Sunday, March 30, 2008

Surgery went well (March 27/08)

Surgery was quick and painless, thank goodness for spinals. The worst part was recovery, it took over 3 hours to feel my legs again, much longer then after the c-section with Emily. No premature labour, thank God!!! Step 1 done with success. My family came to visit in the hospital which helped so much with the time. Both Tammy and Danielle brought food and magazines which is the best thing when on bedrest (and when your meals keep coming as clear fluids).

Mom and Dad arrived the day of my surgery and have been a huge help. It's reassuring knowing that Emily is happy when she's home and doing well. We're keeping her with her sitter, Renae for the most part. There are so many changes going on for her, that I want to keep daycare consistent, she loves being around the kids and Renae. It is very hard for me, not being able to play with Emily like I normally would. I can't lift her, and have to spend most of the time in bed or the couch, and she's too young to understand what is going on. She was scared to come close to me at the hospital because of the IV pole. It breaks my heart that she would be scared of her own Mommy.

I was in the hospital until Saturday (yesturday). I had another regular and vaginal U/S to check the babies and my cervix, and the stitches were in well, and the babies still healthy, but the fluid is accumulating and I'm at the fine line between waiting and doing the amnioreduction. When the deepest pocket of fluid in the larger baby is greater then 8cm, this is usually the point where amnioreduction is done. Again with treatment there is the risk of my membranes rupturing and going into labour. I am 19 weeks pregnant and the babies would not live at this point. I was measuring between 7.5-8, therefore very close to needing treatment. My next appointment is tomorrow, Monday March 31st. Dr. Macleod said come prepared to stay the night if she does an amnioreduction.

I'm happy to be home, but feel very helpless in that I have to ask for things all the time. Emily has become very comfortable with her Nanny and Grampie, which really is good, but it was sad when they went out for a bit today, because Emily cried and cried, and I couldn't comfort her at all. She only wanted Nanny, not Mommy or Daddy. She's so confused. I was very upset that she didn't want to come to me, luckily she warmed up again after 10 mins or so and was playing with me and cuddling as much as she could in bed, lots of kisses and hugs.

Tomorrow is another day, and we'll see what the U/S shows.

The beginning of bedrest (March 25/08)

Ok, my next U/S was Tuesday March 25th. The good news was that both babies still have good bladders and hearts and grew an ounce each. There was 22% difference is size, so a little bit worse, but no major changes. Still a lot more fluid around the bigger baby, but basically stayed the same from the first U/S. I had a different doctor do this U/S which was good in a way to hear another person's perspective. He also did a vaginal U/S (sorry it sounds worse then it really is) to take a look at my cervix.

We thought we had enough problems with the TTTS. He told me that my cervix was very thin, 2.5 cm to be exact, and as low as 2.0 cm when pressure is applied to my uterus. For anyone who doesn't have children...the thinner your cervix is, the more likely your water will break and you can go into labour. Normal is greater then 3 cm, so I was at a pretty bad spot considering I was only 18.4 weeks along....still way to early to deliver babies. Which is something I also forgot to mention. If TTTS is discovered later in a pregnancy, another treatment option is to deliver the babies if it is a safe time to do so, which is why it is so much worse if early in your pregnancy. So my Dr, and the Dr who performed the U/S went off and discussed my case and came back with some options. They told me, that I could wait till Friday and see if there were any changes...there was the possibility that my cervix could stay the same until I am safe to deliver, however very slim chance, with the extra pressure of two babies in there. The second option was to have surgery, a cerclage to stitch up the cervix, which is fairly common when it is planned and happens in the first trimester. However in the second trimester it is more of an emergency cerclage. The risk of having the surgery is the exact thing we're trying to prevent...early labour, bleeding and infection.

We decided to have the surgery, and was booked 2 days later for Thursday. In the meantime I was still Aunt Nancy sent me an email with a positive story of a girl named Katie from California who had a very long and challenging pregnancy with both amnioreduction and surgery for treatment. She delivered two healthy babies in the end. I contacted her by email and she wrote me back that same day with some contact information of Mary, the president of TTTS foundation and Dr. Julien De Lia the man I mentioned earlier in a blog. I emailed and called Dr. De Lia, and he called me back that night before I went in for surgery. He is very knowledgeable, and gave us some hope. He was very happy I was having the cerclage, because he said many Dr's around the world treat the TTTS with surgery, and ignore the fact that the cervix is thinning until too late, and eventually the patient may go into premature labour anyways.

