Chance is the name we gave our beautiful son. We wanted him to know exactly what he meant to us. He is our chance to become better people, our chance to learn and to grow, our chance at learning how to love unconditionally. This blog is dedicated to our first son. Our hope is that he will read it when he is older and realize just how much he has always meant to us.

Friday, February 18, 2011

28 Weeks down, about 11 Weeks to go!

We have finally hit the 3rd Trimester :) We had our 28 week ultrasound appointment, managed to make it through unscathed for the most part. It's funny how much we were dying to see pictures of our little one before the diagnosis, now we sweat every single ultrasound hoping nothing looks worse then before.

Anyways, Chance was given a much more thorough scan then he usually gets so that pictures could be taken of all of his "problem areas". We will be taking this pictures to our first meeting with the neurosurgeon...still waiting on that phone call. Although each scan is nervewracking, we did still get a good chuckle out of how big he is, a whopping 2 pounds 14 ounces at 28 weeks - almost 3 pounds! The technician mentioned his chubby cheeks and gave us a keepsake picture so we can show our chunky monkey when he gets older!!

His cyst over the opening on his back is measuring closer to 29mm, up from 19mm 4 weeks ago. The whole is more visible at S1-S2, last visit it was S2-S3. His ventricles are now at 17-18mm, up from where they remained stable at 13mm since week 20 :( The doctor also measured his cortical rim, or the area of brain that is being compressed by the ventricles. It measured about 10.5mm. We were told if it gets to 4mm or less they start to worry about too much swelling. Did I mention how much i hate these visits?

I guess i should expect everything to get larger, he is growing pretty good. But at the same time i just wish everything would remain stable...The good news is his body was measuring right on target at 28 weeks. His head was a little smaller, but only 1 week behind instead of 2 like at our last visit.

I freaked myself out so bad looking at "cortical rim sizes" on Google. I'm my pregnancy hormones best friend at this point, i make it easier to get myself emotionally worked up just by Googling anything related to my son's condition. I know it's the worst thing to do, and I know pregnancy is SUPPOSED to be hard when you are carrying an SB baby, but i just can't seem to make myself stop stressing. I worry about his ventricles getting to big, his brain being to compressed, his lesion moving further and further up his back, etc etc. They worry never seems to end as much as I try to be optimistic. I really just want these next 11 weeks to go by quickly so I can see him, I know when he is born and I see his beautiful face I will finally be able to convince myself that he IS going to be ok.

On the up side my sister had her baby today, Chance has a brand new cousin - they will only be 11 weeks apart or so! I'm so happy for my sister and can't wait to meet my nephew. But this is my blog and I use it to vent my feelings, so as terrible of a person as it may make me seem, i can't help being a little jealous. She has two healthy little boys who will never know the pain of back surgery to close up a hole or the pain of a tube being inserted into their skull and passed through to their abdomen to drain fluid. They will never have to worry about shunt replacements. They will never have to feel the embarassment of needing to cath so they can go to the bathroom. Don't get me wrong, i LOVE LOVE LOVE my sister and her family and her two beautiful children, but I can't help wishing that my son could have no worries in his life like her children. I know he is strong and can handle it, he will be no less loved for his challenges and we will cherish every single thing he does in his life. I just pray to God that he never, ever feels like he is not just as good as every other "normal" child out there.

And now I have to stop because i'm making myself ball.

I love you Chance, i can't wait to hold you in my arms. Stay in there and keep cooking though, you aren't ready for the big world yet - only 11 more weeks to go baby!

Monday, February 7, 2011

24 Weeks - Getting Closer

We are scheduled with our regular OB/GYN and our new Perinatologist once a month. I've heard in the second trimester we will see them twice a month, but i haven't spoken to either about that yet so we will see.

