Rollercoaster

(Originally posted on 11/27/12)

Growing up I found that rollercoasters weren’t really my thing.  Most of the time they made me sick but sometimes I would pass out on them too.  That was fun…

Well I can say now that I would rather go on 1,000 real rollercoasters a day than be on this emotional rollercoaster on which I now find myself.

I am not complaining, just stating the fact.  I strongly believe that God is watching out for Casey and I and that this is part of his plan for us.  I love my little Elliot and would not trade him for the world.

That being said let’s hop on the coaster and fill you all in on the ride we took the past week or so.

Last Monday we had our first growth ultrasound since the diagnosis.  (Every three to four weeks they do an ultrasound to see how Elliot is growing.)  Casey’s mom came with us and based on the report from the cardiologist we were all in a pretty good mood.

We had a new sonographer this time that was very nice.  Once again I am very grateful that the sonographers at our doctor’s office are allowed to talk to us about what they are or aren’t seeing.  It makes a nerve-racking experience a lot more bearable.

As with every other ultrasound we have had so far Elliot was not in an optimal position for seeing everything we needed to see.  This was the first time I remember that he was not breach, but he was balled up and his back was facing up.

As the ultrasound progressed things got a little quieter and the look of concentration grew on the sonographers face.  She informed us that, while she couldn’t get a great look due to his position, his chin seemed to be small.  She also found something relating to the umbilical cord that she told us she didn’t feel comfortable discussing.

She finished up and went to get the perinatal/ultrasound doctor.  The mood was slightly diminished but not terribly uncomfortable.  It took her a while to go over the pictures with the doctor but Doctor Wolfson was soon in our room.

He started out by basically doing a brand new ultrasound.  He quickly confirmed everything that the sonographer told us and then spent a lot of time looking at the umbilical cord with her.  As they did so they let us know that they were only seeing two vessels in the cord. (Most babies have three, two arteries and one vein.  Elliot has just one of each. )

The other thing they were concerned about was that the vein that goes through the liver was curling around it.  Neither the doctor nor sonographer was 100% sure what that meant.

After taking a deeper look at that the doctor went over everything that they had detected in the ultrasound, which I will break down in a numbered list.

1. They were reasonably confident that the Elliot has a condition called micrognathia, which in relatable terms is a small chin.  This, in itself, is not normally a bad thing, but in this case he told us that it could be related to some sort of chromosomal abnormality that the Harmony test would not have picked up.
2. Elliot is really, really small and not proportionally small either.  His head was two weeks behind, his arms and legs were three weeks behind and his torso was five weeks behind.  This also is a possible indicator of a chromosomal abnormality.
3. Elliot’s umbilical cord is a two-vessel cord.  This is not entirely uncommon among babies.  In general, it usually results in smaller babies, which means it might be the cause of Elliot’s size.  At the same time though it also could hint at an underlying chromosomal issue. (Three for three for those of you keeping track.)
4. The doctor also was concerned about the liver possibly being in the chest cavity.

Talk about a blow.

The doctor made sure we knew that Elliot was not in an optimal position to be 100% certain about the micrognathia.  He also wanted us to get a second opinion from another ultrasound doctor in the practice regarding the umbilical cord and liver.

I must digress for a moment to express my gratitude to our doctors for their sympathy, and candidness during this process.  Doctor Wolfson prefers to take an optimistic approach to these situations, which is so helpful.  He also stressed that it is still early and we don’t really know what course this is going to take so we should not put all our eggs in any specific emotional basket. (My words not his, but it is the message he conveyed to us.)

Back to the appointment…

We still had to meet with the nurse counselor (my title for her, not sure of her exact title).  She stressed the importance of optimism and positive thinking.  She encouraged us to be strong and to enjoy the upcoming holiday time with family and friends.  She was helpful and will be the one going through the birthing classes with us that will be tailored to Elliot’s specific situation.

We set up our second opinion for today and the appointment was finished.

We left and were pretty devastated.  I was tasked with writing the blog about the appointment but every time I tried I would break down.  Sleep has been a fickle friend.  Much like my youthful experiences with rollercoasters this latest ride made me sick.  While I didn’t pass out, I might as well have as I spent most of the next day in our dark living room on the couch.

We went to St. George, Utah for Thanksgiving and had a grand old time with family and friends.  Getting away and relaxing was exactly what we needed and we came back Sunday ready to get back to life.

Today’s appointment was much better than last Monday’s.  We visited the downtown office of our perinatal group’s practice for the first time.

The ultrasound cleared up some of the confusion from last week and left us with a much more positive outlook.

1. Elliot was in a slightly better position to get a view of his chin and the doctor didn’t think that it looked like micrognathia.  Once again he wasn’t 100% sure, but he felt fairly confident.
2. Elliot is still small but it appears he has grown since last week, which is a positive sign.
3. The doctor confirmed that Elliot has a two-vessel cord and that the vein was curling around the liver indicates that liver is indeed in the chest cavity.  While this is not optimal he seemed to be confident that the surgery would still have a high chance of success.

The doctor does think that an underlying chromosomal abnormality is a possibility but doesn’t feel that we need to do an amniocentesis at this time.  The risk is great and knowing at this point would not change the care plan for the time being.  There is still a good chance that Elliot is just a small guy.

As with my previous experiences on rollercoasters this ride has not been an enjoyable one.  I am grateful that I have such a strong partner to sit by my side through it all and look forward to the end.

One of the many positives that had come out of the experience is that every one of these visits has increased my love for Elliot and Casey.  They are my whole world now and if I must be on an emotional rollercoaster I wouldn’t want to be on it with anyone else.