Our Story: Ten Days in the NICU

That day after Belalu was born and had been sent to the other hospital began a week and a half of surreality (I think I'm making that word up) that I wouldn't have been able to anticipate. I was alone in the hospital room in town, while J and our newborn daughter were in another state. He was essentially all alone, too, as he spent the day helplessly watching as they subjected her to test after test. She continued to have blue episodes, and we were very concerned about how the lack of oxygen would affect her cognitive development. Honestly, I don't now remember all the different tests she underwent, but I know they gave her an MRI and a CT scan. It was a Friday, and by the end of the day they had some additional testing to do, but since it was now the weekend, we would not get any further answers until Monday. So, we had to accept that we would continue to be confused and scared and not have any answers to allay our fears for at least two more days. We felt helpless.

My hospital discharged me as soon as possible, and by Saturday afternoon I was with my baby again. I tried to spend as much time in the NICU as possible, but the nurses would constantly urge me back to my own room as I fell asleep with her in my arms. J was back home with Juju and Essie, so it was a quiet, lonely room, though I was so grateful for the Children's Miracle Network that allowed me to stay at the hospital for free. It was so hard, though, being in the neonatal wing, hearing all those other families loving on and enjoying their newborns and then going home with them as I continued to wait until the day we could leave with her. I believed that my newborn needed to be touching one of us almost constantly- E had slept with us from the very beginning, even while still in the hospital, so having a long hall and many walls between us was a separation that wore on me physically. The few times I left the hospital to get some fresh air and a change of scenery, I think I had something resembling a mild panic attack. I would have trouble breathing, my pulse would race, and I just felt anxious until I was back holding her again. At the same time, I was experiencing my first nights without Essie. I had never been away from him overnight before. Those four days I was worried about when I thought all I'd have to deal with was a c-section seemed like nothing compared to 10 nights in another state.

I'm not sure if it was the pain medication I was taking from the operation or just plain shock, but I felt very little emotion during the NICU days. That first day, I remember looking down at my tiny little girl, who had had a healthy, uneventful pregnancy and had been born on her due date and just wondering- what were we doing here? It was a surreal place. There were no windows and the lights were always very dim. Most of the time, the only sounds were the beeping of machines or the low talk of the nurses to each other. It felt completely removed from the rest of the world. Suddenly, we were in a new category of parents. Our daughter was most likely going to have special needs. We both come from families with very little health concerns- I always took my health for granted. I had stepped foot in a hospital less than five times in my entire life- and almost all of those times were related to visiting people who had given birth. And yet, here we were. I couldn't wrap my head around it.

They finally figured out that the blue episodes were seizures, but this lent little knowledge to her state. We were just going to have to wait and see if there would be cognitive or physical delays; if the seizures would appear throughout her life or if she would outgrow them; if she had a condition with a name or would have no further health concerns. There was one Dr. in particular who was determined to give us an answer as to why this was happening, but at the same time told us that the best news would really be that there was no answer to the seizures, because that meant she might just outgrow them without further complications. Ultimately, that's how we left the hospital: without answers. They had figured out a medication that seemed to stop the seizures (Keppra), but that left her sleeping almost constantly. She was to be hooked up to a monitor in case her breath stopped or her heart slowed, an infernal machine that would go off throughout the night because she liked to sleep on her stomach and this made her breathing shallower. We were trained in CPR in case a blue episode came and didn't go away, and I was petrified she would die in my arms, because I still had a hard time recognizing the episodes when they did come.

Interestingly, that first night I was reunited with her she was lying asleep in my arms and I was just watching her. J and I had been lovingly joking to each other about her short legs since the ultrasound, and her arms and legs did seem to be disproportionately shorter than her torso, with its hugely distended belly. Suddenly, I thought to myself, "maybe she's going to be a dwarf." "Maybe that's all it is." I didn't realize then how many health problems people with dwarfism can have, so at that moment it would have been such a relief to me to know it was dwarfism and not a more dramatic physical disability like CP, which had been proposed at one point as a possibility. When I asked the medical team in the morning if Belalu could have dwarfism, though, they resoundingly told me, no, it wasn't that. This strong negation of my guess then obviously made her diagnosis nine months later so much harder to grasp.

A Stool for Belalu

Our daycare/preschool center is affiliated with the university where we teach, so in addition to each classroom teacher, each room also has a number of university students who work there as well as other students who come in to get classroom experience while taking early childhood courses. It's a great program and has been named one of the best in the state. We've been really happy there, for the most part.

I mentioned yesterday that B's teacher told us she had ordered a stool for her and we had been taken aback, because it seemed like it was too early for those kind of adaptations. I've been thinking about it and realized that what most bothered me about it was her being singled out already, before it seemed necessary. I resolved to talk to her teacher about it tomorrow, when she went back to school.

Tonight, however, was date night, and we're very lucky that one of the center teachers lives two blocks from us. She's still a student, but her maturity level far exceeds her age. She's studying Special Education and hopes to work in our district when she graduates. Her mother was Belalu's classroom teacher until she (B) moved into the toddler room a couple of weeks ago. Anyway, she watched the kids tonight and before she left I asked her if she knew the full story about the stool, because I had some concerns.

