Wednesday, December 30, 2009

New Game Plan

WARNING:
This is a rather lengthy post and it's content is centered on breastfeeding
(for the most part).
Read at your own risk!


It's been a very interesting 24 hours here in our household. Hubs and I have been thinking VERY hard about this whole milk protein allergy thing with Chase. I've heard from several HLHS heart moms who say their babies had some blood in their stools as well, but that it wasn't a milk allergy and it cleared up on its own. So hubs and I got to thinking: Is it fair to put Chase on a nasty formula for 2 weeks on the off-chance that he might be allergic to milk protein?? Is there a better way to test this allergy theory? We decided it might make sense for me to:
  1. Immediately eliminate all milk protein products from my diet, which will take a good 10-14 days to completely leave my system;
  2. Continue to provide Chase with my breastmilk, knowing that it will continue to have some form of milk protein in it for the next 2 weeks, although the amount will be decreasing each day;
  3. After 2 weeks, once my breastmilk is milk-protein-free, we continue to give him my milk for another 2 weeks, then test his stool for blood again. If it comes back positive, then we know it's not a milk allergy and we didn't have to make him suffer on nasty formula (although we would potentially need a referral to a GI to check for other possible causes). If it's negative, then we know it was a milk allergy and I would need to continue on my milk-free diet throughout the entire time Chase has my breastmilk. The bonus here is that IF (God willing) we're given the go-ahead to start nursing on Tuesday after the swallow study, I can go ahead and start breastfeeding my precious baby immediately! Woot!
So here's a summary of what we've been though the past 24 hours:
  • Chase had a rough night with the formula last night. He was barely taking 3 ounces of it, compared to the 6-7 ounces he had been taking of breastmilk. In addition, he's been puking a LOT of the stuff. His 3AM feeding resulted in a loss of at least 2 of the 3 ounces he took. We've NEVER had an issue with him spitting up breastmilk.
  • Last night I emailed one of the cardiologists in the PCICU at MUSC to ask if it's relatively common to see some blood in stools for HLHS babies.
  • This morning I called his pediatrician and left a message to find out what his "back up plan" might be since the formula isn't going over very well.
  • This morning I called his cardiologist and left a message to determine if it's somewhat "normal" for HLHS babies to have blood in their stool, per several of the comments I've received from other heart moms who say this was the case with their babies.
  • This morning I called MUSC and left a message for the speech therapist to inquire about the thickener we've been using to thicken my breastmilk and whether or not they've heard of an issue with blood in the stool for other babies using the thickener product.
  • This morning I called my mom at work (she's a NICU nurse -- woot!) and left a message for her to ask the Lactation Consultants at her hospital for some kind of a handout or brochure regarding how to eliminate milk protein from a nursing mother's diet.
Whew! So it was a busy morning! And luckily, I received all of the information I needed to discuss this further with hubs. Here's what I found out:
  • Per the PCICU cardiologist at MUSC, it is not uncommon to see blood in the stool during the stay in the ICU and even once the baby is home. He suggested it could be due to things such as their immature body undergoing major stresses with surgery and getting used to a new physiology as well as being on a blood thinner like aspirin. He said continuing on breastmilk and giving the situation time should take care of it. Woot!
  • Chase's pediatrician didn't have any issues with our chosen plan of action (no formula, just breastfeeding with me eliminating milk protein from my diet). Woot!
  • His cardiologist wasn't in the office today but another one from his practice called me back. He's my new best friend! He said he's not a fan of any doctor telling a mom to stop breastfeeding. He didn't think it was overly usual for an HLHS baby to have blood in their stool, but he completely agreed with our plan since it involved keeping Chase on breastmilk. Woot!
  • The speech therapist said she wasn't aware of any issues with the thickener causing blood in stools, so I could cross that one off my list. But the good news is that she told me that there's definitely a good chance he'll be ready to take straight breastmilk after she does his swallow study on Tuesday. Woot!
  • My mom came through for me and brought me a sheet of information on the "Do's" and "Don'ts" of a milk-protein-free diet. Woot!
So earlier today we went ahead and started Chase back on my breastmilk, although it still has milk proteins in it. He's taken it as wonderfully as we expected and hasn't been spitting up at all! Way to go, Rock Star! Also, I started my first day of this new diet and overall it hasn't been too bad! I've made some minor adjustments, but nothing too over the top just yet. Although I have been amazed at how many products have some form of milk in them that you honestly wouldn't expect! Sheesh.

If any of my readers have any experience with milk allergies and breastfeeding on a milk-protein-free diet, I welcome your comments/thoughts/experiences, etc.!

Tuesday, December 29, 2009

Unbelievably Frustrated

I have to reprise this photo of Chase because it fully expresses my current feelings regarding the world as I know it:


As I mentioned earlier today, I got some frustrating news at Chase's pediatrician appointment earlier today. I know I've mentioned out here that he's occasionally had some blood in his stools, but we determined he had a small fissure (ouch!) that was probably the cause of it. We've been testing his stools weekly just to be sure. Today I took him in for some vaccines (3 shots and 1 oral, a total of SIX vaccines -- sheesh!) and also spoke with his doctor. Apparently since his stool is still testing positive for blood, it's time to try something else. The doctor is taking him off breastmilk and putting him on a special formula, Similac Alimentum Hypoallergenic formula. He's thinking Chase has an allergy to milk protein.

This is so not cool.

If you've been keeping up with us, you'll know we're heading back to MUSC next Tuesday for another swallow study to determine if Chase is able to handle regular consistency milk (we've been having to thicken his breastmilk to keep him from aspirating on it). My hope and prayer for the past 4 weeks has been that we'll get down there and they'll say YIPPEE! he can have regular consistency milk, meaning... I can FINALLY start breastfeeding my baby!!!

Now that we've had this milk allergy thrown at us, the only way I can breastfeed, assuming we get the go-ahead next week, is if I eliminate ALL milk protein, whey, caesin, etc. from my diet. It's insane the amount of foods that contain these ingredients and the huge lifestyle adjustment this would require. Of course I'm willing to do this and more if it means giving my son the very best. I just can't truly wrap my head around all of this right now. I guess we'll know in two weeks if it truly is a milk allergy, and we'll address how we'll handle the situation then. It's one of two options: I change to a milk-protein-free diet, or I give up on my dream of breastfeeding my precious son and give him formula instead.

Although I can't stand the idea of Chase having a milk allergy, I'm more worried that it's not a milk allergy. If it's not, we'll be referred to a GI doctor who will run a bunch of tests to determine what, if anything, is wrong with his digestive system, intestines, etc. I guess the milk allergy would be the lesser of two evils. I just know we've been through so much already and we still have another major surgery in just a few short months... I was hoping for some taste of "normalcy" at least for a little while. I know things could be much worse for us (he IS a hypoplastic heart baby after all), and I feel so horrible for getting so heartbroken and disappointed over all of this. I just want my baby to be healthy, no matter what it means I have to do to make it happen!

Please pray for me as I deal with my worries and disappointments and for Chase as he deals with a potential milk allergy and/or GI problem.

A Special Message from Chase

I couldn't help but share this little clip of Chase from earlier today. He's so cute!! And he had a special message at the end! LOL! Oh, and you can see that LO doesn't like to be too far from the spotlight... that girl loves attention!

On another note, I took Chase to an appointment with his pediatrician today and got some frustrating news that I'll share later. Ugh.

