Time flies...

It has been quite some time since we've made a new UpDades post, but you'll understand why shortly. Before we get to that though, let me get the biggest news in this post out of the way: Dade is here! The events before and after that day have been a blur, so allow me to give you a quick rundown of things between then and now so that everybody is on the same page again!

• Tuesday, July 22nd: Tara went to a regular doctor appointment with the folks at UAB and was admitted for evaluation thanks to high blood pressure.  It kept climbing during the day, so they sent us to Labor and Delivery.

• Thursday, July 24th: Dade's birthday!  After 2 days of labor for Tara which are a story for another day, Dade was delivered via c-section at 2:08 pm at UAB.  He came in at 5 lbs., 13 oz. and 18 1/2" long.  We spent a short 30 minutes in the NICU at UAB, then promptly headed to our current home at the Children's Hospital NICU.  The level of care we received from everyone at UAB was simply fantastic!  It had nothing to do with Dade's condition; that's just how they do things!  Here's a picture of our little guy hanging out in the UAB NICU before we made the trip across the breezeway.

• Friday, July 25th: Dade had a great first 24 hours, but late on this Friday night after several stressful hours of trying other options and watching his numbers continue to drop, he had to undergo surgery to be put on ECMO support.  ECMO (acronym for Extra-Corporeal Membrane Oxygenation) is basically a lung bypass.  Two cannulas (tubes) are surgically inserted, one into a vein (blood out), and the other into an artery (blood in).  This incredible machine then does the work for his lungs.  It oxygenates the blood, but it can also concentrate red blood cells, filter off excess fluids, and can infuse IV medicines into his blood before it returns through the arterial cannula.  As an engineer, it's been fascinating learning how the machine (shown below) works, though I of course wish it were under different circumstances. As I mentioned to our family one night, it does give you some perspective.  This machine (6 ft. tall, roughly $100,000 to purchase) is required to do the work of organs that God designed to fit into Dade's chest - an area roughly the size of my hand.  

ECMO Machine in Dade's Room

Dade's CDH predisposes him to some serious pulmonary hypertension, so his room is a "Minimal Stimulation" zone.  This means we can touch him a little, but we don't rub him, or talk very loudly to him in order to keep him as calm as possible.  This also means that we keep most of the lights off in his room unless absolutely necessary, so that's why my picture is so dark!

• Thursday, July 31st: Dade is now a week old!  Tara and I spent that week taking care of her as she recovered from the c-section surgery and wheeling back and forth between UAB and Children's to spend as much time as possible with our little guy.  Dade kicked major tail on ECMO!  So much so that his surgeon, Dr. Anderson, began contemplating taking him off of it. Instead, he decided it was time to go ahead and perform the surgery to repair Dade's diaphragmatic hernia while we still had ECMO as a safety net during his recovery.  Dade underwent surgery the afternoon of the 31st and I'm happy to say everything went wonderfully. All of his internal LEGO pieces are back in place, and Dr. Anderson patched the hole in his diaphragm.  Interesting side note - the patch is made of Goretex.  Yes, the same Goretex  you find in hunting boots and gloves.  Dade actually had a bit more diaphragm than anticipated, so the surgery went fairly quickly since Dr. Anderson didn't have to find muscles to use as attachment locations for the patch.  As Dade grows, the goal is for the parts of his diaphragm to grow too so that the patch slowly but surely becomes less and less of a percentage of the overall diaphragm area.  Barring anything drastic, Dade shouldn't need another surgery to replace the patch as he gets older.

• Saturday, August 2nd:  Dade continued to do extremely well on ECMO even after his repair surgery 2 days prior.  However, the ECMO machine and its components have a shelf life that varies from case to case. The membranes, filters, and other parts in the machine eventually get clogged with the blood cells and platelets that are passed through it, which restricts the function of the machine.  The machine has a number of safety measures built in. Among them is one where it will shut itself down, or at least decrease the flow passing through it when it senses resistance in the passage of that flow.  Dade's machine made it 8 days (great run) before it began to show signs of giving out.  He was receiving minimal assistance from the machine at the time because it had turned itself down so low, and he was still rocking along, so the doctors decided to take him off of ECMO rather than bringing in a new machine. Replacing the machine can cause a setback for the patient since the body has to adjust to the new setup.  That afternoon, Dade was removed from ECMO, but his cannulas were initially left in just in case he didn't respond well and had to be put back on.  Not long after, however, it was discovered that his cannulas had clotted.  Another of those ECMO machine safety measures is that the cannulas catch clots so that they don't pass into Dade's body.  The catch to this is that nothing else can pass through once the cannula is clogged, making the cannula useless.  Since they'd have to be replaced if he went back on ECMO anyway, the doctors went ahead and removed his cannulas.  Dade continued to do very well off of ECMO for a little while, but out of nowhere began to quickly decline.  I'll say this to sum it up: that night quickly became the worst night of mine and Tara's lives thus far.  But for the quick decisions of his surgeons to skip the typical steps and put him back on ECMO, we would have lost Dade that night - and we came dangerously close.  I never fully understood helplessness until then, and will be just fine if I never feel that again.  I am, however, eternally thankful to God Almighty for the people He has placed in charge of Dade.  They literally saved his life that night.  

That finally brings us to today, Wednesday, 8/6 where not much has changed since Dade was put back on ECMO.  He's currently trying to work his way through those aforementioned setbacks from going on a new machine, but he's doing his absolute best and has climbed so many mountains already! Never in our wildest dreams did we think we'd have already gone on ECMO, had his repair surgery, come off of ECMO, and gone back on inside of 2 weeks.  Tara and I have been spending most of the day just sitting with him, talking to him, loving him, and telling him how proud we are that he's fighting so hard and so well!  A plus to all of this is that Dade is actually pretty alert at times, so we've been able to spend some time actually looking him in the eye!  We still haven't fully recovered from the emotional trauma that was last Saturday night, but getting to look into these blue eyes sure helps it melt a little!

They don't make Costas in his size, so a blanket will have to do for now!

 

I'll post more this week about our current status and things to look forward to, but again, I just wanted to catch everyone up since things have been so crazy!  In the meantime, please continue to pray for Dade's lung development as we head down the road to getting off of ECMO again, and please pray for strength for Tara and me.  God has this covered; we have no doubts about that, but it does get harder and harder to leave him every night.

We love you all!