Life with boys ...

Matt and I had a pretty eventful weekend. Friday was a fundraiser for Simon’s preschool; it was slow to start but ended up being a lot of fun, with a good turnout. Then Saturday was the Flip Flop Hop in Asheville, to raise money for the WNC Down Syndrome Alliance, specifically to assist families with sending their kids to summer camp. I hope people don't start thinking we have tons of money to give, 'cause we, uh, don't.

We didn’t realize this until we were almost there, but this was our first trip back to downtown Asheville since David came home from the NICU. We’ve been to Asheville a hundred times for appointments, but those have all been in the same medical park, about ½ mile off the interstate. We were not prepared for the emotional impact this had – driving up Biltmore Ave, there was a memory associated with nearly everything: there’s the ATM where Matt was on his cell phone with Pastor Randy, talking about baptizing David the day after he almost died; there’s the sign for Givens Estates where we stayed for awhile, there’s the Nature’s Pharmacy where I got the domperidone, there’s the Subway where Matt got lunch the day he was waiting for me to be discharged. Etc., etc. As I say, we did not anticipate the emotional whallop this packed – we were both pretty overwhelmed for awhile. I got a little teary thinking about how well David is doing now, rolling over and grinning all the time, and how distant that seemed during all those horrible weeks in the hospital.

Diagnosis

(Joanna): Today is an odd anniversary of sorts for our family. One year ago today (2/9/2010) our obstetrician, Dr. Warren, said the words “Down syndrome is the diagnosis until testing tells me otherwise,” and “major heart defect” to us.

The pregnancy had been rough, already – my nausea and fatigue were already worse than with Simon, and there was that fall down the steps early on. When we had our initial ultrasound to confirm my due date, a nurse (or someone) called me to say that our nuchal translucency score put David at a higher risk of having Down syndrome, and that she was going to schedule me with the high-risk doctor from MAHEC and for a fetal echocardiogram. I didn’t worry too much at this point, because Simon’s nuchal score (it’s a measurement of a space at the back of the neck) was also high. With Simon, we didn’t want to risk a miscarriage by having an amniocentesis, so we had the fetal echo and when that was normal, I stopped worrying.

What we didn’t understand at that time (when the nurse called re: David) was that while Simon’s elevated risk was something like 1 in 200, David’s risk was 1 in, um, 2. So we saw Dr. Warren for the first time, I think, at 18 weeks or so, and she explained the 50% thing to us, and we found out we were having another boy (the tech didn’t even have to tell us; there were these three bright white dots on the screen that made the news pretty obvious). She was worried, either at that appointment or the next one (21-ish weeks?), or both, that he had a heart abnormality because she couldn’t see the structures in the middle of the heart (yah, they weren’t, uh, there). I think she tried to soften this, perhaps, by admitting she couldn’t quite get a clear view, so she wasn’t sure there was something wrong, but that she was suspicious because of the nuchal score. Also at that time, David was measuring small for his gestational age, but from what I remember it was about a week behind and I really didn’t think (and still don’t know) that was anything to worry about.

So my next appointment, at 26 weeks (this would be the 2/9 one), was at the MAHEC office in Asheville, where they have better equipment. I had the ultrasound in the morning, and was scheduled for the fetal echocardiogram in the afternoon. At MAHEC, they have one of those 3-D (or 4-D?) ultrasounds, and I asked the tech, just for the heck of it, how much those cost. They are a luxury – they’re really cool but don’t tell the doctors anything a regular ultrasound does, so insurance doesn’t pay for it. So I asked and she said, “oh, I can just give you one,” and switched the machine over to that view and printed out a couple for me. I don’t remember anything else that she said during the course of all the measurements (I guess they’re not really supposed to tell you anything interpretive, but leave that to the doctor), until the end, when she said the baby appeared to be missing a nasal bone, which is a (I can’t remember her exact words) marker for Down syndrome; then she left me in the room alone to wait for Dr. Warren. To me, that was it. All the possibilities and chance and whatnot over the past 8 weeks or so, all the doubt was over. I mean, why else in the world would that bone not be there? I cried and cried, just thinking, “oh my baby, oh my baby,” over and over.

