Sunday, May 25, 2008

One week down!

It's amazing how tiring laying around all day is! The first week is over, and it went pretty well. We have had a lot of visitors, and some great meals! The calendar that Gaines and Miranda set up is working really well, and we really appreciate the help, and the visits! I'm surprised by how much good stuff there is on TV; I can still find new things to watch everyday. I've also started knitting, so please don't laugh at our children when you see them in really ugly sweaters in a few months! Steve is doing a great job taking care of me, the house, and the yard, and the dogs protect me from the crazy neighborhood squirrels.

Tuesday, May 20, 2008

Yes, they are still Baby A and Baby B!

I promise we do not know what gender the babies are - sorry for any disappointment that causes : )

Through all of this we kept telling everyone that we did not know what the babies are, and no one slipped up - amazing! We had to turn our heads a few times (not that we could tell what was on the screen), but we never saw anything! After going through all of this, most people do know what the babies are, but I still want the surprise at the end. Steve almost caved in a few times, but he held out for me, and now I think we can make it until the B-day.

May 19th

Another visit to the perinatologist today for another ultrasound. Things still look good, but Baby B has less fluid than last week. The Dr. did not seem too concerned, and wants to see us again in two weeks. We did not have our favorite tech, Latrell, so we didn't get any new pictures : (

The babies are both small (as compared to where they should be at this point), so we are still hoping to keep them in as long as possible, and get them as big as can be.

Back in Raleigh.

It was so great to get home! We were happy to see the girls, and be done with all the stress in Cincinnati. Steve was anxious to get back to work, and I had hopes of working from home while on bed rest.

But again, nothing is easy. While we were gone, Raleigh got a lot of much needed rain. Evidently lighting from one of the storms hit our house and fried our internet router, blew out our freezer downstairs which had several Dream Dinners in it, and found a problem with our brand new roof (it found its way all the way to our living room ceiling). So, poor Steve spent 3 days getting our internet working again (we thought wireless would be really important for me to work from home), and had to get the roof taken care of, in addition to taking care of me.

Thankfully, our friends Gaines and Miranda set up a yahoo group to bring us dinner twice a week. What a great help that will be! We look forward to visiting with everyone who comes over, and appreciate all of the thoughtfulness!

It's quite an adjustment to be forced to stay at home with very limited activity, especially now that I am feeling better and have a little bit more energy. I guess the closets will just stay messy, and the garage full of junk until next year when I get some more PTO! It looks like I won't even be able to work from home, which we were both hoping would be a big distraction for me. Not working is probably for the best, and will allow me to rest more. 12 weeks or so is a very short period of time in the whole scheme of things, but it does take a couple of days to get used to the idea. Another positive is that I get to spend a lot of quality time with our four legged children before the two legged children get here. Although their napping schedule does not seem to be impacted by me being at home : )

Four days after surgery.

Another round of ultrasounds. I can just about sleep through them now.

All of the information was sent to Dr. Crombleholme (in the picture with me), and he said things looked as good as they could look. yea!! what a huge relief for us! The blood flow looked good, and the fluid levels looked good too. Now it was just up to me to rest and incubate the babies for as long as possible. Another risk of the surgery is the babies coming too early. We were told that, on average, when this procedure is performed, the babies come 10 weeks later. For us, that would be around 29 or 30 weeks, which is not ideal, but would be OK. We are really hoping they decide to stay in a lot longer!

After getting the good news, we hit the road to head home. We got a little bit east of Knoxville, and celebrated our good news by staying at a Best Western for $40, and getting a good meal at the Sagebrush with a panoramic view of Interstate 40 : )

The day (and days) after.

Dr. Livingston took a look at the babies on Saturday morning, and they both had heartbeats! yea!! He also said the blood flow looked much better, but we would know a lot more when we came back on Tuesday. This procedure is so amazing that they see incredible improvements in just a few days. Dr. Lim and Dr. Crombleholme also came in and talked to us, and checked to make sure the babies and I were all doing OK. I got discharged after breakfast, but we took our time, and chatted with the nurses for quite a while. The only place we had to go was to the hotel, and I was the only patient there so the nurses had time to chat!

