Adventures by Avery: May 2010

I pee on a stick and I think the two minute wait for results take forever. It comes back positive. WE ARE PREGNANT!!! A huge smile washes over my face, my stomach does flip flops and I wonder how I will tell Josh. I order a ‘Big Sister to Bee’ t-shirt for Avery, thinking it would take a day or two to get delivered. I’m shocked when the delivery estimation is 2 weeks. No way I can wait that long to tell Josh. That night I tell him I ordered a new shirt for Avery and show it to him online. He’s surprised and says, already?

Only a few weeks later I have some spotting. I didn’t have any with Avery so it was a bit concerning to me. I call the GP and they scheduled me in later that afternoon. The GP asks a few questions, tells me it’s fairly normal and then gives me paperwork on how to contact the Early Pregnancy Unit at the Royal Free Hospital. When I get home I call and they schedule me in a few days later for an ultrasound. I’m only 4 weeks pregnant at the first appointment and the ultrasound doesn’t even confirm pregnancy. They take blood and ask me to come back in two days to take another round of blood. After the second round of blood my hcg numbers come back more than doubled, a great sign. They have me come in again 2 days later for a third blood draw. Again the numbers come back more than doubled. I’m feeling pretty good about things at this point. They schedule me in for another ultrasound in eight days. It’s finally time for the ultrasound. I’m excited and a little nervous. The scan shows the yolk sack and gestational sack but no fetal pole or heartbeat. I’m deflated but another ultrasound is scheduled two weeks later. Two weeks takes forever and I keep wondering if I am really pregnant. Finally it’s time for the ultrasound and yippee! Heartbeat!! All is great and the next step is the traditional 12 week ultrasound and meeting with my midwife. I’m nervous about the whole pregnancy and delivery process in the UK but I’m willing to give it a try.

I’m so excited to go in for the 12 week ultrasound. Josh isn’t able to go with us but I have Avery at my side. The doctor starts the ultrasound and he shows me the heart beating. What an amazing sight! Almost immediately he comments about fluid being around the back of baby’s head. He checks a few things other things. I question the fluid since he seemed to skip onto other things. He brushes me off a little bit and then goes back to the fluid. The nucheal translucency measures 5.4mm, the top end of normal is 2.5-3.0mm. The doctor then mumbles something about having further testing done. I question the testing, he tells me they recommend a CVS test where they insert a needle through my abdomen and sample the placenta. The results will tell us if baby has any chromosomal abnormalities. He then shows me that the fluid continues all the way down the baby’s spine. The ultrasound is over before I know it and I don’t even get a sonogram picture that I paid for. At this point I’m shuffled into an office to speak with the midwife on staff. I’m doing ok at this point. I know baby has some things we might need to look into but I saw and heard the heartbeat and I’m ok. The midwife then tells me that I’ve received very bad news today. She tells me that some baby’s with fluid like this turn out to be healthy but the majority do not. She continues telling me such negative things until I finally break down in tears. I swear she was not going to be satisfied until I cried. She schedules the CVS test for me the following week and asks if I have any more questions. I’m so overwhelmed I have nothing to ask. I head home in tears. The next step is breaking the news to Josh.

I immediately start researching nucheal measurements and CVS testing. I felt kind of forced into the CVS test while at the hospital. I find out that there is a risk of miscarriage with the test. I also read about the possible causes of the high NT measurement. After researching both topics I find it amazing how little the doctor and midwife told me. We do decide to go through with the CVS test. We already have so many unknowns with the whole medical process in the UK, we are far from family and the answers will allow us to plan appropriately for the future.

It’s finally the day of the CVS test. We wait an hour because the doctor is called to the delivery ward. The test starts with an ultrasound. There’s that amazing heartbeat again! The doctor shows the fluid to Josh and takes a measurement. He measures 4.2mm. There is no way to know if the amount of fluid has actually decreased or if the measurement is different due to view of the sonogram or the just having a different doctor. Baby has moved from lower left to my upper right since the last sonogram. The midwife tells the doctor that my blood test results came back and the probability for Down Syndrome is 1/15. This is news to Josh and I as well, we had not been given the results yet. It’s now time to start the procedure. There are three doctors and the midwife in the room. The first two shots are a local anesthetic in my abdomen. Josh rests his hand on my shoulder and tears fill my eyes. I feel some discomfort as the needle is inserted but the thing that bothered me most was just the thought of having a needle inserted through my abdomen toward baby. Next I hear some squirting noises. I open my eyes to see the midwife and doctor examining a vile of fluid. The doctor is worried he didn’t get a good enough sample so in goes another needle. The test is done and the midwife moves us to a bed to rest before leaving. It’s Wednesday and the initial results are due back Friday or Monday, full results take 2 weeks.

I spend Friday with phone in hand waiting and willing it to ring. No ringing. So, then it’s the wait over the weekend. Monday morning arrives, Josh heads into work and suddenly my phone rings. I dash for it knowing I don’t want to miss any calls. It’s the midwife, she tells me that she has bad news and wants to know when I can come in to see her. I ask if she can tell me the initial results on the phone. She then tells me that the baby’s chromosomes show Down Syndrome. I’m shocked, I knew it was a possibility but I never though I would hear those words about our baby. I call Josh, catching him just as he got off the tube for work. He is shocked by the news and turns around to take the tube home again. We go into the hospital to meet with the midwife. Again, she had very little information for us. She doesn’t even mention that it’s a girl!! I read that on the chromosome results sheet. We asked a few questions about risks during pregnancy, miscarriage risks and further issues with baby. Her answers were not very helpful. The termination rate after Down Syndrome has been diagnosed in the UK is over 90%. Therefore, I don’t think that the medical staff here is used to guiding families. The next step is to wait an additional 10 days to get the rest of the chromosome results and to schedule a fetal heart scan. We were given a booklet on living with DS. The walk home was very quiet.

