comprehension.  Tonight, I pray for all of them.  And thank the good lord above that Dex is lying here with a completely healed heart.

Surgery Update - Day 3

We arrived at the hospital around 8 am on Thursday and it's a good thing we did because a lot happened right at that time.  Our ICU nurse said that he was NOT happy when she arrived for her 7 am shift.  So much so that they gave him pain meds and he was still screaming!  Finally, they fed him more formula and he instantly settled down (ha, that's our kid).  The Doctors did rounds shortly after we got there which we always like to see because they come by the ICU bed and all discuss your case.  It was clear that Dex was ready to move down to the regular floor but they wanted him in the "step down" unit because they wanted to monitor his blood pressures a bit more and the step down unit had a lower nurse to patient ratio (just so he could be more closely monitored).  As they were talking, a different ICU Doctor (from the night shift I presume), came up behind all the doctors and loudly proclaimed "This kid.  LOVES.  HIS. FOOD".  Mark and I died laughing.  Then he said "he's a man after my own heart".  When I chatted with him later he told us NOTHING was settling him down until he randomly said "hey, give me that bottle" and he instantly quieted once they gave him more food.  He was floored.  All in all, the Docs said he was doing great. They also approved him getting more feedings, 3 oz every 3 hours.  Thank goodness!!

Shortly after rounds, one of Dr. Fraser's nurses came by and she initiated them taking out all of Dex's main lines (the line in the leg and the chest tube).  She said when they took those out, we could HOLD HIM!  Finally!!  I was so excited I could barely stand it.  Taking the tubes out was painful for him and they gave him a bit of morphine to hopefully help.  As soon as he was ready, they placed him in my arms to feed him.  Amazing.  He was still a little out of it because of the morphine but of course he sucked down his bottle. :)

After all of that, we waited around for a long time until his bed was ready in the step down unit.  Finally, around 3 pm we moved.  The rest of the day was quiet.  Our new nurse monitored his blood pressure and after they did rounds later in the afternoon, they said they could take him off all of the monitors.  Now he only has 1 IV port in (which they will leave in until he's discharged just in case) and an O2 monitor on his foot (which he LOVES to play with, hence the orange socks on his feet now courtesy of the hospital).  He can move freely around his crib now!!

Each day is a step closer to going home and we just can't wait to get discharged so we can try to get back to some normal routine.  We couldn't ask for him to be doing any better -- we are so proud of our little guy!!!

This was taken before they removed the chest tube and line in the leg.

Surgery Update - Day 2

Today was a pretty uneventful day which is incredibly good in the Cardiovascular ICU world.  We got to the hospital around 7:30 am and they said he had a good night.  All day his blood pressures would rise when he was awake, usually because he was hungry or crying.  Earlier in the day they were just giving him pedialyte and he was miserable he was so hungry.  Later we were able to give him 2 oz of formula at a time which really seemed to satisfy him.  He would usually eat and then fall back asleep.  He wasn't awake for very long stretches of time (may 15-20 minutes) and toward the end of the day he seemed to tolerate that wakefulness much better than he did earlier in the day.

We left tonight around 8:30 pm and by that time, they had completely taken him off of the blood pressure meds and he was staying within the normal ranges when he was asleep.  I hope that by tomorrow morning, they will have taken out most of his main lines so he can move around more freely.  He loves to sleep on his side so we had him propped on his left side most of the day but he is an active sleeper so he moves around a LOT and I think once he can move a bit more freely, he'll be able to get comfortable without our assistance every time.

He's really handling everything like a champ.  His oxygen levels have been good all along even though he pulled out the tubes in his nostrils early on in the day.  They just left him out because his oxygen levels were fine on their own.  He didn't have great wet diapers today so they decided to feed more and give more diuretics to help move some of the fluid out of his body.

We were really hoping for a smile today but I know that's a lot to ask.  He was definitely more focused and tracked us today which was great to see.  We really can't ask for anything more!  I pray he gets moved to a regular room tomorrow where we can all get a little more comfortable.  I also pray for those little heart warriors in the CVICU all around us.  There are so many little ones fighting...it's just heart breaking to see.

Some pics of our little warrior today...

Surgery update - Day 1

I think today has been the longest day of our lives. Seriously. Between vital checks every few hours last night, IVs, feedings, 2 of us sleeping on a twin pull out couch and more, we all got very little sleep. The day started at 5:00 am when Dex woke up and wanted to eat again. We were able to get him back down with a paci but we were also informed we had to get everything out of that room by 6:30 when they would take him to the holding room. So we rushed to get ready and pack up before they came to get him.

They arrived at 6:40 am and we walked him down to the holding room where the anesthesiologist went over everything that was going to happen. Consent forms were signed and we sat and waited. A nurse came over with a warm blanket and asked me to give him to her. Handing him off was the WORST. I wasn't even sure what to do with all of that fear and emotion. We said our goodbyes at 7:10 am and then were left to wait.

