Inspiring...

http://www.youtube.com/watch?feature=player_embedded&v=junwL-9SdeQ

First Surgical Consult

Today at 1:00 (it turned into 2:30...ugh) we had our first surgical consult regarding Melia's heart.  The main doctor that would do her surgery had a complication in surgery and was not able to talk with us. So his first assist talked with me about her condition, consensus opinions and gave us recommendations.  Here are the highlights of what he had to say:

~ National (if not International) Consensus is that her condition is best treated with a Full Repair.  For her that means a Pulmonary Artery (PA) Banding to strengthen her future systemic pumping ventricle (the left) followed by a Double Switch Surgery.  The Double Switch involves an Arterial Switch of the PA and Aorta and reattaching the coronary arteries and an Atrial Switch of Baffle.
~ The Arterial Switch has been done for about 30 years and the Atrial Switch a little longer.  Therefore, there is no evidence to prove that this procedure prolongs life past the 5th or 6th decade which seems to be the time when most with CCTGA have significant heart failure (presuming they have made it that long in the first place).  To put it simply, these surgeries have great short term outcomes, but the long term outcomes are theoretical at this point.
~They do know that the way the Right Ventricle pumps blood it often fails because it is exposed to high pressures if it remains the systemic pump.  In other words, the long term outlook is more favorable theoretically with surgery than the known outcomes without surgery.
~She does have some stress on her heart with more blood flow going to the lungs than the body (1.4:1 ratio), a VSD that is contributing to this disproportionate ratio and a very mild Tricuspid Regurgitation.  These are not problematic right now, but suggest that a PA Band would actually help these issues and prepare her heart for the bigger DS down the road.
~They predict a DS in 1-4 years.
~The PA Banding is a 2-3 hour surgery where they open up the chest and cut open the sternum to place a band with sutures around the Pulmonary Artery.  She would spend a night in ICU and then 1-2 nights in a regular hospital bed and then home if there are no complications.
~They would recommend this first surgery in 3-6 months.

So, our next step is to meet with the actual surgeon, ask a few more questions and then get opinions from two other physicians out of Michigan and Boston.  Once we have all that information we will make the decision as to whether or not we elect to have Melia have one or both surgeries in her future.

That is all the technical stuff, now for the real stuff.  I felt pretty overwhelmed after this meeting.  I had already lost my keys, I was late to pick the other kids up from school because the meeting was late, Melia missed her nap and was sad and mad, I had to call my sweet MIL for the zillionth time this week to help me out with the kids AND we brought all this on ourselves!  We chose this path.  We also chose to sell our house and buy a new one during all this.  So, I cried.

And, in those few tears God spoke in His still small voice.  He reminded me what He has taught me before.  Joy is NOT dependent on circumstance.  A few months ago I was feeling too settled and that made me uncomfortable.  Now, we are changing everything in our lives and I am uncomfortable.  When life is an emergency or I am frantic to figure out the future (as if I have any control over it at all) I lose joy.  But, when I GIVE THANKS for the here and now and am present in the moment I find joy!

So, fortunately, the tears shifted when I stopped to thank God for the little one sleeping in her car seat, the rain that brought out green grass in May, car keys that were found, a call with two house showings tomorrow...how quickly giving thanks can turn sad into glad.

As we gather information, if you think about it, would you mind praying for us.  Pray that we would have Holy Spirit wisdom to make the best choices for Melia.  Pray that she would not lose her joy through all of this medical stuff.  Pray that her brothers and sisters would be blessed through it all too.

Zac and Melia

Zac and Melia are becoming fast friends!

Upon arriving home with Melia, Zac was the least enthusiatic.  I think he knew he was losing his spot as baby of the family and also was having to share the attention of his parents.  For a few weeks we saw some behaviors that told us he needed affirmation that he was still loved, still special and still important to us.

Fortunately, after a few conversations about his new role as BIG brother his negative behaviors stopped and he and Melia are turning into great friends.  Zac is VERY expressive.  You always know exactly what he is feeling because he wears his heart and emotions on his sleeve.  When he loves, he loves passionately.  He is also very hands on and loves to have everyone's attention.  So, we have seen in him a growing affection for Melia.  He LOVES to touch her face and kiss her and hug and hold her.  He loves to make her laugh, and boy oh boy, does Melia laugh at him.  She thinks he is quite the comedian.  Zac will take her by the hand and gently lead her down steps or push her on the swing.  I love watching the way he protects her as well.

