Saturday, July 9, 2011

What you missed while I was MIA

So, for those that may have noticed, Adam and I have been fairly withdrawn the past few weeks. Our lives have forever changed during that time - the roughest of my life. We needed time to process and understand what is going on before sharing with all of our family and friends. It's a bit of a long story, so I guess I'll just start from the beginning.

June 22, 2011- 29 weeks pregnant

The previous week, my kasier midwife had referred me for an ultrasound as I had been measuring about 5 weeks ahead of my projected due date. Going into our appointment, the worst thing we imagined was possibly having fibroids or a very large baby. We met with out very friendly ultrasound technician and got started with the ultrasound. After about 10 minutes the friendly technician got very quiet. For the next 1.5 hours he took a very indepth ultrasound, left the room, retook another ultrasound, brought a different technician back to redo yet another image. Once the ultrasound was done we were told to wait for a few minutes while they review the results. A good 40 minutes later, the ultrasound doctor came in and told us that they were transferring us over to labor and delivery. She said my cervix was dilated and I seemed to be having contractions and needed to send me up for observation.
Once up in labor and delivery, I was hooked up to a fetal heart tones monitor and contraction monitor while I waited for further word from the doctor on duty. The nurse who was assigned to me kept asking me "Don't you feel that?" and I honestly replied that I didn't feel anything other than the severe hip and back pain I had been experiencing the past few weeks. She showed me the screen she was looking at and it looks like a stormy ocean! Huge waves and ripples everywhere! I guess I had been having contractions, though never really knew it. They described it more as severe irritation of the uterus as I did not have defined contractions, with  break between, just constant larger and smaller muscle movements, like a spasm in my uterus. I had felt tightness the past few weeks, but had assumed it was just ligament pain or my abdominal muscles reacting to my VERY large belly. I never felt anything coming and going, as I imagined contractions would feel.

The doctor on duty along with a nurse came in to tell us the news. Baby Aiden had a condition with his stomach called duodenal atresia . Basically, the part of his intestine didnt form correctly or is somehow blocked. In babies with complete digestive tracts, the baby swallows the amniotic fluid, passes through his digestive tract and is remove from the uterus. Because baby Aiden has a blockage in his tract, the amniotic fluid had build up to extremely high levels, causing me to measure big (and look like I was carrying twins). I was told the maximum of what they would call normal was 15, I was at 33, more than double the maximum. This condition is called polyhydramnios. We were also told that this type of defect is highly correlated with down syndrome, with about a 30-50% chance of our baby having down syndrome. While the blockage is not adversely affecting baby Aiden now, he will require major surgery soon after he is born, to restore a working intestine. Until he has the surgery, he will not be able to eat or drink anything. He will need to go to the NICU, where his belly will be drained of fluid, and he will be fed intravenously.

The following week

While we were kept very busy with appointments, we got more and more scared. We now had to worry about having a very premature baby, who would need major surgery immediately after he was born, and will spend at least 1 month in the NICU, and has a high risk of having down syndrome. I shut myself off from the world. I felt guilty for not being able to control my babies health, sad for the loss of my low-risk home birth (now will need to birth across town at a high risk hospital with a NICU), and very angry that it feels like I am the only one having a complicated birth, and on my first baby! I tried so hard to do everything "right" only to feel like everything is going "wrong".

During the following week I was started on a medication to slow contractions,  spent nearly every day in the hospital or doctors office to monitor my cervix and contractions, and met with a perinatologist (high risk pregnancy OBGYN). For the first 2 days, the contractions did slow down a bit with the medication, but was still put on complete bed rest. The doctor even told me to stay hydrated, but not TOO hydrated so as not to have to get up too often to use the restroom. With that much fluid, it was next to impossible to stay on bedrest. My hips and back felt like they were about to shatter under the pressure and my bladder felt like the size of a shot glass! I couldn't sit for longer than 10 minutes without feeling like I was going to scream from the pain. Sleep was impossible, other than the brief naps I was able to take sleeping sitting up in the foam nursing chair I had next to my bed. Laying down on my size was the WORST! 

On Sunday night, while putting together  a burrito for dinner I started to feel so tight in my stomach that it was hard to stand up straight. I rested to see if it would go away, but it only seemed to get worse. Adam rushed me over to Kaiser L&D, where, again, got hooked up to the contraction monitor and was having fairly major contractions, even with the medication. They decided to keep my overnight and put me on a loading dose of medication to see if they could get the contractions under control. It was my first time ever being admitted to the hospital, but at least Kaiser had really nice rooms with a tv and a place for Adam to sleep on a recliner. They ended up putting me on the maximum safe dose of medication before my contractions were somewhat under control enough to send me home in the morning.

