Celebration

Happy 2nd birthday, David Moses!

There are still times when I take a second or two to simply marvel at the fact that David is even alive, here with us on this Earth, breathing and eating and growing. Everything else is wonderful icing on a delicious cake – his almost-words, his wobbly standing up, his giggle when Daddy is tickling him. For the first six months of his life, I’m not sure we even considered all these things might occur.

Speaking of icing and cakes, this is what Simon chose for David’s cake (he is the designated cake-picker-outter of the family):

Quick summary of David’s birth, which I suppose I will devote a page to someday, if I ever get around to writing it:

David joined us on 3/28/2010, after a somewhat-hurried but not-quite-an-emergency C-section. I did not have an amniocentesis during my pregnancy, but our high-risk OB told us at 26 weeks that she no longer needed one to be confident that he had Down syndrome – there were enough physical markers on the ultrasound. My pregnancy was closely monitored for the next 6 weeks; the main concern was that David was not growing well because there was a problem with the blood flow through the umbilical cord. Near the end of the 6 weeks the problem had gotten worse; he had dropped from the 10th percentile, size-wise, to the 4th. I was admitted to the hospital for 2 days of continuous monitoring, then sent home for 2 days, to come back every day for monitoring. On my second day of outpatient testing, the problem (temporarily improved by steroid injections) had returned. The doctor asked how long it would take my husband to get to the hospital (he’s a pastor and this was a Sunday; thankfully my sister was with me). When I reported it would take a couple of hours, she said, “we can wait that long.” And she did wait for him to get to the hospital, but then she started the incision before he was in the operating room. That had to be deliberate, right? I mean, you don’t accidentally start delivering a baby without the father being in the room, especially when you were waiting for him in the first place? I didn’t really think about it at the time, but later I took this to mean that David was in some serious trouble and needed to come out pretty quickly. Fortunately one of the nurses got Matt in right after that.

So David was delivered (2 lbs, 13 oz, 15.5”) and I didn’t get to see him – I knew this was a possibility but I was still disappointed. Matt got one picture:

When he came over to show it to me, he was excited because the neonatologist told Matt he didn’t think David had Trisomy 21, because David’s eyes didn’t appear to be slanted or whatever, and he was missing this crease in his palm that most babies with Down syndrome have. When the cardiologist (not his regular doctor, but the one who was covering for the weekend) came to see me in Recovery, she said she didn’t think he had Down syndrome either, I remember thinking, we’ll see.

David was a patient in the NICU for 92 days. He gained weight very slowly and had two back-to-back infections, the first of which was fortunately pretty mild, the second of which … there was one night in particular (age 6 weeks or so) we didn’t think he was going to make it, and about 5 days of significant worry afterward. But he eventually began to get better, and about 6 weeks later we went home. We had multiple medical appointments for the next 6 weeks (that number seems to keep coming up), until his open-heart surgery in Atlanta.

When David was 3 or 4 days old, we received the results of the genetic testing that conclusively diagnosed Down syndrome. I have written about this on David’s Caring Bridge page, and will provide more details later. The news was not a surprise – I believed, deep down, that he had it – but it was still not a great conversation, as you likely understand.

The last two years have held a lot of fear and worry, but also great joy. David is doing quite well, and has been for some time. His brother Simon is turning out to be a great big brother, about 97% of the time. I’m still enjoying being a full-time mom, and after a year of “staying at home” we are not totally financially ruined, so I guess I’ll keep it up for awhile. Much gratitude to everyone who has followed our story and has provided encouragement and support – it means a lot.

Brief photo summary:

In the NICU, day one, about 5 hours old

A couple of days later (no, a 2 lb 13 oz baby is not the smallest baby in the world, but this guy is small)

13 weeks later - we are finally headed home!

1st birthday

The day before his 2nd birthday - you probably can't tell but the paper he has chosen to pull out (of this drawer of old stuff from undergrad and grad school) is the Cycle of Domestic Violence (I volunteered at a shelter for awhile).