Posted from my iPhone

Saturday, December 26, 2009

HLHS Angel

Please keep the family of baby Dean Gandy in your prayers. Dean was born on August 3rd with HLHS and an intact atrial septum and was in the PCICU at MUSC the same time as Chase. This sweet baby lost his four-month fight on December 21st and has earned his wings in heaven. We didn't have an opportunity to meet this family or their sweet boy, but when one heart family loses a precious soul, all heart families feel the loss. Please lift up his parents and family in prayer as they say goodbye to this precious baby during his funeral service tomorrow, Sunday, December 27th. I can't even begin to imagine what they're feeling!

Here is a picture of this adorable, sweet angel from his CaringBridge website.

Friday, December 25, 2009

Merry Christmas!!!

Wishing you and yours a very Merry Christmas!

Love,

Baby Chase
a.k.a. "Rock Star"
a.k.a. "Fatty"


Posted from my iPhone

Thursday, December 24, 2009

Merry Christmas Eve!

Whew! It's been a busy day! I managed to get everything done that I had hoped to, with the exception of baking some peanut butter cookies and making some peanut butter fudge (weird, I know... serious peanut butter craving going on!). I'm happy to report that I was able to A) take a SHOWER today (woot!!) and B) leave the house for the first time in THREE days! So all in all, I'd call this a very successful Christmas Eve! And it was really important for me to get this post up before going to bed tonight. Usually I post (for the most part) for hubs' family since they all live far away and can't be with us as much as we'd all like (hopefully that will change very SOON!). But this year, I also have to post to keep MY family updated, even though they all live within 5 minutes from us! Since we're still in the time between Chase's Norwood and Glenn surgeries, we have to live in a bubble (our living room), which means no family gatherings for us... again, even though all of my family is getting together right down the road! So hopefully this way all of our family will feel like they were able to take part in our quiet little holiday celebration. :)

So we had a lot planned for the kids (and by "kids" I mean LO, since obviously Chase is too young to participate in the festivities). Ultimately we were able to accomplish most of the to do's: eat dinner, bake and decorate cookies for Santa, open ONE present (this is my family's tradition... the kids open ONE gift on Christmas Eve and it's always Christmas pajamas!), take pics of the kids together in their Christmas pj's, set out the milk and cookies for Santa, read a bedtime story and get in bed before Santa arrives! Whew!!

So here are some pics from our evening...

I have to admit these two bath pics are actually from a few nights ago, but I haven't shared any pictures of my little cutie in his baby tub, so here ya go! I love this first one because it shows some of his battle wounds... surgery scar over his precious little heart, chest tube scar, PICC line scars on his arm. He's been through so much in his short 8 weeks! He's one tough cookie!

This one's another favorite because he's smiling!!! He loves smiling! Smiling's his favorite!!

So back to our Christmas Eve pics. This one is VERY appropriate since we consider Chase to be our most important and precious and special Christmas gift of all! Thank you, Lord, for blessing us with this perfect baby boy!!! (And yes, his pants are hiked up almost to his arm pits because this is a 2-piece outfit and the t-shirt keeps riding up his back so I had to tuck the shirt into the pants and hike them up to keep his shirt in place.)

Here's LO posing with her TWO pairs (pair?) of Christmas pajamas... I let her choose which ones she wanted to wear to bed. Can you tell she was tired of me trying to get the "perfect shot?" If you ask hubs, he'd probably tell you she picked up and perfected that eye roll by watching me. :)

Here's our little man with his new pj's. "My 1st Christmas" is written on them. So cute!

Here's our little crazy girl workin' the Christmas bows.

Now it's time to work on those cookies for Santa! I finally got her to stop eating the candy decorating the cookies for a second and smile for the camera!
She was very meticulous in her cookie decorating...

Proof she wasn't just decorating the cookies...

Couldn't leave out Chase! This is what he was doing while LO decorated cookies. Can you tell he was hungry? On a related note, we weighed this little fatty last night and he was an even 10 pounds! Isn't that fantastic?! I guess that's what eating 7 ounces every 3-4 hours will do to a little baby! And yes, that means hubs and I bought a scale so we can track his weight/trends/etc. from home. We're also thinking of investing in a pulse oximeter to track his O2 sats... but I digress! Back to the pics!!

More of LO decorating cookies...

Hilarious! I put some candy red hots on her tray of decorations and she happened to eat one... She wasn't a fan! It was "too hot!"

Hmmm... maybe the frosting will taste better?

Hard at work!

Loved this close-up of my cutie!

The final product! Lots of yummy cookies for Santa! I had planned to use a (gasp!) bag of Betty Crocker Sugar Cookie Mix from my cabinet to make things quick and easy, but the bag expired back in September. Can you tell how often I "cheat" when I make cookies. Never. Anyway... I had to bust some out from scratch and decided to try a new recipe from Pillsbury (don't tell Betty!). Anyway, these No-Roll Sugar Cookies came out fantastic!!! I was a little concerned with the ingredients... who uses powdered sugar in a cookie recipe? And why does it call for butter AND oil? Weird. But they came out delish and are oh-so-soft and perfect! Truly these didn't even need to be frosted, but I had to keep things fun for LO. Oh, and we left out some chocolate milk for Santa, too, since Max & Ruby say he likes it better than "the regular kind."

We capped the evening by attempting a picture of both kids in their Christmas pj's. It didn't go well. Chase was still quite hungry so he wasn't the most cooperative. Oh, well! I think this pic came out just perfect!

We put Chase to bed and then LO got to have a very special treat! Her Gramma and Pa Pa found this awesome book at Hallmark. It's a storybook of "Twas the Night Before Christmas" BUT... they were able to record themselves reading the story to her! Isn't that awesome? She was so excited (once she realized it was Gramma and Pa Pa reading it, and not Santa!). What a beautiful memory this was for her! I can't wait to see how tomorrow morning goes down. We've got the video camera and tripod set up and ready to record all of the fun! It's so exciting for me that she's finally old enough to know what's going on! I love it!!

Merry Christmas Eve to all! I can't wait to share the fun that takes place tomorrow... Stay tuned!!!

Tuesday, December 22, 2009

Equality

I can't post a video of LO without sharing one of Chase, right?? Here he is enjoying his bouncy seat. I'm so stoked when he can chill out for a few minutes at a time without requiring any attention from mommy or daddy!

Oh, and I'm pretty sure I caught a smile near the end of the clip! :)

Posted from my iPhone

Translation??

I think we have Go! Diego Go! to thank for this. I have no idea what kind of eagle she's referring to, nor the majority of what else she was saying! :)

But she's just so darn cute!!!

Posted from my iPhone

Saturday, December 19, 2009

Update

Just a quick FYI... Chase's cardiology appointment went really well on Friday. They didn't do an echo or EKG -- apparently they'll do those every other visit (basically once a month). They took his blood pressures, weight, and O2 sat (85 -- Woot!!). Dr. Horne took a look at my boy and was very pleased with him! He said his blood pressures were "fantastic" and his O2 sat was "perfect!" He also reduced his Lasix from 2x per day to just 1x! Woot!

On a related note... So apparently we're supposed to arrive to ALL of our appointments 30 minutes early. Yes, ALL of them. Okay... I wasn't aware of this so I showed up 10 minutes late and the receptionist had to get up and go ask Dr. Horne if he'd still see us.

