Doctor Visits

It is ironic that while I have been remembering and writing down Allyson's journey with CHD I got a call from Dr. Bose's office to schedule our yearly visit (not until June).

After our initial visit with Dr. Bose in the NICU we soon became regulars in his office.  Our first visit to his office was only a week or two after leaving the NICU.  When he had talked to us in the NICU I didn't comprehend much from what he was saying, I was in shock (not to mention a postpartum emotional mess).  I remember sitting there listening to him and looking at a diagram of the heart thinking, I should understand what he is talking about.  I have taken anatomy (well animal anatomy!) but I couldn't wrap my mind around it.

In our many subsequent visits we got to look at many images of Allyson's heart and watch it function.  I understood her condition and the risks involved with it. I learned how to recognize the sound of her heart murmur.  It was so loud that Steve and I could hear it just by putting our ear on her chest.  I could see the hole between her ventricles and the flap of tissue that would move with the flow of blood as her heart pumped.

Dr. Bose

I really appreciated Dr. Bose and his assistant they were wonderful.  Every visit was positive and upbeat, even when talking about the possibility of surgery. We were so very lucky that Allyson never suffered any of the many symptoms that can accompany a heart defect.  Hear heart was able to function well enough that her body we supplied with plenty of oxygen.  

There were two things that Dr. Bose paid careful attention to in each visit.  He wanted to see if the hole was starting to heal itself.  In many VSD cases the hole will simply heal itself over time.  Steve and I agonized over those few millimeters each visit hoping and praying for some change.  There was only one visit where there was a minute difference and we hoped her heart would heal itself.  Unfortunately every other visit showed no change to the size of the hole.

The main concern with Allyson's situation was the location of the hole.  It was very near the aortic and tricuspid valves. The concern was that the hole would put stress on the aortic valve in particular and scar tissue could pull the valve so that it wouldn't close properly. If the valve became damaged it would have to be replaced.  Since valves grow as a child grows that would require multiple surgeries as Allyson grew until she was an adult.  We played the waiting game as long we we could.  Dr. Bose was very clear, he wanted to give Allyson's body as much time as he could to heal itself, but he didn't want to wait so long that the valve became damaged.

Surgery, in the form of a VSD closure, had been on the table from the beginning.  Always a possibility.  I appreciated this because it was never a surprise, we hoped it wouldn't be necessary but we always knew it was a possibility.  Sometimes as it got closer to a Doctor appointment I would refuse to listen to Allyson's heart, I was afraid I would hear the murmur.  When the time came to make the finial decision both Steve and I knew in our hearts surgery was the best option.  Not the option we wanted but the one that would be the best for Allyson in the long term.  I was shocked how calm I was when Dr. Bose told us that he felt it was time to schedule the surgery.  We could only agree, knowing he was right and we were confident in his decision.  I didn't even cry, I was very calm and felt assured this was the right decision. That was a blessing from our Heavenly Father to feel peace and confidence about the decision. 

After the bath, pre surgery 

I cried many times after that but I always knew this was the path we had to take.  Once when giving Allyson a bath I had to have Steve come in and take over for me.  I couldn't handle looking and her perfect skin knowing there would be a scar on her chest soon.  Even though I knew it was for the best it took a lot of strength and prayers (our own and others) to grapple with that decision as the days ticked closer to her surgery.

The next post will be about Allyson's surgery I promise.  It turns out I have a lot more to share than I thought!