Daily Status UpDade - Thursday, 8/28/14

Just a quick post this morning to let you all know that things are about the same with Dade as they were on Monday.  We're still watching the clot, and his head is still swollen, though I think it's accurate to say that it hasn't gotten any worse since the clot was discovered.  He's had a pretty eventful day already, but he's calmed down and squeaking on his ventilator as I'm writing.  He's had an echocardiogram this morning to further evaluate the clot, so we'll get results from that later.  For now, the plan is to keep giving him blood thinner injections to stop the clot's growth and help his body absorb it.

Dade may also be relieved of a couple of his IV lines today.  One of the lines inserted in an umbilical artery when he was born has seemingly given up the ghost and isn't giving blood for labs anymore.  That means heel sticks to get blood, and he is NOT a fan.  I can't say that I blame the little guy, though!

I'll update again later today, but again, just wanted to let everyone know where things are this morning since it's been a few days since you've heard from us!

Daily Status UpDade - Monday, 8/25/14

In true Dade fashion, today has been eventful.  He's had some swelling of his head over the weekend, and it's worse today.  We now know why. After a head/neck/chest ultrasound this morning, Dr. Anderson saw that Dade has a blood clot in his superior vena cava which is just as serious as it sounds.  This is a vessel that flows directly to the heart and in which one of his cannulas was inserted. Clots are actually fairly commonplace with ECMO because the cannulas are inserted into the vessels, but that doesn't make it any less serious.  The clot isn't fully blocking the vessel, but it is slowing the flow through that region of his body - hence the swelling in his head.  Dade has had a long, crappy day with plenty of poking and prodding, but he's done well through it, and is sleeping well now. After consulting with the CH hematologist, Dr. Anderson has put Dade on a new blood thinner to keep the clot from expanding. His body should absorb the clot, but there are other options if it doesn't.  It may take several days for us to see results from the new blood thinner (i.e. reduction of swelling) that show if the clot is being absorbed.  In the meantime, our new prayer target is that the clot doesn't move.  Please, please pray that it doesn't move. 

Room With a View, Please!

Some of you may have noticed on Facebook the other day when one of my best friends mentioned "Lord, give us a room with a view."  This is our prayer! I don't dream about getting him home just yet. If I've learned anything, its that this road is long, bumpy, full of steep hills and full of baby steps.  Of course its my goal to get him in his room in our house and I can't wait, but the next step is a room with a view.  I LOVE downtown Birmingham and the skyline, but that isn't why Im desperate to see out.  The NICU here has special rooms that CDH babies are admitted to in case they were to need the ECMO circuits.  They are shaped differently so that all the equipment will fit.  Due to their need for minimal stimulation, they also have no windows.  The room stays dark and quiet and can suck the life out of you.  It feels MUCH better with the ECMO circuit gone though.  When Dade had his circuit, he also had two nurses in here at all times, an ECMO specialist and an RN to tend to his needs.  Now, we are down to one nurse and we have added a recliner so now DJ and I sit here together, comfortably.  We look like two old folks cuddled up watching tv, accept for we are watching Dade and all of his monitors.

Before the rooms were full on this unit, I would walk into an empty room, with a view, and pray for God to just get us to one of those rooms.  To me, THAT is progress.  It means that we are off of ECMO, the machine is history, and that our son is making strides to get out of these rooms and into a different type of room...with a view! Let that be your prayer with us, please.

Stuck Between a Rock...and a Rock

Yes, I know the phrase is "Stuck between a rock and a hard place." It is also used in a different way than I am referring to it tonight. Usually, it means that you're in a difficult situation with no way out.  In my situation, I see it as a benefit.  I am stuck between a rock...THE Rock, Jesus, and another Rock, DJ.  When we say that this has been the hardest, scariest, and  most exhausting month of our life, its no understatement.  However, I have strength from the Lord and from my amazing husband, DJ.  DJ has driven me around for the last month, taken care of me at every point of the day or night, held my hand as we heard our son cry a tiny cry before being taken to the NICU, makes me eat when all I'm doing is worrying, makes me laugh so hard my stitches may or may not heal, is my breast pumping drill sergeant,  has arranged to be out of work to be with me and Dade to meet our needs, and loves me more today than yesterday.  I am blessed beyond measure.  Dade has the best father there is and I have the best partner for this imaginable!