Wow.

Obviously, he said yes (whew!). So we get back there, do all the weight, BPs, etc. in about 10 minutes or less. The nurse left and said the doc would be in shortly.

Seriously, it was 50 minutes later before Dr. Horne made his appearance. Yes, FIFTY minutes. Now, I wouldn't care as much if it were an appointment for myself, but seriously? Here I am, supposedly arriving 30 minutes before my appointment, then waiting 50 MORE minutes to see the doctor. I have an infant with a feeding schedule, a pumping schedule for myself, a 2-1/2 year old requiring care to be coordinated, etc. etc. etc. Why is it that my time is much less valuable? I'm not at all angry or irritated by all of this. Ultimately I'm aware that we will be seeing Dr. Horne for the rest of our lives, and I'm okay with that! He's really great and I really like him a lot! It just takes so much to get my little guy out, coordinate his feeding schedule, my pumping schedule and care for LO. And it'd be a bit easier if I had any say in his appointment dates or times. It's one of those things where they tell you "here is the next appointment" and you just take it and make it work. WHEW!

Enough complaining.

Let me share some EXCITING news! My sweet boy slept for 7 hours straight last night! That's right! He slept for 8 hours Thursday night, then 7 hours last night. I'm hoping and praying he's finally settling into a routine and I'm SO okay with only one middle-of-the-night feeding/pumping. Way to go, sweet Chase!!! He's my little Rock Star!

Pigtails

LO is sporting pigtails for the first time in her almost 2 1/2 years! What took me so long? She's so cute!!!


Posted from my iPhone

Friday, December 18, 2009

Q&A

Q: Who slept 8 hours straight last night??

A: My sweet baby boy, Chase! Woot! This meant 5 straight hours of sleep for Mommy & Daddy! I couldn't be more thrilled!! I sure hope it wasn't a fluke and that he keeps this up!

Yippee!!!!!


Posted from my iPhone

Thursday, December 17, 2009

Recycled Fun

Tonight Chase got to play with one of LO's favorite toys from when she was a baby. It's a Fisher-Price Rainforest playtime Gym complete with lights and sounds! He really seemed to enjoy this experience -- and his sister did, too! I think she was wanting to show him how to play with it. :) The fun times ended when LO decided to play with her little basketball instead and bounced it right smack onto her little brother's head. He was definitely not a fan of being hit in the head, but he did spend a good 10 minutes scoping out his new toy! It was so cute to watch him being so alert and even cooing a bit! Much more fun than watching him sleep!

Posted from my iPhone

Pediatrician Appointment Update

So yesterday I took Chase to his first appointment with his pediatrician. He did great! I was very impressed with how well he handled the visit, although he didn't get any shots so I'm sure that had something to do with it! Our PC (pediatric cardiologist) told us not to give him any vaccinations until after he's 2 months old, so we got to hold off on that yesterday.

They took all of his stats and I was very surprised with his weight! We had taken him in last Tuesday to been seen for his bottom issues (rash, etc.), and when they weighed him he was 8 lbs. 13 ounces. At his appointment yesterday, he was up to 9 lbs. 8.8 ounces! That was fantastic for just being a week apart! He still is only in the 15th percentile for weight, but I expect this to improve nicely over time. As for height, he was 22.5 inches long and in the 48th percentile. Woot!

Overall he had a great visit and is doing great. We decided to continue giving him straight (thickened) breastmilk and not fortify it with NeoSure, and we will start giving him some multivitamin drops (Polyvisol with Iron). Next week I'll need to take him in for a quick visit to get four vaccines, 3 of which are shots and 1 that is oral. I'm pretty sure he won't enjoy that appointment... ;)

So tomorrow it's off to Dr. Horne for a cardiology appointment. I'll post an update on that one as well.

Sorry this post wasn't overly exciting... Would it make up for it if I post a cute pic of Chase? Well then, here ya go!

Wednesday, December 16, 2009

Pediatrician Appointment

Chase has his first appointment this afternoon with his pediatrician. This means I'll actually have to have a shower and get out of my pj's before noon for a change! I'm looking forward to finding out how much our little guy weighs. When we left MUSC, they had him on fortified breastmilk, which basically means adding a few teaspoons of formula (Neosure) to his breastmilk bottles to increase his calorie intake. However, we had lots of trouble with his stools so we decided to eliminate the Neosure. Basically he was getting constipated a lot, his stools were really dark brown, and we even noticed some blood in his stool as well. It turned out our poor little fella had a HORRIBLE diaper rash (completely raw skin -- the diaper rash cream wouldn't even stay on it!), a small fissure (a tiny crack in his skin), plus the constipation and gas pains. After eliminating the Neosure, he didn't struggle as much but he was still in a lot of pain from the rash and fissure. We were able to determine it was the fissure that caused the blood in his stool, and I'm happy to report he's improved dramatically from this time last week. His stools are back to the normal breastfeeding baby stools, the fissure is almost completely healed (no more blood!) and his diaper rash is gone! So while we were able to fix the diaper area issues, it required decreasing his calorie intake, so I'm curious to see what impact (if any) this has had on his weight gain. I'll post an update later on how it goes!

I'm also pleased that my sweet boy won't have to worry about any shots today. His PC, Dr. Horne, said he shouldn't have any immunizations until after he's 2 months old. So since he's only 7 weeks right now, there will be no shots today! Woot! Unfortunately we'll have to play "catch up" later... ((sigh))

He'll also see Dr. Horne again on Friday, which will mean another echo to make sure Chase's heart function is still looking great. I expect another fantastic report!

Totally random, but can you believe there's only 8 days 'til Christmas? LO has been having a hard time keeping track of how much longer 'til Santa comes, so I helped her out: I bought candy canes for the Christmas tree the other day and had her put 12 of them on (the number of days that were left until Christmas). Every night before bedtime, she takes one candy cane off the tree and places it in her stocking. This way she can visually see how many more candy canes are on the tree and understand how many more days until Santa comes! So far it's working out pretty good. The bonus is that if she's misbehaving, I can "threaten" her by telling her if she doesn't behave, we won't take a candy cane off the tree before bedtime, meaning it will take that much longer for Santa to come. Is that wrong? I dunno. But it works!!! :)

Tuesday, December 15, 2009

Merry Christmas?

I figured that since I posted a lovely picture of Chase on Friday, it might be a good idea to post a few of my favorite pics of LO! As you know, we are living in a little bubble here at our house and are unable to take our little guy out in public until after his next surgery (probably in April or May 2010). So since we can't have him around crowds, especially children, we cannot take him and LO to have their pictures taken. That means we had the joy of doing them here ourselves! Imagine the fun... trying to get a 2-1/2 year old to look at the camera AND smile at the exact moment the 7 week old isn't throwing a major fit. Good times!!

Anyway, I thought this one of LO summed up our first home photography experience... ((sigh))


Can you see the joy and excitement of Christmas sparkling in her eyes? Yeah, of course.

Honestly, this one depicts how she really felt about the whole experience:

Okay, so I didn't go with either of those for our holiday card. It was so hard to get the girl to cooperate! But surprisingly enough, if you put a present in her hands, she's all smiles!

But of course, our 2009 holiday card will feature not one, but BOTH of our precious little angels! We took several shots of LO and Chase together, but this one by far won out as my favorite:

Merry Christmas, right?

