Valentine's Day 2013

I've never been big on the idea of Valentine's Day.  No real reason...just never really been in to celebrating it.  Maybe it's because I'm still recovering from all the Christmas celebration.  Whatever the reason, just never a huge holiday in my household.  

This year however...things were a little different.  I see Valentine's through a different light now...I will never look at a heart in the same way again.  Every time I see a heart now I think of my sweet girls and how they have stolen my heart (Matt too of course...love you ;).  Anyhow, if there was ever a day to celebrate what we have been given it's Valentine's Day.  

Kate was all on board with this idea.  Abby slept through most of our party, but she was most certainly the guest of honor.  We woke up to heart brownies for breakfast on a heart tablecloth with stuff to make Valentines all around us.  Pink, red, and purple balloons littered the playroom and red sparkly hearts hung from the doorway.  What a fun day indeed.  I was woken up with a dozen beautiful hot pink roses and a box of chocolates.  What a sweet hubby I have!

We spent the day pretty much doing whatever Kate wanted.  This means that by the end of the day my house along with all three of us were covered with pink glitter, stickers, and hearts.  

Like I said, I will never look at a heart in the same way again.  I see hearts in everything, and they remind me of my sweet Abby...they always will! What a perfect holiday for her.

I had big plans for an adorable picture in their matching outfits...this was the best I could get! :)

After all, I guess Valentine's day is a day to celebrate love.  My love for these two sweet girls just consumes me sometimes.  It's almost too much to take, and it brings me to tears.  

It seems these days, that a lot of things bring me to tears...anger, grief, jealousy, love.  I cry because I'm angry that this had to happen to my sweet girl.  That she has to go through the surgeries, the pokes, the prods. It's the cliche, "It's not fair!" You know what...it's not fair though. It makes me MAD...the kind of mad where all I can see is red. The kind of mad that makes you want to scream at the top of your lungs! It makes me angry that Abby will be "used" to taking meds, going to see the doctor, and going to the hospital.  I would rather have to drag her kicking and screaming like a child that doesn't know this reality.  It makes me angry for Kate, that she will also know the reality of having a "sick" sister...that she will have to go see her in the hospital after her surgery, and know that kids actually do get sick.

I cry out of grief for the way I thought things would be.  Every now again I allow myself to mourn the fact that our life will never be "normal." We always have to think ahead, and plan around doctor visits, medication times, and "viral seasons."  Now I know many of you will say that I should be thankful that I have my sweet girl to worry about, and I am.  I thank God numerous times a day for keeping her here with us.  I don't know what I would do without her, and I would take this life with meds, surgeries, doctor appointments if given the choice as opposed to a life without her anyday.  However, I am allowed to feel this feelings, and work through the curve ball we have been thrown.

I cry out of jealousy...sometimes I envy other families with their children.  I envy the fact that they never have to think that they may live a day without their child.  Yes...sometimes that thought crosses my mind, and it absolutely terrifies me! They walk around completely sheltered from these thoughts.  I hope and pray that I never have to be without either of my sweet girls.

I cry about all of these things because of LOVE.  I love these girls so much that I only want the best for them.  I only want them to know no pain, never have to get stuck by a needle, have heart surgery, stay in the hospital, have their heart broken, or even a splinter for that matter.  I love them with every ounce of my being...I've never known a love like this before.  So while I work through all of these emotions (which I know will take awhile), I choose to focus on love.  I choose to focus on what we have been given to get me through those hard and dark times, and sometimes have brownies for breakfast! 

So while life may not "be fair"...it's ok because it's all WORTH IT!

Wherever You Are My Love Will Find You

By: Nancy Tillman

I wanted you more than you will ever know;

so I sent love to follow wherever you go.

It's high as you wish it. It's quick as an elf.

You'll never outgrow it...it stretches itself.

So climb any mountain...

climb up to the sky!

My love will find you.

My love can fly!

Make a big splash! Go out on a limb!

My love will find you. My love can swim!

It never gets lost, never fades, never ends...

if you're working...

or playing...

or sitting with friends.

You can dance til you're dizzy...

paint til you're blue...

There's no place, not one,

that my love can't find you.

And if someday you're lonely,

or someday you're sad,

or you strike out at baseball,

or think you've been bad...

just lift up your face, feel the wind in your hair.

