1.31.2010

Busy, Busy!

Sorry if you've been wondering about us....we've been great, just B-U-S-Y!

Derrick went to see Dr. Bonnett (his pediatrician) on Thursday, and Dr. Shuler (his cardiologist) on Friday. Both of them were pleased with how he looked and sounded.  Dr. Shuler said D sounds "boring" now...just a "lub-dub," no "swish-dub" anymore since the shunt is gone.  We have to go back to see him in two weeks and he will do an echo to check everything out and to have something to compare to as time goes on.  Eventually we will move to appointments every three months, which totally freaks me out!  We've NEVER  been that long without seeing him.  He said not to worry, that he would wean us down to that. :)

Dr. Bonnett removed D's last chest tube stitch on Wednesday, and he didn't even cry!  Such a big boy!  We have to go back to see Dr. Bonnett next week for a weight check because D weighs 13 lbs 11 oz now, and weighed 13 lbs 14 oz before surgery.  Of course we're all concerned about this whole no fat diet thing, so he wants to keep an eye on his weight.  I think at this point we just want to make sure he isn't losing weight.  I'm kind of doubting he's going too gain much on this little diet of his.

Heidi, D's speech therapist, came Friday.  Derrick wasn't very cooperative at all, but she gave us some good ideas of foods that aren't pure sugar to be working on, and some good recipes too.  It's tough finding something with a decent amount of calories and no fat that isn't junk or just plain gross.  Only five more weeks to go...and you better believe I'm counting down! 

The formula is going a little better.  We were really worried at first, because the day D came home he only drank 5 ounces total for the day.  He's slowly increased to a more reasonable amount.  The very minimum he needs is 20 ounces per day, and today I think he's taken about 19 ounces.  This Portagen must not hold him over as long, because he's been waking up at about 4 a.m. and eating again.   I'm ok with that...as long as he's eating, I'll get up and feed him!

He's been doing this strange tounge thing too.  Anytime something solid goes in his mouth, he chews it for a second then sticks his tongue out and lets the food fall out.  He does it when he's not eating too.  He'll just sit there with his tongue out has far as it will go.  We're not sure if it's a result of being intubated, or teething, or both.  I hope it goes away soon, whatever it is.

Over all, Derrick is pretty much back to his old self.  Surgery has not slowed him at all.  He is still attempting to crawl and pull up all the time.  We were reassured that he wouldn't hurt himself, so we're mainly trying to make sure he doesn't fall or put any pressure on his chest.  Not an easy task, let me tell you!

D gets pretty fussy at times, but doesn't appear to be having any chest pain.  There have been a few moments where we've really felt like terrible parents because we blame his fussiness on him being tired (he's NOT napping very well at all).  Poor guy...we give him his pain medicine and about twenty minutes later he's a whole new kid.  Obviously he's having "Glenn headaches."  Apparently these can happen for weeks after surgery because his body is still adjusting to the new blood flow.  Any of you with experience with this, PLEASE share!!  We hate to give him oxycodone very often, but that seems to be the only thing that helps when he's super fussy.   We're still giving some tylenol twice a day usually, and we've had to give him oxycodone once a day for the past few days.  It's SO hard that he can't tell us if he's hurting!

The "stinky face" is back with a vengeance.  This crazy kid is always making this face!  
I guess he's happy?!  I've tried to get it on video several times, but he's too smart for that, 
and will stop as soon as I start recording.

No, I'm not a huge fan of this, but Derrick has been enjoying fat free hot dogs.  
I thought he was doing such a great job eating until Justin picked him up out of his high chair, 
and we found out what he'd been doing. 
It takes serious work getting food in this kid!  I caught him handing food to the dog under his tray today.  They LOVE that he's eating real food, but that he doesn't really eat the food!!

Derrick has enjoyed being back on the computer (maybe that's why I haven't had a chance to update), 
and he loves reading all of your comments!

He's happy to be back at home with all of his toys,
and has become quite obsessed with his Funky Heart Cardiac Kid wooden nickel and his balloon from Ivan.  We think he's tried to say "balloon" a few times and he reaches for it anytime it's in sight.

D was excited get this package in the mail from Aunt Shirley the other day.  
A glow worm!  I didn't even know they still made these, but he sure does love it!
Thanks Aunt Shirley!!
D's new favorite snack is fat free fig newtons. 
He has become quite independent lately, and insists on feeding himself.
It usually ends up like this. 

