Sunday, November 8, 2009

Our Little Miracle

This post is long overdue. It's turned into a long post, too, by the way, but it's really long overdue. I've been completely humbled and overwhelmed by the miracle God has provided in our lives by bringing Chase into the world and keeping His hands upon him through his surgery and recovery. I truly don't think people understand what we were up against nor what our road could have looked like. Hypoplastic Left Heart Syndrome (HLHS) is a serious, complex, fatal heart defect. Without his open-heart surgery last Monday, Chase would not have survived for more than a few hours after his birth. This fact alone is both amazing and astonishing. I am so grateful we live in a time when imminent death is not the only option for these sweet babies with HLHS. I praise God for surgeons who are capable to operate on a tiny heart -- the size of a newborn's fist -- and successfully give them a second chance at life!

So we went into this journey hoping for the best, but expecting the worst. It's just how hubs and I prepared ourselves to handle the roller coaster we were getting ready to board. Our trust and faith has always been in God and we've had an unreal peace throughout this journey that only comes from above. But honestly, we went into this expecting to be in Charleston through the end of the year, possibly well into January. That was our expectation. That was what we prepared for. That was what we planned for.

We expected we would be in the PCICU following Chase's surgery for at least 4 to 6 weeks. It was a slightly conservative estimate that we felt prepared us for the long-haul. After 4 to 6 weeks, we estimated we would step down to 7C, the Pediatric floor where we would completely care for Chase around the clock, and again assumed we'd be there for 2 to 3 weeks. We always knew there was a chance that our time estimates would need to increase should Chase not respond well to his surgery and recovery period. The very idea of it taking any less time than our estimates never once crossed our minds. We knew very well that God was and is in control and whatever He has planned would be fine with us. But we were still expecting the worst and hoping/praying for the best.

So maybe now you can imagine why we are completely astonished that less than ONE WEEK after Chase's open-heart surgery, we are already discussing plans to step down to 7C. Keep in mind, we guessed we'd be in the PCICU for 4 to 6 weeks!!! It's been less than ONE WEEK and already Chase has made such significant progress that moving to 7C within the next 7 to 10 days is not out of the question!!! Our remaining hurdle is essentially getting Chase to eat, digest his food and keep it down. Seriously. Feeding is the last big hurdle we have to get over. We are already looking at our LAST big hurdle. Again, less than one week following Chase's surgery!

This is truly a miracle. An answer to prayer before our very eyes. Evidence that God is with us and in control of our situation. He hasn't left us alone. Quite the opposite! He's proven to us over and over again over these past few days that He loves us, He loves our precious son, and He has a plan greater than we ever dreamed or imagined! Praise His name!!!

Let's take a closer look...
mir·a·cle
noun

1: an extraordinary event manifesting divine intervention in human affairs
2: an extremely outstanding or unusual event, thing, or accomplishment
3: a divinely natural phenomenon experienced humanly as the fulfillment of spiritual law
I think Chase is the epitome of all three of these definitions. If you knew anything about HLHS, surgery, recovery, etc., you would know that we have exceeded the expectations of everyone -- hubs and I, the doctors and nurses, and even the surgeons have been impressed by Chase's progress and recovery. Let's take a closer look at where we were 6 days ago and where we are today:

Monday, November 2nd: Immediately Following Norwood Surgery...
  • Cerebral Oximeter - This huge sticker thingy took up his entire forehead and was used to monitor oxygen levels in the blood in his brain.
  • Ng Tube - This tube went into his nostril and into his stomach and was used for feeds and meds.
  • Endotracheal Tube - This tube went in his mouth and into his trachea and was used to assist with breathing.
  • PICC Line - This IV was located in his left arm and was threaded through his veins and went directly into his heart through. It was used for meds.
  • PICC Line - This IV was located in his right arm and was used as an additional access point should they need it.
  • RA Line - This line went directly into his right atrium and was used to monitor his heart pressure and also to provide him with meds.
  • Pacing Wires - These wires went directly into his heart and were in place in the event of an emergency.
  • Right Chest Tube - This tube was used to collect the drainage around his heart.
  • Left Chest Tube - This tube was used to collect the drainage around his heart.
  • Somatic Oximeter - This huge sticker thingy was like the Cerebral Oximeter on his forehead, only it was located on his lower back to monitor the oxygen levels in his kidneys.
  • UAC - This Umbilical Arterial Catheter was put into the artery of his umbilical cord stump and was used to draw blood samples and blood gases in order to verify the amount of oxygen and other gases in his blood.
  • UVC - This Umbilical Venous Catheter was put into the vein of his umbilical cord stump and was used to monitor his blood pressure and to provide him with meds and nutrition.
  • Foley Catheter - This catheter was used to monitor his urine output.
  • Rectal Temperature Probe - This probe was used to monitor his temperature.
  • I believe he was on somewhere between 12 - 15 medications.

Sunday, November 8th: 6 Days Post-Op
...
  • Ng Tube - This tube goes into his nostril and into his stomach and is being used for feeds. This tube will probably stay in place when we step down to 7C (the Pediatric floor) and depending on how he does with feeds, he may or may not still need the ng tube when we are discharged.
  • PICC Line - This IV is located in his left arm, threaded through his veins and directly into his heart. It is being used for meds. This line will stay in place when we step down to 7C and will be removed before we are discharged.
  • RA Line - This line goes directly into his right atrium and was used to monitor his heart pressure and also to provide him with meds. The current plan is to remove this line tomorrow (Monday).
  • Pacing Wires - These wires go directly into his heart and are in place in the event of an emergency. These wires will stay in place when we step down to 7C and will be removed before we are discharged.
  • I believe he's only on 2 or 3 medications.
I know this was a lengthy post and that I probably didn't describe all of the medical terminology completely accurately, but hopefully you can see through this mommy's perspective and understand what my baby boy has been through and truly what a miracle and blessing he already is in our lives. He's not even 2 weeks old and he's been through more than most of us have been through in our lifetime. His journey isn't complete by any means... we have another surgery that will take place around 6 months old and another one around age 3. But I cannot tell you how encouraged I am by his amazing progress, and how humbled I am that my Lord and Savior would use my son to demonstrate to me in a way I most definitely can understand just how much He loves me and cares about me and my family. When I look at my precious baby, I can hear the words of my Father speaking to me:
"I know what I'm doing. I have it all planned out—plans to take care of you, not abandon you, plans to give you the future you hope for."
Praise His name!!!