A Change of Plans

(Melia's First Echocardiogram)

Our Pediatric Cardiologist called today with his consensus opinion after discussing Melia's Congenital Heart Disease (CHD) with the Omaha Cardiologists, Cardiothoracic Surgeons and the nation's premier doctor in CHD/Double Switch operations out of Boston, MA.

I feel so strongly that God placed Melia in our home in Omaha so that she could get this kind of excellent, well-thought out, collaborative health care.  I am confident in our Cardiologists knowledge and thankful that he would go to such great lengths to get the best information regarding treatments and procedures that could enhance and prolong her life.

That being said, here is the newest recommendation (I get the feeling that dealing with CHD is like adoption...expect the unexpected and expect change).  To put it simply, Melia's heart is stable right now, but the wrong side of the heart is pumping blood to the body and might wear out in time because it was not designed to do this kind of hard work.  Our doctor recommends doing a couple more procedures so that surgeons will have the best looks at her heart before they would ever need to do surgery and then he recommends proceeding with a preparatory surgery to get her heart ready for any later, "big" surgeries that she might need.

For those reading that understand the medical terminology, here goes...

They are recommending a Cardiac MRI and TEE to complete her testing.  We will probably have all her records sent to Bove and Del Nido for second opinions and then proceed with a PA Banding surgery in Omaha, Boston or Michigan.  The PA Band will stregthen the LV muscle so that when and if a Double Switch is needed (they mentioned age 5) then the LV will be ready to pump blood systemically.  There may be a need for multiple PA Bands.  We just have to see how she responds to the banding.  They do open the chest for this surgery, but do not require use of the heart/lung bypass machine.  They would anticipate a three day hospital recovery.

So, although we have a change of plans the Unchanging, Creator God is with us.  Today, I am thankful for this good news...

~God, Immanuel (He is with us)
~God, Creator (He made Melia)
~God is Love (He works things out in pure love)
~Time.  Nothing is urgent.  We have time to build up Melia's heart.  She is not in heart failure.
~Communication.  Doctors all communicating with each other and me to make the best, wisest decisions.
~Access to Health Care.  All around the world children are suffering without access to good, safe health care but our little Melia has that right here in our own community.
~Family.  The support, love, wisdom and care of extended family.
~A Kiss.  Last night she was sitting on my lap, turned her head and puckered up for a kiss from Mommy.  Then she snuggled up in my chest with a smile.  Pure sweetness!

Jacob and Melia

It is a little harder for me to get pictures of just these two together.  Hallie and Zac are quick to hop in a picture and vie for Melia's affection and attention, but true to Jacob's peaceful and calm nature he will patiently wait for her to be unattended or in need to spend time with her.

I must admit I was nervous about this relationship.  I wondered if Melia and Jacob would have any reason or desire to have a special bond or friendship.  I am so thrilled that they have taken a liking to one another and it is a joy to watch these two together.

From the moment Melia entered our lives on Gotcha Day Jake, my observant boy, watched the way she responded and he gently introduced himself after all the rest of us had made our boisterous and excited introductions.

Jacob never forces himself on anyone but willingly gives love and affection if and when another person is ready to receive it.  I remember Jacob telling me that he hoped Melia would like him, and right from the beginning she did.  He held her in the van ride in Shijiazhuang and they became fast friends.  She was quick to give Jake a hug and his face just lit up with joy.  She liked him and he liked her!

So, in her first month home I will often see Jacob reaching out and waiting for Melia to offer him a hug.  Aside from this sweet expression of affection Jacob is also wonderful at watching out for Melia's safety.  He is quick to help her up and down steps and into her car seat.  He prides himself on fastening her belt in the car seat, but once again, never forces it.  The other kids like to help too, so Jake will only jump in if the others have not already decided they want to help.  Jacob loves to hold her on his lap (although she is getting a lot wigglier and less likely to sit still for long) and will even read to her if she stops to listen.

Ryan and I call them our, "numbers 2 and 4."  Jacob and Melia are our calm, sweetly disposed, thoughtful children and I trust that God will continue to use their similarities and differences to bind their hearts together as brother and sister.  It is a beautiful relationship in the making.

Good News

We have been anticipating this day for awhile now.  Today was Melia's first Cardiology appointment in America.  This morning, as I was praying, I asked God for good news.  I wasn't quite sure what that would be, after all Melia has congenital heart disease.  But, without anxiety, I just laid her heart and life before the Lord and asked for good news.

I am so happy to report that we received good news today!  Praise God!  He fearfully and wonderfully made our little girl and in His sovereignty knitted her together in a unique way.  She indeed has Congenitally Corrected Transposition of the Great Arteries but does not have an identifiable VSD and a very small ASD.  She also is unique in that she does not have inversion of the ventricles, but rather has inversion of the atria. This lessens the risk of a future heart arrhythmia or heart block. She also has a fully functioning tricuspid valve and no evidence of cyanosis or heart failure.

That's a lot of medical terminology to basically say...in Melia's body two wrongs made a right.  All the blood is going in the right direction and she is experiencing no "problems" as a result of her anatomy.

Our doctor, who was FANTASTIC, will present her case to 7 other cardiologists and 3 cardiothoracic surgeons next Monday.  They will likely proceed with a cardiac MRI to complete her work-up and then come up with a consensus regarding their recommendations.  He was also more than willing to have us pursue getting additional opinions given the complexity of her condition, if we chose to do so.