Statistics

David had a visit today by his Early Intervention nutritionist. Our regular RD is on leave, and this covering one hasn't seen David since he was about 7 lbs, right after he got home from the NICU. So she was quite pleased by his progress, and I got to remember (again) how far he has come with feeding.

Growth-wise, David is 23 lbs, 4 oz, 30" long, and has a head circumference of some magnitude, which I never bother to remember. For his age (no longer being adjusted for prematurity because he's [almost] two!), his weight is the 50th percentile, height is 10th percentile, and weight for height is 75th. These percentages are all on charts for kids with Down syndrome - if they used the "regular" ones he probably wouldn't even be on the graph, especially height-wise. For those of you who are new to our family, David started out in the world at 2 lbs, 13 oz, and 15.5" long. He gained weight very slowly while in the NICU, and after 13 weeks there he only weighed 7 lbs, 0.2 oz This was partly a suck/swallow issue common in kids with Down syndrome (and other preemies, I suppose), but mostly due to his heart defect - eating was just exhausting for him, and we barely managed to get his daily minimum of formula or breast milk in him. After his heart surgery, weight gain came much more easily - the day his pulmonologist told us he was getting too fat was a wonderful day for us:

(I really can't imagine what he may have been talking about)

2 lbs 13 oz is actually not that small, I guess - we have heard approximately a million stories about smaller babies, and the one family we got to know in the NICU, their daughter was barely over a pound. And 32 weeks' gestation is not horribly early. But with the heart defect, Down syndrome and slow growth, and getting hit with two back-to-back serious infections, he was a pretty sick little guy for quite some time. For so long it seemed our entire lives consisted of hospitals, tests, doctor appointments, differing opinions, and 24/7 feedback on his health that it has taken us some time to realize that he's really not a sick little baby anymore - he is a big, healthy, thriving [almost] two-year-old boy.

Us in our cool 3/21 shirts

The shirts didn't arrive until the day after WDSD, but I figure we can still wear them & take pride in explaining what they are. Plus there's always next year.

There are not too many pictures of our older son Simon on this site yet, but believe me there are plenty in existence, so you'll see more of him. I do not have too many pics of both boys together - I need a higher shutter speed, maybe something that would track a 90-mph baseball pitch, to get any decent ones.

Pretty handsome, if we do say so ourselves.

Happy World Down Syndrome Day everyone!

"World Down Syndrome Day is celebrated on the 21st day of the third month of year to symbolize a third copy of the 21st chromosome in Down syndrome. This year is especially exciting as is it the first year that the date is officially recognized by the United Nations! Join the global celebration and Do Something Extra to honor those with an extra 21st chromosome this World Down Syndrome Day." ndss.org

NDSS has a great site with lots of reliable info. Check it out when you have the time - it was really helpful to us after David's diagnosis.

The colors for Down syndrome awareness are blue and yellow, and the symbol is a butterfly:

Vacation Photos

(David checking out the lemurs at the Natural Science Center in Greensboro, NC)

(This is the closest I have ever been to a tiger. Even with the glass, we were a little nervous)

I’m still reading lots of blogs and other sites about prenatal testing and Down syndrome, and Matt has joined me on several. I still haven’t sorted everything out, not in my own head and certainly not so that I can write conclusively about it.

I have started wondering what tests I would agree to have done, if Matt and I have another baby. The standard blood tests, the triple- and quad screen, only predict your risk for Down syndrome; previously you have had to had an invasive/risky amnio or CVS for a definitive diagnosis. OBTW: the triple or quad screen or whatever I had for David – completely normal results, no risk indicated. The new test that I’ve been blogging about is supposed to offer a definitive diagnosis with just blood work from mom. Would I want that? Not particularly. Our OB told us she was certain David had Down syndrome because of several things she saw on the ultrasound, and I guess that’s the answer to the question for me – I needed to know what she saw (heart defect and problem with blood flow in the umbilical cord), but I don’t think any blood test would have provided any additional critical knowledge. The doc went on the assumption that he had Down syndrome and I did too – knowing “for sure” wouldn’t have done much for us.

