Hi everyone! I know how frustrating it is when you love reading a blog but there hasn’t been an update in awhile, so I offered to update on Kate’s behalf. (Also, to put who I am in context: I am the one who lives in NY that Kate stayed with, and we both did our DE Cornell cycles at the same time. I’m also the one who unfortunately lost our 20 week son, D.I.J. and Kate so amazingly wrote about it on her blog and I was taken aback by all of your comments, so since I have the “floor” here, I’d really like to thank each and everyone one of you for your comments and thoughts. I read all of them here on her blog.) Now, back to Kate….

Kate’s been going to her regular OB appointments, and Baby B (“M”) is still fine. However, at last week’s appointment, Baby A’s (“A”) ultrasound showed that unfortunately, some more heart damage had occurred. Not what they wanted to hear. I won’t get into specific details unless Kate wants to later, but the good news is that even though there was some blockage, other parts were working just fine. It was just a huge shock for them, as there were no signs of this blockage previously.

For now, A is still showing full cardiac function, and they not moving to treat. If things get worse, Kate will go on a medicine that will help A, but somehow not affect either Kate or M, which is kind of cool. The other concern, of course, is what happens if something were to happen to A and how would it affect M? Kate is just at the point of viability if M had to be delivered, but of course we want to keep her in as long as possible. So, we really have to watch 1) A’s cardiac function on a weekly basis to keep a very close eye on it, and 2) how the twins are affecting each other, and have a plan in place in case pre-term labor should occur, how to keep M as safe as possible for as long as possible, and trying to deal with a possible reality that if A is born pre-maturely, we all know her chances of survival.

So, as you can imagine, Kate is extremely overwhelmed right now, and just trying to get through each day. It’s tough. We are all thinking of her and wishing all 3 of them well, and if Kate wants me to, I’m happy to continue to update you guys via this blog, so she doesn’t have to deal with it and put down in words all this stuff.

If you want to get in touch with me, I am on IVFC under “Sunshine24” and feel free to PM me.
(And, again, a thousand thanks to all of you on here who reached out to me when we lost our son (it was IVF #8 for us.) I’ll never forget it.

Love,
Sunshine

As you may have gathered by now, I am not really the type who dips her toe in tentatively and then decides whether or not to jump in. Nope, I just dive in.

So, after 21 weeks and six days of being pregnant, I made my first purchse for the girls today.

No, I didn’t go out and get a onesie or two, or a pair of cute little matching outfits.

I bought four bags of 0-3 month clothes from a neighbor off Craigslist for 50 bucks.

Four BAGS of baby girl clothes.

They frighten me. I have them all laid out in a pile on the chair now, I had to touch and look at each piece. Now I keep kind of sliding my eyes over that way and checking them out from the side. Like I’m scared to look at them straight on. Which, I guess I am.

They ARE cute though, very sweet.

—

Had a checkup with the fetal cardiologist last week. No news — which is good news. Everything still seems to be okay in there. Took for freaking EVER to get in and out of there because the girls were absolutely LOOPY. They were little acrobats, spinning around in there. The sono tech was despairing of ever getting all the photos she needed because they were just moving around so much. If that’s how they act when they are born — ie, when they have more space, more ground to cover — then I am in trouble!

We got tours of the NICU and the CV ICU (cardio vascular icu), so that was good. Nice to see where we’ll be. Where A will be. Everyone we met seems really nice and caring and helpful. I hope it stays this way.

I am trying so hard to spend my energy believing we’ll get through this. But I can’t tell you how hard this is. It is even harder than holding all my molecules together during an IVF cycle. Most of the timei DO think we’ll be okay.

Scared though. Scared they’ll be too premature — and that therefore A will be too small for surgery. It is a pretty straightforward thing — if she is born too early, and therefore too small, she’ll die. I am not allowed to say the words out loud – it freaks people (dh, mom, etc) out. But — it is true. I think about it sometimes, and I fear it.

