February 7-14 is Congenital Heart Defect Awareness Week. To help raise awareness, spread knowledge and share the effects of this disease, Jayme of The Paper Deer Photography Blog, Christie of Lemon Squeezy Home and Kierra of The Irvine Home are each sharing one story of a child with CHD every day to showcase the trials, triumphs, journey and heartache of this devastating disease. We invite you to read and share this project to further our voices. Thank you. #Facesof CHD
Last year in early March, we found out we were expecting baby number 5. We weren't thinking of having more children, but we cannot compete with God's plan. We were so excited that our family was growing and that we were going to have a new baby in the house. At the end of July, we had our 20 week ultrasound and found out we were expecting a little girl! We had already thought of names, and we decided to name her Lourdes Francesca. (February 11th is the day of Our Lady of Lourdes and that is the day my husband and I had met). At the ultrasound everything seem alright, however the doctor spent a long time looking at baby’s heart, and after a half hour he said he was sending me to get an ECHO, as he was not able to see all angles of her heart, and it seem like it was on the smaller side.
On August 1, 2014 we went to the Heart Institute of Chicago, and our lives were forever changed. After a long ECHO, the cardiologist asked us to join him in his office. We sat down and he said "there is something wrong with your baby's heart". I was devastated and so scared. My husband took my hand and we listened to the doctor as he then proceeded to tell us that "Lourdes has a very rare Congenital Heart Defect (first time I heard of the term Congenital) called Interrupted Aorta Arch with a large VSD". He talked and talked and explained all there was to be explained. He mentioned open heart surgery, but also said that the surgeon was the best there was, and the Lourdes was in good hands.
At the end of the appointment, the cardiologist mentioned that we should also consider doing an amniocentesis. He stated that congenital heart defects are generally a random occurrence, but they are sometimes caused by a genetic disorder, and Lourdes's type of heart defect was highly linked with 22q11 (also known as DiGeorge Syndrome).
We had the amnio test done, and we learned that Lourdes did indeed have a chromosome deletion, but it was Williams Syndrome instead. Within the next few months we were able to plan and prepare for what was to come, however, I grieved for the fact that I wasn't going to be able to bring my sweet baby home after regular 3 days in hospital, and that Lourdes would have to have open heart surgery within days of being born. Though I was absolutely heartbroken over what was about to come, I was ready to be there for her, fight with her and help through anything!
Sweet baby Lourdes came to the world on November 20, 2014 at 1:53pm. After a very easy delivery my little baby was here! Crying so loud and looking so healthy, I was able to hold her for a few minutes, before she was taken to the NICU. Lourdes was perfect! Every inch of her was beautiful and tiny – we just loved her so much. Her stay in the NICU was short, but I stood and never left her side for days on end. Lourdes was scheduled to have surgery Tuesday November 25 at 7:30am, however, we arrived at the hospital around 6:30am to pray and kiss our little baby girl. The NICU nurses had given her a bath, and she just looked absolutely beautiful in her tiny crochet hat.
At about 7:40am we made the incredibly long walk down to the OR, but we held onto so much hope that everything would go well. Wheeling our baby into surgery wasn’t easy, and it was one of the hardest things that we have ever done. We stopped, kissed her little forehead and handed her over to the team of surgeons that would operate on her tiny little heart who could hopefully fix it. Every hour we were given updates, and eventually the surgeon came out and said that surgery was a success!
Lourdes had a good recovery, and everything was right on track! She started to lose all the fluid, and she was looking more like our baby girl again. On Saturday, November 29, the doctors decided that it was time to close her chest. They had us leave the room, and they told us that it would take about an hour. We decided to leave so I could go back to the Ronald McDonald House to pump and get some rest. I received a call from the PSHU, and they told us that Lourdes went into a cardiac arrest and they were trying to connect her to the heart and lung machine. My heart dropped and I felt so lost and scared. We ran back to the hospital and waited for the doctors to come talk to us, as they wouldn't let me back in to see her. As I was waiting, a Chaplain came by and asked if he could pray for Lourdes – I immediately knew in that moment that something was very, very wrong. I wasn’t able to concentrate on praying, and 10 minutes after the Chaplain left, the doctors came out to talk to us. They had a look on their faces that I will never forget, and said words I never wanted to hear: "I am so sorry, we did everything we could".
- Paola (Lourdes’s mom)
Lourdes vitals had suddenly dropped, and when they opened her back up 20 seconds later, her heart had already stopped beating. Due to the Williams Syndrome, the walls of her arteries were too thick, and after trying for 45 minutes to connect the lines of the ECMO machine, they decided that she was already gone. And there... my sweet baby was no longer here. She was taken to heaven by our Father. She was no longer in pain or suffering. Selfishly, I immediately wanted her back…. and for the most part – I still do. I miss Lourdes so very much. I miss her skin, her smell, and her sweet little face. She gave us the most beautiful 9 days that I will ever remember, and though her life was short, she made an impact on so many people.As we still grieve the loss of our baby, I feel that we are also entitled to honor her and help raise awareness for Congenital Heart Disease. My heart is with every single mom that is walking this journey, I pray daily for them and their sweet babies.
- Paola (Lourdes’s mom)
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My niece Kenadie had a stroke when my sister in law was pregnant with her. The stroke happened because of a defect in her heart. I was so blessed to be there when that precious little girl was born and got to see her mom hold her for the first time before they whisked her away to be hooked up to every imaginable tube you can think of. Her mom and dad didn't get to hold her for two months after that. Kenadies sweet thirteen months were filled with love and countless days in the hospital. Would you be interested in her mom sharing her story with you if she's interested? Kenadie is definitely a girl who should never be forgotten and I bet it would be good for her mom to be able to share her feelings about it all. My email is firstname.lastname@example.org if you are interested in sharing Kenadies story. I'm sure you have so many other offers like this one, so I understand if you can not share hers. By the way, my heart aches for you and how long this is dragging on for you. You, your husband and warrior daughter are SO amazing to me and I pray you will be able to take Evanna home soon!ReplyDelete
We already have all our features for this year's #FacesofCHD project, but I am definitley hoping to do it again next year! Follow me on IG, and look for next year's post asking for submissions in January sometime ;)Delete