First Amnio Results and Quilt Update

We heard the initial results from the amniocentesis today. They were able to do something called a "Fish" Test, where they flag chromosomes 13, 18, and 21, and are able to see if those particular chromosomes have abnormalities. Praise God, they didn't! These are the most common chromosomal disorders, although not necessarily the most serious. So we are not out of the woods yet. It will take another week to process the rest of the results, looking for other chromosomal disorders. But we are thankful for this good news at this point!

The kids and I have continued working on Hope's quilt, and we are just about done. Here is the final version, missing only the binding:


I knew I wanted to do something special for Hope, so here is what makes the quilt special: the white squares in the corners and top are actually the skirt from my wedding dress. I have always thought that the baby-quilt-from-wedding-gown idea is cool, but I never had the guts to actually cut into my dress. This time, though, I really wanted to. Sadly, my dress was not cleaned after our wedding, so I was not able to salvage as much fabric as I would've liked--9 years of grime was pretty crusted on a lot of it. But I was able to get enough for the front, and I'm very happy with the way it turned out. I'm going to cheat and use a satin blanket binding instead of making an actual quilt binding. That will be much less labor-intensive for me, and I hope Hope will enjoy feeling the soft binding.

3 weeks to go

It has been 3 weeks since our last trip to Indy and my last update, and Lord willing, will be 3 weeks before our next trip. And that next time, we will be going up for my c-section. We pray that Hope will be kept safe until that time, and not try to come too early.

The past 3 weeks have been a little crazy. We had a visit from my parents, where they generously spent their week off cleaning our house to get it ready to sell, and watching our kids while David and I flew out to New Jersey to go house hunting. After getting back from that trip (me feeling thoroughly like a country mouse after seeing the city, I might add...), David and I made an offer on a house in Boonton, NJ, which has since been accepted! We are now waiting on inspections to happen next week, and then we'll be all set to close on the house this summer. We praise God for providing a house for us that we love, and showing us that He is preparing the way for us in the northeast. Just so you'll come visit us, here are a few pictures:

(The street's really not as steep as it looks--I just tilted the camera a little)








Our awesome, huge dining room, so you can come have dinner with us:









And the cool fireplace in the living room, complete with wood-burning stove:


Since getting back, David and I have continued to de-clutter this house, in preparation for putting it on the market next week. We were going to put it up this week, but a nasty case of the end-of-the-season flu bug made the rounds, and we pushed meeting with our realtor until next week.

So, finally, here's our update on Hope! We went in this morning for another ultrasound, meeting with Dr. Hiett, and amniocentesis. The ultrasound had nothing new: Hope is continuing to grow at the same rate, including her stomach and head. They're still a little small, but they're staying in the same percentiles as the previous ultrasounds. The tech said she weighs 4 lbs, 14 oz. This seems tiny to me, but if she puts on another pound in the next 3 weeks, she'll be about 6 pounds, which is closer to normal. Dr. Hiett really refused to comment on any of her measurements, instead deferring all comments until after she has an MRI the day she is born. He then did the amniocentesis. It didn't hurt much, but it did feel very strange. It didn't help that as soon as he got his needle in a pocket of fluid, Hope moved, and he had to try to find another spot. Because I'm so far along, they require a non-stress test after the amnio just to make sure the baby's ok. I've never done one of those before, and it was pretty boring--they hook you up to monitors for 20 minutes to make sure the baby's heart rate is where it should be. While we were doing that, one of the genetic counselors came in to talk about what tests they'll do from the amniotic fluid, and what tests will happen after Hope is born. The short version of the story is that we will get some preliminary results on Monday (or Tuesday at the latest), and then we'll get the full panel of results back about 10 days after that. After Hope is born, David and I will need to decide how much more, if any, genetic testing we're going to have done on her.

To finish up our visit, David and I met with Rosie and a team of 3 supportive care people. This is the team that will help us out with arrangements if Hope is not going to survive. They listened to what our desires are for the first few hours after Hope is born, and we talked about a few of the worst-case-scenario options. All in all, I was happy with the way the talk went. I think we're all on the same page about how we want treatment to look, and it will be helpful to know a few familiar faces if we have to deal with those end-of-life issues. Please continue to pray for us to have wisdom with all the medical decisions we will be making for Hope.

So, that's all for now. The next 3 weeks will be filled with some final organizational details (when will the kids come up to the hospital?), washing some baby linens and the car seat cover, and finishing up some packing and decluttering in the house. Did I mention that I'm in full nesting mode, and it's manifesting itself in packing every single item I will not need for the next 4 months (which is a surprising number of items--how did we get so many books??). I'm hoping to put up a picture of our almost-finished Hope quilt, and will certainly post the results of the amnio as soon as we know them. Thank you all for your love and your prayers--we cannot do this without you!