Then, when I’m convinced she’ll be born okay and get to teh surgery, I’m afraid it will be too much for her. With a mortality rate of 4% per operation, the odds are of course in our favor. But there are babies in that 4%, of course. They had names, and were just as loved as A is. I can’t just act like they don’t exist, because I know they do. I hope A is luckier, stronger, whatever she needs to be. But, still, I fear….

So I haven’t been able to do much tangibly to get ready for the babies’ arrival (though dh is nesting like crazy, I love it and he is getting a lot done). I guess I’ll have to order the cribs at some point….

In the meantime … four bags of clothes. One small step for a fertile, a giant leap for infertilekind.

So this past week had some strange extremes for me.

On Wednesday I was the guest speaker for the Tampa chapter of the Resolve infertility support group. It is moderated by a couple of women (one of whom is a local TV personality) who reached out to me after my newspaper story, The Longing was published. I’ve been in touch with them off and on since then, though I never did join the group (preferring the support of my family, bloggy friends, and what few IRL friends I had left). But somehow my name came up recently when they were brainstorming speakers (scraping the bottom of the barrell? Ha).

I was willing to do it, because I feel that one of the few things I have to offer people is to share my experience out loud in hopes that it will help fellow victims cope, or help them talk about it. Or help family and friends of victims cope, and talk about it. I hate the silent suffering so many of us go through. It is so unnecessary. (Yet so natural, because we feel the need to protect ourselves, and so many people don’t know what to do or say.)

I told Kathy (moderator) that I’d do it, but I had this little problem. Two actually I well know that the last thing infertility sufferers want is to see a big old pg belly, especially in their safe place. It doesn’t bring them hope; it brings them sorrow, anger, jealousy, etc. So — we decided I’d do it, but soon, before the Things were canteloupe-sized (I think, according to my nephew, they were still at the avocado stage) and I’d dress as circumspectly as possible.

So, I went. The first hour was the group’s share-and-support session. I sat in but did not participate. And DAMN! Listening to all the sad, awful stories of these nice people was so freaking hard. I could relate to all of them in some way. Some were older, doing donor egg b/c they’d “waited too long” (their words) or because it was a second, later-in-life marriage. Another couple was in their young twenties and coping with another serious medical problem that also caused infertility. I felt so bad for them — I never would’ve had the resources, personal or financial, to face what they are at that age. And every story in between. We empathize a lot here in blogland, but I have to say — it was a very different experience for me to look in the eyes of the women and men suffering. (I suppose those of you who go to support groups already know this.)

The second hour, I told my story. It was tough, because although I am pretty okay talking about it, the tear ducts were already primed…. But everyone really wanted to hear (so flattering! and so weird, I’m no celebrity!) so I plunged in. It was pretty informal, and we digressed for questions and answers, etc. And I took questions at the end. (I stopped after saying my last cycle was in the winter, but Kathy asked me the outcome of it. So I revealed I was pg, but we didn’t talk anymore about it or dwell on it.)

I think hearing from me was interesting to the group. I don’t like to say it gave them hope (UGH!) but I do think it helped them know they weren’t alone in the struggle, and that even long, shitty-ass struggles like mine are survivable. I got to talk to several after the meeting. I really liked them all and wish them the very best. I came home emotionally drained but glad I’d done it.

Infertility is so hard.
Infertility sucks.

So, that was Wednesday.

Thursday, I attended my first PPODS event. PPODS is the local parents-of-multiples club. I joined several weeks ago, and have participated on their online bulletin boards. They’ve already been very helpful and kind; I posted when I first heard about Baby A’s heart problem, and they immediately offered support and got me in touch with a few other parents in a similar boat. So I really wanted to meet some of them in person.

