February 23, 2011

One Year Ago Today

A year ago today, on February 23rd, 2010, we handed over our precious daughter Alexa to endure a nine hour open heart surgery.  The doctor described this hurdle in her life as trying to cross through the Grand Canyon.  It was a complex surgery, a risky surgery and a much needed surgery.  In the weeks and days leading up to the surgery many tears were shed.  And many many conversations with God exchanged.       

Our Warrior Princess ~ Rastelli Surgery ~ Feb. 23, 2010

Driving her to the hospital the day before surgery for all the preop testing was painful.  As she looked at me with her beautiful sweet eyes filled with pure trust, love and innocence, I couldn't help but feel like we were betraying her.  My heart silently shattered into a gazillion little pieces. 

Driving to the hospital ~ look at that sweet face!

On the morning of the surgery, we were at the hospital bright and early.  All the papers were signed, all the testing was done, all that was left was to get her in her hospital cap and gown and to hand her over.  We were greeted by the surgeon and anesthesiologist with warm smile and of them holding a hot cup of Joe in their hand.  We found out they had been up all night doing an emergency operation on another child.  My nerves were raised even further knowing they had not had a fulls night rest and yet my daughter's life lay in their hands.  The Child Life Specialist was there to give Alexa some fun toys to distract her from the hospital commotion.  She smiled but clung to me with a dreary apprehension of the events unfolding.  She knew something was up.  My husband and I tried to remain composed.  We took some last minute pictures.  We smiled on the outside but were truly slowly dieing on the inside.  They brought her over some 'happy medicine' to make her feel calm and cozy.  The anesthesiologist warned us that as soon as the medication started taking effect he would then quickly and swiftly take her away ~ no prolonged goodbye's would be possible.  After about 5-10 minutes we could see she was relaxing and had this big happy silly grin on her face.  Seeing her like this made us smile through our tears.  And so just like that, the anesthesiologist showed up, she was out of arms, out of her presence and protection.  Letting go was THE HARDEST THING we ever had to do.  The nurses rolled the curtain to give us some privacy and my husband and I just held each other and cried.

Right before surgery, can you tell she is worried ... poor baby girl. 

It was for sure and without a doubt the longest day of our life.  The hardest day of our life.  And this all happened one year ago today.  We are SO THANKFUL AND GRATEFUL to God, to Alexa, to her surgeon, doctors, nurses, our other children, family, friends and other heart families that helped us get over this great hurdle.  This Saturday, we will be hosting a Sweetheart Party in our home in honor of how far Alexa has come and in heartfelt appreciation to at least some of the family and friends that helped us through.  I'm excited to see how it all turn's out.  It will be a dessert party filled with yummy sweets for all the sweethearts that surround us!

One year later, February 23, 2011 ...

Alexa, today

jumping on the trampoline {her new favorite thing}

to her heart's content ... and mine!

February 10, 2011

Ramblings On Turning 35 and Being Pregnant with Baby #4

[In this pic ~ four months pregnant with fourth baby]

I'm so tired but I can't sleep.  My hips and back ache.  Every time I go to the store I end up really sore, I think it's a combination of all the walking, pushing the cart, lifting Alexa and bags and loading and unloading car that really does my body in.  The past two weeks have been hard because the kids have been sick.  First Yasmin, then Caleb, then Yasmin again and then Alexa.  We've had many sleepless nights and yet I know it's only preparation for the many sleepless nights to come. 

As I lay in my bed tonight I couldn't help but think about me turning 35 today {as you read this now yesterday}.  I don't celebrate birthdays, however this does not mean that I am not grateful to be alive another year and that I do not reflect or ponder on my life so far and what the future may bring.  I was totally okay with turning 30, I thought it was great! I'm also okay with 35 but since I'm pregnant, I have to admit I feel a little old. 