She told me she was glad I had asked, because she'd been meaning to bring it up these past couple of days. She then explained that she was the one who had initiated the stool being ordered. There are two sinks in their room; one they all can reach with help of a small stool, though she said Belalu has to reach in more than the other kids, and another average-height one that is where the empty cups end up after meals- they have to toss them in because none can reach to place them in. I asked if only Belalu would be using the stool, and she told me that in that room, it was going to be for all of them. However, it would then move up the rooms with her, as needed. These had been my two primary concerns. She also explained that she had been very intentional when picking it out for her, so that it would have railings that she could use. She assured me that she understood how important it was that Belalu not be singled out or treated differently. In fact, she brought that up before I had a chance to ask. I know a day will come when she'll need some modifications or adaptations made for her, but I'm glad it's not here yet, and I'm so relieved to know she has an advocate keeping an eye on her when we can't be there.

22 Months: An update

Belalu is quite the toddler these days. She will emphatically point her finger at you and say "no!" in a very firm voice. She oftentimes insists on walking up and down the stairs by herself. When she can, she'll hold a railing, but if not, she'll use the wall and then swing her leg around till it's on the next step. Going down, she carefully will walk or scoot on her butt, depending on how tired she is and how high the rise is between stairs. She sometimes will pull her brother's hair or hit him when he won't share with her, but then immediately rubs the same spot and gives him kisses and hugs.  Getting her in the car seat these days is often a physical struggle, and then she has to be removed screaming from the same seat when we reach our destination. However, it's not all testing limits and gauging power. When she hasn't seen me in a couple of hours, I get a very high-pitched screech of pleasure and then an enthusiastic "mama!!!" She talks a lot, and prefers to sit and look at a book by herself rather than be read to, though that is being requested more and more, too, especially if it involves Elmo. This amazes me, because she has no interest in watching Sesame St, and has maybe seen three clips of it in her life, and yet adores all the books and toys we have that feature him. She loves to sweep and help wipe up spills (in fact I think she often creates those spills just so she can wipe them up).

When I try to sing to her, she usually puts her hands over the ears or says repeatedly until I stop, "no, no, no!" When her brother sings to her, she claps and says "yay!!" They both are working on sharing, as her interest in what he's doing grows. E has learned to ride a big boy bike now, so we lowered his balance bike hoping it would be low enough for Belalu, and I really thought it would be, but was very disappointed to discover that it's not. She's really interested in bikes, and every Tues when we leave the Y, there's a women's bike group gathering for a ride at that time. Belalu just stands there and looks at all of them. I have to pick her up and carry her away or she'd never leave.

The biggest milestone for me lately is hard to discern below, but is the best picture I currently have on my computer of her ..... pigtails!!! Her hair is finally long enough to put up! I'm trying to get her to let me pin her hair back with a barrette in the front, since she sweats so easily in the heat, and the best strategy so far seems to be putting in about five in a close row and hoping she tires of pulling them out before she reaches the last one or two. I've never been able to keep a headband on her for more than three seconds.

She's now in the toddler room at daycare, and the teacher told J yesterday that she's going to order Belalu a higher stool for the sink. I guess she wanted to put her cup in the sink by herself and couldn't do it, so another kid helped. But the way she described it, B wanted to throw it into the sink and couldn't, so we're wondering if it was more about her coordination than her height. I need to talk to the teacher myself and ask more questions for clarification. Obviously, we are happy she is being sensitive to B's needs, but we're wondering if it's really necessary right now for her to have a different apparatus already.

Besides bikes and bubbles, Belalu's favorite thing ever right now is babies. She is mad about babies. Whenever she sees one when we're out and about, she shrieks "BABY!!!!!" and runs over to pat its head or give it kisses or stick her finger in its eye or nose or mouth. Given her affinity for them, I thought she'd like the documentary "Babies," which E had seen and liked at about her age. Ummmmm, yeah.... she might be a bit obsessed. Every time she sees my computer now, she shrieks "babies!!!!" and runs over to it, repeating the word until I put it on or dissolving into a fit of tears if I don't. She won't watch cartoons, but she'll watch this for a good 30-45 minutes. One day I had taken it back to the library and she was insisting on watching it, so J found a National Geographic documentary on Netflix that she happily watched most of. I was happy she didn't like watching tv, but with her toddler moods, it has been nice to have a little peace and quiet while I prepare dinner or to be able to sit and knit while watching it with her.

So, that's our soon-to-be two year old lately. She is adored by us all, and we love witnessing her develop, even as she continues to be the sweet, independent, determined girl she's always been, just in new ways.

More thoughts on Disability

So, I'm still working out what this word means. In general, and for our family specifically. Thanks for bearing with me as I work this through out loud and in stages.

