Tuesday, September 30, 2008

Our Story from the Beginning

Friday, May 23, 2008

We found out today that we are pregnant!!  While we have been trying for quite some time, it still came as a surprise and we found that we were in a bit of shock.  It was a very happy surprise though!


Monday, June 16, 2008

We had our first appointment at Choices West today.  There was not much to see, but we did get to look at our “grain of rice” on the sonogram.  It’s just amazing!  We now feel a little more comfortable starting to share our big news with others!


Monday, July 14, 2008

We had our second appointment today and got to hear the heartbeat for the first time.  It is hard to believe that there is a little heart beating in there already.  The heart was strong and everything looks good!  Mom has started feeling worse the past couple of weeks, but it is not horrible and she can just relax for awhile now that it is summer.


Tuesday, August 12, 2008

Another short visit to Choices West this morning let us hear the heartbeat again - - just as strong as it was last time!  Mom is still not feeling very well and is still getting sick.  It is not a daily occurrence though.  The doctor gave her a dissolvable pill to try when the nausea starts.  It is supposed to make it go away instantly.  We will have to see if it works, but it does give a little more peace of mind with the school year fast approaching!


Tuesday, September 2, 2008

Today was our big appointment at Choices West.  We have reached 19 weeks and were due for our first real sonogram that looks more like a baby and less like a blur.  Today was also the first day back at school and we got off to quite a start as Mom puked out the side door while the new administrator she had never met looked on - - great first impression!!

The sonogram was amazing!  The technician explained frame by frame what we were looking at: the head, arm, leg, waving hand.  He was having a hard time keeping up with the baby and let us know we should invest in some running shoes because we were going to need them.  At one point, he switched to a view of the baby that needed no explanation - - it was a perfect view of the baby’s profile complete with a turned up little nose.  We were in awe.  As we sat in the waiting room waiting to meet with the midwife, looking at the printed version of this view, we joked about the elf nose and sent out a cell phone camera version of the sonogram.

After getting called back by the nurse, we went through the steps that have now become natural.  I had gained 4 pounds since my last appointment, which is actually the first substantial weight I have gained since the beginning.  Things seem to be progressing.  The nurse left us in the examination room to wait – and wait we did!  A while later, Rita, one of the women in the office who we have been seeing, finally came in and shocked us with what she had to say.

It seemed that the sonogram technician saw something that concerned him.  While they are not specialists in this, it seemed from what they could tell that the baby had a hernia in its diaphragm.  That was all they would tell us.  Other than that we needed to now see a specialist at the Perinatal Center to have another, better sonogram in order to confirm this or prove otherwise.  They would schedule this appointment and we would go from there.  The range of emotions that go through you is indescribable and the wait until that next appointment seems like an eternity.


Wednesday, September 10, 2008

The morning of our next round of doctors arrived and we tried to remain as positive as possible.  Angela at Choices West tried to get us an appointment as soon as possible to cut down on the nerve wracking wait.  She also warned us that it would be a very long day, so we came prepared.

In the days leading up to this, Dad of course started a full internet search of everything related to this problem.  We now knew it was a genetic birth defect called Congenital Diaphragmatic Hernia and that it affects roughly 1 in every 2500 babies in America.  The appointment with Dr. Spadola today at the Perinatal Center would fill in the blanks as to (a) if this was what we were dealing with and (b) what the severity of our case is.

The Perinatal Center was chaos.  It was loud and busy - - just the complete opposite of Choices West where we have become so comfortable.  The people there are the best at what they do though, so that is all we can ask for. 

After waiting for over an hour, we finally got called in for the sonogram.  The technician was very thorough and took a fair amount of time looking our baby over inch by inch.  In spite of the circumstances, it was still amazing to see that little baby on the screen.  She would not say anything one way or another and just reiterated that Dr. Spadola would discuss everything with us when we met with her later.

Back out in the waiting room, we waited some more.  It was nerve wracking.  The nurse finally called us back again.  She took my weight and blood pressure – which was high, of course – and then ushered us to yet another room to wait in.  We sat there for a while longer before another nurse came in and did a short questionnaire with us regarding our health and genetic backgrounds.  Because CDH is a genetic defect, they needed a full background to rule out any other complications.  Then came more waiting until Dr. Spadola finally came in, introduced herself, and asked us to follow her to an examination room so she could have her own look on the ultrasound.  Still no answers, but we had an idea now that it was not going to be the “everything looks good” diagnosis we had hoped for.

