Not Quite Right

Remarkably over the next few months I was able to stay fairly calm.  At times I would be overwhelmed with worry, but usually I could take myself back to the sonogram.  I would remember how they saw distinct fingers, a normal looking heart, two hemispheres in his brain, and several other promising “normal” features.  I was also able to find comfort in doing all I could to prepare.  We even met with one of the three possible doctors who could perform his cleft repair while I was still pregnant.  He thought this odd and mentioned (more than once) that it was not typical to meet with parents prior to surgery. We were very glad we did because we were not pleased with this doctor due to his seemingly arrogant attitude.  Even though he seemed quite capable we requested a switch due to this experience.  We were able to choose a new surgeon prior to his birth and are so grateful for the choice we made.  His plastic surgeon is amazing!  We also learned about various treatment options, long term and immediate needs, and specialized feeding tools.  All of this helped us feel more prepared.

We had two additional, high resolution 3D sonograms with the perinatologist and things continued to look promising.  The two follow up sonograms were completed much faster but I pushed for them to look closer.  They obliged slightly, but mostly brushed off my requests saying that the first sonogram checked Logan well and they are still seeing normal development.  They looked at the major features, but the details weren’t as closely examined.  At these sonograms Logan’s size was also beginning to be predicted.  It looked as though he would be quite large with a predicted weight of around ten pounds.  My stomach measurements were also measuring on the larger side.  This was a bit odd because Reyna was only six pounds, thirteen ounces but larger babies had been born on Seth’s side of the family so it seemed possible.  There was also of course the consideration I had in my own mind that the original due date was more accurate which would throw off the size for gestation a bit.

My Extra Big Tummy

In addition to Logan’s larger size, there began to be some other oddities that started to increase my worry again.  Around thirty weeks I began to have regular contractions.  These were not the practice contractions that are normal.  These were typically three to five minutes apart and every time they hooked me up the monitor I appeared to be in full labor.  Thankfully however, when they would check internally I would show very little progression toward labor.  Twice I was given medication to prevent preterm labor but as little was changing I was able to continue with my daily tasks and work.  Many of the contractions would be uncomfortable but not terrible painful.  However, at times they were identical to my experience of going into labor with Reyna so it was very challenging to determine when I needed to go into the hospital.  We visited several times before the real thing and I was getting very frustrated by the thought of not being sure when it was “real.”  I was embarrassed to keep going in when it wasn’t needed, but at the same time worried I would ignore true labor. 

In addition to these early contractions Logan remained in breech position up until two days before labor.  I know that this can be typical, especially with a larger baby, but for me it just felt like one more thing that was not quite right in the pregnancy.  The (mostly) internal calm I was able to maintain earlier in the pregnancy began to break down at this point.  I think it was partly due to the delivery approaching and partly due to the instinctual feeling things weren’t quite right.  On the surface I was able to remain functional and calm, but inside I was full of worry.  Despite this worry, I was greatly looking forward to meeting little Logan.

Reyna enjoying a precious moment with Daddy
as Logan's arrival approached

The Unexpected Call...

Around twenty weeks into the pregnancy I had my next ultrasound.  Seth and I were extremely excited to see our baby and discover if we were having a baby girl or boy.  Just as it was with Reyna it was a thrill to see our baby moving around and looking healthy.  We learned we were having a boy and were excited Reyna would have a little brother.  We loved seeing his tiny hands and feet.  It was such a joy watching him move around and hearing his strong heartbeat.  Not a word was said during our sonogram to indicate that something may be wrong and we left filled with happy anticipation for our little boy.

A couple of days later we got that unexpected call and it was heart wrenching.  I received a call that our baby likely had a cleft lip and possibly palate.  Although this was overwhelming in itself, I took a deep breath and thought how we could get through this and do whatever was needed for our little guy.  However, when the doctor continued on with explanations that the cleft made it more likely that our baby could have an associated syndrome or other birth defects it became increasingly more difficult to hold it together.  She explained that we should see a genetic counselor and a perinatologist. 

After getting off the phone I did fall apart as I explained the news to Seth.  He stayed pretty strong, but I could see worry on his face which is rare.  Gradually it sunk in and we were able to think more clearly.  We then focused with determination to educate ourselves and do all we could to help our baby have the best care and life possible.  We found several great websites such as cleftline.org.  Several sites were reassuring while others increased my concern exponentially.  However, in the end, for me at least, these sites helped me relieve some of the anxiety as they allowed me to feel I was doing something by learning all I could. 

A few days later we had our appointments.  We first saw the genetic counselor.  She made a genetic histogram of our family which showed no indication of a genetic link to cleft lip and palate.  She then shared the frightening and ridiculously wide statistics that with a bilateral cleft our baby could have anywhere from a 15-60% chance of having associated syndromes, depending on the study.  She shared testing options but we declined as we did not want to put our baby at risk for further problems and risk losing him.  We had already made the decision we would continue the pregnancy no matter the outcome.

We then had the 3D ultrasound which clearly showed a bilateral cleft lip.  In the sonogram his cleft was so severe it looked almost beak like.  When we asked about this they told us it wouldn’t really look that way.  When Logan was born it looked exactly like that, but I still instantly fell in love with him and found him beautiful.  I know to others his features were alarming but truly I did not see him this way.  I can understand why they did not think it would look as it did in the sonogram as Logan’s cleft ended up being quite atypical.

Logan's First 3D Sonogram

The sonogram also showed that there was very likely a cleft palate.  However, as they closely inspected and measured the rest of his body all looked well.  This was very reassuring.  After the sonogram we met with the genetic counselor again and she shared that although there are not specific statistics, the likelihood that Logan had other issues was greatly diminished by the number of typical features viewed.  This gave us increased hope that all would be well once we had his lip and palate repaired.