Friday, March 31, 2006

Still Natalie

After 6 long hours spent in various parts of the hospital (summary: 1 fetal echo, 1 EKG, 1 blood draw, 1 abdominal ultrasound, and 1 transvaginal ultrasound--fun!), I am happy to report that Natalie's heart is still looking good, her hands appear to be normal, and there is still no sign of a penis. Dr. G. recommended that I stay on digoxin, but suggests that I try splitting the dose between morning and evening to see if that makes a difference in the nausea and dizziness I am feeling. We're still on for weekly visits, most likely until delivery. (DH thinks he has acquired the skills of operating both echo and ultrasound machines, after carefully studying the hospital technicians for several weeks at this!)

Thanks to my friend, Pam, for the thoughtful gift of Preggie Pops and Ginger Chews, to Lisa for the cookie basket, and to all of you for your continued thoughts and wishes for us and our little girl.

Thursday, March 30, 2006

Girl, boy, polydactyl??

As if we didn't have bigger issues to worry about, my OB's office called yesterday to tell me that they'd scheduled an ultrasound for me after my echo on Friday (tomorrow). Since they didn't say why, and I've already had two ultrasounds and two echos in the past few weeks, this unexpected news really freaked me and DH out. I spoke to the nurse practitioner this morning and she told me that during last week's echo, someone thought they saw "something on the baby's hand." "Something, like what?" I asked. "An extra digit," she replied. WTF? The cardiologists performing the echo last week even commented that we shouldn't trust anything they had to say about any other part of the baby's anatomy, because they could say that the baby's left butt cheek was larger than the right and it wouldn't have anything to do with anything, since they aren't experts in this area. So why are they going around telling people that my baby may have six fingers? Ugh! I am oversimplifying everything, and I really love all umpteen doctors we find ourselves involved with and know that they are trying to give us every possible reassurance, but c'mon. So tomorrow we get to spend another several hours in the hospital to a) make sure Natalie's heart is still okay and b) find out if she has six fingers or five fingers and one penis, which my mother suspects may be the case. The suspense is killing me!

Tuesday, March 28, 2006

Digoxin daze

It seems that some of the unpleasant, yet common side effects of digoxin have started to kick in big time. The diarrhea has subsided, thankfully, which I attribute to Kate's helpful pineapple juice suggestion. However, the nausea, headaches, and vomiting persist, as does the most fun side effect of all: confusion. Huh? I feel a little dizzy, my brain feels fuzzy and slow, and I generally feel pretty out of it.

The "didge," as Dr. K. affectionately calls it, has been around for over 200 years and is derived from the foxglove plant, digitalis, so I feel pretty comfortable taking it, especially if it is helping Natalie (mother=martyr, as my friend A. put it), but these next four months of feeling a little dazed and confused are going to be interesting, to say the least.

Sunday, March 26, 2006

What I am listening to

I love Beth Orton's appropriately titled "Comfort of Strangers," particularly the song, "Conceived." Check out the amusingly quirky and happy-making video here.

Conceived (Lyrics by Beth Orton)

Want to keep your dream alive?
Can I keep it with mine?
But I'm no good for you I suppose when you get a cold idea
You still hold me close at night
Never liked you any less
And the world’s not such a friendly place, is it?
It can grow very cold, very quickly, and for a very long time
If the sun, with some twist of fate, starts giving out it's shine
Some of the time the future comes right ‘round to haunt me
Some of the time the future comes 'round just to see
That all is as it could be
Like it's there to remind me
We've got to wait and see
Can I still be conceived
In a loveless embrace
Still we learn to be a warm sun
Around a very cold galaxy
It's just like you said it could be
Oh, it's like you said it would be
Some of the time the future comes right 'round to haunt me
Some of the time the future comes 'round just to see
That all is as it should be
Like it's there to remind me
We've got to let it be
Some of the time the future comes right 'round to haunt me
Some of the time the future comes 'round just to see
That all is as it could be
And it's there to remind me
We've got to wait and see
We’ve got to let it be, yeah
Wait and see, wait and see

Saturday, March 25, 2006

Friday, March 24, 2006

Thank you, George Burns.