That's me, my sweet baby, my love is right there.

In the green of the grass...in the smell of the sea...

in the clouds floating by...at the top of a tree...

in the sound the crickets make at the end of the day...

"You are loved. You are loved.  You are loved," They all say.  

My love is so high, and so wide and so deep, it's always right there, even when you're asleep.  

So hold your head high, and don't be afraid to march to the front of your own parade.  

If you're still my small babe or you're all the way grown, my promise to you is you're never alone.  

You're my angel, my darling, my star...and my love will find you, wherever you are!

Abby Reese 4 Months!

This little sweet thing is 4 MONTHS OLD!

Weight: 13 lbs. 2.8 ounces (44th percentile

Length: 24.25 inches (55.96th percentile)

My Oh My how she has grown!

Can you believe it?!?! I know I can't! What an adventure it has been, and what joy she has brought to our lives.  We can not imagine our lives before her or without her! She is such an amazing baby.    The girl never cries...and I mean never.  A little fussy here and there when she's hungry, but that's really all. She usually wakes up anywhere between 7-8 and is ready to play.  Abby will play on her play mat while Kate eats breakfast.  Then we play with Abby and take her medicine.  We usually go to the playroom as Abby is mesmerized by everything Kate does, frankly so am I sometimes ;).  Abby then takes a little nap in the morning, and wakes up about the time Kate goes down for her nap.  Mommy and Abby then get to spend some quality time.  She has yet to take a nap in her crib.... I'm a firm believer that babies are made to be held.  They are created to need YOU! Therefore she's held...don't judge! :)

The afternoon consists of more of the same.  Playing and staring at these two beautiful girls that I have been blessed with (sometimes I'm more "blessed" than others) haha.  At night, she likes to be cuddled, loved, and fed until it's time to go sleep.  She loves and I mean LOVES her bath.  The bathroom is so wet when she's finished.  She smiles and giggles and kicks kicks kicks.  We love watching her! There's nothing better that a freshly bathed baby.  I could just eat her up! She usually goes down somewhere between 8-9 and will sleep anywhere from 6-10 hours.  Daddy brought up moving her back up to her room...I'm just not ready for that yet.  She'll be a big girl soon enough! 

Heart walk for Abby

This past weekend (February 9th), we did the It's my heart, heart walk for this little princess!

We had such a great time! It amazed me how many people were there, and are affected by CHD.  I had mixed feeling when we arrived.  It was hard realizing that we were now one of "those" families.  I don't mean that in a bad way at all.  It was just that now we had a "cause" to walk for.  We've done numerous walks before, but never with a purpose other than to beat our previous time :).  

Looking around you see how many people CHD (congenital heart defects) affects.  Who knew there was such a large population.  Even though it made me sad at times, it also overwhelmed me with all the support.  Every family had T-shirts with their person on it! The love that was there was amazing!  We saw many people who had taken care of Abby as well as friends from the hospital.  It was encouraging to see all these kids with heart defects keeping up with our energetic Kate! Next year we plan on getting a team together and do some real fundraising.  It was kind of a spur of the moment this this year...fun nonetheless.

Kate had a wonderful time with all the bounce houses.  I think there were about 10 of them! There was music, dancing, everything a girl could want...even Minnie Mouse (who we weren't so sure about).  We took Kate to lunch afterwards to finish off our day! 

Kate relaxing after lunch

On our way there

Hope to see you there next year!

CHD Awareness Week

CONGENITAL HEART DEFECT AWARENESS WEEK

So, did you know that February 7-14th was congenital heart defect awareness week? Me either....until now.  It's one of those things that you have no clue about until it affects your directly!  Now it is such a huge consuming part of my life.  I came across a website/resource for families/general public about CHDs called It's my heart.  It's amazing the amount of knowledge that is out there, yet the dire need for funding.  Did you know....

• Congenital Heart Defects are the #1 birth defect worldwide
• Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide
• About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year)
• Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects
• Each year worldwide 100,000 babies (under one year old) will not live to celebrate their first birthday
• Each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their first birthday
• The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year
• Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research
• The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD
• Though research is ongoing, at least 35 defects have now been identified
• Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood
• It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications

This website provides information as well as ways you can help.  If you feel inclined, please take a moment to look over it! 