Friday, December 11, 2009

Birth Announcement

I've been trying to get a good picture of Chase to use for his birth announcement...

I don't think this is "the one."

Would you agree??

I think he was all smiled out and ready for me to put the durn camera away already!!

Thursday, December 10, 2009

Catalog Shopping

Here's LO purusing the Pottery Barn Kids catalog. And yes, that's Chase crying in the background. It's tough love, people. Our boy's been spoiled and expects to be held 24/7. As much as we'd like to, it just isn't possible. Please don't report us.

Posted from my iPhone

Wednesday, December 9, 2009

Recent Fun

Well, I haven't been posting much lately because there really hasn't been anything overly interesting to share with you guys! The past few days have involved feedings, diaper changes, pumpings, diaper changes, naps, pajamas all day, naps, diaper changes and an occasional shower every now and then. So again, nothing overly interesting to share with you guys!

Yesterday LO and I made cookies! It was a lot of fun! She's getting so good at helping and doing things all by herself! Here she is painting the cookies:

Now it's time to wait for them to finish baking:

FINALLY! It's time to eat the cookies!

Yummy!!


Here's a random shot of my girlie:


I just love her cute crazy hair!

She's good at keeping an eye on her little brother:

He's a really good sleeper!

I totally love his nursery and jungle bedding:

He loves his bouncy seat as much as LO did when she was his age!

Today I finally left my house for the first time since Sunday night. I went to do some Christmas shopping for the kids and desperately tried to find some cute somewhat-matching outfits for them to wear for a good Christmas picture. Unfortunately, there were slim pickin's out there and I was less than happy with what I ended up with. Oh, well! I'll post those pics once I take 'em! I was also on the hunt for some Christmas stockings for the kiddos. My goodness!! What a pain! I got tired of my search and decided to order some online from Pottery Barn Kids. Earlier this evening, I let LO sit with my at the computer and look at all of the adorable stockings available at Pottery Barn. Aren't they SOOOOO cute??


So which one did my "girlie-girl" choose??


Ya. Of all the cute stockings with the snowman, reindeer, Santa, ballerina... my girl chose the train. Ugh. I tried really hard to convince her to choose the snowman but she was NOT having it. Alrighty then. Now I'll have a fun story to share when she's a teenage girl with a train stocking.

So I let her pick out one for her brother. This is what she chose:


Ah, the joys of a 2-year-old! She keeps me young, sort of! So that's pretty much what we've had going on lately! :)

Tuesday, December 8, 2009

Monday, December 7, 2009

What It Means To Be Loved

I heard about this song by Mark Schultz and I couldn't help but share it here. For my friends and family, this might give you a glimpse of what my family and I have been through. For my fellow "heart" families, I know these words will speak volumes to you. I've lived these words and continue to live them each and every day. Praise the Lord for my sweet baby Chase!

By the way... this video isn't the greatest -- just listen to the music and read the lyrics below.



What It Means To Be Loved
~ Mark Schultz

For five months and eight days my wife and I had waited
Gettin' ready for our baby girl
But when he called the doctor said I need to see you
and could you come in soon
then something died inside of me to sit with him and hear
the tests that said our baby may not live to be a year
then turnin' to my wife and he said "whata you wanna do?"
and she said...

I wanna give her the world
I wanna hold her hand
I wanna be her mom for as long as I can
and I wanna live every moment until that day comes
I wanna show her what it means to be loved

so we spent each day, watchin' every minute
and prayin' for our baby girl
and I will not forget the way I felt that moment
when she came into this world
but they took her from the room just as soon as she was born
and watchin' through a window I could see her holdin' on
when a voice inside me said...

I wanna give her the world
I wanna be her dad
I wanna hold her close for as long as I can
and I wanna live every moment until that day comes
I wanna show her what it means to be loved

I said everyday
we've got to bring her home
she's been out to prove the doctors wrong
oh and you should see her now
she's as pretty as her mom
and theres a boy at the front door waiting just to take her to her high school prom...

and he wants to give her the world
wants to hold her hand
and someday she may get a wedding band
but she's gunna live every moment until that day comes
and we're gunna show her what it means to be loved

Oh yeah (what it means to be loved)

show her what it means to be loved
what it means to be loved

Thursday, December 3, 2009

I've Been Keeping a Little Secret...

...We're Home!!!

OhMyGoodness! I'm just full of little surprises these days, huh?! It's been killing me to not share what we've been up to over the past 48 hours or so! See, Chase was discharged from MUSC on Monday, which still completely amazes me (my boy is such a miracle!!!). We didn't tell anybody we'd left the hospital because my mom was coming to Charleston that night and I wanted to surprise her by having her grandson with me when I greeted her at the door (she was quite shocked and excited, by the way). Hubs and I pretty much decided we didn't have any real reason to stay in Charleston any longer than absolutely necessary, so imagine our surprise when found out Chase's ENT follow-up and swallow study aren't actually until the first week of January! Ack! I know, I know... I lied. I told y'all it was next week so that everyone would believe we would be staying in Charleston for another week. I did that because I wanted to surprise the rest of my family and our friends back home by coming home early! So we decided to head home yesterday (Wednesday) with the intent of surprising everybody at our church choir's Christmas musical Saturday night. Only, I decided it would really suck to be home for 3 whole days without telling anybody. So I ended up going to their dress rehearsal tonight and surprising some of my most favorite people on this planet! It was so awesome to see their shock n' awe since nobody was expecting to see me. It was great!! So yes, we're finally back in our home sweet home, and we're not due back at MUSC until the first week of January, which we're planning to be a quick day trip. I'm so very glad to be hoe, but I know it'll be tough because from this point forward, we're on lock-down. We're in a bubble. I can't take my boy anywhere (except Dr. appointments), so my family can't go out to eat, go to church, go visit with friends/family... ugh. I'll probably be really sick of being home soon enough, but for now, boy am I ever enjoying it!!

So yesterday was a L-O-N-G day!! We started packing Tuesday evening and it went on all day Wednesday. We didn't hit the road until 4PM for our 3-1/2 hour trip home. Chase was such a trooper! He did such a great job and literally slept the whole way home! LO did great, too, apparently, but she rode with Gramma so I can't say for sure. You should've seen LO when we got to our wonderful home last night. She was in awe! This morning she woke up, came running out into the living room, and thanked us for bringing her home, thanked us for her kitchen center, thanked us for her toys, etc... It was adorable!!

Chase has been settling in nicely. He's been much more tired and much less hungry the past 2 days, but I'm hopeful he's just getting used to his family home. We have an appointment in the morning with his pediatric cardiologist, Dr. Horne, and I'm hopeful we'll have a great check-up and we'll get lots of information from him about the nuances of caring for a sweet little heart baby.

Whew! It feels so good to get all of this out in the open. I'm horrible at keeping secrets, so I'm sure I'll sleep much better tonight knowing that everybody now knows that my sweet family and I are all finally home where we belong!

Wednesday, December 2, 2009

Just Checking In...

It's been another quiet day here. Chase is still doing fantastic. Not eating as much as I'd like (as much as he had been the past few days), but I'm hopeful he's just having an "off" day and will be back on track tomorrow. So like I said, it's been pretty quiet and there's not much new to report. We're just loving having our family all together finally! We've been waiting for this for so very long... it's amazing! We really do have an amazing and wonderful little baby boy. We're so blessed!

Tuesday, December 1, 2009

Such Joy!!!