Thursday was Moms’ “Game Night,” hosted at the home of a member. Though we never did play any games (they sat in a stack in the middle of the floor), we just sat around and talked and ate and drank (wine for them, lemonade for me, alas). It was really fun — but sort of like a hazing. Standing around the table munching on pizza, they all started talking about their birth horror stories. One said hers was great and she didn’t even need drugs (I told her she should’ve taken them anyway, for fun), but the rest — holy COW! They said later they weren’t trying to scare me, but I am not so sure

They all had twins, of course. I was the first to arrive, and the hostess was still getting things ready, so I played with the kids a little. She has toddler b/g twins adopted after an IF struggle — and a “bonus baby” (their words) who came naturally just a few months later. When I arrived, the little boy grabbed my hand and said “walk!” So we went for a walk through the house and down the hall … to his bedroom … where he went directly to his bed! His dad cracked up. I laughed and told the little dude he needed to buy me dinner first. heart-breaker int he making, that kid!

The rest of the night was just hanging out with moms of twins. Some had IVF twins, others had twins run in the family and weren’t surprised, I think one was a twin herself; others’ twins were a complete surprise. Mostly they talked about the kids, but not completely. They completely took me under their wing and told me they’d be there for anything I needed because they knew the ropes and remembered how hard it was at first to have twins. I told them I’d keep them all on my speed-dial. “Of course you will, honey, that’s why you joined the club!”

It was the kind of evening that normally would have given me the heebie-jeebies. Actually, a year ago I couldn’t've sat through it. And at times, it DID feel weird and even a little creepy. But ready or not, these are my new peers. And I am really glad to have them on my side.

Okay, so I am a bit tardy with this post. It has been a crazy week (not crazy bad, just crazy), which I will tell about in another, separate post.

THIS post is about the warm fuzzy feelings we all get from participating in this wonderful place we call the blogosphere. And I sure got the warm fuzzies when Kym and Chance sent me these lovelies:

As regular readers know, I’ve been calling the little embryos that stuck with my last IVF cycle Thing 1 and Thing 2, cuz that’s sorta how they look in the early ultrasounds.

Considering that it was our seventh IVF that finally got us a BFP that stuck, I have been pretty dang nervous. Still am, although my nephew has looked it up on the Internet and tells me my twins are currently the size of small cantaloupes. And it is starting to look like he’s right. I am trying to have more confidence, less fear, but it’s hard.

That’s where YOU come in. So many warm wishes and thoughts come from you that it truly does help me get through a bad day, or enjoy a good one even more.

And back in my darkest days, when nothing was working, and losses and screw-ups were mounting, and I wasn’t even sure I wanted to make it through a day, your wishes and comments and lurkerdom gave me strength.

I’m not a great commenter myself, I tend to lurk more than talk. But I hope I’ve given at least some of you the same comfort. IF is a long, hard, shitty road, and pg-after-IVf is a long, hard, weird road. Thank goodness we have each other to help us get along it.

All my love,
Katedaphne

Horrible news this morning. A very close friend, who I met through an IVF message board and became IRL friends with, has lost her baby.

She did a DE cycle the same time I did; she was a week and a half ahead of me. She lives near the clinic where I did my cycle, and my husband and I stayed at her house while we were cycling. So we were cycle buddies and housemates at the same time. We were so ecstatic that the cycles worked for both of us.

She has been through as much as I have, and more. She considered my twins her daughters, and her son was mine. And now, little D.I.J. was found last night to have no heartbeat.

I feel like I don’t have a heartbeat either.

How does this happen? Why? She was practically 20 weeks. The NT scan, the anatomy scan, all were passed with flying colors. And now — darkness.

She’s not a blogger, but if you could leave her some hugs here, I’ll see that she gets them when she comes up for air.

