The Appointments Begin

We had our first appointment with the pediatric cardiologist at the Dallas Children’s Hospital.  This appointment was very time consuming and emotionally draining, as we met with multiple people.  Thankfully, my mom and sister came down to Dallas for this appointment to help me digest all of the information that was given to us that day.  As much as Michael would love to be at these appointments with me, his work schedule just doesn’t allow it.  It breaks his heart to know that I’ll be going to the majority of these appointments on my own.

During the long appointment, we met with a social worker, a financial counselor, got the fetal echo done, met with the cardiologist, AND got a tour of the Cardiac ICU and the 8^th floor where our baby boy will be when he’s born.  Everyone was very nice and understanding.  It was clear that these people are great at what they do.  The social worker’s job is to make sure I’m set emotionally—line me up with support groups if I’m interested, make sure I’m not becoming overwhelmed by the financial burden that will soon be upon us, and be there for my overall well-being.  The financial counselor gave us an overview of the different programs that we can apply for to get financial assistance.  This is about the time that I first started to become completely overwhelmed.  We knew that having a baby would be expensive regardless, but having a baby who requires open heart surgeries and long hospital stays will be crazy expensive!

After these two visits, I was taken by the sonographer to get the fetal echo done.  Being at a different hospital halfway through my pregnancy has shown me two things.  One: The new women’s hospital in Omaha was beautiful!  I was definitely spoiled by that hospital and all of the amenities and brand new equipment that they possess.  Two:  Although this hospital does not feature the latest ultrasound equipment, this is definitely the right place for our baby boy since they specialize in his condition. 

The fetal echo confirmed that our little guy’s heart was still not growing as it should.  We met with a cardiologist after the echo to hear all that she had to say. Before our appointment, we had written down several questions that we wanted answered and this cardiologist answered almost all of them throughout her explanation of our little guy’s heart.  She was very thorough in her explanation and gave answers to questions that I wasn’t necessarily ready to hear.  She confirmed the diagnosis from the Omaha doctor that Baby Boy’s left ventricle is not big enough to pump blood to his body.  He will require 3 open heart surgeries.  The first surgery, The Norwood, will occur in his first week of life.  The second surgery, The Glenn, will occur between 4-6 months.  The third surgery, The Fontan, will occur between 2-4 years.  She also explained that these surgeries are “Palliative”, meaning there is no cure or fix for Baby Boy’s condition, but these surgeries are done to make life livable.  She continued on by explaining each surgery and what they entail.  She also told us that typically these kids are in the hospital for 4-6 weeks after the first surgery; however there is a range of 2 weeks to a year depending on possible complications. 

There are so many different factors and unknowns that go into this diagnosis.  We know that Baby Boy has a very severe heart condition and the steps that are in place to help him live his life.  We don’t know what condition he will be in when he is born.  We don’t know what his oxygen levels will be at and how soon after he’s born that he’ll need that first surgery.  I don’t know if I’ll even be able to hold him when he’s born.  This is the part that kills me the most.  I’m hoping for a minute or so before he’s whisked away, but even that is so painful for me.  Most know me as a “baby hog” because I love to snuggle with babies when they are new and cuddly!  I always envisioned having my own baby and being able to “hog” him as much as I want because he’s mine!  Hearing that I will have him taken from me the minute he is born pains me to no end!  The cardiologist told me that they won’t take him into surgery unless I get to hold him first and while I will cherish that time to no end; it still isn’t the same as a “regular” pregnancy.  I know that those few minutes I get with Baby Boy in my arms will be so precious.  Seeing the pain that my mom and mother-in-law have for me and Michael during this situation lets me see how immensely my love will grow for Baby Boy once he’s born.  I already want to keep him inside of me, where he’s safe and sound from the pains that he’ll experience when he’s born.  I can’t imagine the love and pain I’ll feel once I see his little face for the first time.

After the meeting with the cardiologist, we were taken on a tour of the hospital.  Being an avid “Grey’s Anatomy” watcher, I had always envisioned an ICU as one room with multiple babies lined up in incubators. J  Thankfully, that’s not the case in real life.  The ICU wing is beautifully done and each baby is in his or her private room.  There is a couch and recliner in each room for mom and dad to get some sleep and there’s also a TV in case we get bored.  There is a laundry room on the ICU floor for us to do laundry if we’re there a lot, as well as a bathroom and family room to eat in.  The nurse explained that living within the ICU is kind of like “dorm life” because there are no bathrooms in the private rooms because of health standards.  We must eat in the family room because food is not allowed in the baby’s room.  The 8^th floor is slightly different because this is the floor Baby Boy will be transferred to before he’s discharged from the hospital.  There is a bathroom in each room and we are allowed to eat in these rooms as well. 

This visit was a definite eye-opener.  Baby Boy’s condition is so serious and scary.  There are so many different aspects of his condition and different elements that go along with his condition.  It is very overwhelming, but I know that I need to take one day at a time.  While this visit made this week incredibly hard, there was happiness at the end of the week.  I came back to Omaha for the week for a few baby showers.  Even though this won’t be a normal homecoming, it’s still fun to celebrate this little life and start getting things for his arrival!  I can’t wait for the day that he comes home!

Thanks for the continued prayers.  In the midst of all of this, it’s so comforting to know that we have prayer warriors who are praying for Michael, Baby Boy, and I.  Please pray for my first appointment with my new OB.  I will have another ultrasound at this appointment.  Please pray that Baby Boy is developing normally (besides his heart condition) and that they don’t find any other areas of concern.  Pray for me and Michael that we can keep our lines of communication open throughout all of this.  Also, pray that we can make new friends in our area so we’re not going through all of this alone.

-Carrie