Wednesday, March 31, 2010

And then life changes in a matter of minutes


Yesterday afternoon was our "big" ultrasound. Twenty four hours ago I was stopping at a drive through for a very large lime squeeze, in order to satisfy the instructions to arrive "with a very full bladder", and hoping that the sugar would inspire this little one to be active enough to give us a good shot and confirm his gender.

(we cheated and paid for an elective u/s at 15 weeks. We were quite sure it was a boy, but confirmation is always good)

Our ultrasound was done by someone still in training. A cute girl named Barb. Which was ironic considering that all over our previous u/s were done by a sonographer named Brad. Their names were close. Aaron thought it was weird that I noticed.

Anyway, Barb is in her last semester of training, so she let us know that she would do pictures and measurements, and then another u/s tech would come in and look over her work and do more pictures and measurements to make sure everything lined up ok.
So from the beginning we knew it would be a longer than normal u/s experience for us, but that was fine. Who is going to complain about seeing their baby a little longer?

With someone in training, as well as a follow up, we didn't question the fact that it lasted an hour and a half and that there were more measurements and picture than we were used to. When it was all done they let the head Radiologist know that it was done, and took the info to him so he could sign off on the report. They let me know he would transfer it to my midwife, and she should have it by early next week.


I left the hospital with my biggest concern being the fact that this little boy was measuring nearly two full weeks ahead, and wondering if he would continue to grow at that rate. I don't grow big babies, so delivering a big baby is a daunting thought.

I drove home blissfully unaware and stopped to pick up some egg rolls since I hadn't been able to eat much of anything all day (a handful of Lucky Charms and some fruit leather). Chinese food sounded good.

And it was good.
And it was the last bit of good I'd get for a while.

Just minutes after I walked in the door returning home, the phone rang. It was my midwife. She told me that there were concerns with the ultrasound results and that the Radiologist was bringing her the report. She asked if we could meet her back at her office to discuss things instead of doing it over the phone.
I'm not dumb.
The fact that a report that usually finds itself over to your care provider a few days after the u/s was being taken directly to her was not good news. The fact that she wanted to talk in person was even worse. Then she mentioned that the Radiologist had called her before I even left the hospital and wanted to send me directly to her office, but she wasn't even in the office. She was going in to meet us there.

Though the information we have at this point is fairly vague, what we know at this point is that baby has Hydrocephalus. Likely it is from aqueductal stenosis, which is a blockage near the brain stem. As we sat discussing this with the midwife, she apologized that she didn't know more. That since this may become a high risk situation, she obviously does not deal with this regularly. That she couldn't tell us whether this meant that baby would die in utero, or be still born or die shortly after birth, or if it means a term pregnancy with few complications or many, or what it may mean for baby if it lives after birth.

It is a lot to swallow.

The next step for us is further testing; a more detailed ultrasound with a perinatologist, consultation with a high risk obstetrician, and possible amniocentesis. We of course tried to get in for the next u/s with Maternal Fetal Medicine at a larger facility within a day or so....the earliest we can be seen is Wednesday. It will be a long wait.

Of course we have done as much research as possible in the past day. We have seen a lot of best case scenarios, and plenty of worst case scenarios, with much more in between. At this point until we can determine the cause, whether or not is is due to a chromosomal abnormality, which type of hydrocephalus we are dealing with, the extent of the swelling at it's current level and how it changes over the coming weeks, we are facing a whole lot of nothing. We do not know what the coming weeks, months and years may bring. We do not know what this will involve for me, this baby, or the rest of our family.

I am riding a roller coaster of emotions that I've not experienced before. Fear, frustration, sadness, guilt, jealousy, anger, loss....most of all uncertainty. Like I'm standing in front of a cliff, but not knowing how many steps in front of me the edge is, or just how far the fall might be.

We did get a bit of better news later last night; my midwife called to let us know that she had spoken with one of the obstetricians she works with and asked his experience with hydrocephalus babies. He told her that most (though she said that he used the word most "gingerly") babies turn out ok, requiring a shunt shortly after birth and leading a relatively normal life. She said that depending on head growth and fluid levels, there is still at least some chance that I will be able to delivery this baby vaginally and avoid a c-section. For most people that is not big deal, but having had the birth experiences that I have, the thought of having my baby surgically removed from my body is devastating. I know it's a selfish concern at this point and there are people who will hate me for even having had that thought, but at this point I am grasping to retain any sense of normalcy and routine regarding this pregnancy.

I desperately want to drown my emotions in food, but I have no appetite.
I desperately want to go for a long run and just push one foot in front of the other until I can't take another step, but I feel like the life has been sucked out of me. I have no energy.

Most of all I desperately want to have woken up this morning to find that yesterday was just a bad dream. Instead I woke up after a fitful night to the words hydrocephalus and aqueductal stenosis echoing in my head while my baby jumped around seemingly mocking the thoughts running through my head. I've never in my life appreciated so much the movement of a child inside me.

I am a fairly private person when it comes to big things. If I had my way I would lock myself away from the world and not talk to anyone about any of this until I know something more. I fear people telling me "don't worry, it'll be ok", and that I'll not respond kindly because how can you say that when you don't know? I don't want to be the sympathy case. I was watching a documentary the other day (on pregnancy ironically) and the filmmaker said "Everyone wants the excitement of drama in their lives." I would give anything for lack of "excitement" right now. I don't want to talk about it right now when I don't even know what to say. My husband deals with things the opposite way...wanting to talk to everyone despite having nothing much to say. That is proving interesting. I figure this will be the closest I can get to not actually talking about it, but relieving from him the burden of not being able to talk about it because I don't want to tell anyone.

I also can't help but think how much easier this must be when it's your first child. You have nothing to compare it to. You only have to be strong for yourself and your spouse, you only have to worry about how it will affect your life. I am trying to figure out how in the world we even begin to talk about this with our children. How much do we tell them? How much will they understand? What do we even tell them? How will this change their lives? I am glad that they are used to me having to head to the bathroom every 30 minutes...and grateful that my youngest kids that are not in school are occupied enough with life that they don't notice puffy red eyes after my frequent "bathroom breaks".

For now we wait. Five long days we wait, and hope that the arrival of next Wednesday and another ultrasound will bring us at least one more little piece of information. Something to indicate in some way just what we may be facing. We search for a balance of optimism and realism. We hope. We pray.

1 comment:

  1. I am praying for you!! I was in the April 2008 board with you and now I am in the October 2010 board and saw your post on my board. I am sending my unconditional hugs and love. God is with you and will see you through.