I had my first baby at 25 so I can't believe almost 10 years later {my son is 9} here I am, starting all over again.  I/we never planned on having four children.  I never thought **I** would have four children.  The ironic thing is that both hubby and I come from a family with four kids, so I wonder if subconsciously this may have affected us.  For sure we knew we wanted two and then two seemed like too little and just too perfect, you know with one boy and one girl.  We wanted to shake things up a little and bring an extra little piece of joy and happiness into our life and so we tried for #3.  Even before learning about Lexi's heart troubles I had decided that three was enough for me and especially after learning about Lexi's heart I thought three kids was enough for me.  With my older kids I bought a lot of neutral colored baby items so I could use them with both but with Alexa I bought everything girly because I was going to spoil her as she would be my last baby {or so I thought}. We sold/gave away all of our baby items except the crib {she still uses this sometimes as a toddler bed}.  And I told hubby I was ready to embrace the next phase in our lives, just enjoying being with our kids and watching them grow up.  He agreed although I always felt like he still had a longing for another child. But I was firm and very committed to my decision and my "no, we are done" speech.

Then, for some crazy, strange, I don't understand what happened to me moment in time, **I** started craving another baby, longing to pregnant again, having a newborn again.  It was CRAZY.  I was going CRAZY with all my conflicting emotions.  It seemed like everyone was pregnant all around me and I could think of was that I was going to turn 35 next year and my time was running out.  I did not want to have a baby past 35.  But did I really, really want another baby?  Was it really a good decision for our family?  Could I handle, if my new baby was born with CHD or some other health concern?  I felt fit, strong and pretty again after losing those last ten stubborn pounds. Did I really want to put my body through another pregnancy?  Could I care for all my children's physical, emotional and spiritual needs?  Lot's and lot's of heavy questions.  The truth is I knew things would be easier for me/us if we didn't have another baby but I couldn't shake the feeling.  I tried.  I prayed.  I stayed busy.  But this burning desire inside of me was very strong and urgent.  I felt like my time was quickly running out, like I could see the last few grains of sand from the hourglass of my child bearing years coming to an end and this chapter of my life would soon be closed forever. 

Sometimes I wonder if I felt that way because I missed out on Alexa's newborn phase, with her being in the hospital one whole month and all the busyness and worry that came with caring for her those first few months.  Of course I enjoyed and cherished every single moment I spent with her, maybe even more so because of everything she went through, but I also spent a lot of the time in worry.  Or maybe, my crazy thought had nothing to do with this whatsoever.  Maybe it was just a crazy thought or maybe it was meant to be all along.

Either way and no matter what, it is done.  I am pregnant with our fourth child.  All it took was one time of not 'not trying to get pregnant' and that was it.  There was no turning back the hands of time.  We both waited two agonizing weeks to find it out if our lives would be completely changed or if we could go on as normal.  If it didn't happen, I did not want to 'try' again.  I did not want to be pregnant another Arizona summer or past 35 so that would be it.  No more chances.  Case closed.  And I would be ready to move on. 

A first negative test brought a about a twinge of sadness and grieving over what might have been but at the same time a sigh of relief over my 'what was I thinking ~ possible temporary insanity phase'.  I know my hubby was taken very much by surprise by my sudden change of heart of adding to our family but I felt like he was secretly happy about it.  We both shared the same concerns and knew our family would think we were crazy.  But the truth was a small part of us was not ready to kiss the baby years away.  Our older children had grown up so quickly, so we had a longing to experience all those wonderful baby moments again, one last time.  Plus, we enjoyed watching our two older children grow up together since they were only two years apart and so we wanted a sibling for Alexa to also grow up with. 

A few days after our negative pregnancy results we received a positive pregnancy result and then another positive on top of another positive to be positive.  I couldn't believe it!  We were both in shock but happy.  Shock because we originally thought it hadn't happened and then shocked that it seriously just took one time of 'not ~ not trying' and that was it.  I know biology and how stuff works but it seemed so black and white, no time to second guess ourselves, no second chances.  That was it - we had forever altered our family dynamic.  We were excited of the new adventure that awaited us, yet fully aware of the responsibility that came with caring for another child.  We technically never planned to have another baby but this baby was definitely invited into our family and we are glad he accepted the invitation!

So here we are today, almost seven months into my pregnancy and we joyfully anticipate the arrival of our new baby boy!  I already love him but as I feel him kick and move around in my womb, I can hardly wait to meet him, smell him, hold him and kiss his little cheeks and feet and fall head over heels in love with the baby I never knew I always wanted!