The worst part was that I heard this news alone. Initially, the appointments were scheduled back-to-back, so though we would have to drive separately, Matt and I were both going to be there, for both appointments. But then one of them was rescheduled so they were pretty far apart, time-wise, and Matt had decided to attend this meeting in Franklin in the morning, and then join me for the echo in the afternoon. For some reason, we were thinking the cardio appointment was going to be worse than the ultrasound/OB appointment, so I was in complete agreement with him missing the ultrasound. That, evidently, was not a great idea.

I don’t remember the exact conversation with the doctor, but what I said in the first paragraph pretty much covers it. I have often wondered exactly when Dr. Warren was sure he has Down syndrome (something tells me it was before that day), and how long it took us to catch up. Perhaps she had sort of been trying to tell us ever since the first time she met with us, and she definitely made sure we knew the various risks, all along. Ever since the 18-week ultrasound, Matt and I had been using the phrase, “if this baby has a disability…” with each other, and had discussed the possibility to a limited extent. I had thought I was ready to hear he had Down syndrome. But I wasn’t. ….. ….. ….. I guess no one ever is, really, unless maybe you’ve had another baby with issues, but …. …. yeah, I wasn’t ready. I wasn’t ready to hear it alone.

I think the main worry was not simply (ha-ha) that he had Down syndrome, but that he wasn’t growing very well. All his measurements put him at the 10th percentile, pretty small. This would seem to indicate a problem with the placenta or umbilical cord, that he wasn’t growing because he wasn’t getting everything he needed from me. The doctor explained (I think I remember) that problems with the placenta are difficult, because there’s not really a way to know what is going to happen, when it’s going to happen, and there’s not really anything you can do about it. I think Dr. Warren was focusing more on the chance that he (we had not named him yet) could be stillborn, before worrying about other stuff. I may not have listened to her very well, because I just couldn’t think about that, that he might not make it. The only thing I could do was to think about what would happen once he got here, not whether he would get here at all. I could not allow myself to consider that possibility. The secondary problem was the heart, I suppose, so we were waiting for the echo.

I remember trying to call Matt, to tell him to come on to Asheville, now, rather than waiting until the echo appointment in the afternoon. His meeting was at some church in Franklin, and it took a couple of calls to track down the number. My cell phone wasn’t working in the office, so I borrowed one of the doctor’s offices to make the call. I think I said, “You need to come, now. I don’t have to go to the hospital or anything, but … it’s not good news.” While I waited, I went to this Huddle House down the street and although I would’ve thought I wouldn’t be able to eat anything I ordered this huge plate of food and ate most of it. That still seems really weird to me, that as much as I should have wanted to throw up, I was sucking down hash browns and fried eggs. Although, I am not someone who generally forgets to eat when she is stressed, and hey, I was still pregnant.

For quite some time I characterized this day as “the worst day of my life.” Although no parent is really wanting to hear their baby has Down syndrome, and that was difficult, by far the harder part was learning he might not survive. … I’m not sure how I would describe that day now. Don’t get me wrong, it’s definitely in the top two or three worst of all time. And I don’t suppose it makes sense to spend much time worrying which was the worst: this day, or the day when we found out David had NEC, or the day after he recovered from the NEC but then immediately got sick with another infection (that was pretty horrible, we really thought he was going to die that night), or giving him his bath the night before his surgery … they were all bad, so I guess ranking them is not too important, but, uh, yeah …..