The first update came at 9:10 when the nurse told us that the anesthesia went well and that they were about to make the incision.  At 10:45, we got another update that said that he was on bypass and they were about to start repairing the hole.  At 12:15, we learned that he was off of bypass, that his heart had been restarted and that they were closing him up.  At around 2:30 pm, we were allowed to go see him in ICU.  All in all, he did great.  We left there around 9:30 pm tonight and he was still groggy from the sedation and meds.  He seemed to be in discomfort/pain at times which is very hard to watch but to expect him to not have any pain is totally unrealistic.  The only thing a little off right now is that his blood pressure is running a little bit high which they are trying to manage with the right amount of medication.

I'm off to bed.  We are physically and emotionally exhausted.  There is also a huge sense of relief.  Pure joy that the hard part is behind us, that Dex can heal now for good and that hopefully we will never have to revisit a heart issue again.  I am so thankful that we live in a day and age when defects like this CAN be repaired.  The surgeon said his hole was quite big...the size of a dime.  When you consider that his heart is merely the size of strawberry, that's pretty significant.  Thank God it was repairable.

Thank you to everyone reading this and praying for us today.  We are not out of the woods yet, but we sure are on our way.  XOXOXO

At 5 am, playing with his favorite hippo.

In his new hospital gown, waiting to be taken to surgery

One last look at his chest before surgery

In the holding area before the anesthesiologist took him back to surgery

Out of surgery!  In the ICU.

Lots and lots of wires and tubes :(

This is after he was extubated (when they took the tubes out of his throat/esophagus)

Surgery pre-op

It's Monday, August 1st and we have spent the last 2 days hanging out with Grandpa, John and Misty and we even got to have lunch with my friend Tara. Mark donated blood on Saturday when we got to Houston so we are praying the blood gets to where it needs to go.

Dex was an absolute angel during the car ride down to Houston on Saturday which was incredibly shocking given our car ride 2 months ago when we came down to meet the surgeon!  He only slept about 30 minutes in total but just hung out happily the rest of the time.  What a difference 2 months make!

We knew we had to be at the hospital for pre-op today but we were never informed as to when.  I had been emailing and calling our nurse last week and never got a response.  So, we decided to call the hospital first thing this morning.  I called a different nurses line and she said "you were supposed to be here at 8 am".  It was 8:15 am and we were an hour away from the hospital. Frustrating to say the least. Luckily, they didn't seem too bothered by it and we arrived at the hospital at 9:30 am.

It has been an uneventful day really.  When we checked in, they sent us straight to pathology where they were to do some blood tests.  This poor baby.  She had to stick him in both arms to get the blood she needed and he was NOT happy.  It all seemed to take a very, very long time.  We then went back to the main floor and waited in a room for the next 3 hours while people came in and out.  Nurses, guest services, social worker, heart tissue donation person (seriously) and more.  We were pretty hopeful that we would be able to stay in a hotel tonight and bring him back early in the morning for surgery but they ended up admitting us.  Since about 3 pm, we've been in our own room (with a metal cage-like crib).  They have also decided that they will put in an IV tonight to give him fluids throughout the night but the nurses already tried once to get it in and couldn't.  Lots of screaming ensued and I think my own blood pressure went through the roof.  He can have breast milk up until 3 am but nothing after that.  Definitely planning to set an alarm right at that time to wait until the longest possible second to feed him before surgery. 

All in all though, Dex has been an absolute dream.  He hasn't fussed much and has just been an alert, curious baby.  He's been smiling up a storm and taking it all in.  We just put him down for the night and are just praying he (and us) get a decent night sleep.  I know Mark and I will be restless.

Surgery is at 7:30 am.  They plan to get started with everything at 6:30 am.  Surgery should be between 4-6 hours and they will give us updates about every hour to hour and a half.  Once out of surgery, he will be in ICU for a couple of days until he's moved back to this floor (the floor we are on now) to a private room where we can stay with him again around the clock.

I know there are so many people praying for him and us.  We are so grateful for that.  I have loved getting all of your texts and voicemails and it settles my heart a bit to know that all of the people we love so much are supporting us through this.  All we can do now is pray.  Pray that all goes smoothly tomorrow and that this time tomorrow night, Dex will have a healthy, healed heart.

Love to everyone.

Happy baby in the car!

More happy baby in the car!

Sleepy baby in the car! (you can tell I'm excited about all of the recent car success) :)

Waiting to have blood drawn

This is how all of his naps were today

Getting his EKG done

Sweet, happy baby

The cage/crib

Big, BIG smiles

The nurses trying to get an IV in.  Unsuccessfully.

Playing with his favorite hippo.

Always playing with his feet these days.