Normal

I have been moved to write this update several times over the last couple of months, but I haven’t been able to actually sit down and do it. So what stopped me?

Many of you have told me you were impressed by how positive I was in the first few posts. The truth is I haven’t always felt positive over the last few months. Having James home from the hospital by myself, having Alex back at work full time, it was hard. There is no other way to describe it. 

I have spent the past 3 months trying to find this mysterious thing commonly referred to as “normal”. I’ve found myself hearing/using that word a LOT lately.

Doctor XYZ: “What does a normal day look like from James”
Therapist: “The normal range for X developmental milestone is….”
Me: “How is that different from a normal baby…?””
etc.

What I have to keep reminding myself is that “normal” doesn’t exist. James is writing his own story. Yes, we can work to get him on a schedule. Yes, there will be days that are more typical than others. But expending energy trying to figure out how he compares to “normal” is a waste of time and could be a major point of stress if I let it be.

So what have we been up to?

Over the past 13 Weeks, we have gone to 12 doctors’ appointments, and had 12 therapist visits. We will average 1 appointment a week with various specialists through his first year. At that point, hopefully, we will be able to go longer in between visits.

Why so many appointments?

Some were typical pediatrician appointments, some were following up from his hospital stay, some were introductory to help us understand his diagnosis, and some were to prepare us for his upcoming heart surgery.

When is he having his heart surgery?

This is the (late) update that is going to get me in the most trouble with the public… James is having his heart surgery next Tuesday(1/19). We found out the week before Christmas that the cardiologist wanted to move ahead with the surgery earlier than expected. Everything is fine, but at the slow rate that he is growing, they feel it would be more beneficial to go ahead and fix his heart now rather than wait.

Why is he having surgery?

James has what is called a Large VSD (Ventricular Septal Defect).For those of you who know someone with this defect, it is fairly common. His specific hole is not correcting itself like some others may have, and that is why we are having it surgically closed.

You can read more about VSD  here.

http://healthlibrary.epnet.com/GetContent.aspx?token=83ee77b6-5d7c-451c-b269-7f0bab6eb1f5&chunkiid=223520

We appreciate all of the support and kind words from all of you over the past several months. Keep the prayers and good thoughts coming! I truly believe that they are helping.

The first week: We make plans and God laughs

Our precious baby James turned one week old yesterday. We celebrated with his grandparents, his Aunt, and a couple of close friends in the OR Waiting room at Cooks Children's hospital. 


James was born on Thursday, September 17th, at 8:07 pm. Mom and baby came out of the C-section looking great. James got to meet his family, and then he, Mom, and Dad settled in for their first night in the hospital. 


The first doctor to walk in our room the next morning was the hospital pediatrician. He was there to let us know that he believed James showed signs of Down syndrome, and wanted our consent to send some blood off for genetic testing.


In that moment I was barely awake, and didn't know what to make of what he was saying. Down syndrome?!? Seriously?!? Surely this guy was wrong. My baby was perfect. Alex and I were worried that the test might come back positive, but we were just sure that the pediatrician was being overly cautious. Surely we had nothing to worry about. We got through the rest of our hospital stay, and headed home Sunday afternoon. 


Monday morning I called and scheduled all of our follow up appointments. His pediatrician wanted to see him that afternoon, so we packed the diaper bag and set out for his first outing. We were only going to be gone for an hour, so we packed lightly. 


All snuggled up in an adorable outfit, we headed off to the doctor. We were taken back to a room pretty quickly, and I started filling out a mountain of paper work while Alex helped the nurse check James' vital signs. The doctor walked in, introduced herself, and that is the moment that our world completely changed. 




The crazy hospital pediatrician was right. The test was positive. James had Down Syndrome. 


I was completely devastated and overwhelmed by the number of questions I had swimming around in my head. Will he stick out at school? Will he be able to make friends? Will he be made fun of? Will he ever be independent? Will he have to live with us for the rest of his life? How do I raise a special needs child? Can we do this? Where do we start? What do we do now?


I was trying my best to silence the questions so I could listen to what his doctor was saying, but it was really hard to concentrate. I tuned back in when Alex started asking questions. Apparently the doctor had been giving us a list of basic things to watch in newborns. She was saying that we needed to go to the emergency room if his temperature ever was higher than 100.4 or lower than 97.6. Alex pointed out that when the nurse took James's vitals, his temperature was 97.5. Dr Wallace got out her thermometer and said we better double check his temp. This time it was 97.4. 


I was already a mess, but that is when the bad news really started spiraling out of control. After several minutes of trying to raise his temperature, it only continued to drop. We were told that the next step was to take him to the Cooks Children's emergency room, but that they didn't suggest that we take him ourselves. The ambulance was on its way to transport us. 


... Ok wait a minute... We just came here for a quick check up. Now we are leaving in an ambulance?! This can't be real... People have normal healthy babies everyday. What were we doing wrong? 


The transport team showed up. They checked his vitals again, and took him in the hall to load him into a warmer while Alex and I signed the first of many consent forms and gathered his things. I stepped out in the hall and saw him hooked up to several monitors and strapped into the warmer. It was hard to watch. How had we gone from having a happy healthy baby to this? 



Sometime during the trip to the hospital, it was decided that James would be admitted directly into the NICU. We were skipping the emergency room entirely. We spent the next several hours running tests and waiting on the results. They left no stone (or organ) un-turned. He was given an entire work up from head to toe, and they were checking specifically for Down Syndrome related complications. By that evening it was determined that he most likely had a disease called Hirschsprung's disease (a defect in his colon) and a hole between the left and right chambers of his heart. James was 4 days old, And it looked like he would be facing two major surgeries. 


The next morning we had a plan. We were going to start by fixing his colon. That surgery would take place within the next 48 hours. We were going to continue to monitor his heart, but ideally they wanted to wait until he was at least 4 months old to perform the procedure to close that hole. 


After a couple of days spent making sure that the Hirschsprung's diagnosis was correct and evaluating the extent of the problem, James had the surgery to fix his colon. The surgery went really well, and he is currently resting and recovering. If all goes well over the next 48-72 hours, he should be able to start feeding. 


Alex and I are extremely grateful for all of the love and support we have received so far. We still have a long way to go, but James is proving to be strong and resilient. 

We will do our best to keep this blog up to date with his condition for anyone that wants to follow along as we are introduced to our new reality. 



P.S. For any of you that are avid "googlers", like me, and want to do some research on James' condition, I highly suggest you start by using the resources on the Cooks Children's website. There are a lot of scary, non-factual websites out there.