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Written Feb 18, 2012 6:48pm

A few things:

1. Last weekend I got rid of the last bit of breast milk I had ever pumped for David. It’s been sitting in the freezer since shortly after his heart surgery in August 2010. I kept meaning to get rid of it, but I didn’t feel right just tossing the frozen bags in the trash or letting the thawed-out contents just run down the drain – those of you who have followed our story, are aware of how hard-earned that stuff was. I couldn’t just trash it. So I finally got around to thawing it and then pouring it out, outside at the edge of the woods. I said a little prayer and that was it, but I felt I needed to do something to mark the occasion.

2. Another housecleaning item: we recently packed up a bunch of baby blankets and quilts to store in the attic, and chose a few to give away. On the top of the giveaway pile is the afghan we received from the WNC Down syndrome Alliance, right after David was born.

(a) the DSA folks are wonderful, as we now know, but I don’t think of it as the DSA blanket, I think of it as the “geneticist blanket,” and it’s going.

(b) I won’t name names but there are only a couple of geneticists in this area so those in the know will likely know who I am talking about – but I really hated her.

(c) Close followers will recall there was a question after David was born as to whether he actually had Down syndrome – I didn’t have an amnio and the OB made the diagnosis based on physical markers on the ultrasound. But when he was born, he didn’t “look” as if he had it – his eyes were not, you know, slanted, and he didn’t have these creases in his palms they usually see. The neonatologist, the cardiologist, nobody thought he had it, though I believed in my heart that he did. The geneticist brought us the blanket, cap, and tote bag full of info the day after David was born, and shared her opinion that he probably did have it, because of the more subtle things she observed.

(d) A few days later the test results were back, and this is how she told us – she just came to the bedside and said, “he does have it.” She didn’t call us into an office or even pull the curtain closed or anything – she just randomly showed up and said it. And I did already think that he did, but … you can see how actually hearing it for sure is different, right? She was yammering on about karyotypes and chances of having another baby with Down syndrome and whatnot, but I really stopped hearing her after the first couple of sentences. She left and Matt and I were there all alone, crying. I was holding David and Matt tried to … do something, hug us I assume but I don’t remember, but I do remember pushing him away and saying kind of loudly, “get the (expletive) away from me.”

(e) the nurses in the NICU were really on top of the confidentiality stuff, especially given that the whole unit is open and you can hear pretty much anything – the whole 92 days, we were hardly aware of what was going on with any of the other babies. I mean, I guess we had plenty of our own stuff to worry about. But the doctors, uh, sucked at it, and writing this, I do wonder if anyone overheard the doctor and/or us. I mean, how much would you hate to overhear something like that about someone else? I suppose the nurses were giving us some time alone, and I further suppose I wouldn’t have responded well to anyone who tried to talk to us right then, but I think at that exact moment I felt we were so totally completely alone and on our own, just us and our baby.

(f) So, um, yeah, that’s the story of the blanket and perhaps you can see why we are getting rid of a perfectly good afghan. And if you are paying attention, you have noticed we got the blanket/hat/tote bag several days before the test results, which seems really screwy to me. What if he didn’t have it? Would we have had to give the blanket back? I think maybe relief that the diagnosis was clear might have been overshadowed by anger and irritation that we had been put through all that, but I guess not, actually.

(g) So David has Down syndrome and saying that today is a piece of cake, but that day with the geneticist (we had several other not-so-great interactions with her while in the NICU), it was pretty bad.

(h) I realize that due to her role in our life, we likely would not have liked her too much not matter what. But I'm not sure we could've liked her less.

An Isak Deneson quote I didn't read directly from anything of hers, but was referenced in another book I was reading

“All sorrows can be borne if you put them into a story or tell a story about them.” - Isak Deneson

Joanna shares some feelings ...

