Tuesday, March 27, 2007

Holding Back Tears

We were getting ready for school this morning and, as usual, we were in a rush. In order for us to get to my son's preschool on time, we need to leave by 7:40 at the latest. I thought we were doing fairly well for time as we were able to get out the door by 7:40 on the dot. But, just as we were leaving, I noticed my son didn't have his braces and shoes on yet. So, I carried those out to the car with me while my husband carried our daughter. Both settled in their car seats, I started the process, for it is a process, of getting my son's braces and shoes on his feet. Max wears DAFOs (Dynamic Ankle-Foot Orthosis) to improve stability and break up some of his high tone due to cerebral palsy. In order to get the braces on properly, both he and I need to be in good positions -- i.e. me directly in front of him so that I can make sure his foot is placed properly. Needless to say, trying to put the DAFOs on while he's in his car seat is a bit trickier because we're at right angles to each other. So, it takes a little longer...so much for getting to school on time.

Once the braces were on, his feeding pump began to beep signaling that the programmed dose had been delivered. (Just to give some background here, Max had a g-tube placed before discharge from the NICU almost 3 years ago. He never got the whole suck-swallow-breathe process and, after 5.5. months, that was the only obstacle to his coming home. So, we made the decision to place the tube during surgery for a Nissen fundoplication -- to address reflux -- and work on the feedings at home.) So, he's had this g-tube for years. Recently, back in November, it was changed to a gj-tube because his reflux symptoms were getting so much worse, even on medications. A trip to the ER at Childrens go us admitted for a week. X-rays indicated that the fundoplication had slipped, suggesting that he might require surgery. My husband and I were not convinced that that would solve the problem. We insisted on waiting and having additional tests done so that we might rule out some other possibilities. In the meantime, in order to decrease the risk of aspiration, we decided that j-tube feedings would be a good idea. (A j-tube empties directly into the jejunem, a portion of the small intestine, thus bypassing the stomach altogether. The patient still gets the nutrition he needs; but the stomach has a chance to rest from the trauma of continuous reflux.)

So, he has this gj-tube, which has been working out very well for him. One annoying problem, however, is that the j-tube port will sometimes come "unplugged" while we're using the g-tube port, causing some of its contents to flow out of the tube. There is a distinct odor to this fluid, reminiscent of sour milk mixed with bile. When I pulled up his shirt to pull out the tubing, I noticed that the j-tube port had come unplugged and there was a very wet patch on his undershirt, as well as his t-shirt. He couldn't go to school like this, so I went back up to our apartment, got a new shirt and changed him in the car.

This is wear the title comes in. I noticed as I was changing him that I had this lump in my throat and I was very emotional. I was frustrated that, yet again, we were going to be late. But I was also very sad for my son who has to endure the discomfort of wearing DAFOs, of having a hole in his stomach and just generally all the handling that takes place when a child has a physical disability. I was overwhelmed with a need to cry, but felt it wasn't appropriate to do so in front of this sweet boy who brings so much joy to our lives. He puts forth so much effort daily to execute the most seemingly simplest of tasks. Compared to what he must endure, my own emotions seem selfish and trivial. Of the two us, I think my son is more justified in his tears.

And, yet, I have these moments of holding back tears and I realize that I am still grieving. I grieve for what could have been, should have been.

Saturday, March 24, 2007

Full Circle

In high school, I thought it would be a great idea to volunteer as a candy striper (that's what we called student volunteers back then). Selfishly, I also thought the experience would look good on my college applications and help introduce me to the medical profession because, at the time, I thought I wanted to become a pediatrician. My assigned area was "Child Life". It was a new area (this was the early 80s) and an attempt to address the emotional and psychological needs of these very young patients who were chronically ill and had long hospital stays. (Most recently, my son was hospitalized -- his first since NICU discharge -- at Childrens Hospital in Los Angeles and they had a play room for the kids, staffed by professionals. It reminded me of those early days.)

What strikes me from that experience is the fact that I was assigned to the Peds Neurology floor, and I interacted with children who had challenges such as hydrocephalus, seizure disorders, CP, and other traumatic brain injuries. I remember thinking how challenging it must be for the parents of these children to lead normal lives. And, here I am now, 20+ years later, with a child who has CP and a brain injury. And, I regularly come into contact with people who forget that he's a child, first and foremost and his challenges are only a small part of who he is as a person.

When I think back to that experience, I think to myself that perhaps I've come full circle. I always wanted to be in the medical profession. My life took a different turn during college, and I did not pursue medical school; but here I am now, with intimate knowledge of my son's medical needs and dealing with medical professionals from various disciplines on a regular, sometimes too frequent, basis.

I am beginning to appreciate, though, this cyclical nature of life's journey. It reminds me that even to the most difficult challenges, there will be an end and there will come a time when the challenges are less daunting. Endurance seems to be the key; endurance and peace.

Thursday, March 8, 2007

The Power of Language

In a rare husband-wife moment (you know, those brief intervals between putting the kids to bed and doing the dishes before you can get yourself to bed), my hubby and I were talking about our son. Until recently, we have never used the word "disabled" to describe our sweet little boy. We've used terms such as "delayed" and "special needs". The word "disabled" evokes such negative images that we simply do not associate with our boy. But, the fact remains, disabled is what he is. At 3.5 years of age, he does not eat, he can not dress himself and he is unable to walk. These physical limitations most definitely impact the experiences of his day to day life, and ours as well.