We were scared to have the surgery with the risk of premature labour, but we also knew that if my cervix thinned further surgery wouldn't be an option because there would be nothing left to stitch. My plan of working till the end of the month didnt' quite work out, as I was put on bedrest immediately after my Tuesday appointment in hope that things didn't get worse from Tuesday till Thursday.

It all sets in...

I got back to work after my appointment, and tried really hard to keep myself together. Everyone knew I was going for an U/S and would most likely find out the gender, so it was difficult to be happy and tell everyone I was having twin girls, without thinking about the diagnosis of TTTS. I was ok, for the first 10 minutes or so, and then all the information we learned hit home...I was in a step down unit with my back to all the nurses trying hard to look through a chart so that no one could see the tears coming down my face, my vision was blurred, and hiding through a chart was doing me no good. One of the nurses, Jolene, who is also a friend, saw me...and that was it. She pulled me aside, and I could barely get the words out to tell her what was going on. And then another friend and coworker also came over, and I was a mumbling fool.

Being pregnant in itself has its own set of fears. Everyone wants a healthy baby, and there is risks with every pregnancy, even when U/S shows everything is going well. It is not until you hold your baby in your arms that you really feel a sense of relief. To know that there is problems going on already, is very scary, especially when there is nothing that you can do about it.

I managed to finish up the work day, and that night Keith and I both did our research on the computer. This was the first website I read which had some really good information, but also very upsetting when reading the message boards. If you have some time, take a look. The "during pregnancy"boards are encouraging....but it's the "loss of both" or "loss of one" which really made me realize how serious the disease is. (by the way I apologize for my poor grammatical skills, I realize I am writing both in the past and present at the same time).

All week, I read and read...but the more informed I became, the more upset I was. Sometimes knowing to much is not a good thing. The only thing I read that I could do to help was bedrest and drinking Boost 3 times a day. This has been researched by Dr. De Lia, who believes that "TTTS patients at mid-pregnancy have severe hypoproteinemia and anemia" and drinking Boost on top of your regular meals may help correct any malnourishment problems.
I began drinking the Boost immediately, however became extremely bloated as I was consuming an extra 800-900 calories a day (I didn't know at this time that you're suppose to sip the drink throughout the day, not consume each can at one sitting). The bedrest was impossible as I was still working, and had my little Emily to look after. Luckily it was a short work week, and we went home to Fredericton for Easter where I was able to relax, and didnt' have to look after Emily as much, because she had her cousins, Alex and Austin around to play with, plus most of my family to help out.

I didn't talk much about what I knew about TTTS with my family or friends, because I wanted to enjoy my weekend, and not spend the entire time crying. Poor Keith had to deal with that. Every night we'd spend some time talking about it, and really you can't talk about it without getting upset. He was also good at nights in taking most of the responsability looking after Emily.
It was a very emotional, and LONG week waiting for that next ultrasound to find out how my girls were doing. When you fear the health of your babies...your perspective on life can change very quickly. I didn't care about anything other then growing these babies into healthy little girls. Any issues on money were soon forgotten as my life now had a new focus.

Identical twin girls (March 17/08)

Saint Patty's Day is suppose to be a very festive and cheerful day, however, not so much for us. We had our U/S in the Fetal Assessment and Treatment Unit, which is where high risk pregnancy's are looked after.

The resident started the U/S going over the anatomy of the babies. Lynne came in shortly after, and I could tell she had some concerns but was trying not to overeact initially.
There was definetly only one placenta. With identical twins, if the egg seperates between conception and day 4, the babies have their own placenta. It the egg seperates between day 4-8 after conception then the babies share the same placenta, and in our case they have their own amniotic sacs, however it is possible to also share the same amniotic sac. It was also very obvious from the U/S that the babies were girls!