February 9, 2011

CHD means ...

giving birth to your baby and only getting to hold them for a few seconds.

Watching your heart, pride and joy, get wheeled away to endure a fight for their life.

Being left empty handed, broken hearted and with a world full of unanswered questions, fears and hopes. 

Posted in honor of Congenital Heart Defect Awareness Week 2011.

February 8, 2011

What Every Pregnant Woman Should Know and Ask

As a pregnant women we stress over many things during our pregnancy.  We worry about our unborn child.  We take our prenatal vitamins, we change our dietary habits, we worry if the baby kicks too much or not enough, we worry our bellies may be too big or too small for our babies gestational age. We've heard of Down Syndrome, we've heard of Spina Bifida, yet very few, almost none of us have heard of America's #1 birth defect ~ Congenital Heart Defects {CHD}

We fell head over heals in love over the sound of our babies heart beat.  And we anxiously await to 'see' our baby for the first time at out 20 week ultrasound appointment.  We blissfully enter our doctors office full of anticipation over the sex of our unborn child or just to meet the little bean on screen.  Yet we are sadly ignorant of very important facts.  Fact that can save our babies life, if we only knew.   

  • Congenital heart defects are America’s #1 birth defect. Nearly one of every 125 babies is born with a CHD (almost 1% of all children born each year!).

  • Congenital heart defects are the #1 cause of birth defect related deaths. 1 in 3 children who die from a birth defect have a congenital heart defect.

  • This year almost 40,000 babies will be born with a congenital heart defect.

  • In the U.S. twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined. Yet funding for research of pediatric cancer is 5 times greater.

  • From 1993 to 2003 death rates for congenital heart defects have declined by 31% due to advances made through research!

  • There is not yet a preventative cure for any type of congenital heart defect.

  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

So what can you do?

In a recent health article it was stated that most of the time, CHD is overlooked during the 20-week ultra sound. Thankfully, this was not the case in our situation.  And it allowed us needed time to research and prepare.  Yet, I've heard of many stories where parents are completely blindsided by the news their baby has a congenital heart defect.  

Dr. Nina Gotteiner, a fetal/pediatric cardiologist at Chicago's Children's Memorial Hospital provides imperative information and a list of proactive questions that every expecting parent should know. She says: "By asking these questions, expecting parents and their doctor can proactively identify heart issues before birth, and as a team, work together to prepare for any potential heart issues that may arise after birth."  Here are the recommendations:

 Top five questions expecting parents should ask their doctor during the 20-week ultrasound exam:

1.Do you see 4 chambers?

2.Do you look at the arteries or outflow tracks as part of your scan? *Note: Extremely important to focus on artery views. CHD often missed if only a standard “chamber view” is performed.

3.Are the heart and stomach in correct positions? Both organs should lay on the left side of the fetus.

4.Is the heart rate normal? Is the heart rate too slow (less than 100 beats per minute), too fast (over 200 beats per minute), or irregular? *Note: A normal heart rate range for a fetus is 120-180 beats per minute.

5.Is the heart function normal? Does the muscle work normally? Is everything hooked-up correctly?

Unfortunately, some heart defects go undetected at birth and newborns leave the hospital with a life threatening condition. Often times it remains undetected until it is too late and an infant is in heart failure or worse.  You can read about Cora's Story a beautiful newborn baby girl who passed away in her mother's arms while breastfeeding due to an undiagnosed heart defect. Yet, a simple, painless and affordable test called Pulse Oximetry Screening performed on a newborn hours after birth could have saved her life.

A normal blood oxygen reading is somewhere between 97 – 100%, however within the first 24 hours of life these levels may vary considerably, therefore some physicians believe the test should not be performed until the baby is at least 24 hours old to remove the likelihood of an inaccurate reading. And although, not all forms of CHD can be detected through pulse oxymetry check, it is a step in the right direction.

CHD is real.  It can affect any of our children and come into our life when we least expect.  I was blisffuly unaware of these important facts until CHD rocked my world.  But knowledge is power.  Ask the right questions and be an advocate for your babies health.       

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