 If you are about our age or older, you may remember Paula Abdul's hit song "Opposites Attract." She was so right! DJ and I have some personality traits that are similar, but the best/biggest difference is that we process information completely different...hence the fact that I am a Social Worker and he is an Engineer.  Anyway, from Day 1, April 16, when we met with Dr. Anderson, I knew this difference would be in our favor.  I cried the whole entire meeting that we were learning about Dade's diagnosis and what the long road would look like.  DJ took notes and was just taking in all the information he could.  I was a wreck immediately.  He consoled me and held me until the next day when all of the information he had gathered finally sunk in and effected him.  We have been on different time tables for most of this journey so far.  It has allowed us to be strong for each other at the time that it really sinks in with either one of us.  Such a blessing. DJ is NEVER one to draw attention to himself, but I just had to share his strength and love every day through this! We haven't been apart more than a few hours since July 22.  Most folks would be a little sick of their spouse, but I truly don't know how we will go back to work and how life will be with this "new normal." It has only made us stronger as a couple and as parents.  

Daily Status UpDade - Friday, 8/22/14

First thing's first: thank you, Almighty God for your healing touch and for your unending, unconditional love.  Thank you for the incredible doctors, nurses, and practitioners that are caring for Dade as if he were their own, and for the skills with which you have blessed them.  Secondly, thanks to all of you for your prayers on Dade's behalf!  While we are still far from out of the woods, we have nothing but praises for today!

As I'm writing this, Dade is approximately 28 1/2 hours off of ECMO, and about 8 hours from having his cannulas removed.  He's doing great!  His blood gasses have bounced around a bit, but everything seems to be settling down, and it hasn't been anything unexpected.  The little guy is a chunker today. He has some fluid to rid himself of after coming off the ECMO machine, but he'll get it done!  Again, I have no illusions that we don't have some rocky spots still to cross ahead of us, but I think I just may get some sleep tonight.  With life post-ECMO comes a new set of challenges, goals, and obstacles, but we'll celebrate a little now, and face those head-on as we get to them. Tara and I are so proud of Dade and how he's kicked some tail the last few days, and are elated to have him off ECMO and doing so well!

We love you all and thank you from the bottoms of our hearts for your continued prayer and support! 

Daily Status UpDade - Thursday, 8/21/14

As of about 5:30 pm, Dade is off the ECMO machine!  The measure of how he's doing off of the machine is the concentration of carbon dioxide (CO2) in his blood stream.  The nurse just checked his first blood gas after coming off. So far so good!  I'll update here as we go along.  No news is good news, so if there are a few gaps, that will be why.

Update, 7:45p: Dade's last 2 blood gas checks show his CO2 in the desired range.  Dr. Anderson came by and told us that if he holds up tonight, Dade will have his cannulas removed tomorrow.  Leaving them in feels like a safety blanket, but they could allow air or a clot to travel to his brain or heart if not taken out.  They're staying in tonight just because of Dade's prior happenings when he came off ECMO the first time.

Update, 9:15p: Last couple of blood gas checks have been good!  Hanging in there like a champ.  He was a little sweaty, so the nurses changed his bedding and pulled off a couple of blankets to help Dade cool down. Seems a good bit more comfortable!

Daily Status UpDade - Wednesday, 8/20/14

Before I jump into today's update, I need to clear something up from yesterday's post.  When I said that they were testing Dade to see how he did on his own, I failed to make clear that he is still on the ECMO machine, but is just receiving minimal assistance from it.  They've turned it down as low as they can without taking him off, and were watching to see how he did with his CO2.  Mrs. Williams, if you're reading, please don't count off!  I promise I'll be more clear next time :) 