As she went over the U/S she told us she was concerned about the difference in amniotic fluid around Baby A and Baby B, and told us that she thought the twins were showing early signs of Twin twin transfusion syndrome (TTTS). This is a disease where there is unequal sharing of the blood and nutrients between the two babies, and can occur in 10% of identical twins. The donor baby gives too much blood to the recipient baby, which is bad for both babies. The recipient who is getting more blood and nutrients, grows more, but also has to work extra hard with all the blood, and is at risk for congestive heart failure. Because it has more blood and nutrients, it's bladder is also working harder and urinating more therefore producting more amniotic fluid. The donor baby obviously is not growing as much, and if not urinating as much, then has little fluid around it to develop. That being said, the main things to look for in this disease, is the amount of amniotic fluid surrounding each baby, the discrepancy in size between the two babies, and both the bladders and hearts. Both bladders and hearts looked good, and there was a 20% difference in size between the babies, but a large difference in the amniotic fluid. However, Baby B (the donor), had enough fluid surrounding her for development. Lynne explained to us that with TTTS it is very unpredictable, and that within a couple days to a week, things could even out, stay the same or get much worse, therefore weekly U/S were necessary to monitor the babies.

She briefly went over to treatment options, but said we weren't at the stage requiring them yet. Amnioreduction is the first option, which is similar to amniocentesis, but used as treatment rather then assessment. They can drain fluid from the bigger baby's sac in hope that the pressure change will even things out between the two babies. Some people do this once and everything is fine, other people need this draining a couple times a week. The second treatment is a type of laser surgery where the abnormal vessels between the two babies are disconnected in hope of correcting the main problem which is an unequal sharing of the blood and nutrients.

This was a lot of information to take in.

From the beginning...

I decided to start a blog...since I have so much time on my hands these days, and also to keep our family and friends updated with my pregnancy without rewriting the same thing over and over again, which becomes very draining.

First of all... a little background information. For anyone who doesn't know, I'm pregnant again! We found out in December, and I made an appointment to see my family doctor. I wanted to see the same obstetrician I had for Emily, Dr. M at the IWK, so I was referred immediately, however because she is so busy I didn't have my first appointment until March 12, when I was 16.5 weeks along.

The first trimester was very normal (as normal as being pregnant can be), however more difficult then carrying Emily. I was nauseous everyday allday and was put on Diclectin to help, which it did, but made me extremely fatigued. I ate constantly. I couldn't get enough of egg and bacon mcmuffins at work in the morning, and was eating more then the men in my staffroom at lunch. I also had more dizzy spells, and the occasional cramping (both of which I went to see a doctor about, but they were not concerned). By 13 weeks I weaned myself off the Diclectin, and felt better, but still tired...but who isn't tired their second pregnancy when you have a 15 month old to look after. Normally a heart beat can be heard around 12-14 weeks, so luckily I worked on a great nursing floor, with great nurses who found a heartbeat for me with the Doppler before waiting to see my OB, which felt like forever.

March 12th we finally got to see Dr M, who really is the most wonderful person. With Emily she made me feel great everytime I went to see her. She told me I was a "star" everyday (which apparently she tells most patients, but who cares, it feels good) , and her cheery, outgoing personality was so encouraging. I always spent more time in the waiting area for appointments, but I soon learned why. She spends the time with her patients, you don't feel rushed, and you can ask her anything. I often wondered how she would be in a crisis situation, and now I know. She is very honest, and upfront, and gives lots of hugs and support when need be (which is almost every day I see her).

We answered all the routine questions with the nurse, had my vitals checked and listened for the heartbeat. The nurse didn't seem to concerned at this point that I had gained 20lbs and I was only 16.5 weeks pregnant...some people just really enjoy their food. It wasn't until she measured my fundal height, which I believe is from your pelvis to the top of your uterus, where she looked a little surprized. Keith was with me at this appointment, thank goodness. Normally your measurements correspond closely to the week of pregnancy. I was measuring well into the 20's. So casually she suggested that we do a quick ultrasound with Dr M. They gave us several reasons why my fundal height could be off such as a cyst, or being my second pregnancy. But sure enough the ultrasound told no lies, and there were our TWO babies. When two babies are seen, she said they always look for a third, and Keith just about fell off the table.

The emotions that day were uncontrollable, not that I am the best at controlling my emotions on a good day, lol. So we didn't get a lot of information initially, but Dr. M told us based on the U/S (which wasn't a very high tech machine, mainly just to find out if there were more then one baby) that she thought there was only one placenta...therefore identical twins. She booked a more sophisticated U/S for us 5 days later to learn more about the twins. They gave us some time to absorb the information. We were very excited, and shocked, but I think that both of us had the possibility of twins in the back of our minds, with my weight gain, and a family history on both of my Mom's sides of the family. Finances are also something initially thought of, as the cost for two babies seems much more then 1 with 2 cribs needed, a minivan, and everything else in two. But overall a VERY happy day.