This brother and sister relationship is beautiful.  There have been a few times recently where Hallie and Jacob are off doing something on their own and I get to watch Zac and Melia interact as siblings.  I am so blessed when I think how God brought these two precious children from Russia and China together in Omaha, NE to be brother and sister and how he has made me their mommy.

If you have never considered adoption, just watch this video...

Isn't adoption amazing? 

I am so thankful that God blessed us with these children and is knitting their hearts together as Big Brother and Little Sister!

Getting A Better Picture

(getting ready for today's procedures)

Today was the day for Melia's Cardiac MRI and TEE at Children's Hospital so the doctors could get a better picture of her heart to make their final recommendations.

She started the day with a yummy "chicken broth in a bottle" breakfast and after 9:15 she started her fast.  I joined her in her fast inadvertently because our morning was a little chaotic (Ryan lost his car keys, Zac spilled a berry smoothie down his shirt before getting into the car, Hallie had a hair crisis and Jake was practicing spelling words).

Melia did remarkably well and was distracted fairly easily until Grammy picked us up and drove us to the hospital (remember Ryan's lost car keys).  Once we arrived we were greeted by the hospital dogs and a few friends that we happened to meet up with in the lobby.  Ryan arrived and we headed back to our room around 11:45.

At 12:30 we had confirmed her medical history and I had given consent for treatment.  She received a dose of "happy medicine" to help with the separation and she was wheeled away happily by 12:45.

The plan was that she would have the MRI then the TEE with her Cardiologist and finally she was to get her second round of immunizations while under sedation. Then she would return to us around 3:30ish.  I ran to get a bite to eat, Ryan went to get a new phone (he had dropped it and cracked the screen the night before) and then we waited.

Her Cardiologist came in to give us the report at little after 3:45.  He did not find anything surprising and suspects that after he reviews the MRI and discusses it with the group in Omaha and del Nido in Boston that they will continue to recommend a PA Banding surgery to prepare her heart for a double switch in the future.  We discussed who, where, types of surgical approaches and her condition.  Once again, we did not feel rushed while talking with him and appreciated his experienced opinion.  They will call next Monday after Grand Rounds with the final verdict.  If, indeed they do recommend surgery then we will also be discussing treatment plans with local and national surgeons to find the best place for her to have this intervention.  Her final diagnosis is:  Atrial Situs Inversus with D-looping of the heart and D transposition of the Great Vessels in Dextrocardia which is the equivalent of Ventricular Inversion with L Transposition of Congenitally Corrected Transposition with a small VSD and ASD.

We are grateful that there seems to be no hurry for us to make these decisions.  We are also thankful for anyone willing to pray for us that God would impart wisdom as we proceed.

Melia returned to me around 4:30, sobbing!  I quickly took her into my arms and they told me they had forgotten to give her the shots while she was under sedation so they decided to give them while she was in a strange recovery room with strange people all around her as she woke up from anesthesia!  I was quite upset.  My goal was to lessen her trauma and anxiety related to health care but I'm sure that experience will actually heighten her fear.  What was done was done, but I was not happy.  After about 15 minutes I was able to calm her down and comfort her.  She sat on my lap for about an hour and then it was time for us to leave.  Ryan picked us up with the big kids and we headed home.

She threw up once tonight, but then was dancing and giggling like nothing happened today.  I hope she rests well tonight.  I adore that precious child so very much and it pains me to see her experience any discomfort.  I think that is what is making the decision to proceed with surgery so difficult.  If I had an ill appearing child that was suffering, surgery would be a welcome intervention, but it is so hard to choose pain for my "healthy" child in hopes that it will prolong her life and give her a greater quality of life.  Because her diagnosis is so rare (less than .5% of all Congenital Heart Disease) the treatment plan is largely based on theoretical outcomes, not proven outcomes.  We know that without intervention she could live a "normal" life to the age of 40 or 50, but it is presumably more likely that she would suffer from some amount of heart failure before that time, maybe even in her youth.  Surgeons hope that a double switch done early in life will prevent failure, but they only got good at the surgery in the 90's, so there are not many (if any) 30-40 year olds that had the surgery and can show the world that it did improve quality and quantity of life.  The other problem is that once the heart starts to fail you can't really "get back" what you loose, so intervention before failure (ventricular or valvular) seems optimal.

These are the decisions we are faced with in the near future.  We are not feeling desperate or anxious, but we would really appreciate prayers for wise decision making, peace and positive, life-sustaining and life-enhancing outcomes for our daughter with whatever we decide to do.  One thing I know...God is good and just and loves her and loves us.  We can rest in that blessed assurance!

(A glimpse of our sweet little girl, babbling away!)