I’m sure any future pregnancy would be considered high-risk, at least initially. I’m sure I’ll have to have another fetal echocardiogram and several detailed ultrasounds, for the same purpose – to make sure there’s nothing that would affect plans to deliver at a certain hospital, to mentally plan for heart surgery, etc. And those’ll tell me what I need to know – that there is or is not a condition that puts the baby’s survival at risk. Blood test, schmud test.

If the (theoretical) baby is delivered just fine, will they still want to do a chromosome analysis? Could we refuse it? Why would we do that? I don’t know, just running through the million or so possibilities.

I will end with a vignette from Law & Order, which I’m sure will make Matt giggle (I mean, I already told him about the episode, but my L&O addiction is the subject of a fair amount of teasing, and the fact that I’m writing about it will make him smile). The actual outcome of the case (a bomb at a doctor’s office) was pretty farfetched (shocking, I know), but a slight side-track was: the doc in question did genetic research and testing, and the cops found out he was being sued by a couple who received an amniocentesis result that was positive for Down syndrome, had an abortion, and then found out the results were wrong. In the ensuing interviews, the couple revealed they had been trying to have a baby for 7 years and the wife had 2 miscarriages. Jesse Martin’s character, Ed Green, was giving them a hard time about the abortion, and he said, “You know, life’s not bad for Down’s kids these days – maybe you should have played the hand you were dealt!” We learn later that Ed once got a girlfriend pregnant and she had an abortion after a positive amnio for Down syndrome, and he didn’t want her to do it.

So, sorry to quote a TV show, but that is a good summary for me – life’s not bad for [kids with Down syndrome] these days. It’s really not.

Spoiler alert – Matt’s sermon this Wednesday will discuss this topic to an extent (theme for Lent – human limitation)

So it turned out the actual issue was the doctor claimed to have developed a prenatal screening test for homosexuality. Again, the way in which this played out was pretty ridiculous, but it is the slippery-slope thing. Who’s up next for extermination? Would crazy-religious people (which I know are a small portion of the pro-life movement) feel any differently about ridding the world of gay people?

See “Rutabagas” for further discussion of various measurements of human worth. I think that’s where I may shift my focus to. A pretty reasonable-sounding woman commented on an article that (a) she has a child with Down syndrome; if she got pregnant again she would want to know for sure just to prepare herself (b) the test is not required, it’s optional, and she does not foresee a future in which either the test or abortion would be required (c) the test is information, which is neutral. It’s what doctors and pregnant women do with the information, and (d) evidently plenty of women are willing to incur the (small) risk of miscarriage from an amnio to find out for sure – why not eradicate the risk?

A much larger discussion of fear and defense mechanisms and value and worth and whatnot will come, hopefully in small pieces. But for tonight, it’s 11:10 and I’m kinda tired.

this is making Joanna feel very ... domestic, or something

Joanna's new Pinterest (account, or board, or whatever):

https://pinterest.com/syanddaveysmom/

There is not a lot there at the moment, because I just started it last night. But there is a lot of Down syndrome (and general parenting) stuff available, so stay tuned ...

Bad experience my first log-on: on the opening page or whatever, when they are giving you suggestions of recently pinned or most popular, there was an image, a sketch of a little girl who appears to be deep in thought. The caption said something like, "They think because I'm quiet that means I'm shy; what I'm really doing is observing and judging everyone and finding them to be complete f***ing retards." Something like that. And the f*** was spelled out, FYI.

Great.

Not to be a goodie-two-shoes and new-to-Pinterest nerd, but it says right there on the startup page, not to be mean. Perhaps I should bring this to their attention - do people also get to post something that says, complete f-ing faggot or complete f-ing _____ insert whatever other slur?