We've been working on putting our house on the market (yes, again), and Derrick 
has helped with a few projects that we've done over the last few days.  We're going to look at the 
same house we looked at a few weeks after he came home from surgery the first time.  
It's still there, and still calling our name, so we'll see...keep your fingers crossed!!

D would like to thank all of you for buying tickets to the pancake breakfast 
that is quickly approaching this coming Saturday.  If you don't have your tickets, 
please email me (carolinacarters@gmail.com) so you can get yours!!! 
We're getting nervous about it!  We SO want this to be successful, so if you're in the area, please, please come to Fatz Cafe on Broad River Road Saturday morning anytime between 7:30 and 10:30 for some good grub for a great cause!  All proceeds go to MUSC for CHD research.  We would love to have a full house, so tell your friends and neighbors, and come on out!  We've been asked if Derrick will make an appearance at the breakfast, and as long as everything is well, he will come by.  If you really want to know what time that morning, I'll check his calendar and notify his driver so she can get him there, and I'll let you know. :) Lol!

To those of you at church who were going to get tickets from us today, call me, email me, or just show up!!  You can still come eat (please!!)!  And if you don't live around here, church was canceled because it's icy (and we had a couple of flurries earlier).  I know some of you northerners will get a good laugh about that, but it just doesn't do that around here, and we all stay home when it does! :)
 
Hugs to everyone!

Thank you for your continued support and prayers for Derrick.  We appreciate it A LOT!!
Please continue to keep Ruthie in your prayers too!!

1.26.2010

There's No Place Like...

HOME!!

Derrick was discharged today!  We made it home around 6:00 and it felt AMAZING to walk through the door!

Ahhh...

Derrick was just as happy to be here as we were.  You just wouldn't expect that a nine month old would care that much about being at home, but he sure does!

This is going to be a quick update, but I'll update more tomorrow.  I wanted to share a few pics and ask for a few prayers....


Please pray for Derrick to start eating.  He has done a terrible job eating and drinking anything at all over the last few days, and it is imperative that he gets enough calories to maintain his weight and so his body can heal from surgery.

The next request is for my friend Laura and her precious little Ruthie.  I asked a few nights ago that you keep Ruthie and her family in your prayers.  Ruthie was scheduled to have her Bidirectional Glenn surgery tomorrow (the surgery D just had), but instead she is having a lung biopsy.  Ruthie's pressures in her pulmonary arteries are too high to do the Glenn.  Unfortunately, Ruthie needs the surgery now, but her body is not ready for it.  The doctors have given Ruthie's parents two options:  a heart transplant or compassionate care.  Compassionate care just isn't an option.


In order for Ruthie to be able to be put on the transplant list, she has to go through a lot of testing to determine if she is even a candidate for a new heart.  One of those tests is tomorrow, her lung biopsy.  I cannot imagine the overwhelming emotions Laura and Josh and their families are going through right now.  When I read Laura's post the other day all I could do was cry.  I've been thinking about them nonstop, and praying that somehow Ruthie's pressures can come down to a safe level so she can have the Glenn.  Please, please join me in prayer for her.  Ruthie has proven to the world that she is a fighter, now she needs another fighting chance.  Please lift her and her family in prayer.  You can go by her page and check out that adorable little girl and leave her family a message.  I know they would appreciate it. 


“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” – Jeremiah 29:11

***************

Here are a few quick pics from today before we left the hospital...

D is doing his best to eat a heart healthy diet.  He's learning to read nutrition labels to make good choices, especially now since he has to follow a fat free diet.   He's still learning.


While we were packing, D was practicing his pull-ups.  Yes, he is breaking the rules, but he refuses to let another little open-heart surgery hold him back...his words, not mine.


As you see, his efforts paid off.  This was mere seconds before he decided that he had perfect balance on his knees and decided to let go of the rail.  Of course he fell right into the metal crib rail and got a nice bruise on his forehead.  He went in for heart surgery and left with a bum forehead.  We were kinda nervous that they weren't going to let us take him home after that one! :)
 

Derrick had the best nurses ever taking care of him over the past eight days.  They were so sweet and helpful, and we couldn't have asked for better.  Good nurses make hospital stays more bearable.  If any of you are reading this, thank you SO MUCH for taking such great care of our little man! 
 
