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.