The next day (Tuesday) we were told to return to L&D to make sure my contractions were still under control. Well, hooked me up the monitor and they were not AND they ran a FFN test. If it had come back negative I would have had a low chance of delivering in the next two weeks (I was 29 weeks at the time). It came back positive, meaning I had a high chance of delivering in the next two weeks. They decided to immediately e transfer me over the St. Vincents, the high risk hospital (which will also be the . I was told to expect to stay there for at least the next few days while they decided if they were going to do an amnio reduction.After another overnight stay in the hospital, they did an amnio reduction in the morning. The reduction was no walk in the park. While the initial pain was no worse that what an amniocentisis would be, as the fluid started to drain, I started having severe contraction, nausea and pain due to the rapid shrinking of my uterus. By the time the procedure was done, they had drained over 2 LITERS of excess fluid from my uterus. This brough me down to an amiotic fluid index (AFI) of 22. Still very high, but took a good amount of pressure of my uterus and slowed my contractions to the point where I was able to go home.

 Since then my contractions have slowed down to the point where I am off complete bed rest and able to just "take it real easy". When they did the amnio reduction, they took several vials of fluid to be tested to see if Aiden definitively has down syndrome. We were told that it could take up to 2-3 weeks before the results come back.

July 7th - 31 weeks

The Diagnosis

Today we had our weekly appointment with the perinatologist. While we were not expecting the results for at least another 2 weeks, our doctor told us that baby Aiden does indeed have Down Syndrome. 

The next few days were incredibly difficult for the two of us. While we had felt we had mentally prepared for the diagnosis, hearing a definitive diagnosis was very hard for us. I went through a lot of emotions wondering whether I did something wrong, whether this was something we could handle and a lot of feeling of hopelessness and despair about why we were so "unlucky". We had done the first trimester screening and came back with a 1:1000 chance of having a child with down syndrome. Our 20 week ultrasound came back with perfect results! Still, we felt like maybe we should have "known" better and pushed for further first trimester testing instead of assuming it would not happen to us.
At the time we had the first trimester screening, we had been asked if we would like further testing. Adam and I discussed it, and decided that Down Syndrome was not something that would change our mind about continuing the pregnancy. Little did we know how important that conversation would be. 

I am so glad we didn't pursue further genetic testing. At the time, I was already receiving a lot of pressure from the genetic testing department and received almost daily phone calls reminding me to make an appointment for the nuchal translucency ultrasound to screen for Down Syndrome. I was told it was routine for anyone who had a greater than 1:20,000 chance of having a child with Down Syndrome. I was reminded... repeatedly and with great urgency.. that my time to terminate was coming to an end. I got very upset and told them to WRITE IT DOWN IN MY CHART that I do not want to receive another phone call about genetic screening. We do not care if our child has down syndrome. If I had caved to the pressure and they had detected a high probability of having a child with down syndrome, I cannot say how I would have felt. I don't think I would have the heart to terminate the pregnancy, but I am not sure how I would mentally cope with the pressure from medical professionals to terminate.

Through all the sorrow and dispare, Adam and I did what we do best, educate ourselves. We read through the book "Babies with Down Syndrome: A New Parents Guide", connected with a local chapter of the DS association, and LOTS of google searching on blogs and forums to connect with other parents who have had a child diagnosed with down syndrome. And cried some more.

July 9- 31 weeks

During this time Adam and I stuck together. While each of experienced our grief differently, we talked each other through the hard times until we came to a conclusion.


Nothing has changed to make us love him any less. He has always had down syndrome, we just didnt know it yet. And really, what better parents than us (some tooting of our own horn is needed here). Baby Aiden will be born to two loving parents who work from home full time and will ALWAYS be available to give him unlimited love and attention. I have 7 years of experience working with children with autism using behavior therapy, worked for years in a special eduction classroom, worked as a adaptive PE assistance (traveled school to school providing amazing games and activities that incorporated both typcial and special needs children). His grandma (my mom, Jeanne) worked for 10 years in a special education classroom, and helped a lot of kids with DS. Like our doctor said, "It sounds like baby chose you well."

In the mean time, our focus is on having our little guy the best opportunity to be a healthy little boy.
He still has a difficult and dangerous journey ahead of him. While my amniotic fluid is rapid building up, causing the pain, restlessness, and contraction to increase with each passing day, our goal is to make it to at least 34 weeks (just another 2.5 weeks to go!). Im mentally preparing myself to eventually return to bed and rest and for a likely c-section, as the baby is consistently breech, which is common as he has just too big of a "swimming pool" to move around in and has yet to have been in a heads down position. We are trying to keep on the positive, though we are human and have our moments. We have decided we have to be strong and positive and make sure this little guy knows he is loved and wanted.

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