One Long Trip to Florida

After Christmas day festivities, Grant and I loaded up with my mom and dad to head to Florida for the next week.  I have been really looking forward to the sun and pools that were awaiting me at the condo.  On the drive down, we hit some pretty nasty winter weather in Tennessee.  After passing a couple of bad accidents, one of which had the opposite side of the interstate closed down, we were debating pulling off to get a hotel room for the night.  

Somewhere in the middle of all of this I started having severe stomach pains.  I have never had a Braxton-Hicks contraction but was beginning to think I may be experiencing them.  The problem is, they started coming on stronger and more rapidly.   Finally, they got so strong I threw up and had to pull off the highway.  We found a hospital which referred us to another hospital in Chattanooga.  By time I arrived, my parents are freaking out, I’m freaking out, and in an incredible amount of pain.  When I finally met with the doctor I was contracting one on top of another and really thought I was going into pre-term labor.

After the doctor examined me she told me I was not dilating – THANK GOODNESS!   The contractions were not showing up on the monitor.  The doctor said that she really didn’t think I was having contractions.   She felt the pain may be bowel related. I have had bowel issues my entire life and there was no way that THIS pain was bowl related.  I explained to her when I had my son, my contractions never really showed up on the monitor.  She also told me I was early enough along in the pregnancy that they may not show up on the monitor at all.  At this point, I had crossed the tolerable pain threshold and was having trouble even maintaining a conversation with her.  She could tell I was in a good deal of pain and ordered a dose of morphine while she had to go to perform a c-section.    

I really thought to myself, “There is no way that a dose of morphine is going to take care of this pain!”   However, I was very wrong.  About 15 minutes after she gave me the morphine the pain ceased.    The doctor was not sure what had happened.  I was just glad that the pain was gone and I had not started the labor process.

My own self diagnoses would be that I started severe Braxton-Hicks contractions brought on by stress.  They honestly mimicked real labor.  My legs were even shacking uncontrollably due to the pain (only other time in my life this happened was in labor/delivery with my son).  This is how I knew there was no way it was bowel related.

Good news is I am FINE.  Bad news is it made for a long trip down to Florida and an unexpected bill from some hospital in Chattanooga, TN.

Dealing with the Waiting

I have often wondered with this pregnancy which is the lesser of two evils:  not knowing until delivery the baby has CDH or knowing the majority of the pregnancy.  Since I fall on the "knowing" side I have months to dwell on what ifs.  I have finally settled on my husband’s saying of, “It’s out of our hands.”  I do completely agree, but it doesn’t make the reality of the waiting any easier.  For the majority of babies with CDH nothing is done until delivery.  And, let’s face it, I HAVE NO PATIENTS.    So dealing with waiting until delivery to know how things are going to go has proven difficult for me.

My baby will be taken away from me directly following delivery to be stabilized.  With his lungs being so underdeveloped, he will have to have a breathing tube/ventilator I believe, at the least.  Once he is stabilized he will be transferred to Cardinal Glennon.  I will be delivering at St. Mary’s.  So then I will be left to waiting again.  Waiting without my baby.  I think waiting to be discharged for the 2 to 3 days following delivery to join the baby at the hospital will prove to be more difficult than the 5 months of waiting leading up to delivery.  At least during pregnancy him and I are waiting together.

CDH Facts

1.      The survival rate for CDH babies runs at 50%.  Approximately 1600 births a year; 800 babies survive.

2.       CHD occurs in approximately 1:2500 births (I have read different stats from 1:2000 up to 1:5000, however 1:2500 seems to be the most common).

3.       There is no known cause for CDH.

4.       There is no way to determine if your CDH baby will or will not survive.  Some babies that have severe CDH survive, while other more mild cases do not.

5.       There are several types of CDH with the left sided being the most common (this is where our case falls).

6.       Many families have never heard of CDH until they are diagnosed with it.

7.       We could have done nothing to prevent this from happening.

The Fetal Care Institute - My First Appointment

After being diagnosed, I was referred on to The Fetal Care Institute (FCI) at Cardinal Glennon Children’s Medical Center.   They contacted me and set up 2 days of appointments.  The first day consisted of a fetal MRI.  The second day was jam packed with appointments which included:  another upper level ultrasound, meeting with a geneticist, meeting with a Footprints Specialist (type of counselor at the hospital), the maternal-fetal specialist (Dr. Vlastos), and the pediatric surgeon (Dr. Yang).    My husband and I were very overwhelmed with all the information (to be expected), but overall the day went very smoothly.  At the FCI, they coordinated everything to run very smoothly from appointment to appointment.  We even squeezed in a tour of the NICU.

After the upper level ultrasound/fetal MRI results were compiled, we met again with Dr. Yang.   It appeared the entire stomach and some intestines were in the chest cavity.  These organs were then pushing the baby’s heart to the right side of this chest, and, most importantly, getting in the way of the baby’s lung development.  CDH babies run into the majority of their problems due to the underdevelopment of the lungs.  It never gets any easier having to hear this information, much less see it on the ultrasound screen.  The main thing we are looking for between now and my next appointment is improvement in the development of the lungs.  They are much smaller than they should be at this point in my pregnancy, but we just need to see they are improving to some degree.

At my next appointments, I will be having another upper level ultrasound (these become pretty routine obviously) to check on the lung development and an echocardiogram (hope I have this one right), which will check out the current condition of the baby’s heart.

The Initial Diagnosis

I should have known my life was going to become more complicated from the moment I was half way through my first routine ultrasound.  At the beginning of the ultrasound I was making small talk with the Technician who told me she had been doing ultrasounds for about 14 years.  She also told me my doctor should have the ultrasounds results in about a week or so.  Half way through the scan she told me I was the most difficult ultrasound she had done in the past 7 or 8 years.  She seemed to be having trouble locating some of the organs she needed to get measurements on.  At the time I assumed it had to do with the baby moving around too much or something.  Though she had trouble with the organs, she had no problem seeing that it was a boy!

The very next day I spoke with my doctor who told me they needed to see me regarding my ultrasound results that had come in.  I was surprised they had the results already since the Tech told me it would be at least a week.  When I arrived they told me that there was a “Gastric Bubble” on the scan and I was being sent on for an upper level ultrasound.  They already had it scheduled and gave me the info.  I knew at this point something was definitely wrong with the baby.

Four days later I went to my upper level ultrasound.  This is where we got the official diagnosis.  The baby had a Congenital Diaphragmatic Hernia.  I had never heard of such a thing until the diagnosis.  The baby’s diaphragm had not closed properly very early in the pregnancy, leaving a hole between his chest and abdominal cavities.  Some of the abdominal organs had then migrated into his chest cavity.  At this scan it appeared it was his stomach and intestines, but more testing would have to confirm that.

My mom was with me as this appointment.  I turned to her and asked her if she was going to be alright.  It was not easy information to hear.  The ultrasound tech had to finish up some measurements before I could leave.  I laid there and cried.  Not hysterically, just tears down the face knowing that this was going to be a difficult journey not only for the baby inside me, but also for myself.

First a little about us......

We are currently a family of 3.  Myself (Janna), my husband Paul, and our 2 1/2 year old, Grant.  We are your normal family.  We have a dog named Scooter who fights with Grant as if they were siblings.  In my spare time I enjoy riding horses and shopping. My husband prefers the basketball court or golf course.  Grant keeps us both busy with typical toddler stuff.  I considered us quite lucky that we had such a "normal" family.  We decided to add a new addition, thus, my most recent pregnancy.........that is where our family seemed to become a little more complicated.