Weekend

What a fun weekend! We always look forward to times when we can all be together...doing something FUN! This past weekend I finally got to get my hair done ( which if you know me you know is VERY IMPORTANT).  Matt was wonderful enough to watch the girls all day Saturday so I could have a little time to do some things I needed.  
Sunday consisted of a long day at Memorial Park.  We all slept in until 9:00 which was A-MAZING! Took our time getting ready, and then headed to La Madeline to get some picnic food.  We all sat on a blanket and enjoyed the beautiful weather (Living in Texas has it's perks!).  There is a huge playground which Kate loved.  We then came back and took a family nap! Hope your weekend was as wonderful as ours!

This Little Lady slept for 8 hours! Keep your fingers crossed it happens again tonight! 

Kate is TWO

Katherine Ann

Kate...oh Kate!

  You are TWO....

You are two in every sense and meaning of the word!

You are sweet with a whole lot of sass.

I can't believe that you are so big now.  I remember going to the hospital to have you like it was yesterday.  I know every mommy says that....but I really do!

You have the prettiest blonde hair that lightens in the sun...the type of blonde hair that mommy pays Claude lots of money for.. You have piercing blue eyes and big full lips.  

Your poor dad will surely be chasing the boys off before we know it.

You are SASSY and independent.  Your favorite words are "Kate's" and "No" You are not real big on the whole idea of sharing quite yet...

You love your playroom...which is always a disaster! You play kitchen, dollhouse, dress-up, and baby dolls.  I hear you in your playroom singing to your baby dolls.

You love being outside.  Your sand and water table is one of your favorites, and there is always a fit when it's time to leave the park.

You eat oatmeal everyday for breakfast with your "bunny yogurt" and "yellow juice"

When asked who your best friend is, it is always Minnie Mouse followed by Abby after a little prompting from Mommy and Daddy

You LOVE, and I mean L-O-V-E Minnie Mouse.  You are starting to branch out a little with Strawberry Shortcake, Barbie, Nemo, Princess Sophia and a few others, but Minnie will always be your first love.

You can throw a tantrum, and I mean the limp noodle, leg throwing, blood curdling scream tantrum.  You have it perfected! I mean, what else is a girl to do if she's not getting her way.  Sometimes I wish I could throw one with you.

Your blankets have to be placed on you in a certain order before you can go to sleep, and that is AFTER we brush teeth, talk for awhile, read A LOT of books, and say our prayers.

You love bathtime! You squeal and splash.  The bathroom and everything in it is drenched by the time we're finished.  You run in the other room and cuddle with us in your towel so you don't get "COLD" as you say. You then make me massage your feet with lotion 

You are a character, always good for a laugh, my sunshine, my world, and most importantly...my heart.

You live life with such vibrancy! 

I love watching you explore and learn about new things.  You are so inquisitive...everything must be touched!

You have no fear...except for the occasional truck driving by while we're in the backyard.  

I love you more than you will ever know.  I love kissing your adorable cheeks, and brushing back your soft hair.  

I love how you run into our arms every time we come home like we've been gone for days

I love the way you call my name

I love the way you bring me something you found just to show me

I love how you need kisses on every bump and bruise before you can carry on

I love the way you crawl up in my lap and want me to read you a book...the same book...10 times

I love how you play with my hair when I'm rocking you to sleep

Sometimes when you're asleep your dad and I sneak up just to take one more look at you.  

You are PERFECT...just pure perfection 

I know one day you will be a teenager that is too cool to be seen with Mommy and Daddy

So for now, I will savor every tantrum, every kiss, every hug, every breath, and every passing minute because I know this won't last forever... 

AND

I want to REMEMBER every ounce of it!

I love you my sweet girl!

Miss Abby Reese

Abby Reese 

Born October 10, 2012 

5:35pm

6 lbs. 15 ounces

20 inches long

B-E-A-U-T-I-F-U-L

Abby was born after only 6 hours of uneventful labor.  She came with a sense of peace around her, looking around just taking in the new world she now belonged to.  The next few days were pretty standard filled with cuddling, feeding, and getting to know our new bundle of joy.  The night before we went home we sent Abby to the nursery around 12:30 am for the first time.  We needed some sleep seeing as how we were going home to her big sister Kate who is a big ball of energy.  

