Wednesday, February 9, 2011

CHD Awareness Week - Luke's Story

February 7th through the 14th is Congenital Heart Defect Awareness Week. Every day this week, we will feature one guest post from the parent of a CHD warrior or angel. This is baby Luke's story...

I guess you could say that our heart story began in July 2008. We found out that we were pregnant with our third child. We were overjoyed with the possibilities that a new life would bring to our world. After all, Emily and Matthew had already brought us such joy (ok...with a bit of frustration at times). To add a third child to our family just seemed like the perfect plan.

The pregnancy continued without a hitch. When we went for the “big” ultrasound, we found out that our baby was a girl. To say that Emily was excited to have a baby sister would be an understatement! I remember asking the tech if she saw what I saw (as in, a little penis) and she told me that she thought she saw “something” but that no, it was a girl. But she was healthy and that is all that really mattered to me and Tommy. About 9 weeks later, I was still not convinced she was a girl, so I had my OB check the baby's sex once again. She assured me that there was a little girl hanging out in my tummy. Even though I took her at her word, I still knew that something was not right with our little girl, Ava “Caroline”.

Fast forward to 37 weeks pregnant. I went for our final ultrasound to make sure that Caroline was head down for delivery. At that time, I asked my OB to check the sex “just in case”. Lo and behold, she saw testicles. Yup, Caroline was a BOY! My OB sent us down to get a more in-depth ultrasound to double check the testes status. It was confirmed: Caroline was a Luke. I remember hearing his heartbeat a lot during that final ultrasound, but when I asked the tech about it, she blew me off and told me she was listening to the artery in his umbilical cord. I knew that something wasn't right with Luke.

March 12th, 2008 started out as an amazing day. Tommy and I woke up (but did I even really sleep?) bright and early. I called the hospital to make sure that they could handle our induction. We kissed Emily and Matthew goodbye and arrived at the hospital a bit before 7 am. The induction went well and I laughed through contractions. It was perfect. And then we had this amazing baby boy. Luke Thomas.

The signs appeared to me almost instantly. When the nurse gave Luke to me to nurse, I noticed his hands. I know, I know. Most babies have bluish hands right after birth. His hands were not “blueish”. They were blue. I asked the nurse and she dismissed it. Then he kept falling asleep while he nursed. I knew that something was wrong with my baby.

My parents brought Emily and Matthew to meet their baby brother. The pictures of them holding Luke in the hospital room are the last pictures we have of our innocence. As the family was leaving, the nurse told me that she detected a heart murmur. That is the moment that we lost our innocence.

A few hours later, we received Luke's death sentence: Hypoplastic Left Heart Syndrome (HLHS). This sounds harsh, but it is the truth. It is how I feel. Luke was transferred via helicopter to the Houston Medical Center.

The few days before Luke's Norwood surgery were mostly a blur. But there are certain memories that are so vivid: the sight of our baby with monitors and iv's all over, the smell of the hospital soap, the cardiologist telling us how quickly hypoplasts can die.

Luke had his Norwood surgery on March 18th, when he was just a week old. He sailed through surgery as well as recovery. He came home 13 days post-op and was eating out of a bottle rather than an NG tube. Amazing—just like him.

It was good at home for a about a week and a half. Luke was growing, he was loved, he was such a good baby. It was the last week of his life that I noticed something was wrong. Again I knew that something was wrong with Luke. Luke had begun to have some issues while eating. He was having trouble drinking from the bottle and he was vomiting a lot. We went to the cardiac clinic on April 18th and our suspicions were (once again) dismissed. The cardiologist told us that Luke must have had reflux and wrote us a prescription for some anti-reflux med. I accepted her diagnosis because I trusted her, but I knew something was wrong.

We lost Luke that night. I don't talk much about what happened or how it happened. We lost him and that is enough for me.

Why share this story with you? Why do I keep repeating that fact that I knew something was wrong? I share this with you because I want you to learn something from Luke's life. I want you to trust yourself. Trust your instincts. Be an advocate. Let the powers that be know that you are concerned about your child's health. Whether your child has a cold, a suspicious bruise, or half of a heart...be an advocate.

The thing that affects me the most in regards to Luke's life and his death is the fact that I was not the advocate that he needed me to be. I failed him and the guilt that comes with that failure is overwhelming. Almost three years later, I am confident that he is much better in heaven than he would be here with us. I just wish that I had pushed a little bit more.

A few days after Luke died, my OB came to visit me and Tommy at the house. While talking with us, she shared that she had seen thickening on his heart during that final ultrasound. She admitted that to us. But then she saw his testicles and forgot all about his heart. That is a problem. Although testes are important (especially to the man to whom they belong), the fact that she “forgot” about his heart is absurd and unbelievable. This is the problem, though: heart defects are hugely under diagnosed.

Thank you to Michelle and Erik for allowing me to guest blog on Sawyer's Heart. What a beautiful little boy they have in Sawyer. Feel free to visit our blog at www.lukeslegacy.blogspot.com and check out our charity in Luke's memory: www.lukestree.org. Hopefully there will be a day in the future when parents don't have to bury their children because of broken hearts. Let's find a cause and find a cure! God bless you all!

7 comments:

Kristine said...

Such chills. I always say to parents that the 20 week u/s is about much more than finding out gender, but didn't realize doctors needed that reminding as well.

Sarah Halstead said...

Thank you for this post. I am not dealing with a heart defect, but I have been trying to get some help for my son that has not developed since 4 months. That was 5 months ago. It has taken forever. Now I am finding out that he may have Cerebral Palsey. I am trying to be his advocate but it is hard to stand up to doctors. They make you feel like you are dumb.

April Marie Driesse said...

This gives me chills. I thank the OB/GYN that I had in NH at Bedford Commons OB/GYN and the Fetal Cardiologist at Dartmouth Hitchcock time and time again because it was that 23 week ultrasound that revealed my daughters heart conditions. It was that day that changed my life forever, and it was that day that made me grateful for her time and time again. Some doctors are easy to dismiss, but not all. It is this reason why I aspire to become a Doctor someday... so I can share with people my story, and how not all doctors dismiss peoples concerns... Lets work together to make people CHD Aware...

So sorry for your loss

thebakertrio said...

I am so sorry for your loss. I am in tears reading this. My son Jacob was born March 23, 2010 with HLHS and a intact atrial septum. Please do not guilt yourself about trusting your doctors. This is not a typical situation in any sense of the word and our doctors are who we depend on to get through this. I almost lost Jacob more than once. He is doing very well now but of course the future is unknown. I take each day as a gift and like you said I trust my instincts and am pushy no matter what. Love to you and yours. Jacob's story is at jacobsspecialheart.blogspot.com

Laurie said...

Your words are so true -about being your child's advocate - and my heart breaks - your story so different, your story so similar... too similar. My heart to you.

The Good, The Bad, & The Family said...

His picture is beautiful. Thank you for sharing the story of Tunis amazing part of your family.

a721de28-772f-11e2-8e0f-000bcdcb471e said...

Bernie, much love to you. Standing beside you during this time broke my heart truly. Reading your story again (now that I'm also a Mom and went through 57 days in the NICU with our Dylan recently and had to fight for him tooth and nail on a daily basis, while also experiencing bradycardia, apnea, extreme reflux and vomiting, cyanotic color and also a heart murmur) breaks my heart in a whole new light. A Mother is always the #1 advocate. Please never doubt yourself and all you gave for Luke during his short time here. He's the one who one the prize there. Love to you from a long time friend and Mom of a little boy who needs my prayers and advocacy as he continues his life. Thanks for inspiring me to stay strong!!