This is Natalia.  She took care of D several nights and today.  We loved her and all of the other girls so much!  I wish I would have taken his pic with more of them.

Now I'm going to enjoy sitting on the couch...my couch, just sitting.

Home sweet home! :)



1.25.2010

WIRELESS!

It is unbelievable how much difference a week makes.


Monday, January 18


Monday, January 25




Woo Hoo!

That yucky old chest tube was yanked today! Now all D has left are his leads and pulse ox, which both just stick on him, not in him. He is a much happier little man!

The enalapril he started yesterday obviously helped, because he went down to only draining 14mL the next 24 hours, which the doctors felt very comfortable with. We're hoping that with the chest tube gone D will start eating better.

We had to switch back to the Portagen today because Derrick has thrown-up a couple of times. We're thinking it was from the protein powder we were adding to his skim milk. I don't want to gross you out, but that was THE WEIRDEST throw-up either of us have ever seen! It looked like laughy taffy or soggy bread (told you it was strange). Large chunks, pink (from his Boost juice) and just really weird. He didn't seem bothered by it, although he was flapping around like a crazy kid afterward, so obviously he felt better. We decided we would give him a break from the protein poweder to see if it happened again. So far today we're good. Hopefully it'll stay that way.


So...it's a POSSIBILITY we could bust out of here tomorrow!  I'm not sure what they'll say about his eating because that's been an issue, as always.  I hope that doesn't keep us here because he'll probably eat better at home.  As long as his eating is satisfactory and his chest xray still looks good, we should get the "all clear."  Yes!

This morning Derrick enjoyed playing with all of his toys while we awaited the chest tube decision. 

He was sure to profess his love to everyone who came in his room by giving them the "stinky face." 


His nurse took him down the hall to have his chest tube removed, and she gave him her badge to play with.  She said he held on to it the whole time.  He cried when we made him give it back.  (His lips are super pink because of the medicine he refuses to take.  Surgery didn't make him that pink!)


D was finally able to get dressed after the tube was removed! 


We're pretty sure he feels MUCH better!



After a clear chest x-ray, we went outside for a walk (totally wireless!!).  Derrick refused to sit back in the stroller on the way outside, so this is the only way we could keep him down.  Such a crazy kid!

He enjoyed his walk outside, and didn't move.  He sat completely still in the stroller and just took it all in.  I guess he's just as tired of being stuck in this room as we are.

We grabbed Starbucks while we were out, and D was so disappointed that Caramel Frappoccinos are NOT fat free (so am I)!  He usually gets to have some of the whipped cream off the top, so he was a little sad.  I promised D that I would take him to Starbucks when he's allowed to have fat again.  It's a win-win situation for both of us! :)
 

It's been so much easier to cuddle with this sweet guy this afternoon, and he is SO much happier!


Hopefully the next update will be an "Adios Charleston!"  We love this city, but boy are we excited about going home. 

Thank you for all of your prayers!

1.24.2010

D has LOST his mind!

Last night Derrick officially lost his mind! He has absolutely earned the name "Party Animal" and it couldn't be more fitting. Or exhausting.

As you know, D's diet has changed to "no fat." Well, guess what they use to replace the fat that's being removed? SUGAR! Guess what that does to a little boy with an endless supply of energy already? It gives him an unimaginable amount of energy that he has no idea what to do with!

Most of you know that Derrick has issues eating anyway.  He's never been a little piggy and usually seems as if he doesn't care if he eats or not.  Then to take away the yucky Alimentum that he's been eating and change him to Portagen...forget it!  We didn't taste the Portagen, but it smells like a bottle that I've accidentally left in the car for a few days in the middle of July.  Seriously, if I didn't know better I would have sworn they were trying to feed my child rotten milk!

Needless to say, that didn't cut it.  We've gone to skim milk.  Alone, D will drink it ok.  The problem is it's skim milk.  It has a little over 10 calories per ounce.  We've been adding protein powder and chocolate syrup, which boosts the calorie count pretty well, but most of it is thanks to the syrup.  The problem with the syrup....an incredibly hyper little boy!  By the time the energy wears off the extra calories have been long gone!  It's kind of a lose-lose situation. 