Around 3:30am Dr. Caplan, the neonatologist called to let us know that our nurse Mia had noticed Abby turning blue while she was changing her diaper.  She didn't feel comfortable keeping her in the nursery so they would be sending her to NICU 2.  They said we would be allowed to see her in just a bit, but we couldn't wait.  We walked over to NICU 2 and saw that they were wheeling her out.  They were taking her to NICU3.  The NP came out to let us know that they had heard a new systolic murmur that was not there before therefore they needed to investigate.  We were sent back to our room while they tucked her in.  We kept calling, and they promised they would update us as soon as possible.  

Dr. Caplan came to our room with the cardiologist to speak with us.  It is all such a blur, but I remember the cardiologist start to draw a picture of her heart, and I lost it.  I knew it wasn’t normal, and I just started sobbing.  Matt saw my reaction, and almost passed out.  They told me I had two options to go to TCH or Hermann.  It was never a question.  I just remember thinking, “This is a lot, this is a lot.” I knew everything that was coming.  Sometimes naivety is a good thing…which I didn’t have the luxury of having.  Matt and I both called our mothers to let them know what was going on.   A few hours later we were finally able to see our sweet baby.  It’s hard to describe how helpless you feel walking in and seeing your baby hooked up to monitors, lines, tubes.  It’s awful…the last time I saw her she was sleeping on my chest, and now she’s hooked up to so much.  I just wanted to pick her up and run.  The transport team brought her to TCH, and I rode with her in the ambulance.  I still don’t know if I was ever discharged.  

That day was such a whirlwind.  I just remember Abby having test after test, and I still don't know what I was doing that whole day.  Matt and I mostly sat and stared at her.  My friend Alison came up to be with us as well.  My mom flew in later that day, and Matt's parents were with Kate.  Dr. Heather Dickerson sat down with us after all the tests were complete to go over Abby's diagnosis as well as treatment plan.  Her diagnoses are: heterotaxy with asplenia (no spleen), also called right isomerism, right dominant AV canal, AVSD (atrioventricular septal defect), DORV (double outlet right ventricle), D-TGA (dextra-transposition of great arteries, and infracardiac TAPVR (total anomalous pulomonary venous return.

In order to fix her heart she would first need to repair the veins.  At first we thought that would happen immediately or the next day.  Luckily for Abby she allowed us the luxury of waiting until she was 5 days old (that next Monday).  She would also require the GLENN procedure as well as the FONTAN to help her achieve the single ventricle physiology.  The weekend before the surgery was pretty uneventful for lack of a better description.  Of course we were devastated, but at least we were allowed that time to just love on our sweet girl.  Dr. McKenzie (her surgeon) came in the Friday we arrived to go over the surgery with us as well as the Sunday before to just check on her.  

October 15, the day of the surgery was one of the longest days in our lives.  Abby’s first surgery was to repair her pulmonary veins.  They had thought she might need surgery on that first day (10/12/12).  However we were able to hold off until the 15^th of October.  I remember Dr. McKenzie coming in that Sunday before and telling us that tomorrow was the day. We spent that night holding her, reading to her, and telling her how much we loved her and how strong she was.  They were supposed to come around 8, but ended up taking her around 9 am.  I remember that day the anesthesiologist, Dr. Moussad came in and the first thing he said was “Have you prayed today?”  I told him yes, and he replied, “Good, I have too.” A sense of peace came over me at that very moment.  I knew everything was going to be OK.  We received updates every hour throughout the day.  We had our family bring our other daughter Kate up to the hospital to keep us distracted.  During this surgery they had to stop her heart for the majority of the surgery in order to repair the veins.  Dr. McKenzie came to give us his update around 3pm, and told us she did wonderfully! Just like the rock star we knew she was.  We were able to see her around 4pm that day.  

