Cath results

The Cath showed overall good results.  Coronary artery looked fine, which was the main concern.  All other pressures looked good as well.  He has to keep his leg, that they went up, still for four hours post-op, which has already been a challenge as he's waking, he's kicking and squirming happily!  (Surprising to me that he isn't upset.). He came off the ventilator easily.  We can restart feeds soon and get him back to his schedule.  If he continues to do well overnight, we will move to floor tomorrow.  Not sure what plans are from there.

While he was in surgery, I met Ozzie from the Sounds baseball team and two of the Minor League players.  I told them Caleb will be the first HLHS boy to play Major League ball one day!

2 Months Old

Today Caleb is 2 months old!  He was smiling and cooing all day long. He has all the nurses and doctors spoiling him rotten (& of course Mommy and Daddy)! 

The kids loved going to the movie theater downstairs for family night.  It was an exciting movie!
The echo was done this morning to determine heart function.  During rounds, the doctors said we were clear to move to the floor this afternoon.  The echo showed that Caleb's heart function is still moderately depressed.  The cardiologist said that when we do go home we'll have to be extremely vigilant in watching for the slightest change of any behavior as a sign of major concern and to get him in quickly as he won't have much wiggle room.  
Not long after rounds, we were told there was a change in plans.  The cardiologist reread the echo and was concerned with pockets in the walls of the ventricle not squeezing properly.  She wanted us to have a catheterization to look at his coronary artery.  The coronary artery comes out of the his ventricle at more of an angle instead of a curve and they want to look at this and see if it is the cause.  They are going to take him back to the Cath Lab first case tomorrow morning.  We will be in the PCICU for at least a few more days.

Venting

I miss my family, my husband and my kids.  I miss my normal, boring, wonderful life.  I'm jealous of all those going on vacations and having a typical summer.  I hate having to let go of my control.  God is teaching me a lot through this, I pray.

Snuggling

There's nothing like snuggling with a baby!  This little one will be (well, already is) super spoiled.  But he's earned it!  We don't let him cry because it puts stress on his heart, but it also tears at mine too! So he gets held a lot!  Luckily he sleeps well at night, which is our saving grace.  (Of course, he has to be woken for feeds).  

He's had a good day.  His blood pressures have been abnormally high- systolic over 100- should be in the 60's.  They are starting enalapril which will help pressures and will start weaning back on Milrinone.  He was on oxygen for most of the morning, but is on room air currently.  

My Song

Sitting and praying.  It's what we do in the PCICU.  ---Maybe I should write songs while in here!!  Ha!  Actually, Kate wrote a piano song last week.  It was beautiful words about our situation, yet almost too real to come from a child.  (Maybe living in Nashville has taught her a thing or two about country music!)

Caleb had a pic line put in this morning for access.  His IV in his head infused and has been removed.  They stopped Milrinone but have restarted it after doing an echo this afternoon.  One of his valves showed mild to moderate regurgitation which is likely related to the heart function.  Prayerfully with time and being on the Milrinone to help with the function, it will improve.

I just got an exciting text picture that Jake lost his second tooth!!!  

First Emergency Room Visit

As I looked through my blog post titles, I noticed that a few started with the word "first".  Although I know Caleb will be experiencing many firsts throughout this year of life, many I'm writing about I wish we weren't going through.  Today's first is definitely one of them!  I falsely had told myself we were going to be the exception and weren't going to be back to the hospital until the Glenn Surgery; however, that was rediculous thinking and I was proven otherwise today.  Caleb had his first trip to the Emergency Room.  He was agitated last night and harder to comfort.  His sats were a bit lower but leveled back out around midnight and he slept fine and ate pretty well.  His 6 am feed he didn't take much of; however, and had a different bm and threw up twice.  His sats were back down a bit so I called the nurse who said to start getting ready to head towards the hospital.  They dropped more and were hanging around the low 70's so she said get up there quick.  As we turned into the hospital he started getting agitated again and didn't settle down for a while.  They tried over and over but couldn't get an IV line in him and had to put it in the side of his precious little head.  His sats actually went up into the low 80's when he was mad, but dropped quite low - 60's- when he settled down.  We've been admitted to the PCICU.  They've tried to get a pic line but couldn't because of the difficult way his artery sits in front of the vein.  (I think I got that correct).  An echo was administered and it showed lower heart function and he also had a very high lactate.  They've stopped his feeds, given him fluids, and started Milrinone  (which will help with heart function).  Prayers he levels out quickly and he gets comfortable.

First Home Run!

We had a big weekend!  Jake hit his first out of the park home run on Saturday.  I stayed home with Caleb and was so sad to not see it.  He was funny when he called to tell me.  He was all sly and nonchalant about it.   He had his last game with the Phillies on Sunday.  I was not going to miss this one, so Caleb and I chilled in the car in outfield to watch.  Wouldn't you know it, he hit another home run!  This one was even further and with more power-- and we got it on film  (Thanks Darci)!!  I must say, it was quite a proud Momma moment.  It was extra special that Cooper was on second base and was one of the first to high five him crossing home plate.
Kate and Jake had their first swim meet of the season yesterday.  They did super and earned lots of ribbons.  We love that they participate.  It is such incredible exercise and keeps them active during the summer.  And of course, the social side of it is most important!  They have a blast with all of their friends.
Today was supposed to be our weekly clinic appointment however the cardiologist wanted to see little buddy yesterday after his eating habits were very reduced overnight and through the morning. Upon arrival, his oxygen saturation was in the upper 60's but they watched him on the monitor for a while and he leveled out around his typical 77.  Everything else looked good.  He weighed 4.5 kilos (9.9 pounds).  This was just our first experience of the worry over little changes in these kiddos.  The doctor said anytime we see anything different,  to bring him in, just as we did.  Praying this isn't often, because it is worrisome!
He's doing great at home.  He has to wear a "no-no" sock on his hand to prevent him from pulling out his ng tube.  We were able to start tummy time on Thursday.  It's important to do this ti build strength in his neck muscles which he is lacking due to being on his back in the hospital bed for so long.  So far he hasn't given much effort and simply lays his head down.  The siblings are in complete love with him.  They beg to hold him.  Kate is learning all about how to care for him.  She's assisted me with giving him medicines, gavaging his feeds, and flushing his ng lines.  Jake and Cooper are great at bringing me supplies such as syringes.  Bo is just our right hand man all the time since he won't leave "baby talab" or my side.