Case in point:
Last night around nine-thirty Derrick was given his last chocolate milk and protein bottle of the night.  At about 11:30 we decided it was time for him to lie down for bed, ready or not.  Of course since we're here we can't let him just cry himself to sleep like we do at home (and he usually cries for about 2 minutes, tops), so one of us has to stand by his crib so he can see us until he falls asleep.  (Rotten, yes, but what do you do?)  Last night instead of wallowing around like he usually does, D was on his back slamming his feet, clapping, and making "the stinky face!"  He wouldn't stop because clearly he was having a blast!  This went on for at least 45 minutes until we finally let him sit up and play.  He kept trying to pull up on everything he could reach and was trying to stand up by putting his hands down in the crawling position and putting his feet down and fanny up.  If he could have kept his balance he would have been standing.  Ridiculous!  He was dancing and flapping his arms...he was just out of control (hence the reason you didn't get an update last night).  Several nurses stopped by our room to laugh at D's insanity and dubbed him the "party animal."  Is anyone noticing a trend here? 

Anyway, he finally fell asleep about 1:30 am, and we learned a lesson.  Extra calories or not, there will be NO chocolate syrup after about 2pm. 

Overall, there wasn't really anything new yesterday.  Mamaw and Papaw came and Justin and I were able to leave (in the car!) and have lunch.  It was nice to be able to get away for a couple of hours and know that D wouldn't be upset.

This morning we were told that best case scenario of us leaving would be Wednesday.  All day yesterday Derrick had 20mL of drainage, and the minimum for them pulling the chest tube is 18mL in 24 hours.  Dr. Bandisode said that he had to be at the 18mL mark or less for two days in a row.  The numbers aren't great for today already...he's had 14mL by about 8pm.  We definitely don't want it pulled early, but... 

They started D on enalapril this morning.  There was a study done that found when given an ACE inhibitor (type of blood pressure med like enalapril, captopril, lisinipril) after heart surgery, the duration and amount of chest tube drainage was decreased.  They put D on it to try to get his drainage to slow down, but Dr. Bandisode said that he would likely be on this indefinitely because it helps preserve ventricular function.  Since Derrick has only one ventricle, we need it to stay good as long as possible.  Hearing them say "preserve his ventricle for as long as possible" really drives home that need for research.  It brings up that harsh reality that Derrick will never be "fixed," but we're  "prolonging" his need for a heart transplant some day.  We hope his lone little ventricle can be preserved until they've figured out a better alternative, but as of right now, he's pretty much guaranteed to need one to have a normal life-span.

Today we took D out to get some fresh air.  We took a walk to the Horseshoe and looked at the flowers.  We couldn't stay long because it started drizzling, but we enjoyed it while we could. 



Justin ran up and down the ramps outside of the hospital pushing D's stroller, and he was making the stinky face the whole time.  I think he enjoyed his outing!

Other than that, it's been a pretty quiet day.  Our nurse tonight said that there was a rumor that D may get his chest tube pulled tomorrow, but we're not holding our breath.  He got his IV site removed today because it had "gone bad."  He hasn't needed it since Wednesday and likely won't need it, so since it was a little leaky...it was pulled!  We were pretty happy about that, and so was he!  He just stared at his hand and kept turning it over looking at it.  The boy was pleased! :)  Now if we can just get rid of this chest tube, he'll be wireless (invasive wires anyway). 

Tomorrow D will have a chest x-ray, but I think that's all that's on the agenda for the day.  Trying to pump this kid full of calories and keep him from walking out of here...that's about it.  The words "NG tube" were thrown out today because of the lack of eating, but we're praying it doesn't come to that!  He tries to eat...

 
but really, it's just not enough!

Thank you so much for your continued support and prayers for Derrick.  Sometimes it's hard to be stuck here, then we look and see all of your words of encouragement and it's so much easier.  We appreciate them more than you know.  Please keep our sweet friends Laura, Josh, and Ruthie in your prayers.  I'll explain later.

Until tomorrow,

1.23.2010

Mr. Happy

Ahhhh....A much, much better day!

This morning during rounds the docs decided to be more aggressive with D's "tummy issues" and ordered an enema.  It wasn't pretty, but the results were amazing!  Thank you Dr. Hlevech!

