Not the post I wanted to write (very long)

Once again, I apologize for not updating earlier; it’s been a really difficult week.

Last Thursday (9ish days ago), I arrived at my ultrasound and appointment with the perinatologist, ignorant, at best. I expected the standard detailed ultrasound, confirmation of genders, and had then planned to spend the remainder of the day with relatives visiting from out of town. That’s not what happened.

The ultrasound started as usual, lots of measuring little bones, counting bones in tiny pinkies, looking at the organs, and yes, confirming genders.

Baby A is a BOY!

Baby B is a GIRL!

Thinking back, I do remember noticing some blood flow irregularities on Baby A’s scan, but each time I’d start to concentrate on what I thought I saw, the tech would move the transducer, begin to talk about other organs, etc. I did say something about the lack of space, which she said was due to a contraction. She followed that by saying it wasn’t a big deal. I was surprised by the clarity of the ultrasound. She said they are the newest and best machines in the world, and went on to say how lucky the hospital is to have three of them, words that would later haunt me. An hour later, it was time to do the first cervical length ultrasound. It was like an IVF appointment all over again. She had to redo it later, since I was having another contraction.

My perinatologist entered the room, started scanning me again, looked at the hundreds of images the tech had taken, then said that he was “concerned about Baby A’s heart.” At first I wasn’t worried, then more people entered the room, and my doctor said he would explain what was happening, and draw me some pictures. A nurse walked over and asked if there was anyone she could call. Then I knew, it was serious. The tears started to fall. Pictures were drawn, more scanning, then the recommendation of an emergency amniocentesis, on both babies. I called my parents to let them know what was happening, and ask for prayers.

More people entered the room, supplies were brought in, and I was prepped for the amnio. Having worked in surgery for so long, I carefully watched my doctor sterilize my stomach. Good technique. The amnio hurt (probably the 1000s of heparin injections and subsequent scar tissue), but was over fairly quickly. In addition to the amnio, he ordered several blood tests. They are testing for “anything and everything” at this point. There were questions about whether Cystic Fibrosis runs on either side of our families, to my knowledge, it doesn’t. They are testing that too.

Then it was time for more discussions. It all seems like yesterday, but also so long ago, so I’ll try to remember what was said.

I will not be allowed to deliver at my chosen hospital, or with the high risk OB I want, and have worked with during both pregnancies. The baby will need open heart surgery within days, if not hours of birth. This followed by weeks, maybe months, in intensive care. I’ve been referred to a pediatric cardiologist, and he will do additional testing, and provide more information. I see him on November 1. They didn’t want to schedule anything sooner, since the babies are still so small.

I’m not going to identify the defect, until it’s confirmed by the pediatric cardiologist. When I ask the perinatologist what could have caused it, he said there’s a higher risk in IVF babies, twins, and sometimes just really bad luck, and that we’ll never know which one it was. I’ve also learned that there’s a higher rate of this defect in Caucasian males, versus females. My doctor spent over four hours with me, which was nice, though this is definitely a very serious condition, because four hours with a perinatologist is unheard of.

The following Monday, I had an appointment with my high risk OB. She walked into the room and just hugged me. The appointment was a lot of hugs, and a lot of tears. I’ve lost weight, and she said that while she understands that I don’t have an appetite, it’s dangerous to lose weight, especially with multiples. She suggested liquid protein shakes, anything to get some calories.

When I told her that the perinatologist said I wouldn’t be able to deliver with her, she confirmed it. I have to be at a university hospital with a pediatric cardiothoracic surgeon. She said if the baby were to be born in this area, they’d fly him to the other hospital (a 4+ hour drive).

Even though I’ve always known her to be very pro breastfeeding, she recommended that I not even try this time. I had so many problems with Kate, and with a critically ill baby, it will just be too much stress. Plus, there’s no way to run in and out of the intensive care unit to feed the other baby.

During the appointment, she asked if I’d started searching for a nanny, yet. She said that if I write something up (job description, situation), she’ll make sure it’s posted in the NICUs. She said even if we don’t get an active NICU nurse, they usually stay in touch with former coworkers, and someone might be looking for a part-time job. She said especially in this situation, who better than a NICU nurse as our nanny.

