The roller coaster ride begins

March 15^th – sorry this is a long post…

Wow, what an emotional roller coaster we've been on for the past three weeks or so!  However, the past two days have been especially stressful for Tovin and ourselves; and the beginning to what is surly going to be a difficult road ahead. 

Tovin had his first appointment with Dr. Rios at the Children’s Heart Clinic in the Minneapolis.  We went up on Thursday morning, meaning to leave by 7:00 for our 3 hour drive to make sure we had plenty of time before his 10:45 appointment.  However, Jason’s eyes finally opened enough to look at the clock and it read 6:52; needless to say we had to hustle to…get Addison out the door for preschool (those who know Addison, she is not the speediest girl in the world), get Tovin up, to the bathroom, dressed, Henry off to his doggy daycare (to Grandma and Grandpa’s house), and the two of us still had to semi-get ready.  We were out the door at 7:50.  We made it to the clinic at 10:35…we made great time!

The first part of Tovin’s appointment was in the EKG room.  They first weighed and measured Tovin, he is a whopping 23 pounds and is 34 inches tall.  Then they hooked him up to the EKG machine.  He was amazing, he was so still, and just took it all in.  He loves to be pampered and taken care of.  If the nurse had lotion he would have lifted up his feet for her to rub them.  The nurse was really great and reassured us that they do amazing things at this clinic.  The day really started out on a great note!

Our next stop was in the cardiac imaging room, where they do Electrocardiographs   The cardio sonogram specialist told us that this typically takes about 20 minutes, a little bit longer if the heart isn't easy to take pictures of.  Tovin sat on my lap, and Jason was in charge of entertaining Tovin with bubbles, licorice, books and just being silly.  It didn't take long and Tovin fell asleep, that’s how entertaining Jason was.  The twenty minutes came and went, and after another 20 minutes or so the specialist said that he needed get a co-worker for a fresh pair of eyes, no big deal right?  The co-worker came in and they were discussing Tovin’s heart with words that you typically don’t hear everyday – we didn't have a clue what they were talking about, but it didn't sound read good.  We knew Tovin had heart issues, but none of what they said was sounding familiar.  After some discussion they called in Dr. Rios for his opinion.

"I'm fearfully and wonderfully made." Psalm 139:14 

Dr Rios took a couple minutes studying a few of the images that had been taken and the first words out of his mouth were actually easy to understand because they weren't full of technically jargon, they weren't real reassuring, but they were easy to understand.  He first comment was, “Oh my!”  What we got from the conversation was that Tovin’s heart is on the wrong side of his body, his top two chambers are correctly made and beautiful (score Tovin!), but along with his bottom two chambers they are also rotated 180 degrees; and they couldn't find his pulmonary artery (PA).  They were totally perplexed by Tovin’s imperfect, but beautifully created heart.  They decided to have an X-Ray done to see if they could find the PA.  So to the X-Ray room we went.

The X-Ray was very quick and easy, we just had to take Tovin’s shirt off again and set him in the plastic mold they have for little kids.  He did perfect – would've only been more perfect if lotion was involved!  They were able to get a great picture, but still they couldn't find the PA.  By this time we came to fully understand that a PA is a necessary part of the heart, and were somewhat concerned! 

We were asked to go back to the patient room to discuss the results.  Dr. Rios is a very positive and encouraging doctor, and we knew that he wasn't going to distort the truth.  He said that he was very disappointed with the findings, and that he didn't know by the Echo-cardiogram readings if Tovin’s heart condition was correctable.  He said that it was very serious, and that Tovin has a very complicated heart condition.  He decided that he wanted us to go down to the lab to have blood tests done to find out his hemoglobin numbers (high numbers are bad), and to come back tomorrow for a Cardio CT scan.  He said that he could admit Tovin to the ICU for the night or we could go home (my Grandma Doris’ house which is only about two miles from the hospital) with him since he has lived with this condition for almost three years already, and he should be fine.

We walked to the lab in shock, heartbroken and confused.  Tovin did amazing once more… didn't even flinch.  I about died as I hate needles and he was sitting on my lap.

"For I know the plans I have for you," declares the Lord, "...plans to give you hope and a future." 

Jeremiah 29:11

We decided to go to Grandma’s for the night; I’m not sure we were ready to face the fact that the hospital will be our home away from home soon enough.  We needed to return some stuff at the Mall of America so we headed there for the afternoon.  While at the mall we received a phone call about the procedure for tomorrow.  While on the phone, I kept having missed calls ring in my ear.  I finally hung up with the scheduler, when I received a call from Dr. Rios telling us that he wanted to admit Tovin to the hospital yet that night, and that we needed to be there ASAP.  His hemoglobin numbers were extremely high, and they were concerned for his health.  We quickly got back to the hospital; the nurses got us to our room for the night, and immediately started him on an IV, and gave him oxygen.  We sat for a couple minutes digesting what had happened throughout the day and what it all meant, but Tovin seemed to be un-phased and not too upset about being poked and everything else he had been through during the day so we were quickly up and walking the halls pushing a stroller with our little guy hooked to an IV cart.  They are set up with everything a family could possible need.  There are wagons, kid sized cars, and strollers, whatever one might need to walk the halls.  Tovin loves to be on the move, so we basically walked a marathon with him last night.  Once he was satisfied with his ability to walk the halls with his eyes closed, we went back to the room.  When transferring him to the bed he reached out for me, so of course I crawled in with him.  He quickly put his tiny arm around me and went to sleep.  It was probably the most peaceful he has slept since we've been home.

