Monday, May 4, 2015

Sam's Story, Part One

I was reading back through my Facebook posts, blog entries, and texts a few days after Sam passed away, and it hit me that I really didn't share with everyone how sick Sam was.  I texted updates almost every day, and sometimes multiple times a day to two different groups: one for my close family and one for my close group of friends.  On the Friday before Sam passed away, my group of friends came to visit because I had texted that Sam was getting sicker, and Stephanie called me almost right after I sent the message.  She asked me, "Are you worried?" and it hit me then that I wasn't fully sharing Sam's story with everyone.  I think at the time, I didn't really realize how sick he was.  I think the Lord was protecting me and allowing me to enjoy Sam while he was here. I didn't spend his life grieving his death.

When Sam was first admitted to the CHSU in December, we met several families whose babies were in the unit also.  It seemed like all these other families wore shirts to support their babies, had decorated their babies' rooms, made signs, added nurses and doctors to Facebook, and followed lots of heart family support groups.  I felt like that wasn't for me.  I felt like the first part of Sam's time in the hospital was just an inconvenience.  He was sick, but he would get better.  In those early days, I remember thinking things like, "These families who lose their babies still have to pay for their medical bills," and "I just can't imagine spending so much time in the hospital."  And then it was my reality.

In my mind, Sam had a heart condition, but it wasn't going to affect his life or ours very much.  Sure, he was going to have two surgeries, but the recovery from those would be short, and we would quickly go back to our lives.  We had so many doctors appointments before and after Sam was born, and none of the doctors mentioned the possibility of Sam's heart condition affecting any other parts of his body.  I had my head in the sand.  I think I was trying to protect my heart from our reality.

I never thought I would be a "heart mom" or the mom whose baby died.  I never worried about walking into a room of people and wondering how many people were saying or thinking, "That's Danielle, the mom who lost her baby."

I want everyone to know Sam's story.  God chose Stephen and me to be Sam's parents for a reason.  God has a purpose for Sam's life and death.  I hope by sharing Sam's story other families who have lost their babies might find comfort, CHD awareness will increase, and someone will learn that there is hope that only comes from Christ.

Here is Sam's story.

After we had Harper, we thought we decided our family was complete.  Basically, Stephen and I were tired from having two kids under two years old.  In October 2013, Emory was two and a half and Harper was a little over a year old, and Stephen and I started talking about having another baby.  Right after the new year last year, we found out I was pregnant.  It felt really unreal that we would be having another baby, but we were so excited.  I have always wanted three kids.  I truly didn't feel like we were "trying to have a boy."  I just wanted another baby.  I begged Stephen to wait to find out the sex of the baby until he/she was born, and he finally agreed.

I was finishing my master's degree that semester.  I graduated on May 10, 2014.

The anatomy scan was scheduled for the 13th.  The same sonographer who did the anatomy scan for the girls did the scan for Sam, so I felt like I knew her style of doing things.  She had been really thorough about explaining things during the scans for the girls, and she wasn't as much with Sam.  I thought maybe because it was my third go-round.  With each of the three scans, she told us that she goes out to bring the doctor in to go over the scan results, so I shouldn't be alarmed.  But when she walked out to get my doctor, I remember thinking about the baby's heart.  I just felt unsettled.  Dr. Newton came in and went over the pictures, and said the right side of the baby's heart was "atypically smaller than the left."  We asked a few questions, including what she thought the diagnosis was, and that was the first time I ever heard of Hypoplastic Right Heart Syndrome.  She told us she would schedule an appointment for us to meet with a perinatologist within the following week to confirm the scan results.  I didn't google anything at this point.  I told a few close family and friends about what we knew so far, but I tried not to worry about it too much.  At Emory's anatomy scan, we found out that she had cysts in the part of her brain that produces fluid, so we were referred to the same perinatologist we saw this time.  The cysts resolved on their own by the time we went to the second perinatologist appointment, and I kind of expected something similar with Sam.

On May 19, Stephen and I went to an appointment in Dallas with the perinatologist, Dr. Rinehart, who confirmed what Dr. Newton saw.  He told us a little about HRHS, talked about Sam's tricuspid valve, and mentioned that he had holes in the septum, also.  He talked a little about the surgeries Sam would need, and scheduled an appointment with a fetal cardiologist, Dr. Kao, for immediately after this appointment.  I was completely devastated.  Dr. Rinehart wanted me to do a blood test that would check for genetic abnormalities.  I usually have no problem getting blood drawn, but the first nurse to try just couldn't get it right.  The second nurse who came in asked me about what Dr. Rinehart told me.  She told me her son had the same diagnosis, had just had his second surgery, and was doing great.  I know the Lord put her in my life at that moment.  When we went to check out and schedule my next appointment, I couldn't even talk I was crying so hard.  The receptionist kept asking questions, and I just motioned to Stephen the answers for him to translate to her.  She scheduled my next appointment for the day of our anniversary, and I just cried harder.

We drove to Medical City Hospital for the first time for our appointment with Dr. Kao.  Her sonographer spent over an hour doing a fetal echocardiogram.  He explained a few things to us during the scan, and then Dr. Kao spent a long time going over a diagram of a normally functioning heart and the way our hearts work.  She showed us another diagram of a heart with Sam's defects and explained how his worked, the surgeries he would need, and his prognosis.  Dr. Kao was so positive at this appointment and every time we saw her.  I explained his diagnosis in a lot more detail in my first blog post {here}.

Stephen and I spent the next four months researching congenital heart defects, praying, going to numerous doctors appointments in Tyler and Dallas, and getting the girls and us ready for adding a baby to our family.  We decided we wanted to find out the sex of the baby so we could get to know him/her better.  I thought it might help us cope with our situation.  In the middle of June we asked the sonographer at the perinatologist to tell us if our baby was a boy or girl, if possible.  During the scan we talked about how we both felt like the baby was a girl, of course it was a girl because we already had two.  The sonographer said, "It looks like you broke your streak."  I didn't realize how excited I would be about having a boy until we found out we were having one.  During a fetal echo one time, Stephen looked up names and found Samuel, which means "asked of God."  Sam was and is everything we could have asked for.

I had gestational diabetes for the first time and was uncomfortable as is typical when pregnant, but otherwise my pregnancy was pretty smooth.  On September 22, 2014, Sam was born at 11:10 A.M.  He weighed 8 pounds 7 ounces and was 21 inches long.  He cried right away, and I had fully expected him to need help breathing right after delivery.  I wrote out Sam's birth story {here}.

Oh my, was he the most handsome baby boy I had ever seen.  He had a ton of hair, just like the girls, but it stood up and out.  His little top lip pouted out over his bottom lip.  He had beautiful long eyelashes.  He slept, and ate, and gained weight well.  

Sam spent his first six days in the NICU at Medical City and went home with us on Saturday the 27th.

Continues in {Part Two}....

1 comment:

  1. Thank you for sharing Sam's story! I look forward to reading more about him!