Obviously it’s for the “team” at Children’s and the University to decide, but she thinks they’ll want me to move to the hospital at 34 weeks. Again, it’s up to the other specialists, but I’ll probably start regular appointments with the “team” before Thanksgiving. Wonderful, 4+hour drives, in the Midwest, in the winter.

My high risk OB does an ultrasound every other week. I told her that I just wanted her to do the scan, and tell me that she doesn’t see what the perinatologist saw. She said his machine is much better, and that he sounded “very sure” of the diagnosis when he called her. Again, a lot of hugs, a lot of tears.

Preliminary amniocentesis results (FISH)

The initial amnio results were scheduled to be back on Monday, but I had to wait until Tuesday. The MFM nurses were out (one had a family emergency) and my doctor was in another city learning to do “in utero transfusions on twins.” On Tuesday I met the genetic counselor to discuss the results. The initial amnio tests chromosomes 13, 18, 21, X, Y. So far, everything has come back normal, and there is definitely both a boy and a girl. The genetic counselor said the results (minus the gender results) could still change, but generally they don’t. We should have the remaining results next week. My doctor ordered an additional test called 22q; it’s not back, either. For now, it looks like this is ‘just’ a life-threatening heart defect.

I will keep you updated as I get more information. Prayers and good thoughts are very much appreciated. I’m still in shock.

Kate’s first trip to the ER

Last Saturday (err, 2 Saturdays ago), Kate woke up from her afternoon nap crying and wanting to snuggle, which is not normal behavior for my on-the-go explorer. After 30 minutes of off and on sobbing, and wanting to be held, I started looking for an urgent care clinic in the area. My mom happens to live in an adorable little town, which is unfortunately, in the middle of nowhere. Having no luck finding an urgent care clinic, and with Kate’s pediatrician over an hour away, plus her hatred of the car, plus it being a Saturday, we took her to the ER.

As we waited (all of five minutes) for the doctor, I started to question whether the ER was necessary. Maybe she was just having an off day, and I was over-reacting. Then I remembered something Kate’s Irish pediatrician had once said. “You know your child better than anyone else. If you think something’s wrong, bring her in, and I’ll figure out what it is.” The only thing that made sense was an ear infection, and sure enough, it was an ear infection.

Now, I know I’ve been out of the U.S. for several years, but look at this thing. How cool is that?

To get Kate’s prescription, I walked into the lobby of the hospital, put a code in this machine, and voila, Amoxicillin. We had a Pyxis machine near the ORs at my old hospital, but that was for our staff to use. High fives to whatever brilliant soul invented InstyMeds and saved me a trip to the pharmacy.

To the staff at the local hospital, you were awesome. Thank you for seeing us so quickly, and being so patient and kind to a very upset, screaming Kate. Yes, dear Kate comes completely undone every time she’s approached with a forehead thermometer. She about lost her mind when the nurse tried to put the pulse ox on her toe, and she was understandably inconsolable while we held her down to have her ears examined. Again, thank you for a great ER experience (as good as an ER experience can be), and thanks for the gifts for Kate (small bunny and stickers). As great as you were, we hope to never see you again.

16 week appointment

I am so far behind. Shame on me for updating with a 16 week appointment, when I’m now 17 weeks 2 days.

As usual, the appointment started with the nurse going over a few things; then she mentioned that since I’d just had the detailed ultrasound two weeks ago, my doctor would just listen to the heartbeats with the Doppler. When she entered the room, my doctor told the medical student to go get the ultrasound machine. Yay. Both babies looked great, moving all over. In other news, my doctor said she’s fine with me discontinuing the Crinone at this point, so if the perinatologist is okay with it (I see him tomorrow), I’m done. Blood pressure and labs continue to be great!

14 week appointment and med update

(apologies for the formatting issues, I've been fighting with Blogger for over an hour, and I give up)

Since I’m now 15 weeks 2 days, I thought I should probably update with the 14 week appointment. Where does the time go?!?!