That brings me to today's big news: Dade has done a great job holding his CO2 levels, so barring anything crazy tonight, he's coming off of ECMO tomorrow!  They'll remove the ECMO machine, and will turn up his settings on the ventilator.  They'll also leave in his cannulas (tubes in his neck where the machine connects) just in case he needs to go back on.  It's simultaneously exciting and terrifying. We've been trying to get back to this point for almost 3 weeks, and of course want him off of it as soon as possible, but things didn't go so well last time.  However, Dade is 3 weeks stronger now, and isn't 2 days past a major surgery where his insides were literally rearranged, so we're claiming that it will be different this round.  That doesn't mean we won't have some rocky days after this - we absolutely will - but we're praying for God to keep Dade off the machine! Another thing to note is that his room will go into virtual lockdown for awhile as he goes back under Minimal Stimulation orders to keep him from getting riled up.  That will change once he's more stable, but until then, his room will be a very quiet, very calm cave as the nurses put it.  Tara and I won't even be able to interact with him much while he's stabilizing. That also means that Dade can't have visitors for a little while.  Again, we're not sure how long that will last, but we'll let you know when that embargo has been lifted.  The way we see it though, we'll give him any amount of time he needs without stimulation so that we can have much, much more time with him later.

I'll update tomorrow as I can, but please understand that tomorrow is a big, big day in this whole process, and that the next several days will be critical for Dade. We may be a little hard to come by as a result.

We love you all!

Daily Status UpDade - Tuesday, 8/19/14

Today I am thrilled to report that Dr. Anderson thinks the bleeding I talked about in yesterday's post has stopped!  It never ceases to amaze me how these people can tweak this, add that, measure this, and order something else to solve these problems.  I thank God each day for every one of them! 

We had a tense morning and ended up at Children's much earlier than normal.  To gauge whether or not Little D was bleeding internally over night, the nurses were measuring the diameter of his abdomen. When we left last night, it hadn't increased.  However, Tara called in the night after an intense thunder storm woke us, and we found out that he had swollen by 2 cm.  We were worried by that because the best way to stop any internal bleeding according to Dr. Anderson would be to take Dade off of ECMO, ready or not, to remove all of the blood thinning drugs he has to have while on it.  Since he's not quite ready, you can imagine our distress in facing that catch-22 - leave him on ECMO and let him bleed, or take him off early to stop the bleeding.  We fortunately didn't have to worry about that, though.  The true cause of the swelling appears to be something much, much more innocuous, thank God - constipation.  Dade has been slowly but surely getting more and more milk as he shows tolerance for the current dose, but it never dawned on us (or me at least) that it had been a couple of days since Dade had had a dirty diaper... That'll do it.  The little guy has burned through at least 4 diapers today, and his abdomen has returned to normal!!  My youngest sister once told me that we'd talk about poop a LOT as parents of a newborn, but I never thought I'd be elated to have that conversation!

Now about that ECMO. What I said yesterday still stands: we need to get off of ECMO, and to do that, Dade has to maintain his carbon dioxide levels at an acceptable point.  Please don't stop praying for Dade to be able to do just that!  The ECMO circuit is again showing signs of giving out (it's now 8 days old), so they're trying Dade out today to see how he holds those CO2 levels on his own.  His trial began about 10 this morning, and so far so good.  Please, please pray that he can keep it up! Depending on how he holds those levels by himself, my guess (and therefore subject to change) is that we'll either get a new circuit if he can't, or we'll likely come on off ECMO if he can.  We covet your continued prayers over the next 24 hours.  We're going to learn a lot about what Dade can do!

We love you all!

Daily Status UpDade - Monday, 8/18/14

It's been kind of a long day today.  The bleeding from Dade's chest tube continued, but as I'm writing this, it appears to have stopped.  That means one of two things: 1) the bleeding has actually stopped, or 2) the chest tube has clogged and the bleeding is staying inside rather than coming out.  We're claiming that it has stopped, because all we can do right now and have been able to do this entire time is to depend on God to handle this.  The nurses will of course be keeping an eye on things over night to make sure that is indeed the case.  

The main issue tonight as it has been put to us by Dr. Anderson is carbon dioxide.  Dade is right at the cusp of coming off of ECMO again, which is where we need him to be; he just has to make it over the hump to get there.  To do that, Dade has to maintain his carbon dioxide levels at a certain point.  His X-rays can get better, his heart can shift, but if neither of those things happens, they won't keep him on ECMO; CO2 levels will.  That demonstrates that his lungs are working as they should and are ready to do so without the assistance of the machine. 

That said, our prayer target now (spread the word) is for God to heal Dade's lungs to maintain those CO2 levels exactly where they need to be, and soon.  I don't know what that number is, but He does, and that's good enough.  