Today was pretty eventful...in a good way, although Derrick wouldn't agree.  Today steps were taken to getting us closer to home so we were happy about them!  He had his dressings changed, his pacing wires removed, and his discharge echo.  Now all we're waiting on is this ol' chest tube to be removed, and he'll be wireless!

The electrophysiologist looked at D's heart rate strips and the holter monitor results and determined that his arrhythmia (abnormal heart rhythm) isn't anything that needs to be treated now, but they will continue to follow it.  His body compensates for the extra beats fine for now, but they'll monitor him from time to time to make sure that he continues to be able to handle it.  Good news.

Dr. Hsia said that he wanted to remove D's chest tube today, but the PA's told him he was being a little too much of a "cowboy" and that one more day of having it would be better.  He gave in and said he hoped to remove it tomorrow. :) We want it gone, but we want it gone at the right time for Derrick, not for our convenience.  He's still had a fair amount of drainage but it has been less than the previous days so it's getting better.  They told us there's a possibility that we could go home Sunday, but it may be Monday.  Before surgery we were told to expect a 5-7 day stay, so even if we go home Monday, that would be 8 days and we had a speed bump to slow us down.  Not bad, huh?

We've been talking a lot to the docs and nurses about Derrick's next surgery.  They told us it would be more complicated than his first two, and that it would be more complicated than the typical Fontan because of the complexity of his heart.  It makes us nervous to think about, but at the same time, reaffirms our recent desires to do more for research.  People keep saying that it's a few years down the road and that a lot could change by then.  That's absolutely right, but we can't sit back and hope things change by then, we have to do something to help things change.  That's why we're doing the Fatz breakfast on February 6.  No, we won't raise enough money for some elaborate study to be done, but whatever we make will help.  It's something.  

The definition of insanity is doing the same thing over and over and expecting different results.  We've decided not to be insane (well, I guess that really depends on who you ask) and stop sitting around and hoping someone does something about the CHD problem and the lack of funding for research.  Will you join us?  You can start by doing something you have to do anyway...eat breakfast!  Come to Fatz Cafe on February 6!  Tickets are $7, so send me an email (carolinacarters(at)gmail(dot com)) and tell me where to send your tickets! :)  We really hope to have a HUGE turnout...and it's really NOT far away!!

Ok, enough talk.  I know why you really read this page...

This little guy was not feeling well yesterday at all. 


He tried his best to play, but he really wasn't that into it.


Last night after multiple doses of Miralax and a suppository he was feeling a little better,


and was finally able to get some much needed rest.


This morning Nona and Gong Gong came to visit and brought some fat free cookies.
You know the way to a man's heart is through his tummy.  


Nap time came and Gong Gong was so comfy.


Today was a much better day for D and Mr. Happy!

Thanks so much for the phone calls, emails, comments, and PRAYERS! They help more than you'll ever know!! We love you all!!

1.22.2010

Whew!

It's been a long one folks!  This isn't going to be detailed...I'm exhausted.  I'll do better tomorrow, promise.

We woke up this morning to screaming...not crying, but SCREAMING! Neither of us had ever heard Derrick scream like this before. It was more than an angry scream, it was a painful one. I picked him up and he stiffened his body and just wailed. There was nothing to do to console him. Finally he got another dose of Oxycodone and he calmed down. Poor guy!

By around 6:00 tonight Derrick had only eaten about three ounces of that nasty new formula and a little bit of juice. We knew he was having poopie problems because he hadn't gone since Sunday! That'll cause some discomfort. They gave him some Miralax, but it needed to go in four ounces of fluid, which was a problem. He got down about 3/4 of it, but it took about eight hours, so I'm thinking that diminishes the effectiveness. We finally got an order for a suppository, and about 45 minutes later we had a brand new kid! I really hate that it took all day for us to get him some comfort. :(

Total recap of today:
Pain meds
By now, D should probably just be on scheduled Tylenol for pain, but because he still has a chest tube, he still needs his Oxycodone.
Pain/Discomfort
The nurses said that adult patients say the chest tubes hurt worse than the surgery site.  Ouch!  If you haven't ever seen chest tubes, google an image and you'll see why that's easy to believe.  The thing that worries us is that the longer they're in, the more they're going to hurt when they come out.  The one he has left isn't just stuck straight in, it's snaked around in his chest cavity collecting fluid from all over.