First a med update:

12 weeks 6 days: done with estrogen tablets

14 weeks 3 days: done with Gestone (progesterone in oil)

Yes, this nasty stuff

15 weeks 1 day: done with Prednisone (may the puffiness in my face soon disappear)

Crinone, you are next to go (hopefully within 2 weeks)

Okay, 14 week appointment…

Baby A:

Baby B:

The ultrasound tech confirmed genders on both, and after discussing it with my husband, we will be sharing the news. I want to wait a little bit longer and have a few more ultrasounds (just to be sure). Also, after talking to some friends about what happened last time, the consensus is that some people are just rude and will therefore make inappropriate comments, but that’s certainly not a good enough reason to spoil the fun for everyone else. So yes, a gender announcement within two-ish weeks!

My doctor seems very pleased. My labs are great, BP was 106/68, and she checked my ankles for swelling, none. The medical student that was with her decided to use the Doppler to check the heartbeats and had I not JUST come from a 30 minute ultrasound, I would have been terrified; she couldn’t find Baby B’s heartbeat. Baby A was fairly easy to find, Baby B was, as usual, all over the place and impossible. Finally my doctor took the Doppler and even she was only able to find Baby B for a couple of seconds (not even the 6 seconds necessary to get a decent count).

She’d already received the ultrasound pics and report. Baby A is measuring at 17%; Baby B is measuring at 12%. She said she’s not concerned since they’re within 5% of each other. I did mention the perinatologist’s comment about wanting the babies out by 38 weeks. She said that they would absolutely be out between 37-38, probably closer to 37. There's just too much that can go wrong past that point and particularly with my risks, they're better out than in. Overall, a great appointment. I see her again on Monday.

13 weeks 3 days, first appointment with the new perinatologist

On Thursday, I had my first appointment with the new perinatologist. Things started as usual, going over medical history with the nurse, and then an ultrasound.

All but one picture I was given are 3-D, so if you find it creepy, sorry. The ultrasound tech guessed the gender of one of the babies, though it’s still really early, and honestly, after a comment we received when we shared Kate’s gender, I’m not sure if we’re going to tell this time, or not.

Babies: both are measuring well, within 2 days of each other (very important) and their heartbeats are great.

The perinatologist was impressive. We covered a lot (most of it was him asking questions and going over the game plan, though he continuously asked me if I had questions, too). Basically every risk with a singleton pregnancy is multiplied 4-5 times with twins. So while there was a great risk of fetal demise with Kate, it’s even worse this time. He wants the twins out by 38 weeks (he said especially because they are IVF twins, which I need to get more clarification on, since I’ve never heard of that before). Though he doesn’t expect me to make it to 38 weeks, anyway. He’ll do the anatomy scan and look for chromosomal issues at my next appointment (17 weeks) and at the 21 week appointment, he’s going to do a fetal echocardiogram. Apparently IVF babies have a slightly increased risk of cardiac issues, again, multiplied risk with twins.

At 32 weeks, if not before, I’ll start BioPhysical Profiles (non stress tests and ultrasounds) once or twice a week. I had them with Kate, and actually found it somewhat comforting to be monitored so closely.

As for travel, the short answer is no. He said that while he doesn’t know what kind of care is offered in Slovakia, he does know what’s offered in the U.S., and it would be too risky for me to travel. We talked about it in detail, but yeah, short answer, I’m not going to Slovakia. He said he “highly recommends against it.” So that’s that.

Tomorrow I see the high risk OB again, and I’m interested to hear her opinion after reading the perinatologist’s report.

12 weeks 5 days, visit to the ER

first Rhogam shot for this pregnancy

first, and hopefully last, ER visit for this pregnancy

So, I’ve been really bad about updating the blog, but once again, I’ve been plagued by first trimester cramping and spotting. For weeks I excused the cramping as uterine stretching, and it most likely is. Well, the other night the spotting increased, then bleeding, then intense cramping. By yesterday afternoon it was just too much.

And once again, the hotel shuttle driver to the rescue (It was just about time for Kate’s nap, plus my husband had packing to do, so it was easier to go alone). I just have to say once again, I adore the staff at the hospital I go to; EVERYONE I dealt with yesterday was professional and kind.