It has been absolutely fabulous having Chase here with us and all of my family under one roof. Gramma and Pa Pa have been with us to help with LO, and she's been having such a wonderful time. We brought Chase home yesterday while LO was still napping. When she woke up, he was still in his car seat. She walked into the living room and shouted, "Mommy!" as soon as she saw me. Then she saw Chase... I'm pretty sure for the first time in her almost 2-1/2 years, the child was speechless! It was hilarious! I asked her who that was and she said, "Baby Chase" with confusion written all over her face. We didn't tell her we were bringing him home so she didn't expect to see him here at the house and not at the hospital. It was too cute! She's been really good around him so far, minus the fact that she's so stinkin' loud all of the time! :)

So we have a list of upcoming appointments that need to take place: another hearing screening, a follow-up with ENT, another swallow study, a high risk clinic appointment, the cardiologist in Greenville, a pediatrician appointment and his heart cath procedure in March. Whew!! This boy's gonna keep his mommy busy!

This pic was taken before we left MUSC yesterday -- his first time in a car seat!


Overall things are going just fantastic now that we're all together. Hubs has been simply amazing through all of this. He was so great with Chase last night, getting up for feedings and getting him back to sleep. I am so blessed with such an incredible husband and two of the world's most awesome children! Thank you, God!

Freeze!

Pa Pa taught LO how to freeze! Except she only counts to 2 and forgets to say, "Freeze!"

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Surprise!!!

I've been keeping a little secret...

Chase was discharged from the hospital yesterday!!!

We are so excited!!! He had such a wonderful long weekend and was eating so well that they decided there was no reason to keep him there any longer! So around 3:00 PM yesterday, we left MUSC and brought our sweet boy home! What an answer to prayer! God is so good! We are so very blessed and grateful that Chase did so well and was able to come home exactly 5 weeks after birth -- exactly 4 weeks after his Norwood surgery!

My mom was driving down to see us yesterday and we wanted to surprise her by having Chase here at the house when she got here, so I didn't update the blog, Facebook or Twitter until now so that we could keep our little surprise a secret. But I'm ready to shout it from the rooftops now!!!

We have some follow-up appointments next week with ENT and speech therapy (swallow study), but we will finally be able to head home afterward! This means we'll be home for Christmas! Praise the Lord! I can't wait to get home, decorate for Christmas, and enjoy our new family of four!

Stay tuned for some new pics of our sweet boy soon!

Thank you to all of you for your constant prayers and support for Chase and our family. We are so blessed to have such wonderful family, friends and blog readers! God bless each and every one of you!!!

Saturday, November 28, 2009

No News is Good News!

We're in the midst of a rather quiet weekend here in 7C. I "officially" moved into Chase's room on Thursday so I could be here for all of his bottle feedings, which worked out perfectly since he has excelled at the bottle thing and pretty much went straight to full feeds and eliminated tube feeds from the get-go. What an incredible blessing!!!

So I have to tell you something that I've been waiting to say for a L-O-N-G time (33 days, to be exact): During rounds this morning, the "D" word was finally mentioned to us! That's right!

Discharge!!!

There is a REALLY good chance -- assuming Chase has a quiet, boring weekend -- that we will be discharged early next week! Can you believe it!? I feel like I've been waiting forever for that day to arrive! So here's our game plan: Assuming we are discharged next week, we plan to hang out here in Charleston for an extra week or so while we settle our family of FOUR into our rental house -- all together under ONE ROOF for the first time!!! Hubs and I want to have some time to settle into life with a precious newborn while we're still within a 10-minute drive from MUSC, should anything weird happen with Chase (we don't expect this to happen at all... we're just boy scouts!). We won't know until Monday, but there's a chance we'll need to schedule another swallow study (to see if we can try less-thickened milk and eventually regular milk) and perhaps another visit with the ENT folks to do a flexible bronchoscopy here in Chase's room (to see how he's healing and determine whether or not his paralyzed left vocal cord is showing signs of recovery). SO... although we might be discharged next week, it'll still be another week or two after that before we're able to make the trek back to our home sweet home. But can you believe it? There is a light at the end of the tunnel and this leg of our journey may very well be in its final stages!

Of course once we do get home, life will by no means return to the "normal" we once knew. And not just because we're adding a new member to our family. In reality, Chase is still a very fragile little guy (although he looks so incredibly healthy and normal!). We've been advised that it is extremely important that he doesn't get sick between now and his next surgery, the Glenn, which should take place when he's around 6 months old. So basically, once we're home, we're HOME -- meaning no showing off our little rock star, no church, no grocery runs, no shopping trips, etc. Basically, the only time our little one will leave the house is for his doctors appointments. And our sweet LO will have to follow suit. We don't want Chase getting sick because his sister picked up a cold while at Sunday School, so she'll be living in our family's little bubble, too. I know this is going to be so incredibly difficult for me (all of us, really), but I know it's in Chase's best interest and right now that takes precedence over everything else. So let me just say now that while I'm looking forward to being back home and showing off my amazing son, it'll be a long while before he can make public appearances. I, on the other hand, will still be making solo appearances at church, grocery stores, etc. ;) Aren't y'all excited about that!? LOL!

Well this quick little update turned out to be much longer than I expected! Hopefully there won't be much to share tomorrow (Sunday), but maybe, God willing, on Monday, I'll be able to write the happiest post ever, announcing our discharge plans! Woot!!

Thanks to my sister J for sharing these lyrics yesterday. They fully sum up my feelings regarding God's work in my family's lives!
How can I say thanks
For the things You have done for me
Things so undeserved
Yet You give to prove Your love for me
The voices of a million angels
Cannot express my gratitude
All that I am or ever hope to be
I owe it all to Thee!

To GOD be the glory, for the things He has done!!!

Friday, November 27, 2009

Hiccup!

My little monkey has the hiccups!

Posted from my iPhone

Feeding Success!

Chase has had an awesome few days! He took his first bottle feed Wednesday evening and did fantastic! We did more bottle feeds on Thanksgiving at 9am, 3pm and 9pm. Then today we did 3am and 9am. Basically we've been doing every other feed with a bottle and the others through his ng tube. Well, this morning at his 9am feed he kicked butt and downed 105 ccs (just over 3 oz) so we were given the go ahead to give him ALL bottle feeds and NO ng tube feeds!! Woot!!! AND they are basically letting me be in charge of his schedule, feeding him when he's showing signs of hunger rather than adhering to the "every 3 hours" rule around here. So it's like I finally get to care for him as his MOM!! It only took 32 days to get here!

The added bonus of course is that if he keeps up the great work, the ng tube comes out later this afternoon!!! WOOT!!! We are definitely making progress to get ourselves out the door sooner than later!

We are so very thankful for how God has chosen to work in Chase's life! We know His plans are perfect and He has some great things in store for our baby boy. I continue to be humbled that He has brought Chase through this journey so well up to this point. We are forever grateful to our Lord and Savior for seeing us through the hardest time in our lives and for blessing us with our sweet little Rock Star!!


Posted from my iPhone

Thursday, November 26, 2009

Happy Thanksgiving!

I am so blessed! Words cannot express how grateful I am for the amazing gifts God has blessed me with!

My husband: He is my rock! He keeps me grounded when I feel overwhelmed. He spoils me and takes such great care of me. He does more for me than I deserve and I am the luckiest woman in the world to call him my husband. And if that weren't enough, he is also the most amazing father to our children. We are so blessed to have a loving, Christian man as the leader of our family!