And thanks so, so, so very much to all of you for your collective good will, thoughts, prayers, finger crossing, emails, calls, cards, offers of help, and overall positive energy. Here's what we know as of today:

  1. Natalie's heart looks better today than it did last Friday.
  2. Collective good will works wonders.
  3. Digoxin may be having a beneficial effect on Natalie's heart.
  4. Doctors don't know/can't explain everything.
  5. Geneticists may have a tendency toward pessimism.
  6. Doctors who truly care for you may be moved to tears and emotional displays if they find anything that suggests a less than perfect outcome for you and your family.
  7. The head of the pediatric heart center at the #1 hospital in NYC is no "Miss Mary Sunshine," and while he could never give us a clean bill of health based on his knowledge of our history and what he and his colleagues saw last week, he doesn't think we should walk around assuming that the outcome of this pregnancy will be the same as the last. He hasn't ruled out the possibility that Julian's condition was genetic, or that Natalie's heart will worsen, but felt that what he saw today was the best we could possibly hope for.
  8. I will still need to continue taking digoxin and having weekly fetal echocardiograms, but for today, we'll take any good news we get.

Monday, March 20, 2006

Still not okay

Thanks so much to everyone for your collective good will, as Laura put it. You have been amazing, and we really appreciate all the positive thoughts, care, and concern being sent our way.

I don't have any new information to report, but after speaking to the geneticist this morning (who also happened to work with Julian), we are feeling less hopeful than we did over the weekend. Although we were initially told that our chances for recurrence were only 2-3% because genetic disorders were ruled out in Julian's case, we were also cautioned that sometimes the only way to know for sure if something is genetic is if it happens again. It sounds like if the doctors were betting money on it, they would say that this is one of those rare cases. If so, that means that our chances of recurrence are more like 1 in 4, which doesn't bode well for our chances of raising a healthy biological child. That, and the idea of interrupting this pregnancy are two of the worst things I could ever have imagined, and here they are staring us in the face.

The only thing we can do right now is wait and hope, but hope seems to fade the more we think things over and talk to the doctors. I started the digoxin, which I seem to be tolerating okay, minus the nausea, diarrhea, and headaches (which may also be caused by my emotional state), and on Wednesday, a team of 50 doctors will be reviewing our case. We go back on Friday for a follow-up ultrasound, fetal echo, and EKG for me to make sure the medication hasn't had any ill effects on my heart.

Stay tuned.

Friday, March 17, 2006

Everything is NOT okay

Dr. Glickstein's happiness to see us today soon turned into caution and worry. After an hour of being poked and prodded by three different people, Dr. G. was not able to tell us what we wanted to hear. Although the baby's heart is structurally and anatomically normal, there are some "leaky valves" in her heart (I believe this is technically called tricuspid regurgitation, or TR) that concern Dr. G., given her knowledge of our history. She admitted that she just didn't know what could be causing this, but that it wasn't great, and that it could be nothing, or it could be a sign of a trisomy of some sort, or it could be an early sign of cardiomyopathy. The fact that she cried was not a good sign. I am being put on Digoxin in hopes that it will pass the placenta and help the baby's heart, and we are now back to December 2004, when our weekly care was put in the hands of a team of doctors, including geneticists, cardiologists, obstetricians, and sonographers, and we just have to play a waiting game. The doctors' main concern at this point is getting us all the information we need before I reach 23 weeks and 6 days, the deadline for you know what. I don't even want to think about it. I am numb. I don't know what else to say or what to do with myself.

Thursday, March 16, 2006

Debbie Downer

That's me. I just had my wallet stolen, unbeknownst to me, until I went to pay for a cab home. I know I didn't lose it, because I don't lose things, and it was right in my bag where it belongs until it wasn't anymore. I'm so mad! So, why does that make me a Debbie Downer, you may ask? Because apart from it being a total drag to have to cancel my cards, reorder new IDs, and replace my best wallet, I can't help but think of this as some kind of omen. Like on Sunday, I knew something was going to happen to Tony on the "Sopranos," and I knew that Dana was going to die on the "L Word."