First of all, thank you all for the wonderful comments. They are very helpful and encouraging and have given me a lot of strength. xo

We’ve had a few days to start getting used to the idea of A’s diagnosis (officially, Left Atrial Isomerism). We’re very scared, obviously, b/c we just want our daughters to be happy and well and live beautiful little lives. We have some idea of struggle, and I have always said I would never wish what I’ve been through on anyone, not even an enemy, not even the most annoying fertile in the world. And now even harder struggles are being laid at the feet of a tiny little baby, who’s done nothing to deserve it and won’t even have any experience to help her though. She’ll have to rely solely on her own little will. And lots of love. I hate that for her and I’m so mad on her behalf. And I’m sad, sad that any of this has to happen to anyone I love (or, to anyone). Even while I’m not thinking about it, I can feel the pressure of tears behind my eyelids. I’ve given way to them once but am mostly holding them at bay. It is hard, sad work to do so.

Also scared for ME. And Mike. We knew we will have a good team to help her, and pretty good odds, as odds go. But still, we’re well aware of how the statistical bullet works. What if …. I can’t type it … what if the worst happens? I don’t think I could stand it. How much can a person take? Yet I’ll have to, b/c we’ll still have M, who we love and who will need us. People often comment on how strong I am — yet I feel that is mostly b/c they don’t see me at home, in private. I really feel the reservoir is about tapped, and that scares me too.

Mike and I also have some anger and bitterness on our own behalf. We were looking forward to living a relatively normal life as a family, after this anything-but-normal road to get here. We had planned to be as unremarkable as possible. And once again — that is taken away from us. We will be happy and loving parents — but not normal ones. There’s nothing normal about spending years hanging around the pediatric cardiologist’s office and the cardio-vascular ICU. There’s nothing normal about calling the petsitter to mind the dogs while we prepare to move into the Ronald McDonald House yet again. Truly, we know this is the least important, really very petty, concern. A’s medical needs are way more important than my “normalcy” issues. So we feel guilty even feeling that. But, we do feel it. Who could help it?

BUT, all that said, we are really not dwelling on the worst possible outcome. We are imagining doing all the things we thought we would do with our daughters. We are starting to give thought to practical matters like scheduling helpers,  because having one healthy twin at home and one at the hospital brings some logistical challenges. I am thinking about how to decorate a girly little nursery.

And I am buying two cribs.

Okay ladies, pls give me strength. This has been a long week and today has been awful.

First (but least important) I hurt my back somehow Sunday and all week have been in major pain (as in, severe enough pain to make me throw up, can’t stand, sit, or lie down, etc). Awful. OB gave me a muscle relaxer + extra strength tylenol. Tethered to the couch, the heating pad, and the drugs.

So this week has been a pain, but today was supposed to be good, Level II u/s, find out the sexes, etc.

Well — we are having two girls. Yay!!

BUT — Baby A  (literally baby A, and also A is her first initial) has a very serious congenital heart defect. I am still trying to wrap my head around what it is, what it means, etc. Mike and I are both super freaked out, obviously. We were sent from the peri directly across the street to All Children’s to see a fetal cardiologist, who was able to see us immediately.

The problem is called Latrial Isomerism, and Polysplenia Syndrome. As far as I can tell, some of her organs are flipped right-to-left. Her heart is on the right, her stomach on the left. Should be the reverse. And somehow she may end up with multiple spleens. Stomach is unlikely to be an issue — if it is, it will cause obstructed bowels, which will need to be corrected with surgery soon after birth. The extra spleens are not a big deal either, apparently. But the heart — the right side is not correctly formed, and she has only one ventricle, the left. So far her heart has full function, she got 10/10 on the cardio vascular profile score, so that is very good. Upon birth she will need immediate medication and open-heart surgery, to ensure blood is pumped to the lungs properly. Then at 6 months she will need another surgery, and at 2 years or so another one. (I have the names of all these procedures written down, and lots of confusing diagrams of hearts and veins and shunts, etc. It will take a while to fully understand, let alone be able to explain…)

Each surgery has about a 3-4% mortality rate, IF she is born full term and at a “good weight”, ie, 5.5 pounds or more. If she is premature or too small her chances get substantially worse. Altogether he predicts an 8/10 chance of her coming out of it all pretty well, just like a normal kid.