Saturday afternoon was spent napping, and adjusting to being on bed rest for the remainder of my pregnancy. I was a bit sore, but felt pretty good overall, and the hotel bed was so much more comfortable than the hospital bed!

Steve took great care of me, and made sure I had plenty to eat, and fresh icy water all the time. He's a great nurse! We even got a visit from our friend Miranda Weaver who was in town on business. Her visit was a nice distraction, and a good reason for me to get dressed!

Surgery day

May 9th
Another early start. We were at the hospital at 6:00 am to check in and surgery was scheduled for 7:30. I was scared to death (I think Steve was too). It seemed like there was a team of nurses to take care of me, and they were all wonderful. They did another ultrasound to get another look at the babies, and got me prepped.

The nurses rolled me downstairs to the pre-op area, with Steve beside me the whole time. Dr. Crombleholme and Dr. Lim came to check on us to see if we had any more questions, and to get the final OKs. The anesthesiologist came and prepped me for the epidural, and the chaplain from the Fetal Care Program said a prayer with us. I took something to make me groggy and off we were. I was hoping to be very groggy for the surgery so I would not hear the doctors talking, but again, things did not go according to my plan! I was in and out during the procedure and did hear a lot of talking, but what I heard were all good things. I did ask for more "groggy" drugs, and she said she gave them to me, but I must have been immune! The best thing I heard them say was that the placental share was 70/30. This meant, as best as they could tell, Baby A had 70% of the placenta and Baby B had 30% of the placenta -enough to live. This was one of our biggest concerns going into the surgery. Before getting inside they could not tell how much of the placenta Baby B had, and if it was not enough, the baby would not be able to live on its own. The point of concern is 80/20, so we felt really good with a share of 70/30.

The surgery went really well. They did not have to do the c-section procedure, in fact the incision is only about 1/2 an inch on my left side. They use a long, hollow, metal shaft to go through everything and then put a camera and a laser through this to look at the placenta. Using the camera, they found 11 vessels being shared by the babies, and used the laser to cut them. An echocardiogram in a couple of days will indicate whether or not all the vessels were found and cut. They also used the laser to put 5 holes in the sacs between the babies so the fluid would even out more quickly, and provide more instant relief for both babies. The third part of the procedure was the amniotic reduction. They removed a gallon (yes, a gallon - think about carrying around a milk jug in your belly, in addition to everything else!) of fluid from around Baby A. The procedure took about an hour, which was another unknown going in. It could have lasted anywhere from 45 minutes to 3 or 4 hours. The doctors were pleased, and we were thrilled.

I think it was only a few minutes later when I saw Steve, and the first thing I told him was, "it's 70/30," with a big smile. He asked if I would remember saying this to him, I do. The doctors talked to him, and told him how well everything went, and that we would know a lot more in the next 24 hours or so - more waiting.

Back up to my room where I had the undivided attention of two nurses for my entire stay. Rock star treatment! I was very thirsty, but couldn't drink or eat until they were sure I wasn't going to go into labor. After the epidural wore off I did have some cramping, but nothing more than what they call irritation contractions. My uterus was not happy with being messed with so it was contracting pretty regularly, but minorly. About 7 pm I got the OK to eat! The contractions had subsided, and they felt I was out of danger. Another risk of this procedure is going into labor and losing both babies, but thankfully we got through that part with not too much trouble.

The only negative part of our stay was that Steve did not get to eat for free. He had to go to the cafeteria to get dinner because the "room service" person was not very nice, or cooperative. Steve spent the night with me in a very uncomfortable bed/chair - what a trooper. It was a good thing because Dr. Livingston came in at 7:30 to check on the babies.

The decision

May 8th
The program at the Fetal Care Center is designed to put the patient in charge. They do all the testing and present you with more information than anyone could possibly process, especially in such an emotional situation. Dr. Livingston recognized that we were in Cincinnati because we wanted to save our babies, but he still presented us with the option to do nothing invasive, and to let nature take its course. However, he told us that they were rearranging their schedules, and trying to get operating room space for Friday morning. After meeting with him on Wednesday afternoon we left the hospital and were to call back with our decision about the surgery. We called back a few hours later and confirmed we wanted the surgery to take place.