I started reading a devotional series from Future Grace by John Piper today about God's promises. The lesson was centered around Psalm 116:12-14.  It begins, "What shall I render unto the Lord for all His benefits toward me?" Piper goes on to say, 

The psalmist’s answer to his own question, "What shall I render to the Lord for all his benefits?” is, in essence, that he will go on receiving from the Lord so that the Lord’s inexhaustible goodness will be magnified.

In the midst of Dade's situation, something I'm having to remind myself of is that it is impossible to ask God for too much. In other words, He will not hit a point where He will throw up his hands and say, "ENOUGH ALREADY!!"  It's not in my nature to ask anyone for anything. That's not pride or arrogance; self-sufficiency is just part of my upbringing.  That's also not to say that I never rely on God, but I think sometimes that switch unintentionally flips to where, in the back of my mind, I feel like I've bothered God enough. God has blessed Tara and I with a wonderful marriage, He's put us in fantastic jobs, He's given us an unbelievable community of family and friends to surround us during this time, and now He's given us this beautiful baby boy who is the cutest thing I've ever laid eyes on.  Even with all of that, I unabashedly call upon God the Father to continue to pour out His gifts upon our little family to heal Dade so that we may take those gifts and magnify His goodness, His inexplicable power, and His faithfulness.  We said at the outset of this that our wish for Dade is that he be an instrument for God's use.  Join us as we continue to ask God for exactly that.  

Daily Status UpDade - Sunday, 8/17/14

Today is Sunday which means for the first time since he arrived, Dade actually had an okay Saturday.  This past week has been slow with no notable forward progress, but the opposite face of that coin is that he hasn't gone significantly backwards, either.  Dade has seemed a little uncomfortable the last couple of days, so that in turn can throw off some of his numbers.  

In previous posts, I've mentioned the gunky blood stuff in the back of his chest and the first chest tube that didn't seem to be draining at all.  Today, however, that tube began draining like a champ.  While that's partially good, it has been draining more stuff than anticipated - a LOT more. This in turn caused suspicion that he might be bleeding from somewhere internally.  However, the docs have checked everything out, and aren't worried about the amount they're seeing drain.  They're putting him on a bleeding protocol tonight to help stem that flow, and have gone up on his sedation a touch to make sure he stays still as possible.  They'll monitor how well that plan works and will make adjustments from there.  We'll see what happens!

Please continue to pray for Dade's world-class doctors and nurses, his increased lung function, and for my and Tara's well-being, strength, and outlook as we learn on the job how to handle this and keep ourselves sane in the process.

We love you all!

Daily Status UpDade - Friday, 8/15/14

Things can get pretty hectic up here in the ol' Children's NICU, so there are times Tara and I realize that it's been a couple of days since we've updated Dade's collective fan club.  Now that I have found a way to update UpDades (say that 5 times fast) from my iPhone, I'm going to attempt to post a new status update at the end of each day to keep every one in the loop!  Time will tell how that intention keeps up, but it's the thought that counts, right? Right.  Let's get to it, then, shall we?

Dade had a rough night last night.  I really don't know how to explain what that means other than to say that his heart rate was jumping around in ways that it hasn't before.  This in turn threw off some of his other numbers like his blood gas concentrations, and forced the nurses to make some adjustments to his ECMO machine to get him comfy.  Another thing Dade has been dealing with this week is fluid hanging out in his chest cavity.  His surgeon, Dr. Anderson, has tried a few more conservative approaches to rid him of the fluid this week to no avail, so after a little ultrasound exploration, Dade got a new, second chest tube this morning to help out.  The second chest tube pulled off a noticeable amount of fluid.  We'll see how much this helps his overall lung function improve, but it certainly didn't hurt anything to get the fluid out! There's a second pocket of fluid that his first chest tube is meant to address, but that pocket is thicker, more gelatinous stuff that isn't flowing out of the tube.  The intent is for this stuff to thin on its own and move on.

Dade is doing relatively well on the ECMO machine.  He's been on fairly low settings all week (i.e. getting low assistance from it), but the docs and nurses have turned those up just a hair so that he doesn't have to work as hard while we're getting this fluid thing figured out.  In the meantime, Dade is resting well right now, and even moved up on his milk intake today!  

Specific prayer requests for today are that his chest continues to clear of fluid, and as always, that his lungs are ever-improving!