I know these stories are just fictional, but sometimes I think life works like that too, foreshadowing and all. The day Julian was diagnosed with a fatal heart condition, Robert and I missed the bus and had trouble getting a cab in a spot where there's never a problem. The sun was shining, we were both in terrific moods, then we were late to our appointment and everything went downhill from there. I have been doing a good job ignoring tomorrow until now. I just have to point out that even if everything looks fine tomorrow, it still won't be enough, because everything looked fine with Julian until 10 days before he was born. And that's not just me being all doom-and-gloom, it's a simple fact.

Tuesday, March 14, 2006

Back to reality

You may have noticed that I have been in some sort of la-la-land lately, what with the shopping sprees and what not. Perhaps this has been my way of keeping my mind off seeing Dr. Glickstein on Friday for our first of several fetal echocardiograms that Natalie and I will be subjected to over the next few months, and probably Natalie's first year.

Julie Glickstein, pediatric cardiologist, is one of the most forthright and compassionate physicians I have ever met. She was tremendously kind and helpful to us when she diagnosed Julian with cardiomyopathy in utero, and was there for us during the days following his birth, and months following his death. Although she has pretty much seen it all, she was clearly shaken by the rarity and timing of the onset of Julian's condition, and vowed never to let that happen to us again. Realistically, DH and I know that there is no way for her to guarantee us a successful outcome, but I also know that we trust and respect this woman's judgment immensely after pretty much having put our son's life in her hands.

We haven't seen her in over a year, so I expect that the meeting will be filled with anxiety and emotion. A few weeks ago, DH said that he hoped Natalie would grow up to be a doctor like Dr. Glickstein. While it's pretty moving in a Lifetime movie sort of way to think that Natalie could devote her life to curing the disease that killed her brother, my biggest hope for her at this point is that she grows up, period.

Monday, March 13, 2006

By popular demand...

Here are Natalie's three prettiest dresses: (left to right) purple velvet cap sleeve dress by Petit Bateau; striped wrinkle textured dress by Alibama; yellow and aqua sleeveless dress by da-di-da. (Dear Natalie, now that you have ears, I know that you can hear me when I tell you that you are already one very much loved and spoiled little girl, and that you MUST come home so you can wear all the lovely outfits mummy and daddy picked out for you.)

Sunday, March 12, 2006

Officially half pregnant!

20 weeks today! Natalie's official crown to rump length and weight are approximately equal to that of a container of Eden Organic Gomasio, which I know because I weighed everything in the kitchen to give DH a good point of reference. I also listened to her heartbeat (a healthy 157) and was able to hear her making lots of loud big movements, which I should be able to feel any day now.

This was a nice reward after spending Thursday and Friday in jury duty, until eventually, the judge let me off due to my high risk pregnancy and associated time constraints. I probably wasn't likely to be chosen to serve on this particular jury anyway, but the trial was expected to last 3-4 weeks. He was very kind, and expressed his sympathies for my loss (there's a section on the juror questionnaire where you are asked to enter the gender and age of your children--I wrote "one son, deceased"), and wished me luck this time around. I did a pretty good job of holding it together, then ran to the bathroom and cried for 5 minutes before leaving the courthouse. After that, I went to Century 21 and bought Natalie an Italian designer dress to wear on her first birthday--the first of five dresses I bought her this weekend.

Tuesday, March 07, 2006

More random thoughts

Getting dressed in the morning is becoming a dilemma: would I prefer to look like a hippo or a half-prego? This morning, I decided on hippo. Modern maternity clothes are stylish, but all about showing off your "bump" (can I just say that I hate that term? I look like I am carrying two footballs instead of a basketball), and I really don't feel like being "out" at work, so I will just let everyone think that I'm letting myself go for the time being and wear my non-maternity fat clothes.

I have been feeling fairly okay lately, thanks in part to DH, acupuncture, ADs, getting past the first trimester, the weather, my blood pressure monitor, my SPALS friends, and fellow bloggers. Also, I think I have gotten to the point where I've accepted the fact that I have no control over the outcome of this pregnancy. What is the equivalent of "Let go and let God" for non-theists? That is pretty much how I feel. At least for now.

