Echo results

     Caleb's been satting low for the last few days.  His baseline has dropped to around 71 and he dips into the 60's.  They did an echo yesterday to try to determine the cause of his dips; however, it didn't show any reason.  He may just be growing towards his Glenn surgery.  The echo showed his heart function is still depressed- no change for the better or worse.  His shunt was slightly narrowed.  They are not changing any medicines.  He was started on .1 L oxygen early this morning to keep his saturation within range.
     He did really good during his physical therapy session yesterday.  He tolerated tummy time and didn't get upset immediately.  Last night, he was very happy and observant for a good while.  He enjoyed looking at a toy aquarium and following the bubbles and fish move.  It is on the right side of his crib to try to encourage him to stretch the muscles in that side of his neck (he prefers to lay to the left).  He also enjoyed looking at a book.  He can't wait for his sister and brothers to read to him!  Today I got to walk him outside.  It was a gorgeous day.  He just closed his eyes and "sunbathed" in the shade.  We didn't get to stay out long, though, because his monitors weren't picking up on the floor from the corner of shade we were trying to stay in.

2nd Seizure

     The cardiologist started the medicine Digoxin yesterday to help the squeeze of Caleb's heart and potentially reduce his desatts.  Today, he has been sitting in the low 70's, dropping into the 60's.  So far, no improvement.  They are doing an echocardiogram tomorrow.
     Last night, Caleb had an absence seizure.  I was holding him and the nurse was checking his vitals and he starting staring.  It seemed to last for about a minute.  His body didn't move and he just looked lost.  After he came to, he was pretty tired.  The neorologist said that adults have the same type of seizure; however, children can have different kinds (which he now has had both grand mal and petit mal).  He has been on Keppra since his 1st seizure; however, she said that he has more than likely outgrown his dosage.  They started an EEG this afternoon to monitor his activity for 24 hours.  He has been very agitated with the heavy head.

   

Cooper's First Swim Meet

Cooper did awesome in his first swim meet yesterday.  His first event was the 25 meter freestyle.  He didn't realize he had to wait for the horn and fell in, scraping his foot, at the sound of the whistle.  We were very proud (and surprised) that he climbed out, got back in position, and jumped in when the horn sounded.  He swam with amazing form.  He stopped when he was almost to the finish to say that his foot hurt, but his coach stood at the finish line and coaxed him in.  He got 9th place.  He competed in the 25 m backstroke but was disqualified because he turned over to see how much further he had when he was almost at the end.  His last event was the 25 m freestyle relay.  He was supposed to go 2nd for his team, but got anxious after watching his teammate swim towards him and decided he didn't want to participate.  With quick thinking from Dad, he suggested they switch order and send the other teammate to buy more time to work on Cooper.  With a little bribery, he jumped in and completed the race, which his team received 1st place!

Broken Bone

Another first, one that I'm surprised hasn't already happened; however, shocked that Kate was the one that it happened to before the others.  A broken bone!  As the story unfolded to me and the doctor, they had stacked the couch pillows super high and were jumping off them and onto a bean bag.  The bean bag mysteriously got pulled out from under her-  by brother- and she landed on her wrist (not that it would've made for much safer of a landing).  She has a buckle fracture in her radius bone (wrist).  Her light blue cast is waterproof, so she should be able to continue her normal activities after a little bit of extra TLC.

I was hoping we'd get a "break", just not this kind of break!!

The healing process of a broken bone

11 Year Anniversary

Happy 11 Year Anniversary to us!  So thankful to God for the most amazing husband.  Although we aren't getting to spend our anniversary together going out to eat or on some getaway (or even together), I wouldn't change it for the world.  Your staying at the hospital so I could spend time with our 4 other amazing children means the world to me.  I've missed them like crazy!  The kids and I had the best time looking through photo albums and scrapbooks from our wedding festivities tonight.  We laughed at how young everyone looked, how funny people's makeup and hairstyles were, and they asked quite a few silly questions.  I just loved to look at the pictures and then look at the kids' faces and see that God had this whole plan when he put the two of us together.
This year, all celebrations are just a bit different.  But that's okay.  We have the rest of our lives to celebrate being together!