Thank you all for your support in the myriad forms in which we have experienced it!  We love you all!

Thank You!

Good Afternoon. Its been a long day up here at Childrens Hospital, but DJ and I have had this on our minds and we just want to say Thank YOU. If you know us, you know that we are diligent about sending THANK YOU notes. This situation is different than any we have ever encountered and so we haven’t been able to get them written as quickly as we normally would. There are so many of you that we want and plan to personally thank. Many of you have us on numerous prayer lists, you’ve sent cards, gifts, food, financial gifts, gift cards, etc. The fundraising page has had many visitors, donations, and precious comments. Some of you have chosen to give anonymously and we are SO thankful to you, whomever you may be. If you didn’t want to share your name on the site, but want us to know, you can email us at tarapstrickland@gmail.com. We would love the opportunity to thank you personally! We have heard from churches, coworkers, past coworkers, family, friends, etc. Again, we are in awe and grateful for all you have done for us. We just wanted to formally say, “Thank you,” and while we know none of you misunderstand, we hope to get notes written as soon as things may slow down!

Super Fast UpDade

Just a quick UpDade tonight as it's time for bed.  Dade had a restful day today, which we were very much thankful for.  He'd been trying to get some rest over the weekend, but his last couple of days have seen him dealing with some bleeding issues (we're talking puddles) from a chest tube incision and his belly button.  In the midst of all that, his ECMO machine had to be switched out yesterday, but Dr. Anderson is pleased with how he's responded to that so far.  We have one issue that has to get corrected, though.  Dade has some kind of fluid on his chest that is holding up his progress.  He has a chest tube that's supposed to drain it, but it isn't working.  Dade will have a procedure tomorrow to try and remove that fluid.  It sounds pretty routine, but being on his lung bypass, he is being given a blood thinner to assist in that.  Any procedure involving an incision therefore carries a risk of more bleeding.  

If we can get that fluid taken care of, Dade should be able to move closer to getting off of ECMO.  We're anxiously looking forward to his being able to get off ECMO and STAY off of it; that's one huge step closer to being out of the woods!!

We ask your prayers for a smooth, bleeding-free procedure tomorrow, and for Dade's continued improvement!  

We'll update tomorrow when the procedure is completed.

Just Say No to Crib Mobiles

Saturdays have already proven to be one of the busier, more eventful days that we would prefer not to have. As one friend said, "Dade is a Saturday Stuntman!"  I had truly hoped that Dade would be atleast 15 years old before I was worried so much on a Saturday night. He has had a busy week being back on ECMO. This Saturday was supposed to be a "rest day," but Dade ended up having some bleeding from his new chest tube that was placed on Friday. His chest tube from surgery was not draining properly and we found had clotted, so they replaced it. Saturday, they repositioned Dade and the bleeding started and wouldn't stop. The surgeon we have gotten to know all to well, Vince, came to stitch up our little man around that site to make it stop, and it did. We left very late last night once we knew the site was corrected and that Dade was much more comfortable. He was sleeping so well.

He is now moving his hands close to his mouth almost like he wants to suck his thumb. The nurses gave him a pacifier in the night and he is the most comfortable we have seen him in days. He is snug as a bug and seems to love his paci. DJ and I have taken turns changing diapers, taking his temperature, and taking a sterile qtip and dipping it in my breast milk to put in his mouth. He continues to be fed 1cc of breast milk every 6 hrs through his feeding tube, but he seems to like the taste of the milk in his mouth too. Dade is tolerating it well in his little tummy! We are very excited that the pumping is paying off for him. When we got to the hospital today, one of the nurses had downloaded the Lullaby Pandora station on her phone and it was wrapped in a glove on his little bed. He seemed to enjoy the music and again seemed so relaxed. That nurse, Nancy, encouraged us to also bring some sort of mobile for him to look at as he has been more awake and alert lately. We love being able to look at him, talk to him, read to him, and just see his precious blue eyes.