DH has been super-cute lately. He is so excited about his little girl, and has mentioned several times already how he can't wait to have her in his arms. (Neither can I). It's looking to me like Natalie is going to be one spoiled little princess, and it won't be anything to do with me! We went to the Carter's outlet to buy some girly basics to supplement the gender neutral wardrobe we already have lined up, and DH was not pleased with any of the selections. I ended up getting 5 outfits for $25, but I know he was less than impressed. I guess he will just have to shell out the $$ for Oilily. He was never this picky about boy clothes.

Lastly, for my weekly vent, I would like to say that I wish well-meaning friends would think before they speak with regard to my current pregnancy and/or the baby. I feel like I'm venting about this all the time, but I haven't yet this week, so please excuse me. Examples of comments that have bugged me recently: "When you have a baby..." (we already had a baby), "Be careful what you wish for" (speaking about living children, as if we should feel lucky that our son died because kids can be a pain in the butt sometimes), "I hope you don't expect another present" (if meant as a joke, it was not funny), and a whole bunch of other silly comments I don't have the energy to remember that seem to deny that this is my second baby, that I have already experienced childbirth and motherhood, and that I've already thought about things like parenting and childcare, even if I didn't get to raise Julian.

Friday, March 03, 2006

It's a...

[drumroll, please]

...GIRL! The ultrasound today was a bit anti-climactic on several levels, actually. Firstly, DH and I and everyone we know were already pretty convinced it was a girl. Secondly, she wasn't very active this morning, so the ultrasound wasn't very much fun. Well, it was as much fun as getting poked in one's fat gut for 30 minutes can be, anyway. Finally, after talking it through and wondering if we were horrible parents for not being all giddy with excitement, DH and I realized that we were both a little sad. After all, in a perfect world, we would have a boy and a girl.

Analytical stuff aside, of course we are thrilled. Maybe all parents are a little more blase the second time around. It certainly doesn't mean that I don't love both my children equally, because I absolutely do.

I know that choosing a name and/or sharing it so early on might seem a bit taboo to some, but I believe that everyone deserves to have a name, no matter what. So, since I promised to share, please give a warm pre-welcome to Natalie Juliana. We can't wait to meet her!

Thursday, March 02, 2006

My second favoritest quadroon

I'd like to take a pop-culture time out to give a shout out to my favorite Jewish-Native-Black-Italian fashion designer, Santino Rice. I've seen the Fashion Week photos, and his designs were FIERCE! Go, Santino! (Dear Santino, if you win Project Runway and you read this, I would love to take you on a date to Red Lobster! xoxo)

Wednesday, March 01, 2006

There's a first time for everything

Firstly, thanks to everyone out there in Bloglandia for having my back with regard to my last post. I don't know how I would have made it this far, nor would I like to imagine how I would make it through these next several months without you all!

So, last night I was invited, along with a few of my fellow alumni, to a small dinner gathering of students from our alma mater who are here in the city this week for a brief internship program.
When I first got the invitation, my gut reaction was, "Oh no, a gathering of strangers. What if someone asks if I have children?" I quickly dismissed that thought as irrational, as did DH. After all, why on earth would some stranger ask me such a question, especially out of context?

Well, guess what? Someone asked. And as I pondered the many possible responses to that question in my mind (one, one and a half, two, but...), what came of my mouth was, "" It was a little awkward, but not nearly as traumatic as I imagined it would be. I only had that horrible feeling in the pit of my stomach for about a minute afterward.

In the past year or so, I have never been faced with the need to deny Julian's existence, and when the topic has come up on discussion boards, etc., I could never imagine a situation where I would feel comfortable replying, "No, I don't have any children," or "Yes, this is my first pregnancy." In the past when I have been asked, I have always replied honestly, even if I knew it would make the other person uncomfortable or bring me to tears. My response last night just felt more comfortable at the time, and I didn't feel guilty about it, just a little sad.

Oh, and then someone passed around a photo of her baby girl, which I wasn't expecting either. I didn't look. I guess there's just no getting away from this stuff, even in situations in which you would least expect it to come up. Sigh.