On the plus side, there appear to be no other issues, no Downs, etc. And Baby M (her first initial)  is just fine. So my first job is to GESTATE. I need to keep these babies in as long as humanly possible, and birth them as large as possible. Doc said to eat 100 grams of protein a day. (!) I will talk to the nurse again tomorrow and try to figure this out. Oh, and I have physical therapy for my back tomorrow too.

We kinda thought 7 IVFs would be enough for any couple to go through — but there is always more. Mike said this afternoon, “you never know what any day is going to bring,” and “life is so precious.” All these IVFs have made us pretty good at handing doctors and hospitals, so I guess we can handle this too. For myself, I am glad it is a problem that has a name, and a known plan of action, and doctors who fix this all the time. The unknown (and so much of IF is unknown) is much harder for me.

We thought we were going to be done with being medical anomalies and were just going to be regular normal people for a while. Yeah, right.

I’ve been feeling bad lately b/c all my posts have been so gloomy. Although I do tend to use this space more about the sucky things in life than the happy ones, that is one of the 700 bazillion crappy things about IF — I feel that IF has stolen my “real” self, which was generally disposed to be happy and optimistic. For about 4 years now I have been anything but happy and optimistic. I’ve been — well, you know. I miss that self, and I am very sure my family and friends miss that self too!

So one of the many delightful things about this DE pregnancy is getting the chance to recapture a little of my old self, that happy and optimistic one. It’s not easy, and it’s not there all the time. But it is truly one of my goals: to drop as much as possible the bitterness and gloom that IF leaves you and embrace all the chances I have to be optimistic and happy.

As I said in my last post, I feel sure that some of those negative feelings will never fully go away. But that doesn’t mean they have to be first on my list. I can acknowledge them, and then fold them up and put them in a drawer, and take out the positive thoughts and attitudes instead. They need to be shaken out, for sure, hung on the line and aired out. But they’re in there, and I’m ready to use them.

My dear Kami at  The Other Side is wondering: “Now that DE is working so well and so quickly for you, how do you feel about the process you went through to get here?”

Well, I feel fine, actually.

Okay, that’s a lie. I hate the process that brought me here. It was hard to bear physically, and almost broke me emotionally. Infertility is a horrible disease. Even though I am (apparently) pregnant now and my body seems to be growing and nurturing my children the way it is supposed to be, I am still feeling very angry with, and betrayed by, my body. It looks all fine and normal and even, on good days, cute — but I know that inside it is just crap. I’ll never recover from IF. I just hope the scars fade a little, and I assume once The Things are born I’ll have less time to think about this horrible time. But it has defintiely shaped me, and that won’t go away.

So yeah, still have some anger/bitterness issues, I guess. Donor egg solves some, but not all of the problem. A donor egg pregnancy solves the singlemost biggest problem — the fact that I was unable to have a family. With DE, I do get to have a family. That’s a huge and wonderful thing, and I am so glad this option was available to me. That is the most important thing. It was not easy to accept, and it took me more than a year to reconcile and then embrace the idea. In choosing a DE family, there are certain things you, by necessity, leave behind. It was hard to jettison some of those things. But if you’re on the Titanic, you don’t say, if I can’t bring my suitcase I’m going down with the ship. You get in the damn lifeboat if you have the chance. That is to say, I decided I didn’t want to give up the chance to live the rest of my life as I had always wanted it to be, just because I couldn’t have everything EXACTLY as I expected it. It was hard to leave behind certain things, and when I think of it, it will always make me sad that I had to make that choice. But I will never regret makign it. It will never make me sad to look at my children. I am so glad they are coming and I can’t wait to meet them. I wish we could just fast-forward to August so they would be here already!

