Since many of you don’t follow me on Facebook, I am going to give everyone a medical update on James.
First and most exciting, James is up to 6 lbs 12 oz as of yesterday. This means that in a month, he has gained 28oz. A “normal” baby gains about an ounce a day, so James is actually gaining just like other babies (although he didn’t for his first month of life). That is thrilling news. It is exceptionally exciting because it indicates that his heart failure is under good control at this time. Heart failure is a wasting disease and causes weight loss or failure to gain/thrive. The fact that he is gaining so much weight is an indication that his heart is doing pretty well at this time.
In more good news, we had an outing yesterday that he handled great. We went to the pediatrician for his 2 month vaccines. His pediatrician recommended breaking them up a little, so he only had to have two shots. He did not appreciate them, but he recovered quickly. Afterwards, we went to Evaline’s preschool for her surprise birthday party (she turned 5 yesterday). She has been asking to have a surprise birthday party for the last several months, so we planned one with her teacher. James did very well for that visit as well. It was great to be out as a family, enjoying the beginning of autumn.
In other, less thrilling news, James is anemic. This is normal in babies his age. At around 2 months, they reach a physiologic nadir, at which point their red blood cells will be fairly low. It’s not a problem with a baby that does not have heart disease, but for James, it makes his heart work harder, and it can make him weaker/more lethargic. He may also have some iron deficiency, although his nutritionist is confident that he is getting plenty of iron via his formula fortification. Other less likely causes of his anemia could be GI bleeding (nasogastric tubes can cause irritation to the stomach lining), viral illness (he has had a cold for a while), or a bone marrow issue.
Tomorrow, he is having some more testing. First, he is having an abdominal ultrasound. Unfortunately, trisomy 18 predisposes children to 2 types of aggressive cancer – Wilm’s tumor (a kidney tumor) and hepatoblastoma (liver tumor). These can occur at any time in their lives – even 2 weeks after birth. We have to monitor for this every 6 months with abdominal ultrasounds.
He is also having an ultrasound of his sacral dimple. This is a divot just above the buttocks. It’s common in children, but in a trisomy 18 baby, it can indicate a tethered spinal cord or other spinal abnormalities. We can see the bottom of his, which is a good thing, but we are erring on the side of caution and having it checked. Lastly, he is having more extensive bloodwork done to check his iron levels and to see if his bone marrow is regenerating as it should be in the face of the anemia. We are not fortifying him with extra iron at this time, as it can cause constipation and stomach upset.
If his bone marrow is being lazy, he might need a blood transfusion to boost his red blood cells until his body catches up. We’re not wild about the idea – because he’d be in the hospital for 24 hours, need an IV catheter, and would be undergoing a transfusion (which isn’t a benign process – though relatively safe). If he needs it though, we will proceed.
Otherwise, no major problems have currently manifested themselves. He seems to be thriving. We have adjusted to our current “new normal” – as special needs parents refer to it. It is still hard though. Last night, I was lying in bed and looking at him, nestled against my chest. My eyes traced the lines of his face, memorizing him. I couldn’t help but feel sad that his poor face was half covered by his oxygen cannula and feeding tube. My mind went back to December, when I found out that I was pregnant again, and all the excitement I felt about having another baby to nurse, to love, to watch grow. I never foresaw this kind of life – for either of us. It made me inexpressibly sad for the things that I’ve lost. For the things that James has lost – even though he will never know.
Still, I am tremendously grateful that he is still here and doing so well. I cherish each day with him, inhale his scent to memorize it, hold him on my chest to firmly imprint the memory of that warm baby weight in my mind for all time. He is so loved and cherished. I cannot imagine anyone labeling him as “incompatible with life.”