The next several days were very difficult. So much to sink in, so many unanswered questions, so many worries. Why us? Are we strong enough to handle this?

Late Friday afternoon I got a call from the Fetal Heart wing of St. Thomas’s Children’s Hospital that we had been referred to for the fetal heart scan. We were scheduled a scan for Monday morning, much sooner than I was expecting to get in. This call stirred up lots of emotions for me. I was suddenly very anxious, nervous and scared. 50% of DS babies have heart problems. Will she have heart problems too? And if so, how serious will they be?

Monday morning and we set off to the hospital which is located across the Thames from Westminster. I’m immediately impressed. The facility is new, modern and the staff are much more personable and knowledgeable. Two technicians go over exactly what is going to be done, what they are looking for and they review the anatomy of the heart with us. After they record all the views they need they take the information to a consultant to review it. The consultant comes in and wants to see one additional view. Finally we hear the news we were hoping for. It is very early at this stage and the heart is only the size of one piece of long grain rice but the initial scan shows that the heart is well formed and there are no major malformations. Such a relief. Another scan is scheduled for 22 weeks to check growth and development.

That same morning the midwife called to report that the rest of the chromosome testing came back normal. Again, great news. A 16 weeks scan is scheduled to take a look at all of baby.

It’s time for the 16 week scan and I go in with a positive attitude. The doctor doesn’t tell us what he is doing or what he is looking at. Baby is very active and had her hands up by her face and moving around. We even got to see some awesome shots of her feet, legs and bum in 4D, very cool. The fluid on the back of her head and top of her back is the same size. Josh asked the doctor if the fluid would reduce during pregnancy. The technician’s response was, and I quote “You know, your baby is not normal.” Seriously? My jaw was on the floor, I couldn’t believe how he was handling the conversation. The answer to the question is that we don’t know if baby will reduce the fluid on her own or if she will be born with extra skin on the neck/back area. There were several times that the doctors and midwives discussed things in whisper without telling us anything. Awful. I asked at the end of the scan if baby has a nasal bone, knowing that the absence of the nasal bone is a marker for DS. Doctors answer: ‘Well you know that the absence of the nasal bone is a marker for DS and your baby has DS’. Well duh, my baby has DS, can you please just tell me if she has a nasal bone or not? Thanks. Although the physical results today were as good as we could want today’s appointment was very tough. Feeling deflated.

The past few days up to this point have brought us some good news and some of our questions have been answered but there are still so many worries. How will this new little life affect Avery? I pray daily that God gives us the strength to carry on. I know we are blessed to be given this little life but am I really the best mom for her? Will we make the best decisions for her, for us, for Avery? I want to be that carefree pregnant lady with a cute belly. I don’t think I will ever be carefree but I am beginning to see the bigger picture and I am starting to put a smile on my face. I know we have family and friends praying for us and supporting us every step of the way.

Our second full day in Egypt and we were up bright and early to start our trek to Sharm El Sheikh. No complaints from me though, I had clean clothes and all my stuff, amazing what small things can do. The drive was estimated to take 6 hours. We stopped 2 times for bathroom breaks. We were much quicker than our driver and guide who used the time for tea and cigarettes. We went under the Suez Canal and saw all the ships lined up to go through the canal.

Other than that we saw lots of desert and semi completed resorts along the way.

During our drive we made at least ten stops at checkpoints. At each checkpoint there were police with machine guns, sometimes sitting in a stand, sometimes sitting in the back of a truck. Our driver would hand the men a piece of paper and we would continue on. Once we arrived in Sharm our guide explained that on each paper was all of our information and it was basically leaving a paper trail to check in and out of each area we traveled through.

Mosque in Sharm.

7.5 hours later we finally arrived. This is the one aspect of the trip that Josh and I said we would change. We would either take a flight or we would have liked to go to Luxor for the day and take the overnight train.

The hotel was adequate and pretty much what I expected from the reviews. Lets put it this way, they walls had blood spots on them from squashing mosquitos but the pool and beaches were nice.

Dinner our first night at an Indian restaurant in our hotel. The food was amazing.

Josh, Nathan and Mandy went scuba diving on Saturday at one of the top ten places to dive in the world, Shark and Yolanda Reef in the Red Sea. Josh said the underwater life was amazing and he would definitely go back.

Before the trip we got an Ikelight housing for my point and shoot camera.

Easter Sunday we headed to the coral beach. Our hotel wasn't directly on the beach but there were buses to the coral beach and the sandy beach.

After snorkeling off the dock at our hotel we decided to rent a small speed boat with guide/driver for two hours to go snorkeling. Too bad we weren't thinking and didn't bring the camera housing. The snorkeling was great!

That night we had plans for a Bedouin Dinner and camel ride in the desert. We were greeted with naturally sweet tea and brought into the Bedouin party or social area.

Then it was off to ride camels.

We even saw this man charming snakes!

Then we climbed a small cliff for sunset.

Amazing views and an amazing sunset.

Making bread for dinner.

We stopped by the Old Market on our way back from the desert. There were spices, trinkets, t-shirts and pretty much anything you could think of. Each shop owner had a deal for us and were ready to bargain.