What donor egg does not, cannot, do, is cure me. Even though I am pg now, I am still infertile. That sucks. DE didn’t fix me, it just did an end-run around me. I’m sad that I am broken. I wish I knew why I am broken. I am glad I could survive this ordeal. I am glad I have been strong enough, even though I felt so weak, to make it through. I do believe one does what one has to do. But there were times when I could’ve given up; it would’ve been so much easier. And I’m glad I didn’t. It wouldn’t've made me any happier. I’m glad some part of me knew that. (My definition of  “giving up” is stopping whatever you are doing before you are truly ready and while you still have options before you, making a choice to go the easy route instead of the route that leads to what you truly want. Changing your mind about what you want is not necessarily giving up, nor is arriving at the end of a road that presents no more options.)

So, DE has not taken away negative feelings about and caused by infertility, nor do I believe it ever will or could.

But DE *IS* giving me my family, and I couldn’t be happier about that. I have no issues with having “DE” babies. I love them and I want them and they’re mine and I’m looking forward to years and years of knowing them and being with them and loving them. Nothing about THEM, about their existence, makes me sad. Nothing.

The only thing that makes me sad, sometimes, is me.

Now then. Let me just say, the Baby Expo is NOTHING compared to going into the regular mall and into the maternity clothes store and buying a pair of maternity pants — and EXITING THE STORE carrying a shopping bag that screams “MOTHERHOOD” on both sides in 700 point type.

Oh. My. God.

So, I still haven’t gained much actual weight. But this weekend I sort of “popped” a little, and today I think I popped more. As in, I think I am noticeably fatter now than when I got dressed this morning. I wore my favorite grey work slacks. They were a tad snug but perfectly comfortable this morning. By late this afternoon I could barely sit in my chair. I ended up leaving work early and going straight to the mall. (No, it isn’t bloat. I never bloat. Not while PMSing, not on my period, not while cycling….)

It’s kind of sad how after a person has been traumatized as much as I — and most of you — have been, how defensive you get. All the way thru the mall I was rehearsing what I was going to say if the sales clerk was rude or mean or condescending or made me feel awkward in any way. I wanted to be prepared. Happily, although I got a clerk who was 18 years old (“I had my baby at 16!” grrr) she was perfectly nice and helpful. I did NOT want to browse, so I told her I needed pants and to bring me some that I could try on. She did, I did — and once I had a pair on, I told her no freaking way was I putting those other slacks back on, she could cut the tags off these and I’d wear them home, thank you very much. And I did.

But hooo-boy did I have the heebie-jeebies as I left the store, old slacks (and new baby free gift) in “Motherhood” shopping bag.  I also bought a few things at Ann Taylor Loft (a few sizes up from my usual) and I stuffed the Motherhood bag into that one. Felt a little better.

I also ordered a bella band online today, it arrives Wednesday. Yes, I was so uncomfortable I paid $8.95 for second-day shipping.

And by most people’s standards I do not even look prr…. prreggg…. yes, it is still hard to say… I don’t even look pregnant. I am naturally what they call “petite,” which is to say, my stomach used to be concave. (Please don’t hate on me, I have plenty of other problems, I promise, and have the utmost sympathy for those who gain weight on fertility meds, whcih sucks. Me, I just get all-over-the-face disgusting acne….) So yeah, though it looks kinda pathetic to YOU, *I* can tell it’s a baby bump! So can Mike, and my mom. So it must be real.

—

In other evidence that you can take the girl out of the IF but you can’t take the IF out of the girl…

It’s been three weeks sincew my last checkup, and I am seriously jonesing for a scan. I can’t GO this long without an ultrasound, people. I’m doing a little better in that I am not completely convinced Thing 1 and Thing 2 are dead. But I am very jittery. I need some comfort.

My next appointment is not until a week from THURSDAY. That’s for-freaking-ing EVER. So. I’ve been trying to figure out what symptoms I can “manifest” that are serious enough to get me a quick emergency scan, but not so severe to land me in the hospital or require me to show actual blood or anything.

How sick is that?

Don’t worry, I’m not going to call and fake anything. I can wait 10 lousy days for an ultrasound. But oh man…. this is HARD.