Derrick is probably having some headaches.  Because the surgery redirects the blood flow from the upper body, the pressures change.  Until his body gets used to the new blood flow (which should be within the next few days), he will probably have headaches.

D has also been flushing.  This is also caused by the change in blood flow and will hopefully subside soon.  It looks kind of uncomfortable.

Derrick has a yeast infection on his neck that was probably started by some of the tape during surgery and his bandage afterward.  He has been using an anti-fungal cream for the past day and a half, so hopefully that will go away soon.  It looks terribly painful!  Justin said it looks like somebody put a hot curling iron on his neck and left it there, and it does.  It doesn't seem to bother him though.

Constipation
 Caused by not drinking enough and the pain meds.  The problem is he can't come off of the pain meds because of the chest tube, and he won't drink enough because his tummy hurts.  That one is kind of a catch twenty-two.
 Chest Tube

Yesterday (Wed.), he had 28mL of milky drainage.  Today he had only 18mL of drainage and it was clear (well, yellow, but clear as in not milky).  It being clear means that his body is responding to the no fat diet.  Thank you God!  Sometimes people don't respond to the no fat diet and they have to go back in and repair the thoracic duct surgically.  Thankfully that doesn't appear to be necessary for D. To have the chest tube removed, D can't have more than 12mL of drainage.  That's how much his body can absorb on it's own based on his weight.  I'm assuming that they'll leave it in all day tomorrow (Friday) and watch the drainage.  As long as it's 12mL or less they'll probably remove it Saturday (please, please!!).  They'll keep D to monitor him Sunday to make sure he's not collecting fluid and if he's not, maybe we'll go home Monday.
Eating
Derrick pretty much refuses the Portagen.  Even loaded down with chocolate syrup.  After drinking nearly nothing today, the doctor decided to let him try skim milk.  He's been eating yogurt, so we're assuming he's ok with the milk allergy thing we were worried about when he was really young and having issues with his formula.  He drank almost four ounces of skim milk tonight with no chocolate, so we'll probably stick with that for now.  Hopefully he'll continue to drink it and he will be able to tolerate it.

I think that's about it for now.  I know I shouldn't complain, but today was just rough.

And now it's not uploading my pictures...ugh!  I'll post them tomorrow.  Earlier than 2am like it is now, so check back later in the day.  I've been told that some of you don't like it when you don't know what's going on (and I totally appreciate that), so I wanted to get this up.  It'd be better with pics, but I'll post them asap.  Technology is good as long as it works...Sorry!

Thanks for the messages, emails, phone calls, and prayers.  We appreciate them SO MUCH! 




P.S. If you've been trying to call us and keep getting our voice mail, email me and I'll give you our room number. We can't have our phones on in here and they're both dead and we can't find the charger, so...sorry! We're not avoiding you, promise!

1.20.2010

A Birthday and a Small Setback...

Dear Sweet Cheeks,
Wow! You are NINE months old today! I can hardly believe how quickly the time has gone by. You are such a tough little man and we are so proud of you. In these short nine months you have gone through more than most adults ever do, but you roll with the punches (and you get a lot of punches) and do it with a smile (except for this picture, ironically!). I wish I could be more like you.

Over the past month here's what you've been up to:

  • You had your second heart surgery.

  • You had your second heart cath.
  • You pulled up completely for the first time (at the hospital, of all places!)
  • You have come so close to crawling, but we're thinking you'll skip that part and go straight to walking.
  • You celebrated your first Christmas.

  • You've become quite an eater...of table food that is. You'll eat anything we give you, as long as it's not made for babies.
  • You enjoy eating crackers, usually on the kitchen floor while I'm cooking.
  • You have gotten pretty good at feeding yourself finger foods. You really enjoy doing this, and usually talk/sing/make noise while you feed yourself.

  • You say "da" and flap your arms and smile a huge smile when daddy comes home from work. You're always SO happy to see him!
  • When you get upset you'll say "mama" but that's pretty much the only time you'll ever say it.
  • You don't say "bye bye" and wave when we ask you to anymore. You'll do it on your own every now and then, but never when we ask. I guess you're just rotten like that.