This increased sensitivity to my son's physical challenges is most likely sparked by the ease with which my younger daughter is hitting her milestones. She started crawling last month; first a few tentative rocking movements, then full on reciprocal crawling within days. My son was almost 2 before he started to crawl. In watching her development, I better understand how my son's physical limitations have impacted his development. And, this makes me sad. He struggles. His body doesn't move with ease; he must make a conscious effort to turn his waist, or sit with his legs crossed in front of him, or out to the side. We are constantly reminding him, cueing him, to put his body in certain positions in order to facilitate overall body awareness and strength so that, one day, he will be able to walk. But, my daughter just does it. Her body naturally gets into these positions, and I am awed. I think "My, she's precocious."...but really, she's just typical. And that's when it became clear to me that my son is disabled.

And being able to say this actually makes it easier to accept him for who he is. It's really a flaw in my own thinking, I suppose. When I think of "delay", I think of something solveable, something that can be fixed. My son doesn't need fixing. But, he does need to learn how to live with his physical challenges in a way that allows him to participate fully in the world around him. Sure, he'll continue to get PT, OT and Speech, as well as feeding therapy (because, let's face it, eating is one of the great joys of life) so that he might lead a more typical life....but he will never be "typical". His traumatic start has guaranteed him a life full of "atypicalness".

Saturday, March 3, 2007


When I was in college, there was a support group called "special survivors". It was for those of us who had lost parents. We would meet in one of the members' dorm rooms every few weeks and just get together and talk about our lives, how we were coping, how the death of a parent had impacted us. There were those of us who had recently lost a parent, and others who were further along in their journey through grief. And, while I attended only a few meetings, I definitely appreciated the support and comfort of knowing that I was not alone.

At this point in my life, there is another layer of meaning behind the title "special survivors". It no longer refers to me alone, but rather to my husband, and to my children. My son is a survivor, in the very literal sense of the word. He survived an extremely traumatic early birth. His twin sister did not. My twins. Zoey and Max, were born on November 10, 2003 at 2:30 and 2:31 pm respectively via emergency c-section. I was only 26 weeks pregnant and had been in the hospital on bedrest and tocolytics (to stop contractions) for 3 weeks due to signs of preterm labor ( I didn't even realize I was dilated). At exactly 26 weeks, my son's placenta abrupted and within an hour of the abruption, the babies were delivered. I had to be intubated and put under general anasthesia because the epidural was not working fast enough. My husband was by my side the entire time, describing everything that was happening. My daughter, Zoey, was delivered first and she let out a tiny cry. She was rushed over to one of two neonatal teams. My husband was able to see her for a moment before she was intubated due to respiratory distress (she wasn't able to breathe on her own). My son, Max, was born the very next minute, breech. He, too, required immediate intubation. Both babies were rushed to the NICU before I even woke up from the anasthesia.

I met my babies for the first time the day after they were born, a Tuesday morning. I remember being wheeled into the NICU and seeing these tiny little beings, completely exposed, completely vulnerable, attached to IVs and monitors, with tubes going down their throats. It was overwhelming. They were beautiful; but at the same time, it was so obvious that they were not supposed to be outside my body. We were told by the docs and nurses to expect an emotional roller coaster; that only time would tell. We were told that the first few days were critical, then the first few weeks. We heard it over and over again, this is an emotional roller coaster and we have to take it one day, one hour, at a time.

The next morning, when my husband and I went to visit the babies, the neonatologist approached us and gave us the news that Max had a grade 3 IVH (a brain bleed). Brain bleeds are graded on a scale of 1 to 4, with 4 being the most severe. My daughter had a grade 2. The doc told us he was sorry to have to give us such bad news. The next morning, a second cranial ultrasound revealed the Max's IVH had progressed to a grade 4 on the left side, and again the doc said he was sorry. As I write this, I am reliving some of the emotions of that moment. Here we had two precious babies in critical condition; but we were told that my daughter was doing okay while my son was fighting to survive. In fact, his very survival was questionable. During those first two weeks, we were told to prepare ourselves for the possibility that Max would not survive. He did!

Over the next several weeks, both babies underwent surgeries, blood transfusions and numerous blood tests. (My son still has scars from all those pokes and IVs.) Both babies 'stabilized'; but remained critical. My son's brain bleed did not progress and he never required any intervention for the IVH. After a month or so, I asked one of the docs if she could give us some indication of wether or not we'd be able to bring the babies home. We were told that it was likely, provided neither baby suffered any severe infections. Within a few weeks of that pronouncement, both babies started to come down with infections. We were told "this is typical" because the immune systems of preemies, even full term newborns, is quite fragile and underdeveloped. Both babies had several rounds of antibiotics. At about six weeks, Zoey became syptomatic of an infection that had spread to her blood, her spinal fluid and, yes, her brain. My daughter, who was considered the stronger of the two, the one most likely to come home with us, was dying. She passed away on January 9th, 2004, 8 weeks, 4 days, 6 hours and 35 minutes after her birth.

Max remained in the NICU another 3 and a half months. He had two eye surgeries for ROP (retinopathy of prematurity) and stomach surgery for severe reflux (Nissen Fundoplication and G-tube placement). Our survivor was discharged on April 16, 2004 after 158 days in the NICU.

Fast forward to today. Max is a happy, inquisitive almost 3.5 year old. He relies on crawling as his primary mode of mobility and, until recently, employed sign language to communicate with us. He has recently started verbalizing more, a direct result, I believe, of the special ed preschool he attends where he receive OT, PT and Speech. While he still relies on a feeding tube, we are hopeful that he will eat by mouth one day. We are also hopeful that he will walk, but as with everything preemie related, time will tell.

So, as our story of survival continues to unfold, I am drawn to the possibility there are others with whom I can share the journey.