My first nurse had also done IVF, so I think she took a special interest in me. She was beyond sweet and attentive. When I was being wheeled to ultrasound, she said to be sure to push the call light when they brought me back, so she could check on me right away. I was wheeled back to ultrasound and very relieved to hear the words, “There are two heartbeats.” Both babies are measuring well.

Baby A: 6.3cm, measuring 12 weeks 5 days, heart rate 157 bpm

Baby B: 6.4 cm, measuring 12 weeks, 5 days, heart rate 161 bpm

The ER doctor recommended “total rest” until I see the perinatologist on Thursday. He also thought I should have a Rhogam shot, which I agreed with, but he wanted to discuss it with the OB on-call, first. I knew it was going to be a long wait as he walked out the door and I heard them call the first of MANY traumas.

I waited, and waited, and waited. The night nurse came back to tell me there was a problem in the pharmacy, and they “hoped” to have the Rhogam ready around 8pm. When she finally came to give me the shot, she apologized profusely for the delay. My response was, “Meh, it’s the ER, it’s life, it happens.” She said she wished everyone was as understanding.

Arrived in the ER: 3:15pm

Discharge papers printed and brought in: 4:58pm

Walked out of the ER: 8:46pm

It was a long evening, but the absolute most important thing is that both babies are alive and well.

11 weeks, nuchal scan

On Monday I had another big appointment (sorry it took so long to update, busy week).

First I had a meeting with the genetic counselor. She gave me several options for testing, including integrated versus sequential, and CVS, and an amnio, and more blood tests. I was already scheduled for the nuchal, not because we would have terminated had there been a problem, but because I’m a type A, organizer, planner extreme and if there were an issue, I would have had time to prepare and get the best specialists on board, etc. Anyway, I'm just not comfortable with the more invasive testing, given the miscarriage risk. I went ahead with the nuchal, as planned, though I learned that the blood test portion isn't really relevant because they can't tell what percentage of the numbers are coming from which baby. Interesting.

The genetic counselor also asked if I knew the conception date. I told her yes, that it was an IVF pregnancy. She asked if I'd had "real IVF." Err, yes, it *seemed* fairly real at the time. She said that a lot of women come in and say they've had IVF, meaning IUI. Wow. I seriously can’t imagine having a medical procedure performed and not knowing the proper name of it.

In other news, we talked about my upcoming appt with the new peri and she said he likes to follow his IVF patients very closely. Which might translate into, I'm not going to Slovakia. We have a lot to talk about. It sounds like between the new peri and my maternal fetal medicine doctor, I'll be in every other week until 20 weeks, then weekly. Wowza.

The ultrasound portion was fabulous. The tech spent a lot of time on each baby (neither was cooperating). And maybe this is normal for the U.S. (if so, I’m insanely jealous), but they had a huge flat screen monitor on the wall, so it was very easy to see what she was measuring and all of the details. Another woman was training to be board certified in the nuchal scan, so she came in after the test and spent another 30 minutes practicing with the ultrasound and taking pictures. During some of the first round of photos, Baby A reached up and wiped his/ her hand across its forehead, as if to say, too many pictures. Kate did the same thing during her nuchal scan. So cute!

The nuchal number was normal for both babies. Full report to follow.

At 11 weeks:

Baby A: measuring 11 weeks 0 days, CRL 4.08cm, heart rate 176

Baby B: measuring 11 weeks 2 days, CRL 4.51cm, heart rate 171

I’m concerned about the difference in CRL, but the ultrasound tech said it wasn’t a big deal.

Follow up: Yesterday a woman from the hospital left a voicemail for me stating that she had the results, and gave me 45 minutes to call her back before she was to leave for the day. Unfortunately I didn’t get the message until really late last night. Why she didn’t call my cell phone is a mystery. Anyway, I called this morning and of course she’s out until Tuesday. The good news is that the results were faxed to my high-risk OB. One brief message and returned phone call (within 20 minutes), and though she hadn’t read the full report, said that everything looks “great.” Great, coming from her, will more than get me through the weekend. Thrilled.