 DJ and I made an afternoon Target run to get a few things, including the mobile for Dades room.  We hung it over his bed and turned on the music.  He had been so calm and peaceful all day, but that got his blood pressure up and he didn't seem to be fond of the turtle, starfish, and other sea creatures hovering over him. We immediately took it down to see if that may help and sure enough, his blood pressure went down.  Epic fail on our part, but atleast we took it down and kept the receipt:)
Our days in the dark and quiet hospital room are long, but we wouldn't be anywhere else! We are so in love with this little boy that God has given us!  Many friends have encouraged me to "not be so strong," but I can assure you, I cry on a daily basis.  I don't ask God why, but it is excruciating to see any child, much less your own hurting, mad, and crying, but not being able to hear him because of the ventilator.  We cant just scoop him up and console him like we want to.  There is NOTHING that we can do to make him better.

Its been a busy week of ups and downs.  We have seen good xrays that give us hope that he may be ready to come off of ECMO and then Saturdays/Sundays that were discouraging.  This condition is best described as a roller coaster and its truly one step forward and two steps back.  His "good days" can change within a matter of minutes.  We have loved having friends and family come to meet him and visit with us.  Please call and ask when would be a good time to come, but always know that if its not a good day for him, we may not have visitors that day.  The nurses told us this weekend to limit guests to 20-30 minute visits for everyones sake.  The room where he is can get pretty crowded with two nurses, DJ and I, Dade and all his machines.  Also, its an ICU unit and visitors in general need to be limited.  Please continue your prayers through this journey.  I keep asking God to NOT let me miss whatever he is trying to show and teach us through this.  I have NEVER been a fan of roller coasters and certainly don't like the one we are on, but we know there is a reason for each day we are living through this.  Dade is one lucky boy to have all of your love, support, and prayers!    

Some Pictures from the week! This was today getting some good sleep and liking the new paci!

                                                     DJ reading "Green Eggs and Ham!"  

                                                     DJ's wedding band on Dades big toe

Moving in the Right Direction

Now that everyone is finally caught up on the events leading up to today, I'm thrilled to report that Dade had a great night last night, and a great day today!  Two things we were concerned about yesterday were fluid that had built on his good lung, and a pneumothorax that had developed after he went back on ECMO.  These things weren't unexpected and are actually typical when going on ECMO, but they still needed to be taken care of.  A pneumothorax, for those of you like me, is a pocket of air in his chest cavity.  Why we can't just call it a pocket of air in his chest cavity is beyond me, but I digress.  Dr. Anderson and company speculated that the pneumothorax could have been a contributing factor to Dade having to go back on ECMO, though that isn't definite.  It's a moot point now though, because Dade's X-ray from early this morning showed that his good lung had begun reinflating and pushing out the fluid, and that his pneumothorax is gone!  Needless to say, we were very relieved to get that news, and to know that after a long, tough weekend, Dade is slowly moving back towards his old self - the one that doesn't know how badly he's supposed to be doing!  Over the next few days, Dr. Anderson would like to see his heart continue to migrate to the left of his chest, and to see that right lung continue to aerate.  If you want a specific prayer request, there you have it! I imagine that after the events of last Saturday, they'll be much more cautious when taking him off ECMO this time, though that's not to suggest they were under cautious the first time.  That said, Dade is continuing to show baby step improvement on his ECMO and ventilator settings, but no there's indication yet on when he might be ready to try again.  We aren't going to rush it.  We tell him every night when we leave to keep up the good work!

Another bit of exciting news is that if he seems up to it, the nurses will start giving Dade very small trickle amounts of breast milk in the next day or so to start priming his digestive system.  We're miles away from bottles just yet, but we absolutely love any step however small in the forward direction.

We also continued to build Dade's library today.  He's now the proud owner of his own copies of The Cat in the Hat, Green Eggs and Ham, and Fox in Socks.  Tomorrow we'll bring him a few books that his Uncle John, Aunt Sarah, and cousin Anna McWilliams gave him, as well as his copy of Where the Wild Things Are that I've been keeping for him since before he was born.  I realize he can't yet grasp the nuance of Sam I Am's struggle to teach the world about delicious-but-weird-looking pork and poultry products, but it gives us something fun to do with him!  He already has a copy of On the Night You Were Born that I tried to read to him last night, but I teared up after the first page.  We're going to save that one for later!

As always, thank you all for your love, support, and prayers.  We are all three overwhelmingly blessed by the community that has developed around Dade.  I can't wait to see what God is doing with this little human.  

We love you all!

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!