There’s a lot more to this than I feel comfortable sharing at the moment, but here’s the basic idea: having a baby who was in the NICU for so long, and who can’t really go out in public too much yet, has not served to decrease my natural introversion, solitary inclinations or anti-social tendencies. I generally keep to myself anyway, but now there is an additional distance from the other parents we know, parents our age who have kids Simon and David’s ages. Simon and I were in a big group of them on Saturday, and both the parents and the kids are wonderful/nice/friendly/everything, but I don’t really feel that I belong with them anymore. I didn’t talk to any of them very much, just kind of hung out with Simon (who is having his own socialization issues at school). …

Perhaps I am making too much of this, and/or it will be a feeling that will be stronger at some times than at others, but right now it’s pretty strong. There is sort of a feeling that it is Matt and me (or perhaps just me, he tends to get along with people better) against the world, you know? That no one else will ever understand what our family is like. … When it’s just David and me, I simply enjoy playing with him and watching him grow and develop, and I don’t worry about much. But when I’m in a big group like that, all I can think is, “I am the parent of a child with a developmental disability. None of these other parents, even if their baby was in the NICU for awhile, or has some health problems, knows what that is like.” And I know that’s not fair, especially since I don’t even know what it’s like, much, yet. And for the most part, so far, it’s pretty much like taking care of any other baby with medical issues – meds, nebulizer, special formula, etc. But there is that extra (mental retardation) part that (for me, for now) creates that extra space between me and the next parent in line. That’s the distance, that’s the space – the gap between the words “mental” and “retardation.”

Preferences Shmeferences

(I may be getting ready to step on some toes. But this is my journal. Feel free to disagree, but get your own blog).

Matt’s latest issue of Sojourners features several articles discussing current efforts to “reclaim childbirth.” Not remotely surprised to learn these movements are mostly spearheaded by college-educated white women. It sounds like something we would do. ( The emphasis of the movement is to get back to the basics of viewing pregnancy and birth as a natural process, not an illness or an event to be managed. There was a lot of discussion of doulas and birth plans and whatnot. The more scientific parts of the articles discussed that despite the higher rate of interventions (epidurals, episiotomies, and c-sections) that the US is still behind other industrialized nations in infant and maternal mortality rates. The statistics are an interesting piece of info, and I would like to know more (like why exceeding the WHO’s recommendation of 15% c-section rate is a problem), but most of the articles focus on something I am altogether convinced is kind of silly – the mother’s birth experience. I’m sure that’s an odd thing to say, and obviously it’s important to some people, but I just really do not care about it, at all. From reading these articles, you would think that across the board, women are being tied down to beds to labor on their backs and then forced to have a c-section without their consent. Keep reading ...

More post-surgery letdown

We had another cardiology follow-up today. Matt and I are perhaps somewhat ... something ... in our relationship with this doc. One minute, he is the genius who ordered the x-ray that ended up perhaps saving David’s life. The next, he is sending us off to heart surgery with the following hopeful gem: “Well, I wish he were bigger.” I think the main issue is that he appears to be very close to our age, so he might get more scrutiny than someone our folks’ age. And my sister thinks he is cute; I told Matt that and then said I think he is not un-cute. ;)

So what did we find out today? Mainly, that kiddo’s little heart is not quite as … FIXED … as we thought it was. Before the surgery, Dr. Kirshbom said, “oh, I can fix his heart. I’m more worried about his lungs,” and after the surgery he was like, “oh, yeah, I fixed his heart. I’m more worried about his lungs” As if it were a given, that since he said he was going to fix it, he did. When we saw Dr. Pulver right after the surgery and had an echocardiogram, he informed us there is still a small VSD (ventricular septal defect, the hole in the bottom part of the septum that divides the two sides), but that it is so small he couldn’t hear anything, and he didn’t anticipate needing any further surgery for that; however, we would have to keep an eye on the AV valve for leakage. Today (now that we are 2 months out, and swelling/inflammation has subsided and enough healing has occurred so that he’s confident that we know what we’re looking at: (ahem) there is also a small ASD (atrial septal defect), there is mild leakage for the left valve and mild to moderate leakage on the right side (or maybe it was the other way around), and the pressures on the right side are higher than normal. He still doesn’t foresee any more surgery in the immediate future (which he sort of defined as, the next six months) but definitely didn’t rule it out for a few years down the road. AND he has sort of downgraded his assessment of the surgery from “good” to “acceptable,” or something like that.

