Tuesday, October 30, 2007

That Darn Reflux

As I've mentioned in previous posts, Max has severe GERD (Gastroesophageal Reflux Disease). He had a Nissen Fundoplication just before discharge from the NICU, and was also given a g-tube so that we could finally go home. He's relied on his tube for nutrition ever since, although he did have a solid oral eating phase for about six months in 2005. Unfortunately, he was not able to consume enough calories by mouth to sustain his weight, let alone continue growing as needed.

Last year, right around this time, Max's reflux episodes (which are characterized by severe choking, gagging and wretching, eventually vomiting really thick mucous) were becoming very frequent and so severe that he was experiencing difficulty breathing. The mucous was just so thick and so abundant that he would have trouble catching his breath, and start turning an awful shade of purple/blue/red. So, we landed in the ER of our local Childrens Hospital, then were admitted for observation. After several x-rays and consultations, it was determined that the quickest way to relieve the symptoms would be to place a gj-tube (a tube that threads through the stomach into the jejunum, the upper part of the small intestine). By bypassing the stomach, it would have a chance to rest from all the wretching, and it would prevent any chance of aspiration. The disadvantage of j-tube feedings is that the jejunum can not handle large volumes, so Max was on more or less a continuous feeding schedule. We were doing well with that, and after 6 months, the GI docs suggested we slowly begin to wean him back to a more physiologically appropriate feeding schedule of 3-4 bolus feedings a day, through the g-tube. After a few months on that type of schedule, we removed the gj-tube, and replaced it with the familiar mic-key g-tube.

Max had been doing really well, with only an occasional episode here and there, usually triggered by lots of laughing after a feeding. We'd have maybe 3 or 4 episodes in a month. Well, over the past couple of weeks, we've seen a dramatic increase in episodes, more like 3 or 4 PER DAY! It's incredibly uncomfortable for him and very worrisome for us. I'm hoping that by decreasing his overall volume and slowing down his rate, we can get over this hurdle. We had been noticing that his respiratory system seems more taxed recently, too (we've had some terrible fires in this area -- southern CA -- and, though we were never in imminent danger, the air quality has been poor for quite some time). There must be some relationship between his respiratory issues and his GI issues.

I'm not sure what we'll do if the symptoms persist. We have some "wiggle" room to continue manipulating his g-tube feeding schedule, even to the point of doing some portion overnight. Ah, well, we'll just have to cross that bridge when we come to it.

Friday, October 19, 2007

Reunion and Remembering

Tomorrow, the NICU that was home to Max and Zoey will have its annual reunion. We've attended for the past three years, and each year, we see more and more babies who have survived; but oddly fewer and fewer of those from our group. It's an exciting time because we have a chance to catch up with the doctors, nurses, and respiratory therapists who were instrumental in our care. And, they, in turn have a chance to see how Max is progressing. We are incredibly fortunate because Max is doing so much better than any of the doctors and nurses thought he would, considering his fragile beginnings...and yes, the brain bleed (a grade 3/4). But, I often wonder where the children are who are NOT doing so well. In the past three years, we have not seen one child in a wheelchair. In fact, all of the children we've seen, with the exception of Max, were moving about appropriately for his or her age. I would imagine that families whose children are not doing so well choose not to attend, and that saddens me because these children deserve celebrating too.

We have a fondness for our NICU (and, yes, I do consider it OUR NICU) because it was the only place outside my womb where our twins were together in life. It is the only place where people outside our immediate family and close circle of friends knew our daughter, Zoey. In fact, besides my husband and myself, the nurses and doctors got to touch her and hold her more often than anyone else. And, because Max was a NICU resident for so long, many of the nurses are now close friends of ours. It is with them that I feel most free to talk about how much I miss our daughter.

Sunday, October 21st, is the 4th anniversary of the day that I was hospitalized after a routine perinatologist appointment because I was dilated and effaced (in preterm labor) and I didn't even know it! Three weeks later, Max and Zoey were born via emergency c-section because of a placental abruption that required immediate delivery. Max's placenta was tearing away and he was going into distress.

So, over the next few weeks, I anticipate being flooded with memories, and emotions that I can't quite place. Then I'll remember what time of year it is....

Sunday, October 14, 2007


A couple of weeks ago, I set up a parent-teacher conference with Max's preschool teacher. School has been in session for about a month now and I wanted to get his teacher's opinions on how Max is doing, generally. Max started the program in late January of this year, and we've seen great progress, most noticeably in his communication/speech. And, because this is a program primarily for kids with orthopaedic handicaps, the teacher is incredibly knowledgeable about how to facilitate movement with the end goal being independent mobility. She has been a tremendous resource for me in terms of understanding what Max's needs are in the areas of gross and fine motor skills, more helpful than his therapists have been. And it is usually during our conversations, short or long, that I gain new insights not only about my son, but also about myself as a parent of a child who has CP.

Here's the most recent one: ever since Max started crawling (just before his second birthday), we've been pushing for him to walk. By "we", I mean myself, my husband, physical therapists, doctors. Our thinking was simple, "Now that he's crawling, the next step is obviously to get him up on his feet." What we didn't take into account is all the incremental milestones that need to be met in order for him to be strong enough to even consider taking steps.

What his teacher, and watching my daughter, have taught me is that Max will "walk" in his own time. Of course our hope is that he will eventually be able to walk independently, with or without some assistive devices. But, it will be when he is ready; not simply because we will it to be so. When Jozey started walking independently, there was never a question in our minds that she would, so we just let her do what she needed to do to learn about how her body works. We've never done that with Max. With every new functional skill achieved, we've kept pushing and pushing for him to get to the next one, without realizing that he needs time...time to get used to this new skill and make it his own, before he's open to a new experience. I have been imposing MY timetable on his development, rather than allowing his development to progress organically. Certainly, intervention IS important, and necessary. Early intervention is why we are where we are today. But, there has to be a balance between intervention, and allowing Max to be a kid and enjoy what he is capable of.

Max has been pulling to stand quite easily, and now is strong enough that he cruises furniture and is even making attempts to stand without any support. Of course, we're thrilled! But, what's more significant is the look of satisfaction and pride on his face when he does these things alone -- without coaxing, without someone standing over him telling him to do it. Every so often, I'll hear his voice from the kitchen saying, to no one in particular, "Look, I did it all by myself!"