Day in Indy

David and I had another day in Indy today at St. Vincent. We started the morning by meeting with the doctor who will perform surgery on Hope, Dr. Young. Then we went for an ultrasound and a meeting with a maternal/fetal medicine specialist, and finished up by touring the NICU and talking to one of the doctors there.

We went into the visit with Dr Young with a million questions to ask him. He surprised us, though, by starting out the visit explaining that he would prefer to wait until Hope is 3-4 months old to do surgery. This was something we had seen in stories online, but nobody that we have encountered in the process yet had said anything of the sort. Until today, we had been told that surgery would happen within 24 hours of Hope's birth. Naturally, this new information started the visit out on a good foot for us. He explained that he would prefer to wait until Hope has grown a little bit to do the surgery, providing she has a good, strong layer of skin covering the encephalocele. He told us he would be happy to let us take her home and have as close to a normal life as we can for those months, bringing her back this summer for surgery. When we told him that we would be moving to the New York suburbs this summer, he said, "Oh, I've got a friend in New York who could do the surgery!" While we liked him enough to hope that he can do the surgery for us here in Indiana, we were encouraged that he had somebody on the east coast he could refer us to.

Dr. Young's office was run so efficiently that David and I had about a 45 minute break before needing to be back for the ultrasound, so we took a Panera break and got some bagels to munch on, basking in the good news and thoughts of taking Hope home before Easter.

Back at maternal/fetal medicine, we were told that our usual doctor, Dr. Hiett, was not in, but that we would be seeing a different specialist, one of his 3 partners. We were taken back to the ultrasound room, where the tech took the measurements, and got the cool 3-D picture above. We were thrilled that Hope let us see her face today. We have had 6 ultrasounds up to this point, and this is the first time she has been positioned correctly to see her face. Thank you, Lord, for giving us this joy today! The tech talked us through what she was doing as we watched on the screen. Hope is continuing to grow well. She is still small, and both her head and abdominal cavity are smaller proportionally to the rest of her body. They are not off the charts, however (around the 5th percentile). But she is growing proportionately. The ventricles in her brain looked fine today, and we watched on the screen as she made breathing movements. My amniotic fluid level is still exactly where it should be, and her bladder was full, indicating that she is swallowing.

The consult that we had with the doctor did not go as well as we had hoped it would. This man seemed to have a different agenda than Dr. Hiett, and he used scare tactics to try to push us into having the amniocentesis today, and to move our scheduled c-section date up significantly. While I was frustrated and upset by his approach, David was as solid as a rock, telling the doctor "no" at every turn. Finally, he left the room and we were free to go as well. We will be returning to their office in 3 weeks to have the amnio and talk to Dr. Hiett. As it turns out, we will be changing our c-section date, but not for the reasons he had suggested. We learned that he is the doctor on c-section rotation the day we are scheduled, so we will be picking a day close to that when Dr. Hiett will be on duty.

Our visit ended by touring the NICU and speaking to one of the doctors there. We liked him as well. He was kind of a happy medium between the super-upbeat neurosurgeon and the overly-pessimistic maternal/fetal guy. He was careful to listen to what our desires are for Hope, while cautioning us about the dangers in our situation.

We will be returning in 3 weeks for another ultrasound, the amniocentesis (finally!) and a consultation with the team of people in the NICU who deal with parents choosing comfort care for their babies. While we hope we will not need them after Hope is born, we need to talk with them beforehand so they can get to know us and understand what our desires are for Hope, as well.

We realized today that we have another area that have not even thought to be praying for: we need discernment as we deal with doctors and nurses who will be informing our choices about care for Hope. Talking to Dr. Doom-and-Gloom made us realize that his interests do not seem to line up with Hope's best interest, and we need to be able to tell that about someone before they offer their advice or professional recommendation about what we should do in various situations. In dealing with St. Vincent generally, we have been thrilled that nobody has (outright) suggested we terminate our pregnancy. The suggestions of the doctor today were along those lines, and he was offering them with a heavy, manipulative hand. We pray that God will open our eyes and allow us to see the agenda of the people caring for us, and then allow us to respond with resolve.

And as always, we thank you all for your prayers. Thank you for praying, and thank you for letting us know you are praying and asking how we're doing. We're learning that God gives us grace to handle the problems of today, and we pray for peace as we try to not worry about the problems of the next few months. And thank you to those who have so willingly watched and offered to watch our kids. Sweet Heather had our 4 children from 7:30am until 5pm today, plus her own 5, and she looked as cool as a cucumber when I went to go get them. Thank you all for loving us in this way.