Milestones and "Easy Answers"

Wow, what a difference a couple of weeks can make! Things are moving along quick at this stage of the game.

Cassie continues to reach milestones – she reached 3lbs 9oz this morning – that means that she has tripled her birth weight! She’s also started to bottle feed this week and is looking to be a pro…only one feeding a day right now, but we’ll build on that. The most encouraging part is that as she’s feeding she paces herself and remembers to breathe. Her saturation levels stayed high for the majority of her feeding and when she does dip down a little she self-recovers by taking a few deep breaths. She’s also awake for longer periods now…a little thing, but it’s just SO nice when she spends a little time just looking at me and it’s so encouraging to see her start to become more interested in what is happening around her.

Over the past couple of days she has backtracked a little and is experiencing more A+B’s (Apnea and Bradycardia episodes) than is normal for her. This is when she stops breathing for short periods of time and her heart rate drops and could be caused by a couple of things. It seems to happen fairly often after her feedings, bottle or tube, and that could point to her experiencing reflux. But she also had her first immunizations two days ago and it seems that it’s not uncommon for pre-term, especially low or very low birth weight, infants to experience more cardio-respiratory episodes for 48-72 hours after vaccinations. So we’ll document and wait and see…

That brings me to the “Easy Answers” part of my post. Because it’s a new month we have a new team of doctors and it takes time for the new docs to get to know us parents and for us to get to know and trust them. When it came time to authorize the immunizations I had a few questions. I don’t have any real objections to vaccinations per se but I wanted to make sure that there were no increased risks due to Cassie’s prematurity. I “thought” this was going to be a simple discussion. Let’s face it; I really just wanted to reassure myself that they had considered Cassie’s prematurity when ordering the vaccinations. The first night I requested more information, I was given the standard info sheets handed out with every immunization and an intern was paged to come and talk to me. I waited patiently for sign-out rounds to finish, then waited a while longer while the whole crew went to their room to talk, then waited a little less patiently when a group of them left the NICU and some stayed in their room, and finally I left close to an hour after the page when the group that left came back in carrying their dinners and the other group left for home. I let the nurse know that I’d authorize the vaccinations as soon as someone had the time to talk to me, but that I couldn’t continue to wait while they finished their dinner because my other children were at home and waiting for their dinner. The next day, one of the pediatric interns was waiting to talk to me when I entered. I asked my questions and was reassured that the AAP recommended immunizations at two months regardless of gestational age at birth and that there were NO added risks associated with prematurity. So Cassie got her shots, experienced a slight fever, was treated with Tylenol and that was that.

Until last night…Cassie bradyied while I was holding her last night – her heart rate dropped from 160 to 50 and it took quite a bit of stimulation to “bring her back”. She’s definitely had an increase in these episodes over the past couple of days. Now, I’m pretty good at handling desats, but I have a very hard time when she brady’s. Whenever her heart rate drops it just scares the hell out of me. I talked with the nurse and pedi-intern about it. We discussed that it could be reflux, or that she’s outgrowing her dose of caffeine which treats her apnea. Both of these things “could” be the answer, but when I came home and started to look for more information I found three separate studies that indicated that there is a higher incidence of A+B episodes in premature infants after receiving immunizations. All three studies seem to agree that the episodes were not clinically significant, and recommended that immunizations still be given at two months chronological age, but that they be followed by cardio-respiratory monitoring in a hospital setting. Since the bottom line is still that immunizations be given at two months regardless of gestational age then what the pedi-intern told me was appropriate right? NO! What I needed to be told is that there might be an increase in A+B’s but that they still recommended the vaccinations and why. It might not make a difference in the outcome, and certainly might have required more time be spent educating me, especially because mentioning brady’s would have set off my “Mommy Alarm”. But I would have had complete information, I would have been as ready as possible for seeing more A+B’s, and I would have had complete trust that my child’s docs shared all the information with me.

Now, the situation is entirely different. Cassie did get her immunizations but something valuable has been lost in the process. Her increased cardio-respiratory events could be for any number of reasons and only time will tell if we ever know for sure at all. In fact, it’s pretty likely that they are due to reflux considering the usual timing after feedings. The studies I found might even be flawed, I’m perfectly well aware that I’m just not educated enough on the subject to know for sure. I even understand to a certain degree why I was given the “easy answer” – immunizations are one of the “hot” topics between parents and docs. But let’s compare this to the steroid treatment discussion with the previous team of doctors. In that discussion, Cassie’s doctor addressed my concerns, shared with me all of the information he had available, explained the possible complications and then explained why he still felt they were the best course of treatment. He even acknowledged that time and follow-up may prove him wrong. He took the time to educate me and although I still worry about developmental problems later on I trust that we all did the best we could with the information that was available. Did it take longer to get me on the same page? Certainly, but it developed a trusting relationship.

That didn’t happen this time around…this post could just as easily be titled “The making of a difficult patient”.