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!"

Posted from my iPhone

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!!!