LO: There is no better 2-1/2 year old on the planet! LO has been absolutely amazing on this journey. She's so resilient and has adapted well to her world turning upside-down these past 6 weeks. She's enjoyed spending time with her various caregivers (Thanks, D, Mona, Gramma & Pa Pa!!) and has made things so much easier for us with her (mostly) good behavior. While I might get frustrated with her at times, I so love her with all my heart and couldn't imagine a day without her in my life!


Chase (a.k.a. "Rock Star"): Where do I begin??! This little man has absolutely stolen my heart and ran away with it! I continue to be amazed by his progress through this journey. He took his first full feed this morning by bottle and did fantastic! We're going to start bottlefeeding every other feed now! I'm still anxious to find out what the game plan will be once he's taking all of his full feeds of thickened milk by bottle. God has truly blessed us with an amazing little baby and I cannot put into words how he makes me feel. I'm so proud to be his mommy!


My Family: My mom, sisters, in-laws and extended family have been an amazing source of strength, support and encouragement to me. They have lifted me up when I was down, strengthened me when I was weak and rejoiced with me over God's numerous blessings. I would be lost without them! I am so blessed to live so close to my mom, sisters and their families and see them so often (when we're not at MUSC, of course!). I have the best family in the world!!!

My Friends: Words can't express how incredible it's been to have such amazing friends to lean on for support. They have encouraged me through phone calls, voicemails, emails and text messages. It's a blessing to have awesome friends who are walking with me through this journey and who remind me that I'm not alone.

Thank you to everyone who loves me and my family and for your constant support!

HAPPY THANKSGIVING!

Posted from my iPhone

Wednesday, November 25, 2009

Bottle Time!

Chase went for an additional swallow study this afternoon since they weren't able to gather all the information they needed yesterday. Basically, he didn't take enough of the thickened barium mixture for the doctors to gauge whether or not he could successfully handle a full feed of thickened breastmilk. So back to the lab we went!

I was very impressed with how well he handled the thickened mixture today. He took about 20 ccs in about 2 minutes! That's pretty darn good for a heart baby! We were very pleased that he took the thickened stuff without any signs of aspirating or penetrating his airway. Praise God!

So the game plan is to try to give him his first official bottle feeding shortly -- between 4:30 - 5:00 PM. I can't wait to give it a try and see how he does! My prayer is that he'll take to these bottle feedings VERY well since this in the only thing keeping us here in the hospital. Please say some prayers for my boy and I'll let ya know how he does!

On another note, HAPPY ANNIVERSARY, HUBS! Today's our big 4th anniversary! What a blessing he's been in my life!

On yet another note, Happy Thanksgiving Eve! I hope everybody has a wonderful celebration with family and friends tomorrow!

Tuesday, November 24, 2009

Waiting...

Well, we were told 5 minutes after Chase's first bottlefeeding attempt was supposed to begin that we were going to hold off. When they did his swallow study earlier today, they started with a regular consistency barium mixture and progressively thickened it. By the time they got to the thickest consistency, he tired out (as most single-ventricle babies do) and didn't take enough of the thickest stuff to get a good enough assessment of how he'll do with a full feed by bottle of the thickened milk. SO... We didn't get to do the bottle today. We have to do another swallow study either tomorrow or Friday (dependent on scheduling) to take more of the thickened barium mixture before we try our first bottle feed. That's what this is all about: the waiting game.

Argh.

Please pray for hubs and I (more so impatient little ME) that we'll be able to take this in stride since it's really all in Chase's best interest.

Posted from my iPhone

Swallow Study Results

We finally went for Chase's swallow study this morning at 10:45 AM. He took about 30 ccs of a barium-water mix (eew!) while we watched on the x-ray to see how he swallowed and whether or not he aspirated. From my untrained eye, he seemed to do great! But we met afterwards with the speech therapist who explained the official results to us.

Apparently there are two things that can happen when Chase swallows: the fluid can aspirate, which means it goes down his throat and into his lungs (not good!) OR the fluid could penetrate, which means it starts to go towards his lungs but eventually gets pulled down the esophagus at the last second (not great). In Chase's case, the liquid seems to penetrate a lot, which can be dangerous. Apparently babies don't typically cough if fluid goes down their trachea like adults do, so we wouldn't know he was aspirating. SO... The game plan is that we will give him breastmilk thickened with cereal in a bottle today at 3:30 PM for his first real mouth feeding. He typically gets 78 ccs per feed every 3 hours in his ng tube, so we'll see how much he's able to take through a bottle and give him the rest through his tube. We may attempt another bottle for one of his evening feeds as well. As he shows he's able to handle the bottle feeds, we'll increase the frequency, giving him any remaining milk through his ng tube (so he still gets 78 ccs total at each feeding). Once he's able to take all of his feeds by bottle, we will be discharged from the hospital. But we won't be done with the feeding yet. We'll have to repeat the swallow study in 2 weeks to see if his ability to swallow and not penetrate has improved. If so, we will then decrease the amount of rice cereal being added to his milk so it's less thick. My guess (haven't confirmed yet) is that we'll do that for another 2 weeks then repeat the swallow study again. If he does well, we might then be able to try non-thickened milk. Obviously my goal is breastfeeding, but it appears we're not anywhere near that point yet.

A few things to note... Chase has a paralyzed left vocal cord. Since the cord doesn't move (the right and left should meet together to protect the airway), there is a gap that could cause him to aspirate. We were told today that 90% of babies with this gap typically fail the swallow study, are not given bottles at all and go straight to a g-tube, a feeding tube that is surgically placed directly into his stomach and is used for all feedings. So although we're a bit disappointed that Chase's timeline isn't what we were hoping for, we are happy that he'll be able to at least try bottle feeding. We pray that he does well and will excel with this.

I'm guessing we'll have some more answers and probably more questions after his first bottle feed this afternoon. I'll be sure to keep y'all updated so you'll know how to pray.

Posted from my iPhone

Monday, November 23, 2009

Success!!

Chase's bronchoscopy couldn't have gone better this morning. They took him back a few minutes after 7am and he was back in the PCICU after about 30 minutes!!! The ENT doc said she was able to clear out all remaining tissue from his throat and said the healing that had take place since the last procedure looked perfect! She doesn't anticipate he'll need another bronchoscopy, which means we're on target to move forward with the swallow study tomorrow! Praise the Lord! We are so very grateful for this!

Thank you all for your prayers this morning!!!


Posted from my iPhone

Thursday, November 19, 2009

Moments Later...

Moments after my previous post...

Doesn't he sound great??

Posted from my iPhone

Progress Report

Well, it's been an uneventful few days here on 7C. Chase has been progressing wonderfully with his feeds: he's now up to a 45 minute compressed feed with 2 hours and 15 minutes between them. His goal is 30 minute compressed feeds, which we should be at tomorrow. He's really surprised me yet again and has been processing his feeds like a champ! He has had almost no reflux which is a HUGE bonus!!! I'm so very proud of him. Oh, and he's now up to 9 lbs. 2 oz. which is further proof his feeds are going well.

So we're scheduled for first case Monday morning for Chase's next bronchoscopy. They'll take him back around 6:30 AM for the procedure and he'll head back to the PCICU for recovery, which I'm totally fine with. My prayer is that everything will go smoothly this time and he won't have any major setbacks. Please keep him in your prayers for Monday, too!