Zack wrote the sweetest message to me.  I'm copying it in here for posterity.

11 years = 4015 days = 96,360 hours = 5.78 million minutes! That is a long time to do anything. In that time I have had the chance to be married to a great lady who has endured 4 moves, 5 kids, 2 heart surgeries and counting, and loads of laughs and cries and there is no one else that I would have wanted to do it with. Although we often approach things different and have drastically different ideas, we seem to compliment each other perfectly. Over the past 2.5 months, I have gotten a chance to see what she does for me and our family on a day-to-day basis and I definitely can't go "full-steam" like her. I am so blessed to be married to a great person, mother, and life partner. I love you and Happy Anniversary! Although we are rarely together in person these days, you are always with me in my heart! — feeling great.

Milk Protein Allergy

All exams, bloodwork, and X-rays came back negative for NEC.  The doctors now suspect that Caleb has a milk protein allergy.  This is because it is too much work for his body to break down the milk protein.  Yesterday he was able to start feeds again; however, he can not have breastmilk nor the Nutramigen that was used to fortify.  He is now on Elecare fortified to add extra calories.  This formula is broken down to the simplest of amino acids.  After his Glenn surgery, he may be able to tolerate the breast milk; however, we are not sure and we are thankful that he was able to get it for this long and pray that it helped jump start a strong immune system that he will need.
Early this morning, he had a desatting episode where he dropped to the 50's.  He was sound asleep.  There were no changes in his heart rate or appearance (didn't turn blue).  He had to be put on oxygen for a while to get him back to his baseline.  He has stayed in the appropriate range for the majority of today.  Praise God that he's in the hospital since he shows no physical signs when he desatts like this.
Zack and I switched places and he stayed up with the little guy today.  He realized that it's so challenging to get anything done, yet it is extremely boring- at the same time.  It was wonderful to me to get to have a "normal" summer day filled with swimming with the kids, picnic lunch with friends, trying to get my house back in order, as well as the kids' behavior back in line!  We had a lot of excitement when Cooper decided after Junior Flyer practice (which I had to force him to go to- stubborn child!) that he wanted to take the swim test.  I really didn't think he would be able to make it down the entire length of the pool; however, if the little guy wanted to try, I was going to think positive and encourage him.  Wouldn't you know it, but he swam the whole way, perfect freestyle stroke, and passed the first try!!!  The kids and I were SO proud (and I am secretly so glad he did it while I was with him!)  :o)

NPO- again

Caleb's oxygen saturations should stay within the range of 75-85.  His baseline is typically around 77; however, he tends to drop lower.  Monday, he did the opposite and satted high- in the mid to high 90's and even hit 100.  This went on through the night until around 5 yesterday morning, when he leveled out around the mid 80's.  They watched for wet diapers, capillary refill, and profusion, for the concern is that his shunt would have too much blood running through it and oxygenated blood woudn't go to the extremities.  They increased his enalapril medicine to help with this.  Yesterday afternoon, we noticed blood in his stools.  They have run tests and have done X-rays to try to rule out nec- Necrotizing enterocolitis.  Major concern is that the higher saturations and the stool situation are related, but clinically, he doesn't appear that they are.  It also could be from the increase of food, which over the last two days, he's been increased 10 ml per feeding, or an inability to breakdown the milk.  We will prayerfully figure it out.  Unfortunately, he is NPO- no food.  :(

Happy Father's Day

Happy Father's Day!  God has blessed our family with a Daddy that shows us what leading a Christian life means.  I love him more and more every day.  Seeing (and hearing) the kids leave the hospital with their arms around his neck and holding his hands- happy, safe, and loved- melts my heart in knowing that they have such a special relationship with him that has grown so much through this experience.
Now, enough with the sappy stuff.  Today was definitely not the relaxing Father's Day....although I really don't know that he'd have it any other way than it was!  It was wonderful for us to all be together, but the hospital is just not made for 4 extra, rambunctious kids in a room, who want to eat and rough house the whole time.  By the end of the visit, I was in tears.  I despise this situation.  I try to tell myself to be positive and grateful for so much, but it just plain stinks.  I want to be with all the kids and it's just so hard.  Tears because they leave, tears because when they are here, Zack and I are breaking sweats the whole time.  UGGH!  
Zack wanted me to add that these pics were taken after he took the three boys to Jake's tournament baseball games (2) this morning.  He said it's been a long day and is still (10:00 p.m.) working now.  Real job work that pays him.  :o)

