October 7, 2011

#1 Defender

Last Thursday, I was frantically running around my house, trying to clean up before our babysitter arrived to watch Luke when I noticed a missed call from the Sanger Clinic and a voice mail. Since we were due to be at the hospital for our pre-op appointment in two hours, I wasn't sure what they could be calling us about. I dialed it up and listened as a woman told me to stay at home, do not come to the hospital, and to call her back when I got the chance. Despite the fact that her message wasn't really alarming, I found my heart hammering as they connected me to her phone. She explained that she was a nurse practitioner for the clinic and that they had made some changes to the surgery schedule that morning due to new patients who needed Samuel's surgery slot on the 6th. (And by new, I mean brand new. As in newborn. I am so glad we at least got to bring Samuel home for a while before we had to face this surgery. I can't imagine what those families are going through.)

I was completely understanding of needing to give Samuel's slot to someone else, but I was wildly confused when she then said it had been rescheduled to the end of the month. They were waiting on our (out of town) cardiologist to weigh in on the debate, but they were penciling us in for the 27th for now.

At our 4 week follow-up visit with the cardiologist, they explained to us about Samuel's PDA and how the high pressure in his lungs meant he wasn't exhibiting the expected signs of heart failure that his AVSD should be causing. Since this was new information for us, it really hit us hard when he explained that because the pressure wasn't dropping, it would eventually cause irreparable damage to his lungs and we would not be able to wait until he was 3-4 months old to do the surgery. He said if nothing had changed by his 6 week visit, we would schedule the surgery for some time in the weeks just prior to his turning 2 months old.

So, when nothing changed at the 6 week visit, the cardiac team (surgeons, cardiologist and the rest of the staff) met and discussed Samuel's case and then decided to do the surgery on Oct. 6th. He would be turning 10 weeks old that day. Travis and I were already feeling like we were being a little risky in waiting until he was already past that 2 month mark, so when the NP said we would be pushing it back to 3 months because they wanted him to be bigger, we were confused, upset, and a little frantic. The information she had about his weight was inaccurate...he was already 1.5lb larger than the weight she had. We felt like maybe Samuel's case was slipping through the cracks a little. Travis got on the phone immediately to try and track down our cardiologist, while I had to change diapers and fix bottles and pump and keep the toddler from running out after the school bus.

We tried to keep things in perspective, since we knew a major voice was missing from the conversation, and that the cardiologist would be back soon to weigh in. However, it took a big chunk out of our confidence level of the doctors who were making these decisions about our son. We couldn't figure out why they would have scheduled the surgery initially for 9 weeks, when really they wanted to wait until he was bigger. What was better for him? To be bigger or to protect his lungs? We didn't know and we were counting on these men and women to tell us what was the best thing for our son. For them to change their mind suddenly, it just threw us into a tailspin.

It was a bad day.

Here's the thing about suddenly becoming the parent of a special needs baby with a heart defect that is going to be the hardest for me: You have to be the one who advocates for your child. I am not a cardiologist, geneticist, educator, physical therapist, or any other of the myriad of professions my son is going to need in his life. I went to school for music and religious studies. I can teach him to sing and love music or tell him about Jesus. I cannot know if he should be receiving therapy for his low muscle tone at 2 months or if it's okay to wait until he is 4 or 5 months old like our case manager says. I do not know how to teach him to nurse, despite all my attempts. I will not know the best ways to teach him to count or read or learn. I barely even understand the heart condition he has, so I haven't the slightest clue how to weigh the pros and cons of his current situation.

But, while I have no idea how to answer many of the questions facing us about our son, I do know that it is my job to find the best qualified people who CAN answer them. I'm going to have to fight for him, to confront those who give conflicting advice, to track down other doctors or specialists, and be relentless in this pursuit of giving him the best life we can. This is almost the exact opposite of my personality.

Samuel is lucky that his father, while like me in many aspects, is better at this role than me. Together, we are learning how the system works and how to do our job as his #1 Defender and Advocate.

I know that this is the same role we fulfill for Luke, or that any parent takes on for their children. But in Luke's first two years of life, I've never once had to go out of my comfort zone in order to make sure he is getting what he needs. I've had to constantly push against natural tendencies since the day Samuel was born. He's just making me work a little harder at this than Luke has so far.

In the end, the cardiologist was reached and they decided to just push the surgery back one week. We went in yesterday for our pre-op appointment and will be returning bright and early Wednesday morning for the surgery.

Because we thought we would be doing the surgery on the 6th, we planned on doing Samuel's baptism on the 2nd. Initially we'd scheduled it for November to accommodate all of our out of town family and friends, but we wanted it done before the surgery. We wanted our families and sponsors there, but had accepted that it could not happen on such short notice. But we were wrong. Every family was able to send at least one person to represent them at the baptism. It was such an out pouring of love on our family to see the lengths to which these people went to be there for Samuel and for us.

That was a good day.

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