As they were wheeling her to surgery

The next few weeks were spent recovering the the ICU, and then the floor.  We titrated her meds to get her blood pressure under control, and spent hours upon hours teaching her how to eat again.  This was the hardest part for me I think.  All I wanted her to do was eat...and she wasn't having it.  It took awhile and a lot of blood, sweat, and tears, but we finally got there.  It was is one day she said, "Hey...this is good!"  I can not say enough good things about everyone that was involved in her care, as well as my co-workers and friends in the PICU.  My friend Alison set up meals for us.  Every night we were there one of my co-workers brought us a nice warm meal.  It touched us so deeply to see the love and compassion that everyone was showing us.  Finally on November 5, we were able to take our sweet baby home and begin our life as a family of four!

It was definitely an adjustment getting used to our new life at home.  Kate was so excited to see Miss Abby, and wanted to hold her all the time.  Abby certainly loved being at home and was definitely thriving.  She was followed by the single ventricle team at TCH.  This consisted of cardiology appointments at least once a week as well as monitoring at home.  We weighed Abby every morning as well as checked her pulse ox (oxygen levels) multiple times a day.  We had very specific instructions on when to call.  One of our main goals was to get Abby to gain weight.  We would fortify the breastmilk in order to make it 24 calories/ounce instead of the usual 20.  She was also receiving meds 6x/day.  We would wake her up every 3 hours to eat as well.  She was a real sleepyhead so we could not really hold her while we fed her....she just got too comfy and would fall asleep.  We had to hold her in her crib and leave her uncovered while we fed.  That broke this mommy's heart, but I knew it was what had to be done.  Abby was doing great at home, but we started to notice her sats were dropping pretty rapidly.  We let Dr. Dickerson know, and we went on in for yet another ECHO on December 7th.  The ECHO was pretty much the same so we did another CT angio.  It showed that her PA was becoming very narrow therefore restricting blood flow to her lungs.  The decision was made that she would need a BT shunt to provide more blood flow to her lungs until she was big enough for her GLENN.  Luckily, we were able to go home that Friday before we had to return on Sunday.  The next day we took Kate to have a pancake breakfast with Santa! It was nice to have an outing with her before we headed back to the hospital.  

We were called in on Sunday, December 9th around 5pm.  Needless to say, I was a wreck.  I did not want my 2 month old to have to go through ANOTHER surgery...it just wasn't fair.  Dr. McKenzie came in later that night to see Abby and go over the surgery with us.  After seeing her, he decided that he would probably go ahead and do her GLENN!! We were so excited.  That night we just loved on her once again.        

They came to get us around 9am, and took us to the holding room.  Soon thereafter they came to take her to surgery.  Once again we received updates every hour until the final update from Dr. McKenzie.  He informed us that he was in fact able to do the GLENN.  YAY! This meant no more surgeries for a very long time.  She did wonderfully once again, and was recovering peacefully.  
The recovery from this surgery was much more difficult.  Abby was so uncomfortable.  She had a headache from the surgery while her blood flow was learning its new path.  She developed a chylous effusion, and had to have another chest tube placed which was also painful.  The treatment for this effusion is a non-fat diet for 6 weeks.  Let me tell you how well that went over.... Abby was not having it.  The formula Enfaport caused her to be so gassy which just added to her discomfort.  She absolutely refused to take it...was NOT doing it! We spent a few days on the floor working with her to try to get her to take it to no avail.  One morning Dr. McKenzie walked in to check up on her.  He asked how we were doing, and I voiced my frustration with the new formula.  He looked at her x-ray, and since it looked so good he said to go ahead and put her back on breastmilk! She took it right away! We went for a follow up x-ray the next day which was clear so we were able to go HOME!! We went home the second time on December 20th just in time for Santa to come see us at our house.

Since being home, Abby has done wonderfully! She is like a whole different baby, and just as happy as ever.  She is so smiley, so so smiley.  She loves being home! We are only on meds 2x/day now, and follow-ups about every month.  We no longer have to wake her up to eat, and do not have to fortify the breastmilk.  She sleeps for 5-6 hours a night.  Abby loves her playmat, watching her sister, and cuddling mommy and daddy! At her last cardiology appointment her ECHO and EKG were "pristine." We were able to take her off one of her blood medicines (propranolol), and wean her lasix down to once a day.  Hopefully next time we can come off of it.  All in all an A+ for our little rock star!

Thank you everyone for all your support, prayers, and kind words! We appreciate each and every one of them.  Please keep them coming!