Thursday, June 26, 2008

Our Heart Girl

As many of you know, my five year old daughter has a congenital heart defect. When we adopted her she was on a China special needs list with our adoption agency. We knew she had heart problems but the severity of her condition was unknown.

Armed with a 6 month old echocardiogram with results translated roughly from Chinese to English, we consulted with a pediatric cardiologist to help us make the decision to accept the referral or not (truth be told I had no doubt she was my daughter but I knew I was supposed to do my “homework”). While being realistic, the doc encouraged us at the same time to not let her heart condition stop us from considering adoption. I remember him saying that the heart is the “work horse” of the internal organs. It can give it all it's got and then take a little more. He explained from the limited information what he thought the condition was and the possible courses of action, i.e., medication, surgery, or perhaps she would only need to be monitored periodically.

Obviously we made the decision to adopt our daughter (a very cool story in itself that I will share another time) and made an appointment to see the cardiologist about a month after she arrived home. In the meantime we prayed for our precious little girl and hoped for the best.

When Joel brought her home she appeared to be healthy but was very small (she was 27 months old but wearing 12-18 month size clothing). She was spunky, curious and very, very active. I truly thought we had nothing to worry about.

We took her to the pediatrician (who is the wife of N’s cardiologist) a few days after her arrival. We were quickly jolted into reality when she listened to N’s heart. First the concerned frown, then more listening, then feeling for the feeble to nonexistent pulses in her groin and on her very pale feet. I felt my heart leap within me then race as my palms grew sweaty. I looked from N to Joel to the doctor and back again with fear in my eyes. After a thorough exam the doc stated that N’s heart condition appeared to be quite serious and she was going to call her husband to make an appointment for the next day (this is no small feat given that he is typically booked about 4-6 months in advance—it was a good thing she could pull a few strings). I was so thankful that God had led us to this husband and wife team who could provide the best care for our little girl.

As weird as it sounds our first appointment with the cardiologist was actually fun because Dr. W is one of the coolest docs I’ve ever met. He walked into the exam room cracking jokes and wearing red Converse high tops and a crazy tie. His warm bedside manner with N put her at ease which was incredible since anyone in a doctor’s office was public enemy #1 as far as she was concerned. As newbie parents we greatly appreciated his willingness to sit for a very long time explaining what he saw on the echo and drawing copious diagrams.

It turned out that N had three main issues with her heart that combined together were very serious. The technical terms are quite impressive, let me rattle them off for you, it makes me feel so very smart…
Moderate coarctation of the aorta (her aortic arch is narrow and twisted into a kind of question mark), a bicuspid aortic valve (her valve opened like a very constricted eyelid rather than the typical 3-leaflet valve opening), and the coup de gras, severe subaortic stenosis (a tissue blockage below her aortic valve). All of which resulted in reduced blood flow to her lower extremities and a very “swooshy” sounding heart murmur. It’s the kind of murmur that always seems to impress the medical professionals who typically say something like, “Wow, that’s quite a murmur”.

N. was scheduled for an angiogram in less than a month to determine whether or not she needed open heart surgery. I worried, I prayed and then I got down to the business of getting to know my new little girl. Before we knew it the day had arrived. We spent the night before giving N all the extra love and attention that we could. I think I was storing up memories, just in case. It might seem morbid to some but I wanted to know that if the worst happened over the course of the next few days, that we had done all in our power to know and love her.

Here is a picture of N before the angiogram.
After the angiogram we heard what we did not want to hear. She definitely needed surgery and they wanted to do it the next day. They would widen the opening of the two-leaflet valve and take out as much of the tissue blockage below the valve as they could. They felt that the coarctation might improve on its own with the increased blood flow.

What followed was one of the most miserable days of my life trying to comfort and entertain a very upset, very hungry and thirsty two year old who wasn’t allowed to eat or drink anything before the surgery. If that wasn’t hard enough, I was also 7 ½ months pregnant with recently diagnosed gestational diabetes. We called my parents to be with us for support and two elders from our church came to pray with us.

It is difficult to describe how I felt the next day when we walked down the long hallway that led to the operating rooms. At the double doors I relinquished my baby girl to the nurses and as I watched them take her away my arms felt so empty, my throat burned, my heart ached. I leaned my head against Joel and started to cry for the first time since this whole ordeal began.

I honestly don’t remember how long she was in surgery, except that it felt like forever. In between making small talk with my parents and staring blankly at magazines, I tried not to picture my daughter lying on a table with her chest wide open. I had unfortunately watched far too many medical dramas for my own good. My imagination ran wild.

Everything went according to plan and we soon saw her recovering in the PICU. Nothing can truly prepare you to see your child covered with tubes and wires from head to toe. As a parent you feel so helpless, you want to DO something yet there is nothing to do but watch and pray with a strength and peace that are not your own.

N. recovered amazingly fast. She surprised everyone when four days post surgery she was discharged directly from the PICU. The nurses commented that they couldn’t remember the last time they had been able to discharge a patient, usually they went back down to the peds floor first.

She only wanted to eat cheerios. Comfort food, you know.
Here's a smile!

On our last day at the hospital N had to prove her strength by taking a short walk. When we reached the double doors at the end of the hall and went through she kicked up her heels with sheer joy as if to say “I’m free at last!”. It was one of the funniest things I’ve ever seen and the nurse and I could not stop laughing.

Since her surgery, N has grown much taller, although she is still very petite for her age, and she continues to be energetic and active. She has had regular checkups with her cardiologist every six months and until our most recent visit in May, everything looked fine. The doc did another echocardiogram and I could tell that something was different this time by the look on his face and the length of time he spent looking at multiple views of her heart. He explained his concerns and then said he wasn’t absolutely sure that there was a serious problem and there certainly was no need to be overly concerned. She was not exhibiting any outward symptoms of cardiac distress. Of course, being a mom, my mind jumped immediately to panic mode so my memory of his explanation is a bit blurry. The gist of it is that there still may be a problem with the coarctation of the aorta and that we need to get an MRI to find out exactly what is going on.

The MRI is scheduled for this coming Monday at 10 am. If you think of us we sure would appreciate your prayers. Especially for a very hungry, thirsty (she has to be NPO before the MRI) and anxious 5 year old who still hates going to the doctor. Can’t really blame her though, can you?

Thanks friends,



Becky said...

Thank you for letting us all know how to pray. I didn't realize the MRI was scheduled so soon. We will be out of town but praying for all of you. When I think of N, I think of energy and spunkiness and I forget about needing to keep praying for her heart. We love you all!


Kramer Family said...

You will be in our thoughts and prayers. Let us know what you find out. Give her hugs and kisses! Good luck at your appointment.

Anonymous said...

Hi Jen! Just reading this... hope things went okay today. You will all be in my prayers.


Daiquiri said...

How long have I known you, and have never heard this story? Some friend I am! Thanks for sharing this story...what an ordeal. That picture of N post-op just about killed me!

I hope you've had/will have good news on the most recent scan. Keep us posted!

Tracy said...

I miss you, Noelle! :0)
You are in my prayers. . . however, I know you are a strong and beautiful girl who can do anything! Look at you now. . . Keep your smile and I am sending you my hugs.