He told us that his initial thoughts were that he would do nothing.  Right now, the risks of a 9 hour, invasive surgery which requires going on the heart/lung bypass machine, for prophylatic treatment, in his opinion, is not advisable.  He looked at our active and thriving little girl and basically said that for now her body is operating just fine.  He gave us no restrictions for her activity either.

In addition to her heart condition, she also has "flip-flopped" abdominal anatomy.  Therefore, he will also consult with general surgeons to get their opinion regarding any need for surgery in the abdominal cavity.  Although, once again, everything seems to be functioning just fine right now.

So, we are thankful.  Thankful that we don't have to make any quick decisions.  Thankful for every day that she brightens our lives with her presence.  Thankful for wise advice and access to competent physicians in our hometown.  Thankful that for now we do not need to anticipate surgery for our little one.

We will continue to monitor her heart and if the consensus from the Omaha doctors, second opinions outside NE or MRI reveal new information we will consider those things as they come along and pray for God to give us wisdom as we walk this road of Congenital Heart Disease with our daughter.

All smiles after a good report from the doctor today!

Our happy, energetic little girl

(pardon my messy room!)

She makes me smile

Have I mentioned how much this little girl makes me smile!

Melia is truly a joy. It has been a little over a month that she has blessed our life with her daily presence and in that time my heart has been filled to overflowing with love for this little one.  I am so thankful that God has graced our family with her.  I am thankful for...
~the way her eyes smile when she giggles
~the hugs she is giving me
~her eye contact
~the way we play games with her bottle and she laughs when I try to help her drink it
~how she asks for bedtime by saying, "nigh, nigh" in a sing-song voice
~her growing vocabulary (only understandable by mom...dog, balloon, mama, daddy, Zac, JJ, Hallie, drink please, bottle, help please, night night)
~the way she uses baby signs so we can communicate
~when she discovers something new and trusts us, like learning to drink from a water fountain or running a food processor
~baking banana bread with her
~taking her for a walk in the stroller
~sharing her with my friends
~the way she dances (bounces up and down) whenever music plays
~how she sucks on her finger
~willingness to try a sippy cup
~giggles and grins her first time swimming
~and on and on and on...

We are getting to know each other more and more everyday and it is a delight!
I have to share some pictures.  Is is just me, or does she make you smile too?

Happy Heart Day

Hallie and Melia

I wanted to dedicate a post to each of my older three children and today's blog post belongs to Hallie.

To be honest, she was one of the reasons we decided to adopt.  For several years she has been asking for a sister.  At first, we thought it would be a passing phase but then her request for a sister became more heartfelt and sincere.  She promised to help and be a good role model for her little sister.  Now, although Hallie is an amazing child we wondered how quickly the novelty of a new sister would wear off and she would become a nuisance rather than a gift!

Well, one month into our family of six and let me tell you what a blessing it is to see these two sisters interact.  Hallie fell in love right away and I think Melia quickly followed suit.  Hallie helped ease Melia into the water for her first bath and now she loves the water.  Hallie plays with her and helps her up and down the steps as many times as Melia wants to go up and down.  Hallie can make a bottle beautifully and does so without even being asked.  She has a keen sense as to what her little sister needs and attends to her at the drop of a hat.  Hallie sings, dances, rocks and carries her sister with so much love and adoration.  The way she interacts with Melia shows evidence of Jesus dwelling in her heart.  Hallie's love is sacrificial and sustaining.

We have also seen how Melia already looks up to her big sister.  She trusts her when she is playing and holding her, not to be harsh.  She smiles and laughs with her big sister and feels comfortable when she is in the room.

We pray that this love and special relationship with endure and grow through many more years.  They are people and sisters so certainly we don't expect their relationship to be perfect but we are hopeful that it will always be special.

Today I am thankful for these two wonderful girls that God has graced me with and the unique relationship that belongs just to them.

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First Doctor Visit

This week has been quite eventful.

We started off with a visit to our pediatrician on Tuesday.  He was very pleased with Melia's development and quite enamormed with her personality.  She did a great job until they decided it was time to update her immunizations.  She had an injection to test for TB in her arm (after the first injection failed) and two shots in each leg.  Melia cried so hard that little blood vessels in her face broke open!  Fortunately, she was easily consoled.  I was also easily consoled by my mom who was with me for the visit.

The next day we went over to Children's for a chest x-ray, abdominal ultrasound and labwork.  Of course, little Melia had to fast for the exam.  So, my mom occupied her in an extra long bath and playtime to distract her while the older kids ate breakfast.  She was amazingly content until about 9:15.  At that point in time she whimpered a little, but was still her usual sweet self!

After the ultrasound and before the lab work we fed her and she was a lot happier, for a few minutes.  The lab technician had to draw 5 vials of blood and while they held Melia's arm and body down she just looked up at me and cried, "Mama, Mama."

I couldn't handle anymore tears and after we left I cried some of my own.  I was sad she had endured any amount of pain and my mind wandered to future pains that she might endure because of heart surgery.  That combined with the intense amount of love I feel for my newest daughter made for an emotional breakdown on my part.  Ugh.

The blessing in all this pain is Melia's growing attachment to me as her mommy.  She reaches for me, hugs me and is soothed by me more and more every day.

After the hospital we had an "interesting" time trying to collect a urine specimen and I still have to collect three stool specimens.  Fun!  The good news is that all of her tests have come back as expected.  I am so thankful for the results we have received thus far.

We have heart appointments and an echocardiogram later this month.

Love my little girl!