We just finished our round of appointments at 24 weeks. As usual it wasn't uneventful. I ended up in labor and delivery because of more, yes more, kidney stones. My son blessed me with no mornin sickness but the mischevious child decided to send some kidney stones my way - i guess since I won't feel the pain of childbirth he didn't want me to feel left out. Anyways, i was getting cramps so i went in to be safe. While i was laying there i had some Braxton Hicks, nothing out of the ordinary, and was sent home after being tested to make sure I was not in preterm labor.
A couple days later i had my two doctor's appointments. My OB/GYN was pretty quick. I was given the infamous bottle of liquid sugar and told to come back later in the week for my first glucose test. I went about a week later and everything came back normal. One sigh of relief.
At my perinatologist appointments i get detailed ultrasounds. This was my first appointment since what i have labeled the "real" diagnosis, not the one i was given at my OB/GYN. I was nervous, Brent (my husband) was nervous. We didn't know what to expect. They measured my little one to make sure he is on track. He had a tinier head than body. Specifically his BPD (biparietal diameter) was measuring 22 weeks and his head circumference was measuring a few days behind. He had always measured right on the dot - i was scared. Everything scares me now.  She measured his abdominal circumference, he's a chunker! He measured about a week ahead, i breathed a little easier, at least his body growth was on track. My sweet son weighed a normal 1 pound 7 ounces. The tech couldn't get him to flip in order to see his spine so she left it for my doctor to do. As i sat with my husband staring at some more printouts, this time two profile pics, i rocked back and forth to get him to move - i wanted to make sure our doctor could see his spine.
When the doctor got a look at his spine it was still there, the lesion. I guess part of me was hoping it would disappear, no such luck. It measured 19mm, which i'm not sure is good or bad. I looked at my ruler later and it didn't seem so large. The doctor measured his ventricles - 12 and 13mm. I guess one had gotten larger and one had stayed the same size? He told me that a shunt would be needed as soon as the ventricles reached 20mm. I got excited, his weren't even close, maybe he wouldn't need a shunt? The doctor wasn't so optimistic, he fully expects them to get larger, and even if they are not 20mm by birth, after the back surgery the ventricles almost always increase in size. I still have hope though, maybe we can get away with one less surgery, i will pray.

We left the doctor's slightly relieved, nothing crazy had happened. I was still worried about his head size so I Googled. It's become something of a sick habit for me lately.
Apparently a small BPD is normal for Spina Bifida babies. I feel a little better.

4 more weeks until our next visit, counting them down.

Sunday, February 6, 2011

The Beginning

It's been a little while since we got the news, but it seems I'm just now comfortable enough to let the world know.
I got pregnant in August of 2010 - i was 21 at the time, almost 22. I was living with my boyfriend of 6 years in our first apartment. We weren't trying, and shock was pretty much the only thing we felt for days. We were in the process of buying a house, how was this going to change that? What would my parents think of me getting pregnant before marriage? What would my boss think? Could we afford it? Not that it made any difference, termination was never an option, I'm about as "pro-life" as they come, a child is a child is a child, and i am no murderer. Harsh words for some people, but it's what I believe and I'm not ashamed.
It took maybe a month or so for us to start getting excited. We were going to have a baby! We decided to get married, it wasn't the most romantic engagement, but we had been together so long and we knew we wanted to get married, this was just the icing on the cake. We started planning the wedding and letting family know about the baby - i was worried about letting the cat out of the bag so soon but we were so excited. I ended up at my first prenatal appointment 5 days early in excruciating pain. They were thinking ectopic pregnancy so I got my first ultrasound before 8 weeks, and what a perfect picture it was! It was love at first sight, despite the labor pain equivalent i was in at the moment. Well it wasn't ectopic pregnancy obviously, but what it was was more painful - kidney stone.
At 12 weeks i had another ultrasound, this one was for our "FirstScreen". They measured the nuchal translucency and used the measurement along with my blood sample to give me a picture on where my baby stood in his chances for having a chromosome disorder. We were told our nuchal measurement was 1.2mm, my doctor informed me that if he were to pick a perfect measurement for a baby's nuchal translucency, it would be 1.2mm. We were ecstatic, our baby was the picture of perfect health. We weren't given the results of the FirstScreen until a few visits later, but found out the chances of our baby having a chromosome disorder was less than 1 in 10,000 - perfect.
We got married on November 27, 2010. I was 22 and my husband was 23. I was about 16.5 weeks pregnant. Everyone was so nice and all of our family told us how excited they were about the baby. We were truly blessed to have everyone's support. Our wedding was beautiful, not without a few problems - but isn't that good luck? I married my best friend, first love and father of my child that day - i couldn't have asked for anything more.
We counted down the days till our 20 week appointment. For us it was actually 19 weeks and 2 days. We couldn't WAIT to find out the gender. I knew it was a girl, it was a gut feeling I had the entire pregnancy, everyone told me it was a girl - i just knew it.  My husband said it was a boy, of course! Our hearts were racing as we waited for the ultrasound tech to put the wand on my belly. Our baby's heart was racing too, we could see it clear as day going strong! The first pictures we viewed were 3D. We saw a beautiful face complete with cute button nose, perfect eyes and lips. Further down we saw a suspicious looking body part that even I knew would be very interesting to find on a baby girl. Our ultrasound tech pointed to the part and said something along the lines of "I think we know what this means, did you want to find out the sex?". We nodded our heads vigorously, but we already knew - i was carrying our son! We chuckled at her comments on how our little boy was stubborn and she was having  hard time getting measurements of his head, must take after his Daddy! She got all of the measurments she needed besides the head, it was just too low. She ended up going in with the transvaginal wand to get a better look at his head. The atmosphere in the room changed at that point. I had no idea what she was seeing, and I didn't really care, but looking back now I know I should have been worried. She finished, said she would give the reports to the doctor and come get us from the waiting room. We admired all of our beautiful print outs while we waited - for an unusually long time. Finally the nurse came and got us. We waited in the exam room for the doctor who never came - he was in surgery that day. We ended up with his nurse. She came in, greeted us, and proceeded to explain that something was wrong on our ultrasound. Something was "not right" with our son. I entered into a kind of dream world at that point, i knew i would wake up any moment. I knew she would laugh and say "just kidding"! She didn't. In the most dramatic and over the top manner she told us that it appeared that half of our son's brain was filled with fluid and therefore had not developed properly and looked like the wrong shape on the ultrasound. She called the condition "hydrocephalus" and said our son may not make it to full term. She had set us up with a Maternal Fetal doctor across the street, and she walked us over, both of us crying our eyes out.
The ultrasound tech at the new doctor's office was going to take another scan. She asked us if we wanted the screen off so we didn't see him. I couldn't believe it. "No, i want to see" I told her in between sobs. What could be so terrible that I wouldn't want to see? My hope was draining away from my body. She took some 3D scans and kept commenting on his cute fingers, it sure didn't seem to me like she was talking about a baby with a death sentence. Out of this visit I got what became my favorite picture of my son to date. He couldn't have looked more perfect.
The doctor came in. The very young doctor. He explained while he looked at the pictures the tech had taken, that our son had a "neural tube defect". This clicked in my mind - i remember a screening test i had taken at 16 weeks, the AFP test, they told me my results were normal and this meant my son didn't have what they called a "neural tube defect". I guess they were wrong. I knew nothing about these defects, but he explained that they were the most common defects in babies. It meant he had a lesion somewhere on his spine that had not closed properly. He showed me a picture, but for the life of me i couldn't see what he was talking about. He explained that the "hydrocephalus" was common in babies with neural tube defects. Then I was asked if I had any questions. I could barely breathe at this point let alone formulate a coherent thought - my mother saved me. She had arrived mid second ultrasound after I had called her balling. She asked, "is it something like Spina Bifida?" too which he replied "that's exactly what it is". They could have been talking Swahili for all i understood. I was scheduled for a follow up with him two weeks later and an amnio. I never went.

