Its hard to understand how small Brandon and Katelyn really are, even for us because we are so used to seeing them and they are normal to us. A few weeks ago we went to see an Endocrinologist who did not hesitate for a second to tell me they need growth hormones. Their growth hormones had been checked in some lab work a few months ago and had been normal so in our minds we were past that. One more bullet dodged, I thought. I was so surprised at the Endocrinologists' suggestion of growth hormones I really couldn't even articulate any questions at the time. So in the last couple of weeks we've done some research and we've learned a lot about our situation and about growth hormones.
We have had a couple of doctors explain to us in so many words, there is small (like I am) and then there is small (like where they are headed). They are approaching their 2nd birthday this summer and although they are maintaining their own growth curve, they are not making any progress in catching up, which most preemies do by this age. So some of the scenarios we have been presented with is "you're small and may have difficulty doing certain things, but you can function. They might not be able to drive, you may not be able to ever take your family to Disneyland and potty training will be very difficult at a normal age with them being so small." So both Brandon and Katelyn will already have some things that make them "different", but this is something we can help them with.
Growth hormones will mean a shot each day for a long time. Now it is a pin device, not a big needle or anything, but still. This will need to continue until they reach a specific bone age - 13 for Katelyn and 16 for Brandon. A really long time! Although there are some possible side effects, they are all things that can be watched for and will go away when the drug is stopped. So there is no real concern about side effects.
Both babies qualify for a couple of reasons - they were IUGR (intrauterine growth restricted) and were SGA (small for gestational age). So even though they have a normal store of growth hormones they don't have enough to make up for the deficit they started life with. In spite of this medically sound argument, our insurance will not cover growth hormones under any circumstances because it is an exception to our policy. So we are in the process of applying to the Pfizer Patient Access Network. They help people whose insurance won't help or who don' t have insurance but who need the human growth hormone they make. We'll see if that works out. If not we'll have to continue to look for sources for financial help. The endo nurse told us based on their current size the drug will cost $795 per child each month. This will increase based on their size. This is so insurmountable a cost that we have no choice but to leave it in the Lord's hands. We will of course do all that we can to see that it happens, but the outcome will be in His hands - not ours!
2 years ago