Assuming all goes well Monday morning, Chase will finally have his swallow study on Tuesday. This is a HUGE prayer need because we REALLY need the swallow study to go well so we can start working on bottle feeding! Once he's taking all of his feeds by mouth, WE WILL BE DISCHARGED AND ABLE TO GO HOME!!! So you can imagine how critical this is. I don't even want to get into what will happen if he aspirates when he swallows, so just pray that this final last key to the eating process goes well.

My boy has been sleeping the day away and I haven't been able to bring myself to pick him up and hold him since he's so peaceful! See for yourself below! I think after I post this I'm gonna have to get him -- I can't take it anymore!!! :)




Posted from my iPhone

Tuesday, November 17, 2009

Rest & Relaxation (sort of)

Today is the first day in I-can't-remember-how-long that I've spent the morning at home with LO all by ourselves. In fact, the more that I think about it, this may actually be the first day since we came down to Charleston that I'm at home with her alone! Wow. I'm really enjoying our time together. It's just like how it "used to be" when I stayed at home with her while hubs was at work before this fun journey of ours began. So let's talk about why I'm at home with LO...

As you may recall, Chase was admitted to the pediatric step-down unit, 7C, on Sunday morning. So I went to the hospital Sunday morning and stayed there for about 36 hours straight. Let me tell you: 7C is no picnic. Chase pretty much slept most of the day Sunday. I attempted to sleep Sunday night on the lovely little plastic couch provided, but it was not happening. It never happened. So my hope was that I could make up for it Monday while Chase slept during the day... notsomuch. The door to our "private room" was a revolving one the entire day! From the expected visits from the nurse to bring his food and meds, to the maintenance folks coming in to "repair" the damaged window blinds, backed-up sink or squeaky door (none of which were fixed, by the way), to the random visits from several others, it was a tough day all around. And you can imagine how easy it was to stick to my pumping schedule with this kind of chaos. Of course my Monday started off nice and early with the ENT doc telling me Chase would need a repeat of last Wednesday's "routine" procedure. Needless to say, by late Monday, I was exhausted, both physically and emotionally.

My game plan was still to stay at the hospital Monday night, but hubs just wasn't having it. He gave me the whole speech about me running myself down, not getting any sleep, ending up sick, being useless to everyone, and so on... I knew he was right, but I wasn't sure I could bring myself to leave my precious baby boy in the hospital overnight all by himself when I had the green light to stay with him 24/7! I was a basketcase. This was the hardest thing ever. I cried when I was walking out of the unit around 11PM last night. It was as difficult as that first night I had to leave him in the PCICU after I had been discharged from the hospital. But ultimately, I have to keep reminding myself that this truly is in everyone's best interest -- especially Chase's -- as I can't be any good for him, LO or hubs if I'm exhausted and sick.

So I got up this morning intending to head back to the hospital, but unfortunately (and not surprisingly) I was not feeling well this morning at all. I slept well, but obviously needed much more to get myself back in shape. So my wonderful husband headed to the hospital to spend the day with our son while I stayed home with LO. It was great. I'm still in my PJs. We played, watched Dora, ate lunch and now she's napping. I was able to make a casserole for dinner tonight and put it in the fridge, empty the dishwasher and tidy up the living room. It's amazing the new joy these mundane tasks bring me now that I've been through what I've been through over the past 3 weeks. And I'm very happy to say I'm feeling much better as well!

So since I have a good solid hour of "free time" right now, I'm going to end this post and take myself a lovely, much-needed nap. Hopefully very soon we'll have an update regarding when both Chase's "routine" bronchoscopy and swallow study will be scheduled so I can have you all praying during those times. Thanks again to all of my blog readers -- friends, family, strangers -- who have been lifting my family up in prayer throughout this journey. I know God is with us and has never left us!

I will leave you with the words of a song that so encouraged and inspired me last night during one of my darkest moments so far on this journey. Thanks, Jen, for allowing God to use you to share these words with me at just the right time!

All things work for our good
though sometimes we can't see how they could.
Struggles that break our hearts in two
sometimes blind us to the truth.
Our Father knows whats best for us;
His ways are not our own.
So, when your pathway grows dim,
and you just can't see Him,
Remember He's still on the throne.

God is too wise to be mistaken.
God is too good to be unkind.
So when you don't understand,
when you don't see His plan,
When you cant trace His hand, trust His heart.

He sees the Master plan.
He holds the future in His hands.
So don't live as those who have no hope.
All our hope is found in Him.
We walk in present knowledge,
but He sees the first and the last.
And like a tapestry, Hes weaving you and me
to someday be just like Him.

God is too wise to be mistaken.
God is too good to be unkind.
So when you don't understand,
when you don't see His plan,
When you cant trace His hand, trust His heart.

Monday, November 16, 2009

Step Back

Last night was a bit rough in terms of sleep for mommy, but little Chase had a pretty good night. He seems to be taking to his new room on 7C quite well. Unfortunately, it's time for yet another step backwards.

The ENT folks came through this morning and did a flexible scope bronchoscopy on Chase here at his bedside. I was completely devastated when the doctor said she'd need to repeat last Wednesday's procedure to remove some additional granulation (scar tissue) from his throat. I could not believe it. You can imagine the fears and concerns that overwhelmed me when I heard this. There still isn't a clear explanation as to why Chase coded and required CPR after this procedure last week, so I'm less than confident they know how to prevent it from happening again. I am so scared!!! Plus, he'll probably have to spend the night after the procedure -- you guessed it! -- back in the PCICU. This isn't a big deal. What I'm less than excited about is I'll have to pack up our room here on 7C for the night and probably be put into a different room the very next day. ((sigh))

They also put off his swallow study until later this week since he apparently needs to be on one-hour compressed feeds and right now he's on two-hour feeds. I was looking forward to the swallow study because I just have this feeling that he's going to excel at it and that we'll move forward with mouth-feeding by bottle and eventually (hopefully) able to start breastfeeding. So ultimately today has turned into a series of steps back and/or a lack of progress forward.

I know, I know. Everyone said this would happen. I should have seen it coming. But truly, the idea of Chase repeating the bronchoscopy procedure in the OR again has me beyond frightened. What if they can't bring him back like they did last time?? I've been in tears over this all morning. I know God is still here and still is in control of Chase. I know He has a perfect plan for my son and I do believe His plan involves complete healing. He is with us through this journey. But I'm still human, I'm still a mommy, and I'm still afraid.

Sunday, November 15, 2009

Movin' on Up!

This is my first official blog post from 7C! That's right!! We made it! Chase has been an absolute super-star and has exceeded our expectations a hundred-fold with his recovery. Tomorrow he will be THREE WEEKS OLD!!! And tomorrow also marks TWO WEEKS since his Norwood surgery. I still can't believe we're upstairs already. It should be interesting to see how it will be living here at the hospital with Chase while hubs is home with LO. In fact, tonight will be the very first night hubs and I have spent apart in the almost 4 years since we got married (Nov. 25th)! What a huge and significant day today is! Of course it's also my very first night with my sweet baby boy and I couldn't be more excited about plans that DON'T involve a good night's sleep! LOL!

Here's our first picture of our little champion rockin' out on 7C. More to come later!