After days of crying, after making phone calls to explain what we didn't understand ourselves, we were barely functioning. I made a second opinion ultrasound appointment with a Perinatologist that my doctor recommended. I got an appointment 5 days after the initial ultrasound, at exactly 20 weeks pregnant. This doctor literally saved me. My mom sat with me during yet another ultrasound scan, my husband was unable to get off work. The technician cheerfully measured him and said all was perfect. I could feel myself slowly coming out of the abyss i had been drowning in, and it got better. As i sat staring stupidly at the print out she had given me of his little foot, the doctor came in. He started moving the wand around on my belly and matter of factly pointed out the lesion, which was actually a fluid filled cyst on his lower back and BOY was it obvious! I couldn't believe i had missed it at the other ultrasound. He then measured my son's lateral ventricles in his brain, the "undeveloped brain" according to my OB/GYN nurse. Yes they were dilated he said, about 11mm on one side and 13 on the other - anything over 10 he said is too much. Then he proceeded to actually explain to me what all of this mumbo-jumbo meant. Would my son be retarded? Not likely, hydrocephalus is common in Spina Bifida babies and most have perfectly normal functioning brains. His legion is low, sacral area. Is this good news? Yes, the lower the better - the more likely he will be able to move without assistance. Will he have any other problems? Sure, most commonly bowel/bladder incontinence because of where the damaged nerves are. Should I get an amnio? I am against most things that put my babies life at risk. ABSOLUTELY not he said. He is against any amnio that puts a baby's life at risk when the baby is otherwise perfectly healthy. He is perfectly healthy??!!! Of course, other than the lesion and the extra fluid in his ventricles, you have a perfect baby boy.

I wanted to kiss this man. He had given me back my reason for living. He had given me back my son. Once again I knew I would be holding my miracle in my arms in just a few short weeks. That is a gift that you can't put a price on.

We decided on a baby name a couple days later, Chance.