The Word Itself
As a person who until very recently had the luxury of not having to give the word too much thought, I always took the word "disability" to have negative connotations. Dis-ability means, literally, "lack of ability", or "lack of aptitude". In Spanish, the adjective "minusválido" literally means "less valid". It's hard not to see a value judgement in this word, so I believe a more preferred term is "discapacitado." Like the word disability, the prefix "dis" implies a lack; they suggest that something is missing. So, is part of the problem that I am negatively interpreting the term "disability'? But, how can I not? The negativity is inherent in the prefix itself "dis."

This summer I read a wonderful example turning this negativity on its head, which I talk about here. And many people of short stature or parents of children with a form of dwarfism will emphasize that they can do the same things as everyone else, though they may have to do them a little differently. So, where does disability come in? When they cannot do something? When they need special medical care or require corrective surgeries?

Hypochondroplasia and Disability
Right now, Belalu does not have a disability. She is at or well beyond all her developmental milestones. She is not impeded in anyway by her hypo. In fact, we're always so surprised at her reach, given the length of her arms. She's constantly getting into things we thought were out of reach. The other night, she put her leg over the bathtub edge and got out herself! It seems that for now at least, flexibility and determination compensate for shorter limbs.

What is not clear to me, however, is how her condition will inform her physical negotiations of the world as she gets older. Why is there so much emphasis on the one hand about LPs being "just like everyone else" and yet on the other implications that short stature is or can be a disability? When I first heard about limb-lengthening, I thought it was a cosmetic procedure. However, many people say that it helps them get around easier in a world not built for them.

This summer I watched an old episode of Extreme Home Makeover, where they constructed a house for a family whose daughter has achondroplasia. At the beginning of the show, her mom talks about how their house is dangerous for her, the stairs are too steep and too many, the counters and the door handles are too high, she cannot do many things on her own because of the way the house is built. On the other hand, I watched an interview with the Johnsons, a family of dwarfs, and Barbara Walters, and they chose to not change anything about their furniture or their house, even though they were all little people. The parents said they would not raise their children to believe themselves disabled: "We don't have a 'woe-is-me' attitude" seemed to imply that people who consider themselves disabled do? But perhaps that was just the editing from the producers.

So, honestly, I don't know what to think. I still don't have a handle on what it is going to mean for Belalu that she has hypochondroplasia. Will she have difficulty negotiating day-to-day stuff because of her height or her bodily proportions? Will she need to have surgery (perhaps multiple ones)? Will she have a lot of pain at some point in her life? No one seems to be able to tell us that now. Like any parent, I want her to be able to do what she wants in life, and I want her to be happy with who she is. Her hypo is a part of her, but it does not define her.

More Thoughts on "Disability"

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A fellow parent recently brought to my attention a 2003 article from the New York Times Magazine, "Unspeakable Conversations," written by Harriet McBryde Johnson. She was an attorney and disability rights activist with a neuromuscular disease who passed away in 2008. In this article she refutes the argument that parents should have the right to terminate the life of a newborn born with extreme disabilities. While most cases of achondroplasia and hypochondroplasia are not extreme (or even slight) disabilities, the availability of pre-natal testing suggests that parents who find out they are pregnant with a baby with a skeletal dysplasia might chose to terminate the pregnancy for fear of having a child who is different or may have health complications. Regarding a person's quality of life, this quote from McBryde Johnson struck me as especially reassuring.

"Are we 'worse off'? I don't think so. Not in any meaningful sense. There are too many variables. For those of us with congenital conditions, disability shapes all we are. Those disabled later in life adapt. We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own. We have something the world needs." (The emphasis is mine)

The family of Fundación Magar gave us a copy of the book, Hacia un nuevo horizonte, distributed by Fundación ALPE. You can download a .pdf copy from their main page. On one of the first pages, I found an interesting sentence, although I do not agree with the use of the word "disability" to describe achondroplasia: “There’s still a lot of work to do so that a disability doesn’t become a dramatic element for families when it shows up in one of their members…” (My awkward translation, sorry). What a novel, interesting idea that parents would consider their child's difference as much a variation of normal as the color of their skin, hair, or eyes. I think most AH parents of children with achon or hypo think that way after varying periods of time, but to hear the diagnosis without an initial feeling of shock probably happens to very few of us. Only when we perhaps adjust a previous image held of the child, learn more about something we never had to know before, talk to others, and get to know our child and his/her personality does the anxiety lessen, if not disappear altogether.

Disability

Disability. Such a loaded word. I was talking to a good friend of mine recently about the concept of disability. She has a rare condition that affects all areas of her life, but to look at her you wouldn't be able to tell there was anything up. In her case, because her condition is not outwardly apparent, it is downplayed or dismissed by others. Nevertheless, it makes life much harder for her, and sometimes it would be nice if people could recognize her struggles.

In Belalu's case, it's the opposite. She is no different from other children except for her physical appearance. But because she will look different, she will be treated differently. People will make assumptions about her. They may assume that she will be unable to do things or be surprised when she can. While I hope that she will not consider her condition a disability, others may.

So much of this word, disability, has to do with perception. Of one's self, of others. It's a subject I'd like to explore more.