(Please take a moment to digest. This was really not what we were wanting or expecting to hear. If you feel like screaming that’s okay. That’s how we felt). Keep reading...

Matt and I just talked about it upstairs (9:30 p.m., after getting both boys to bed). We are both feeling pretty discouraged, though I think we took the news pretty well in the doctor’s office (Matt said he was surprised I wasn’t more upset; I said it was likely just shock and disbelief – Dr. Pulver just kept on listing things that were wrong, and I just couldn’t really hear it all). The main issue goes back to what I vented about right after the surgery – to us, the heart surgery was this monumental happening, and everything was going to be better afterwards: he would be off the oxygen, he would have more energy, appetite and weight gain would be better. The last few things (energy/appetite/weight) have come through, but if anything his breathing is worse, he will likely be on oxygen for at least another year, and it has just not been the great “fix-it” we thought it would be. And perhaps that was unrealistic on our part, but jeez, we did not totally invent the notion that after the surgery, his heart would be … FIXED … and we wouldn’t have to worry about it anymore. And after the surgery we worked to accept the situation with the pulmonary hypertension/oxygen and the new concern of aspirating on his milk. Pulver was not thrilled to hear about the results of David’s swallow study last week, and talked again about how inter-related everything is: aspiration and reflux affect the lungs, the way he breathes aggravates his reflux, and everything with difficulty breathing can have a long-term effect on the heart.

(Photo: David's repaired heart. Even with all the stuff discussed above, we could tell right away that there are now four distinct heart chambers, whereas before everything just sort of blended together)

I am pretty proud of us for how well we have coped with this whole situation thus far. As Dr. Warren (our OB) put it shortly after David was delivered, “You guys are great. You hear bad news, and it’s difficult to hear, but then you accept it and move on and find out what you need to do next.” …. Well, yes, that’s a pretty decent summary of my approach to life. We haven’t spent a lot of time mired down in the unfairness of it all, either; the way I figure it is, David doesn’t need us to be in denial and blathering on about how unfair all of this is. It’s probably okay for us to be sad, but then he needs us get the heck on with it – talk to the doctors, get information, and above all just take care of him, day in and day out. So that’s 99% of it for me. But that other 1% is pretty overwhelming today. … I keep thinking that we will be able to deal with all of his developmental concerns with relative ease, given the difficult time we have had with all the medical stuff. And I suppose I was thinking about it like, one day the medical stuff will be over, then we will have to worry about him crawling and walking and what his IQ will be and what I will do the first time someone calls him a “retard” (answer: kick them to death) and who will take care of him if Matt and I die and if he’ll get married …. But perhaps we will get to deal with both medical issues and developmental issues together, for a long time.

(We will feel better about this tomorrow, and we will move on to figuring out what’s next. But right now it just feels yucky. And, yes, unfair.)

I can't remember when I wrote this (and am too lazy to scroll back thru CB to find the date)

A couple of random thoughts:

1. I think the parents of every baby born in the United States, with Down syndrome, all receive the same book, Babies with Down Syndrome. It is not a bad guide, to all the medical issues you could face, accessing services, and how to deal with other people about it. I had read an earlier edition while I was pregnant, but we got the most recent edition at the hospital. When I skimmed over this copy (this was when David was about 4-5 days old), I noticed something I had not in the previous book, that aside from GI/heart/developmental/vision/hearing/etc that your kid may be at risk for, Down syndrome also affects their … teeth. Yep, even their teeth come in later, they may appear in a different order from other kids’ teeth, and they may be differently shaped (the term they used was, “pointy”).

When I read that, I closed the book and threw it across the room (this was at the weird little hospitality house where we stayed for a few weeks), and have not picked it up again since. The reason for thowing it, at the time, was that I could not bear to hear one single more thing that could be wrong with this kid. And I haven’t picked it up since because I think I already know most of what’s in it, so why bother?