The testing told them a lot about our babies and things that were going on, but there were still a lot of unknowns. They did not know how many vessels the babies shared, or how much of the placenta was nourishing each baby. They did not know if they would be able to see the vessels in the placenta, or if they would need to do something along the lines of a c-section, but put everything back in me when they were done. We had to take all of this into consideration and hope that after it was all done we would have at least one healthy baby. It was so scary, and so emotional, but we knew surgery was the best option for saving our babies.
A minor concern for us was the cost of the surgery. We went to Cincinnati having no idea how much the surgery would cost, or whether or not insurance would cover it. Obviously we would do what ever we needed to do to make things work out for all of us. Luckily, on Thursday we found out that the folks at the Fetal Care Center had contacted our insurance provider and it looked like everything would be covered. It was a relief to find this out, but we would have proceeded regardless. The center is so wonderful that they do not turn away any patients, even those who can not pay. If you are looking for a place to make a charitable contribution, please consider Cincinnati Children's hospital, and the Fetal Care Center specifically; we are so lucky they are there, and that Dr. Crombleholme has the Fetal Care program.

On Thursday we went back to the hospital for pre-op testing. They took blood, and did an EKG on me. Seemed easy enough, but nothing had been easy up to this point so why should this be? The tech who did the EKG thought it looked funny, and the nurses helping us had a very hard time getting a cardiologist to look at the print-out to give an OK for me to have surgery. We waited around for about four hours before getting the OK. Evidently I have a "different" heartbeat, or something like that. Things worked out, but after all that we had been through, we were not going to let some funny reading on an EKG prevent me from the surgery on Friday!

After such a crazy day, I needed a pedicure (plus the sand in Grand Cayman did a number on my toe polish!). The nurses suggested a great place to go; I had a wonderful pedicure, and Steve got a mini-massage. Perfect for the day before surgery!

On to Cincinnati.

May 6th
We spent our 3rd wedding anniversary driving to Cincinnati, not exactly romantic, but for a good purpose. We were very worried, but hopeful our babies would be taken care of by the doctors recommended to us. It took us 9 hours, with lots of potty breaks : ) The drive through Virginia and West Virginia was very pretty, and the weather was great.

The hospital helped us with hotel reservations at a discounted rate at a very nice place just a couple of blocks from the hospital. We checked in, got some dinner, and some rest before a very long day of testing.

May 7th
Our first appointment was at 6:45 Wednesday morning! I had an MRI on my belly which was not too bad. Next was an ultrasound to look at the anatomy of the babies, and take lots of measurements. It took two technicians 3 hours to get all the information they needed (several potty breaks were needed here too!). The last test was an Echocardiogram to look at the babies hearts, and the blood flow in the umbilical cords. This took another 2 1/2 hours - whew! I think it took so long because there are two babies, and because Baby A can move around so much it's hard to get readings, on the other hand, Baby B is so scrunched, they have a hard time getting a good look at everything.

We finally met with Dr. Livingston at 4:30 and he presented us with all of the test results from the day. He had a presentation with over 1500 images from the MRI and the ultrasounds - pretty amazing when you think how long you normally have to wait for "test results." He was very thorough in his discussion with us, and presented us with all possible scenarios. The meeting was very emotional, and the babies were in worse shape than we had realized. Baby A, the recipient, already had a thickened heart, and was struggling to handle the extra blood volume. Baby B, the donor, was 30% smaller than Baby A, and the growth of its body was being compromised so as not to impact brain development. Putting all of these things together, the doctor suggested that we proceed with the laser surgery. We agreed.

Not the news we were hoping for.

May 5th
We did not get the news we were hoping to get at the Perinatologist appointment. Baby A had about the same amount of fluid, but Baby B had much less. Not a good sign. The doctor was pretty sure that the babies were suffering from Twin to Twin Transfusion Syndrome, and he was referring us to specialists for treatment.

