It is the day before getting discharged from the hospital where my son was born. A RN nurse comes in, checks my boy with a sthetoscope, and says she hears a heart murmur.
A doctor comes and dismisses it as a breathing pattern. Another RN comes, listens to my baby boy’s heart and says we need to check it through an echocardiogram (echo).
As my husband and I sit in the room with our newborn son, after the echo, a tech from the NICU comes and sees the obvious surprise on our faces. What is she doing here?
She raises her hands and her face undoubtedly confirms her words: “well, I am not going to take your baby from you! They sent me to do so but someone has to come talk to you”
What does she mean? Wait, did she say she came to take our son somewhere?
So now we speak with the cardiology team and take our boy to the NICU. There we see rooms with babies who are going through some trying situations. Mostly premature babies who have been there for at least a month. What are we doing in there? God, is this really happening?
“Your son has tetralogy of fallot. Meaning: he has a hole in his heart. Some holes close, but his is just too big.”
We keep saying this is an over-diagnosis. Surely he can’t have Tetralogy of Fallot (ToF). He doesn’t show any symptoms other than that heart murmur! We tell the doctors what we think and they just give us that…sympathetic smile, as if to say “we want it to be an over-diagnosis, we want to say he won’t need surgery, but that just isn’t the case”.
We take our son home, where he is busy getting longer and longer. His weight gain gets lower and lower as he burns crazy amounts of energy just to support his heart.
At four months, the cardiologist says that based on echo images she is certain that baby boy was over-diagnosed and he only has VSD (Ventricular Septal Defect). He will still need surgery, but probably won’t have a life time of frequent cardiology visits. Amen? Amen.
Now he is five months old and surgery is scheduled.
After his blood is drawn, an emergency comes up with a baby needing more immediate care than our baby. So his surgery is pushed back first a day, then a week.
A week later and we are back at the hospital. Now he knows the blue-sheeted bed where blood is drawn and immediately starts crying and looking at us with wondering eyes: why are you letting this happen? I remember it and I don’t like it!
He gets settled down and falls asleep in daddy’s arms until the anesthesiologist’s team comes to pick him up.
Now, there are these double doors past which parents are not allowed. So it is at these doors you kiss and hug your baby, you whisper prayers in his ear and pass him to one of the Operating Room’s nurses. He woke up for the pass-on, then thankfully went back to sleep. We watched them go beyond those doors, and smiled at God’s grace in that this surgery would enable our son to live a full life!
Our boy goes through having his sternum and heart opened, having catheters, IV lines, other monitors….all kinds of things! He comes out victorious; or so we think.
Three days later (yesterday) our boy is smiling again. He is flirting with the nurses and has most of the tubes, IVs and things out and off of him. A tech comes to do an echogram before discharging him today and says everything looks better.
Yesterday, late afternoon & a short while after my husband happens to be out of the hospital, checking on our toddler and grammy, our cardiologist comes in and says she and the surgeon looked at the new echo images closely, and she is really sorry to say this, but our son needs to have a revision surgery. Meaning: our son, who is just now feeling better enough to smile (and he LOVES smiling), who JUST underwent heart surgery, has to go through the same……process….again!
Can someone say SURREAL?
She tells me they theorize the patch that’s closing the hole may have torn, or the stitches partially did. She says the heart is pumping abnormally. Only way to find out what is going on and fix it is through surgery.
I hold myself together, and run to fetch my husband. How do I tell him? What do I say? How will he react? Will I hold it together when I see him? Did this conversation really happen?
Did this conversation really happen?
I manage to hold my tears and keep my voice stable until I get my husband away from our baby-girl and grammy.
As we stand on the stairs, he asks me what’s going on and I tell him “he needs to have the surgery again. Something is wrong” and I lose it.
I tell myself to put one foot in front of the other until we get to the hospital. As soon as we get to our floor, I don’t want to step out of the elevator. Tears roll down instead. I can’t believe this is happening. God, where are You?
We understand we have to do this, and nurses prepare meds and for our boy to stop eating, and ready himself for surgery today.
We are in tears. We ask God why.
A revision like this is something this excellent surgeon has seen twice in 24 years! Does he truly know how to fix it? What if he thinks he fixed it and then a third surgery is needed? What if our boy doesn’t make it.
O God! Please heal my son. This is all I hear myself say almost in a whisper, as tears are rolling and my throat is choking.
“Please, heal his heart. Please heal his whole body. Make his heart whole. Please, God, heal our boy!”
I know this is happening, but it still feels surreal.
This morning was the morning our son was taken to the O.R. again. Again we walked him to those double doors. Again we watched them walk in and turn down a hallway we couldn’t follow. The doors close and I start crying.
We go to the chapel immediately after the drop-off, find the perfect spot, and complete silence. I start reading a long healing prayer calling to God through many of His names. Him being the Healer, the Omnipotent, the Succorer, the Physician, the Just One, the Sufficing…. We called on Him that he heal our son. We kept saying prayers. My husband praying his heart be made whole. God made him and knew him before we.
Those words come again “Please heal my son. Please heal my son”
Something powerful happened as we prayed. We realized we had doubted God’s power. Really, God’s love; and that is all He is. We asked for forgiveness and acknowledged Him for all He is. We didn’t plan this. We didn’t ask jointly. We individually prayed and in this utmost pure moment, we prayed for our son in a way that maybe we hadn’t in years.
After an hour I realized I hadn’t checked my phone and we were expecting a call from the O.R. nurse telling us when our son had been sedated. Sure enough I had only just missed her call.
I called the O.R. nurse back and she said “oh, they were looking for you”. Red flag. Red flag.
The physician assistant (P.A.) gets on the phone and says “He is fine, the surgeon and cardiologist want to speak with you both. Please come upstairs”
I had a short moment when I wondered if God had brought me closer to Him to prepare me for the most horrendous news regarding my boy. I didn’t address this thought.
We got up and once again, I put one foot in front of the other and didn’t give in to my knees giving in.
We are told to go to a consultation room where two P.A.s, heart surgeon, and cardiologist join us. The cardiologist calmly (& with disbelief in her eyes) says:
“So, we have looked at the images from yesterday and today. Today’s images do not show a hole at all! We have looked and looked. It is like we are looking at another person’s heart! It looks 1000 times better!”
Immediately tears roll down our faces. Every time I think of this moment my face warms up and my eyes get teary.
“Are you sure???” We ask. They tell us they have never seen this happen before and they don’t have an explanation for it.
God is….great! God is purity. God answers prayers. God is real! God healed my son and gave him a new heart!
My husband had seen yesterday’s echo images and confirmed the second surgery had to be done. He then saw today’s images and put them against yesterday’s and there is NO mistake!! There is NO hole!!!
God works in mysterious ways, you know? Our son needed this first surgery, and we needed a miracle to remind us of the grandeur of God.
We are pretty inquisitive people, and love science. But this cannot be explained by science. And science is God’s, but this is a miracle and we are telling everybody!