We all got up early for his CT scan.  They had to sedate him for this procedure, which they did in the room.  He handled the sedation very well, and then they transported him to the CT scanner, which is at Abbott Northwest Hospital.  About an hour later they came to get us, Tovin was in the recovery room and was starting to wake up.  Tovin was so funny when he was waking up.  He would look at us and yell, “momma!” and then give the nurse the stink eye.  He wanted nothing to do with her, and wanted to get out of the room!

We were waiting for Dr. Rios to come with the news, praying for the best, but preparing for the worst.  This wait seemed like an eternity.  We went through so many scenarios if the news was not what we hoped for.  We knew that no matter what the diagnosis, Tovin is our son and we would go on loving him for however long he was meant to be with us.  Dr. Rios came in the room with a huge smile on his face and said, “Yes, we have everything we need to fix his heart!”  I don’t think that I heard anything after that.  He did say that his heart condition is very rare, and the surgery will be very complicated.  They had found Tovin's PA; they didn't see it on the scans before because it is not attached to the heart like it should be and it has such a low blood supply it wasn't showing up.  It is far from the diagnosis of Tetralogy of Fallot, like we thought.  I asked him to slowly tell us what was wrong with Tovin’s heart.

We are totally trusting you.  "Be still, and know that I am God." Psalm 46:10

He started the list…here we go…

            - His heart on the right (the incorrect) side of his body…that’s minor!

            - L-Transposition of the Great Vessels (basically his heart is flipped 180 degrees)

            - Pulmonary Atresia (lack of the pulmonary valve)

            - Ventricular Septal Defect-VSD (one or more holes in the wall that separate the left and right  

             ventricles of the heart – this is very common!)

            - Non-confluent (not attached) Pulmonary Arteries, being fed by lateral ductus.

            - Right Aortic Arch- this is a rare anatomical variant in which the Aortic Arch is on the right side

             rather than the left.  This is very uncommon, about 0.01% of all heart defects.

All of these words are foreign to us, but I know that they will soon become part of our medical vocabulary.  Jason and I went into this special needs adoption blindly.  We saw Tovin’s beautiful face and knew that he was to be in our family.  We knew that he had a CHD, and that it was diagnosed as TOF.  There was a question mark behind the TOF – I guess we should have checked into the question mark.  All of the doctors we had look at his scans in the states said that it looked minor and that it looked correctable.  We went with it!

I’m so glad that we didn't know the whole extent of Tovin’s heart condition.  If we did we might have never met him.  This condition would scare anyone away.  I hate to admit it, but it defiantly would have scared us away.  Sometimes it is better to go into a special needs adoption blindly, to just trust God and know that he will guide you through anything that might pop up.  Tovin is amazing, and I can’t wait to share his spunk with everyone.  We have a long road ahead of us, but we are up to it. 

We start the next leg of this long, curvy, and hilly emotional roller coaster this Sunday night…Tovin will be admitted to have an IV for fluids and a shot of oxygen.  They are going to catheterize his heart on Monday morning to test the pressures in his heart at each valve; this will give the doctors more information to help with the next step.  Most likely Tovin will have his first of three, possibly more, open-heart surgeries next week – yep next week!  During the first surgery they plan on fixing the separation of the Pulmonary Artery. 

We are totally breaking the number one adoption rule by jumping into these medical procedures of not introducing him to strangers too soon.  However, we truly believe that he has bonded to us and knows that we are his parents, and at this point his heart is the most important thing.  We are very concerned about his health so if the doctors would have said that we could have waited until summer we would have defiantly waited.

These next weeks, months, whatever it ends up being, we will need many prayers.  I will be in the Cities basically full time with Tovin.  Jason will be at home taking care of Addison and working.  Someone needs to work to pay for all the Frosted Flakes, GoGurt Yogurt, Ritz Crackers, Oscar Meyer Baloney, Gatorade, and Super Long Licorice Nibs that Tovin eats.  Not necessarily the healthiest diet, but we’re doing whatever it take to keep him happy!

"May God grant you always...a sunbeam to warm you...a moonbeam to charm you...a sheltering angel so nothing can harm you...laughter to cheer you...faithful friends near you...and whenever you pray, heaven to hear you." An Irish Blessings Quote

As I’m sitting here typing about our two days, Tovin has taken off his socks and lifted his feet up to me, pointed to the tub of lotion and grunted….I totally know what that means, “Mom, get off the computer and rub my feet.”  Jason came to the rescue, and while dad is rubbing his feet he is rubbing lotion on his face.  Really, this boy loves to be pampered.  Everyday around here is like a spa, and I’ll pamper him every chance I get.  With everything he’s going to experience in the next year or two of his live, he so deserves it.

Tovin is amazing and God is Great.  I’m so glad that we named you Tovin…because God is Great, and that’s what your name means!  We love you!  Mom, Dad, and Addison.

Keep the prayers coming,

The Kainz Family.  Jason, Jen, Addison, and Tovin.