Meet Ace. His official diagnosis is: Congenital bradycardia; Atrioventricular canal (common atrium with small VSD closing); subaortic obstruction with Hypoplastic aortic valve, aortic arch and coarctation of the aorta; PDA; LSVC.
Basically…he has a very complicated heart. While he doesn’t have HLHS like Daniel, he does have a single ventricle heart. He has gone through 5 surgeries:
Bilateral PA band, temporary pacing wire placement
Pulmonary artery debanding, PDA division, Norwood with sano shunt
Permanent pacemaker placement
Bilateral bidirectional Glenn shunt ligation, aortic are augmentation
and 2 procedures
He spent 94 days after birth in the hospital. He was discharged right before Thanksgiving of 2018.
I met his mother, Marquita, in the Ronald McDonald House lounge on the 9th floor of Children’s Memorial Hermann a few days before Daniel was scheduled to be discharged the first time. Daniel was finally scheduled to come home soon, and he was out of the woods for the moment. I had just weathered the most emotionally, physically, and spiritually challenging storm of my life, and we had come through on the other side. I was on Cloud 9, so I was in the right headspace to engage someone else.
When I walked into the lounge, I saw Marquita sitting alone at a table. Her hair and makeup looked beautiful, but beneath her glamorous exterior, I could tell she had a heavy heart. She looked pensive and worried, and her foot was in a boot propped up on a chair.
I just had this feeling–I know how this woman feels. As I’ve written before, I am naturally an introvert; I never feel comfortable engaging someone new. This time was different, however. I knew she was hurting, and I wanted to offer her hope.
After introducing myself, I told her a little bit about Daniel’s story. She then shared some of hers with me.
When she was 13 weeks pregnant with Ace, she had gotten into a horrible car accident. It caused extensive bodily injury to her, and she actually had to get two surgeries while pregnant. After her first surgery, she had the external fixation (picture on the left). She couldn’t walk and was wheelchair-bound throughout her pregnancy.
The week Ace was born (ten days prior to this first conversation), Marquita had to have a C-section to deliver Ace, and then she had to have another surgery on her leg, all while her infant son battled for his life. Her son was actually getting his Norwood operation, the surgery Daniel had gotten three weeks prior, as we spoke (read more about this massive open heart surgery: Explaining the Norwood).
Immediately I was humbled. Having to sit and wait while your baby gets his Norwood is incredibly difficult. It is the longest 10+ hours of your life. Having to do all of this while recovering from TWO surgeries…mind blowing.
Marquita would soon share with me feelings that every single heart mom has felt. Is this my fault? Did I somehow cause this to happen? Did the car accident cause this; did my surgery? I am so glad I was able to tell her the truth– NO! The baby’s heart forms very early in the pregnancy. By the time Marquita got into the car accident, Ace’s special heart had already formed.
She told me that she has four daughters and a husband at home. It is so incredibly difficult trying to manage your other relationships while your baby is in the hospital. How in the world are you supposed to work, recover from birth, in her case recover from surgery, take care of your other children, have a relationship with your husband, and be with your baby while he’s in the hospital for weeks and weeks and weeks?
Unfortunately there is no rulebook. It is only survival, and each person has to find a way to stay sane.
Daniel was released a few days later. Marquita and I stayed in touch for the seven weeks I was home with Daniel. Ace remained in the hospital all that time. (I wrote the post To the mom whose baby is still in the hospital for Marquita). When Daniel came back for his Glenn surgery, Ace was still there. He had not left the hospital yet.
Ace actually had his Glenn surgery the day after Daniel had his. He got to come home two weeks after his surgery for the first time. Even though Daniel would remain in the hospital for several more weeks, I rejoiced with Marquita and Ace. This was such a long time coming! There are no words to describe the joy Marquita, her husband, and her daughters must have felt. The biggest thing that drives all heart moms is the desire to bring our babies HOME. Finally, Ace got to experience home for the first time.
While Daniel suffered from complications in the hospital for weeks after his Glenn, thinking of Ace gave me hope. Thinking of all he had been through, knowing how far he had come and how hard he had fought and now he was HOME– it all made it easier to be strong for Daniel.
Ace is still home. He is a happy, precious baby. He is a miracle.
Ace has also suffered from a bad skin rash all over his body that made his hair come out. It has finally healed, but doctors are trying to get to the root of it. Based on his rash and blood work, there is a chance he may have SCID– Severe Combined Immunodeficiency. This means that he may have little to no immune system, which is very serious by itself without even considering his special heart.
If there is one thing I know for certain, it is that miracles happen every day. I asked Marquita if I could share all of this with you because I know that so many faithful prayer warriors will lift him up in prayer. Please think of him, pray for him and his family.
Ace is an incredibly strong and brave little boy. He has touched my life. I am so thankful to know him.
Do not fear, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you. For I am the Lord you God, the Holy One of Israel, your Savior. (Isaiah 43:1-3)
Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. (John 14:27)