Happy GrandFather's Day to Pippaw and Poppy!  These two grandfathers have given so much to help us.  Poppy "came out of retirement" to be Zack's personal sidekick in helping with the homefront.  He helped the kids finish out their school year, making lunches, getting them to all their extracurricular activities, laundry, chasing the boys (and even additional kids) on their gators, and squeezed in reading a book or two.  Pippaw always brings out the inner child in himself when he's around.  He's taken them fishing, built lots of paper airplanes and flown them up into the light fixture (which he and the kids have claimed as the airport), played the piano with Kate, and had many private baseball lessons with the boys.  Both grandfathers play special roles in our childrens' lives but even more importantly raised Zack and I to be the people and parents we are today.  We love you and are blessed to be your children.

We also want to say Happy GodFather's Day to Nick, Greg, Brian, Mark, and Robby.  You are incredible men and mean so much to our family.  We are honored that you are a part of our lives.

Wagon Ride

"Big" Brother Bo came and hung out with Mommy and Caleb for a bit.  He had a blast playing with superheroes and getting his fingers "stuck" over and over in the bed.  He just loves his baby Talub and can't get enough kisses and just looking at him.  We dressed him in real clothes which was super fun.  Clothes that button/ zip all the way up the front are best, I've found, to get over all the wires and cords.  We took him on a wagon ride and even got to leave the room to go to the play room.  Bo enjoyed getting lots of attention from the volunteers (reminds me of my good old days of volunteering at Baptist Hospital during high school summer vacations).  He did lots of jumping around and silly talking.  They had a water mat for Caleb to lay on that had mirrors around the sides for him to look into.  He liked the change of scenery!  We are definitely going to be adding this to our schedule that the child life specialist made for him.

Last night, Zack and I traded and he spent the night up here and I went home.  After not getting home until after 11, I was on a mission to get lots done in not much time!  Two loads of my laundry done, folded, and then to put up all the laundry Zack has stayed on top of but was piled on the counters;  dishwasher unloaded, pack up more clothes for me and Caleb, as well as a few toys for him; SNUGGLE with the kiddos- priority! (of course, one little guy ended up in the bed with me, but I was okay with that!), water plants, clip everyone's nails (Daddy has never done this duty- fearful he's going to cut them!).... and on and on!  It was wonderful to sleep in a real bed, even if only for a few hours.  Zack did great up at the hospital.  He asked lots of questions and stayed on top of Caleb's feedings, diapers, and stats.  I got back up here mid morning so he could take the boys to baseball.  That went so smooth that we're going to have to switch off more often!-  One of these times, I'd like to just sit on my couch for a bit and feel "normal"!

Staying inpatient until Glenn

Caleb's team of doctors and surgeons all met this morning to discuss his history and progress.  They reviewed his cath results, echoes, and reports and addressed the big "discharge" question.  My cardiologist came to talk with me after the conference and shared the results that it was a unanimous decision that Caleb would need to remain in the hospital until after the Glenn surgery.  I cried and cried; however, I was honestly not completely surprised.  That is the best decision and care for him.  She said that he is just so fragile and they are concerned with the function of his heart and his wall movement.  Selfishly, however, I am very sad.  I'm not sure how we will handle this as a family.  It is tearing me up.    It has already been a long time and will be a lot longer.  We will just take it one day at a time, I guess.  Right now, I'm just really wishing I could run.

On the floor

We have moved up to the floor.  He had to have a blood transfusion prior to the move due to his hematocrit count being borderline low.  He is agitated tonight and sounds "crackly".  Praying it doesn't turn into anything.---okay, after I typed this, the doctor came in to check him out.  She said it is equal in both sides of his lungs.  Not pneumonia.  The cough is from pulminary atresia related to his reduced heart function.  His lasix medicine should help with this, but dosage may need to be adjusted.

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.