Also FYI: anyone who uses Pinterest feel free to follow me - I decided a long time ago not to be facebook friends with anyone at any of the churches we've served (keeping a tiny part of life completely separate), but I would love to share some things with you. There will be a lot of Down syndrome info and links, but I imagine there'll also be some recipes and other parenting things. Maybe even some arts and crafts.

News in Brief

David saw his pediatric endocrinologist this week. She's nice and knowledgeable and all, but I'm glad his next appointment is not for 6 months. It's an hour and a half drive, and he always has to get his blood drawn ahead of time. This is not a complaint, because the (tedium?) of the visits is an indicator that he is doing well. David's hypothyroidism is very mild, his medication dosage is low and is apparently quite effective, and there are no other major health concerns at the moment. So all that is excellent, so no complaints whatsoever. But maybe next time if all the lab work is normal, we can do this by phone?? Or perhaps Matt can take him, I keep telling him the (young, female) doctor is quite attractive :)

Developmentally, we are working on changing David over from his bottle to drinking milk out of a (regular, not sippy) cup. We started on the cup transition with water maybe 6 weeks ago, at the behest of his speech therapist (speech and OT do their regular stuff with David, but they are both also feeding resources for infants/babies). He actually did quite well with managing the cup himself with the water, but hey, water is free and doesn't make much of a mess. Since we started doing milk in the cup, we are holding it all the time, so far. The first session, while the speech therapist was here, was awful - David cried the entire time. And by that I mean, the entire time, like an hour. The ST kept saying, he can do this (he is developmentally/physically capable), it's only a matter of how much you guys can deal with. Fortunately he only cried for the first couple of days, and we are pleased with his progress. We're still holding the cup for him, but he's much more agreeable. But it takes forever. I guess we shouldn't be too surprised; after all Simon is almost 5 and has no developmental issues, and it usually takes him a really long time to drink from a regular cup, if he's not really thirsty. Sometimes a meal takes about 45 minutes, so we are still doing a bottle if we are in a hurry or have an appointment. and his last bottle at night is still a bottle, every night - I imagine that'll be the last one to go, and I'm in no hurry. But it is a great step toward being a big guy!

Candidate

A couple things:

1. Some scary moments with David's breathing the other night; he's fine but I was really close to calling 911, at 2:30 in the morning. Fortunately I was able to remain calm and follow all these various steps we're supposed to try. He finally started sounding better and was able to get back to sleep; we followed up with the pediatrician the next day and he's okay.

2. Two developmental things: (a) David loves playing with Simon's Megablox, but he has (to date) not been very good at squishing down the blocks once he stacks them, so the towers are not too stable. But now, he's doing it all the time, and building some pretty great towers. (b) Today Matt and I watched him as he was standing up, holding onto a kitchen chair. He reached down to pick up a toy, and instead of plopping down on his butt as usual, he continued to hold onto the chair with one hand while he reached down with the other. ... I know neither of these seems huge, and they may not be, but they are new, and we're all quite impressed.

Mr. David has taught us a lot about the various subtle sub-steps that go into everything that most of us just do, and to appreciate every little bit of progress along the way.

3. I've gone to several out-of-town conferences lately, to get continuing education credits for my social work license. It's nice to meet folks that do not know I am the wife of a pastor, or the mother of a kid with Down syndrome. It's nice (a) because it means I'm getting out of the house and meeting other humans, and (b) it's almost a little game now, timing when I choose to make either or both of these announcements. It seems that either of these factors makes me a candidate for sainthood in some people's minds, and when you combine the two, look out - there is this certain look folks get in their eyes, a mixture of "awwwww" and some sort of ... combination of whatever they think those things mean, whatever beliefs/stereotypes/experience they have with each one. The notion that "Down's children are always so sweet" (please do not ever refer to my child as a "Down's child") is definitely the front-runner, but pastor's-wife is a strong contender.

People are funny. They're also generally very nice and sweet and wonderful, so I shouldn't poke fun, but it really does happen almost every single time. You could try it too – it doesn’t have to be true, you just have to say it.

(Yes, it’s the little things. I need some way to amuse myself)