Dr. Spadola intently studied the images on the screen for a few minutes before finally announcing that it is often easier to point things out rather than try to explain later.  She pointed to a large black spot on the baby’s chest.  This, she told us, was the stomach.  She also noted that it was pushing the heart to the right and obscured the view of the left lung.  The long and short of it was that there is indeed a hole in the diaphragm on the left side.  From what can be detected through the sonogram, the stomach and part of the small intestine are in the chest cavity where the left lung should be developing.  She also found a cyst on the baby’s brain.  This she said is a “common human variable” – many babies have this and it can mean absolutely nothing.  In our case, since there is one defect already in play, the cyst could mean something more serious or it could mean nothing at all.  We are focusing on the issues that we know exist and are not going to get caught up in the “what ifs” that pop up along the way.  We have to have faith and deal with things as they come.

We decided to forego additional genetic testing and continue the pregnancy as normal.  There is nothing about what we do between now and February that will change whether we know more or not.  It was hard news to take and obviously not what we hoped for, but there were a few bright spots.  For one, the hole is on the left side, which is the better side for it to be on.  Also, Dr. Spadola measured the right lung and it looks good - - not perfect, but better than it could be.  And from what she could see, the liver is not in the chest cavity, which is a big plus.  She gave us an 80% survival rate and we have the best facilities in the area to work with.  She was perfectly clear that this will not be an easy road to take and will have its fair share of ups and downs, but it is doable.  She was honest.  The baby will be placed on a respirator as soon as it is born and will have surgery to correct the defect as soon as he or she is stable enough.  From there, no one knows.  Every case is very different.  It could be three weeks in the NICU; it could be three months.   

We will have more testing done to get a better picture – a fetal echocardiogram to look for heart defects and an MRI to determine where exactly all the organs are.  The echo is already scheduled for next week.  Until then, we will continue to hold out for the best.


Tuesday, September 16, 2008

We went to the pediatric cardiologist today.  The technician who did the echocardiogram was very nice and luckily Gumdrop cooperated, so it was a quick process.  The doctor happened to be called out to the hospital, so she offered to have him call us when he returned if we did not want to wait.  We decided to wait it out though.  We could not have handled leaving without knowing what the prognosis was.  When the doctor called us in, he was quick and to the point: the heart looks good, all the parts look good, blood flow looks good.  He said that after the baby is born, they will do another echo to make sure there are no minor defects, but from this standpoint, the heart is healthy.  Good news was exactly what we needed!


Monday, September 22, 2008

We went and met with Deacon Nick from Holy Family tonight.  Vince had talked to him last week and explained the situation, so he invited us to come in and sit down with him.  He is a fantastic person and put our minds more at ease with all that is going on and is to come.  He told us some amazing stories of babies he has dealt with that have beat all odds and the miracles he has witnessed.  We discussed with him our options for after the baby is born and we have decided to call him as soon as the baby is on the way.  He is going to come to the hospital and baptize the baby as soon as he can.  Then, after Gumdrop is well again and on the road to full recovery, we will have the full church baptism ceremony with everyone.  It is a comforting thought.  We are sure that Deacon Nick will be a great support for us in the months to come.


Thursday, September 25, 2008

We felt Gumdrop moving for the first time tonight!  Well, Mom has thought she has felt things for the past couple of weeks, but was not quite sure.  Then tonight when we were watching TV, the bumping became obvious.  Mom grabbed Dad’s hand and made sure he felt it too.  It was amazing…  there really is a little baby in there and it is getting bigger and stronger every day.


Tuesday, September 30, 2008

We had our next regular check up at Choices West this afternoon.  Mom is sick with a cold, but other than that things look good: we gained another 3 pounds, good blood pressure, and a strong Gumdrop heartbeat.  Rita seemed confident that there will be no problem with us continuing our care at Choices West.  We will still go to the Perinatal Center regularly for sonograms and for Dr. Spadola to keep an eye on the progression on things, but Choices West will continue to be our primary office.  In the end, it should not matter who cares for me and delivers the baby, so long as the neonatologist is there to care for the baby as soon as it is born.  We feel much more comfortable at Choices West, so we are happy about that!  

Charlie's Name Gallery

from Aunt Monica B - Rockport, MA

from Charlie's girlfriend, Kayla Mae - Canton, NY

from our good friend Chrissy DeHay -
Fayetteville-Manlius High School, NY

from the Hinaman cousins, Jessica, Jasmine, and Jennifer -
Grand Island, NY

from Maxwell (top) and Nolan (bottom) - at the Strong Museum, Rochester, NY

from Ashley and David Standifer - casino winnings from Tunica, MS

from Charlie's Greatgrandfather, Charlie Angeles
and his dog, Keeshond Charlie (KC) - Saratoga Springs, NY

from Leah, Jenna, Olivia, and Colton - Myrtle Beach, SC

from Carter, Charlie's CDH buddy - North Carolina

from Aunt Melissa, Uncle Walt, and soon-to-be cousin, Noah - Syracuse, NY

from the Naz girls (Patty's grad school friends) - Rochester, NY