Saturday, November 14, 2009

Next Steps

Today was yet another quiet day, which we are VERY grateful for! Chase spent most of the day napping and chilling out. I got to spend some quality time with him in my arms again today -- WOOT!!! They did another echo on Chase and everything looks fantastic! Praise the Lord! Also, he got up to full continuous feeds so they've started compressing his feeds so he gets his full amount in less time. So far he's handling it well!

So as OT (the occupational therapist) was working with Chase (while I was still holding him, thankyouverymuch!), I noticed Chase's nurse started packing up his things out of his drawers, put them in bags and placed them under his crib. I knew there had been some discussion about us moving up to 7C, but I hadn't heard anything definite. After OT finished, I asked the nurse what the game plan was. She mentioned that the ball was rolling and Chase would be moving up to 7C tonight!

Whaa??


I couldn't believe it! I made absolutely sure Chase wasn't going anywhere for at least 20 minutes because I needed to go pump (TMI?). Anywho... I came back about 20 minutes later and his things were all unpacked back into his drawers and the nurse said Dr. Hsia said he wanted to wait until tomorrow to send Chase upstairs.

Oh.

Really, I didn't mind the wait. We certainly aren't in any hurry to get out of the PCICU -- the care there is very good and we are "comfortable" with our current routine. There are a lot of unknowns as to what things will look like once we get to 7C and I'm staying at the hospital with Chase 24/7 in his private room. So I asked why the change and the nurse said Dr. Hsia didn't really give a reason, which didn't surprise me. She mentioned that she thought the attending Pediatric Cardiologist may have made the call to have Chase moved upstairs without first getting Dr. Hsia's sign-off. Hubs and I have talked with Dr. Hsia a LOT and he is fully aware of how conservative we are. He's the same way, so we're guessing that was part of the deal. Like I said, we're fine with it mostly because it means one last good night of sleep for me, plus more time to pack my things for the hospital, and of course another night of care in the PCICU. So there's a VERY good chance that this time tomorrow, I'll be posting from 7C! Ack! Things will get a bit crazy then as I will be living at the hospital with Chase and hubs and LO will be staying here at our rental house. Should be interesting!

Early next week (hopefully Monday), Chase will do a swallow study where he will drink liquid mixed with barium while a radiologist takes video x-rays of his mouth and throat to determine how liquid passes into his esophagus. They basically want to determine that he will be able to successfully swallow breastmilk without aspirating on it. I'm slightly concerned about how he'll do with this only because he has a paralyzed left vocal cord as well as the area in his throat that had some granulation (which was removed during last Wednesday's procedure). My hope and prayer is that he will continue to amaze us with his outstanding recovery and that he'll pass the swallow study with flying colors! If he isn't able to drink the breastmilk without aspirating, they'll try to thicken the milk to make it less likely for him to aspirate on it. If this ends up being the case, it will definitely rule out breastfeeding for awhile. :( He may also end up keeping the ng tube (it goes through his nose into his stomach) for awhile as well, possibly even after we're discharged. There are a lot of variables and unknowns right now regarding how well he'll do with the swallowing part of eating, but I'm happy to say he's exceeded expectations with his sucking reflex! That means we're making progress towards mouth feeding... so please pray that he'll do great with the swallow part!

Ultimately our goal is to get our family back home! So the next step is moving up to 7C. Then we'll have the swallow study and work on getting our boy to eat his full feeds by mouth. From what I've heard from other families with heart babies, the feeding part is the biggest hurdle to get over before going home! I'm so happy Chase is making such great progress and I will continue to pray that my sweet boy learns how to eat quickly so we can keep up our momentum and get back to our home sweet home!

Thank you for your continued prayers for my baby boy!

Friday, November 13, 2009

All Clean!

Mommy gave Chase his bath tonight for the first time! It was a tiny bit tricky, but nothing I couldn't handle. Once we move up to 7C, I'll be the one and only person in charge of his care, so it was nice to get a quick trial tonight with a nurse standing nearby for support. Check out my cutie, wearing his very first outfit -- at only 18 days old!






This is kinda hard to see since the lights are low in the PCICU right now (it's after 11pm), but here's my little man with his daddy!


Posted from my iPhone

Hoarse

My poor sweet boy! He still has a paralyzed left vocal cord so he sounds very raspy and hoarse. The good news is it's actually improved a bit from last week. The bad news? It's just plain pitiful!

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LO Says Hi!

So hubs, LO and I are headed to the local outlet mall to do some shopping while Mona sits with Chase (he's doing great, by the way). I've been wanting to get out and do something "normal" for a bit before all of our family "help" leaves tomorrow and we're down to just the four of us. Plus, there's been talk about us stepping down to the pediatric floor, 7C, in the next day or so, and when that happens, I won't have much control over my time as I'll be staying at the hospital 24/7 with my little guy. Woot!!

Anyway, I figured it's been awhile since I've posted something about our precious little one, so here she is in the car with her abbreviated version of "Twinkle, Twinkle." Enjoy!

Posted from my iPhone

Thursday, November 12, 2009

Content

Our little guy is having a nice, quiet day today. This is a much-needed break from yesterday's fiasco! He's been awake and alert and very content, which makes me feel good. After some prodding and nagging on our part, they finally restarted his feeds around 9AM. He hadn't had anything in his tummy since 4AM yesterday morning, the poor guy! I think the food is a big reason he's so happy today. As result of yesterday's mishap, he still has an arterial line in his leg and a foley catheter which means I still can't hold him. I'm hopeful these lines will be out tomorrow morning and I'll be able to get him in my arms again then.

Thanks to everyone for your continued prayers for our sweet little Chase. God isn't through working a miracle in his life. Stay tuned!!!


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Wednesday, November 11, 2009

Apology

I'm sorry about my last few posts today. It's been a very frustrating and difficult day -- not at all what I had expected.

We got back to the PCICU around 9:30 PM and I was able to speak with his nurse again. After discussing what transpired during shift change this evening, she mentioned a few more details she had left out when I called earlier. Bottom line was she didn't feel as though Chase was truly ready to be extubated and thought it would be best for him to wait. She did admit there was a LOT going on in the unit at the time, which really didn't make me feel any better about her decision, but I'm happy to say Chase is being extubated as I write this. We should be able to see him in a few minutes.

I guess I just wanted to apologize for my negative attitude when writing my posts today. I just haven't been in a good frame of mind after all that's happened today. Please forgive me!


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Seriously?!

Just found out my son finally woke up after his tumultuous afternoon around 7:15 PM and the doctor ordered for him to be extubated. Unfortunately the nurse was busy and needed to get report on another patient so she gave him some morphine instead and decided he'd probably wake up again around 9PM and he could be extubated then instead.

Seriously.

Two extra hours of being on a ventilator that he doesn't need. Two extra hours of that endotracheal tube resting on his sensitive throat right where he was operated on earlier today to remove the irritation caused from him being intubated for almost 2 straight weeks! Two extra hours of TORTURE for my son!!!!!

This is NOT a good day.

Stable

My boy is stable. We're waiting for him to come out of the anesthesia so we can CPAP him and get that durn breathing tube out.

So here's my baby before his minor procedure:


And this is him now:


It hurts this momma's heart to see my baby like this again, knowing I can't hold him for who knows how long. I'm just grateful he's stable and there's no sign of permanent damage as of yet.

Please keep praying!!!

Posted from my iPhone