The specialists he recommended were in Philadelphia and Cincinnati. We thought we lived in a pretty medically progressive area with Duke and UNC nearby so we were very surprised to hear that we would have to travel for treatment.

The folks at the Fetal Care Center at Cincinnati Children's Hospital contacted me Monday afternoon, and said that we needed to be in Cincinnati for testing starting early Wednesday morning. Things were moving very quickly!


April 27th to May 4th
Grand Cayman! What a great place to relax and unwind after tax season, and before the arrival of twins! There were several other pregnant ladies on the beach so I didn't feel too out of place. Steve's biggest worry each day we were there was to get down to the beach early so we could get an umbrella and chairs on the front row. He took his job seriously, and we had front row seats all week!

We did worry about the babies, but tried not to dwell on the issue. We really hoped for good news upon our return.

We had a beautiful week at the Marriott, did some snorkeling, ate great food, got served drinks (lots of virgin pina coladas) on the beach, drove around the island a bit, took a submarine tour at night, and did a lot of reading - perfect!


April 24th - Level 2 Ultrasound
Things had been going so well up to this point. Even at this appointment the babies looked great, except for the amount of amniotic fluid around each of the babies. Steve and I could tell something was a little bit different about Baby B; it seemed more scrunched up, and the tech got much quieter while she was scanning Baby B. After she got all of her measurements, the doctor came in and told us it looked like our babies were showing signs of Twin to Twin Transfusion Syndrome. What??

Twin to Twin Transfusion Syndrome is a rare condition that only affects identical twins who share a placenta. What happens is that there are vessels in the placenta that are being directly shared by the babies, and this causes one baby to get too much blood, and the other to get too little. One baby ends up getting bigger, generating much more amniotic fluid, and having heart trouble due to the extra blood. The other baby suffers from lack of nutrients which results in too little amniotic fluid, and too little growth. The smaller baby can also suffer from heart trouble.

The first thing we read about the condition was that if left untreated, especially when diagnosed as early as our babies were, that the condition is just about 100% fatal. We were terrified. On the other hand, there was a way to correct the condition, through laser surgery, but we would have to travel to Cincinnati or Philadelphia for treatment. Wow - a lot to process. We told the doctor we had a vacation planned for the following week, and he said it was OK to go, but to come back Monday when we returned.

So, we left our appointment with a million questions, and nothing to do but wait until the following Monday to see if there were any changes with the babies. We had hope that the fluid levels would stabilize, and we would not have to go thorough surgery.

April 25th
We had a routine appointment scheduled with the OB, and tried to ask him some questions about the syndrome. He really didn't know too much, and put it in perspective for us. We go to a pretty big office that delivers about 1000 babies a year. Of those, maybe 2 women have identical twins, and of those maybe 1 every couple of years has this syndrome. So, there are not a lot of people who deal with our situation - great. He also measured my belly, and at 17 1/2 weeks, my belly was the size of a belly 7 months along with one baby. I was huge! I also had a lot of swelling, especially in my left foot and ankle. This Doc attributed the swelling to the twins, and being so big. To me it still seemed a bit early to have so much swelling.

Start spreading the news!

Baby B at 12 weeks

Baby A and Baby B at 12 weeks - the only picture with both of them

March 19th - 12 weeks - everything looks good. what a relief! Two babies that both look healthy! We were so nervous to go to our appointment today. 12 weeks is such a huge mental milestone, but we got great news after the ultrasound and feel confident sharing our happy news with everyone. This week will be a lot of fun telling family, friends and co-workers that we are going to have identical twin babies in a few months.

Still twins at 8 weeks.

February 19th - things still look good. Two heartbeats, and another confirmation that they are identical. wow - I think we are still processing the idea of twins. It might take a while for the news to sink in.

It's Twins!

February 11th - 7 weeks along. Our first doctor's appointment, and there is a heartbeat (whew!), but wait, there's another heartbeat - twins!! Steve has always wanted twins, and now his wish has come true. But they are not a boy and a girl, the doc says they are identical!

I'm Pregnant!

It's official - January 23, 2008 - the positive test!