  • You enjoy non-traditional toys like wrapping paper rolls, gift bags, paper, cell phones, remotes, pens, and cords.
  • You like your new cell phone. We think you think it looks real. There was no tricking you with those "play" cartoon-baby-like phones.

  • You've started pointing at everything.
  • You reach for everything you want, and you seem to want everything. You'll do whatever it takes to get to what you want.
  • You sometimes try to mock funny noises, then you laugh. You have a great sense of humor.
  • You enjoy playing with big kids. You get very excited to see them and watch them closely. You love all of your cousins, and KeKe too.

You're our hero, Derrick. You're an amazing little guy and you have made both of us better people. As I write this, I'm watching you take a nap in your hospital bed. I feel so sorry for you sometimes, but at the same time, you're not the kind of person who wants or needs pity. You've made that evident already. You are so strong and you don't whine and complain. You do what you have to do and you're ready to be happy again. If all of us could be more like you we would all be happier people. We love you sweet boy...more than I ever thought possible. Happy nine months Cheeky!

We love you to the moon and back!

Love,
Mama and Da
**************************
This morning around 3:00 Derrick woke up crying. Not just crying, but really crying. We think he was hurting, so we gave him some more pain medicine and I held him and fed him and he fell back asleep. It felt so good to hold him! It wasn't easy with those chest tubes in, but it was absolutely worth it!
Later this morning one of the doctors came to talk about the plans for the day. She said they probably wouldn't pull D's chest tubes today because he was still draining too much. I thought this was odd because they were close to pulling them yesterday, and we hadn't noticed much drainage then. Well, this morning when we looked there was more drainage. But worse than just more drainage, was that it was milky-looking. We had been told before surgery that this could happen, so we knew immediately what it probably was.

Since this was D's second rodeo, his scar tissue made it impossible to see a few things when he was opened up. One of those things was the thoracic duct. The thoracic duct carries lymph and chyle which are emptied into the bloodstream and go to nourish the body. When the thoracic duct is injured, chyle (a fluid that contains fat) drains out into the chest cavity. Since Derrick still had his chest tubes in, it could be seen in the drainage after eating something fatty. This isn't uncommon, and it's really and easy fix. I say easy fix because it could be much worse...but it won't be easy for the next six weeks.
For the next six weeks Derrick has to be on a NO FAT diet. His formula has been changed to something called Portagen, which is a fat-free formula that we will get from the hospital. It smells terrible and he hated it from the first sip. We even added (a lot of) chocolate syrup to it, but that didn't help either. He'll have to eat fat free foods too. Heidi, I hope you're reading this because we're really going to need you!! If anyone has any fat free suggestions for a baby, feel free to share! He had applesauce earlier, and we ordered "spaghetti" for him for dinner (noodles w/ marinara sauce, yummo!).

This will take some adjusting to, but it is doable. Heart-wise, D is still doing GREAT! This thoracic duct problem is manageable for us and we can take care of it at home, so for that we're grateful. If it's something we can control and make better, it's fine by me. I'm just SO THANKFUL his heart is doing well.

This will slow down our progress of getting out of this place. They pulled one of D's chest tubes today, but the other one will probably be in for another day or two just to make sure the draining stops when the fat in his diet is gone. I think that's pretty much what we're waiting on as far as going home. Isn't that GREAT?!

Today D got a gift from a heart friend, Ivan. He LOVED it!! Ivan, THANK YOU SO MUCH! (I don't have your email address or anything, so email me.) Derrick has been fascinated by the balloon all day, and he carried his new bear friend with him to comfort him when he got his chest tube pulled. That was very sweet. Thank you so much!

D's new fascination, and his little friend looking on.
 
We went to the Atrium today to play. It's such a neat place! Derrick enjoyed getting out of the room and seeing some other kids. He had the infant section all to himself, and we read books and played with toys for almost an hour.


Some of us really enjoyed the toys, while others of us really enjoyed the music!




    Isn't it amazing how resilient children are?  This is about 48 hours after open heart surgery, and our little guy is dancing!  In case you're wondering...the "boxing glove" is to keep him from pulling the IV out of his hand.  It's fun.  We've re-covered his hand about 486 times today, but that's ok.  We have nothing else to do! :)

    Thanks for the continued prayers and support!!  We love you all!