To answer a few questions...

Now for a totally different aspect and some different emotions...
First of all, let me say that I am so grateful for DJ's posts and the way he explains what we are facing and how we are dealing with it. I am clinically minded and tend to be a little bit more emotional so my posts will be different and not as long or as informational. I'll answer some questions I've been asked and explain how "Mama's" doing.

As most of you know, in November 2013, we suddenly lost my step mother of 30 years.  She was cooking dinner, collapsed in the kitchen and died of a heart attack.  Twenty two days later, my grandfather died. 7 weeks later, my uncle died of Cancer that had just been diagnosed 6 weeks earlier.  When we found out we were having a baby, I immediately thought, this is our families rainbow after all the storms and grief.  Then we learned about Dade's condition. I remember texting my Dad and saying that "I thought Dade would be our hope and sunshine after the storm."  My Dads response was perfect! He said "He still can be!"  I have days or moments of doubt, but overall we are very optimistic and get so excited about our days to come with Dade.  I am finally showing and have a "baby bump."  Its feels more and more real everyday.  I smile and "show him off" proudly, but I'll be honest.  Its hard when my patients ask "Hows the baby?" Its not for them to worry and get concerned about, so I have to smile, knod my head, and say "he's great."  Now, to address your questions and concerns.

SHOWERS:
Several friends/family members have asked about hosting showers for us or when they will be.  Our support system is unbelievable and we are SO grateful you'd even offer! We did have two showers planned for June and July, but after this last appointment and learning what we have, DJ and I agreed that maybe we needed to wait on those.  The practical side of me knows that we have NO clue what size he will wear or what his needs will be physically/mentally so we don't want you to buy things that we aren't able to use.  He already has many clothes that we have bought and his grandmothers and aunts have been excited to buy for him.  When we have a green light that we are headed home, we plan to have a huge celebration/shower and can register at that time for what we will need.  I hope that makes sense.
The other side of me is sad that we don't need to do showers right now.  Every new mother gets excited about a celebration for her new child and has dreamed about sharing that time with family and friends.  The "normal" picture of pregnancy, showers, delivery, and hopping in the car seat to go home two days later has been greatly transformed for us.  To just be completely honest, its heartbreaking.  The excitement that began with the pregnancy and finding out such amazing news, has gone to "Do we even decorate his room?" The normal wonders of "What will he look like?" or "What sport will be love?" have gone to "Will he be able to play any sports?" "Will he be able to feed himself?"
We are decorating his room, but many other long term things, we just have to put on hold.  DJ's mother is making Dade's bedding and has been precious about waiting until I was ready to move forward with this. My Mom and I will soon clean out his drawers and closet to get everything ready to decorate! Its been fun picking out fabrics and colors to make his room unique.  I want to pass his room and smile, awaiting his arrival in his crib one day.  I want to sit in there and pray. I want to sit in there and cry on the days that I just worry or get sad.

HOW ARE YOU FEELING?
I can say that other than the week with Meningitis, this pregnancy has been wonderful! I may not feel that way when its 95 degrees in July and Im waddling, but so far, I can't complain.  I have had some sickness, but am now on a new medication that has been a lifesaver! His condition has no effect on my body or pregnancy.  I am feeling him move a good bit and its the best feeling in the world. I laugh and cry when he moves a lot. I often times put DJ's hand on my stomach wherever he is moving so we can feel him together. Its unbelievable!

HOW LONG DO DOCTORS WANT YOU TO GO BEFORE DELIVERY AND DO THEY SUGGEST A C-SECTION? For his lungs to develop to their fullest ability, the doctors want me to go to my due date, August 12, if possible.  Unless there is any distress for him or myself, I will go full term and all the doctors have strongly recommended that I have him naturally(with meds of course).  This would allow any excess fluid from his lungs to be pushed out as he is delivered through the birth canal.  They have also said that the recovery time for me will be quicker with a natural birth because they know how eager I will be to get across the breezeway to Children s hospital to be with Dade and DJ.  The thought of it all is so scary, but I can't explain how grateful I am to be informed now and to be prepared as to what this journey may look like. When I'm prepared, I can focus and handle things much easier. We have been given very upfront and honest details about how this can go, but we are determined and ready for the fight.  As DJ said, we are stubborn and we know that he will have the determination that we both have to get through however long this road may be.  Our boxing gloves are on!

WHAT CAN WE DO TO HELP Y'ALL?
I can say without any hesitation that prayers and "snail mail" put a big smile on my face.  Other than an encouraging word, a "praying for you, DJ and Dade," and a hug, I can't think of anything that we need right now.  Hugs do make me cry so just be prepared.  My boss hugged me the other day and that opened the flood gates.  We have gotten several cards that brighten our day and he even got some precious Easter gifts that were too sweet.  Last week I got a Facebook message from a complete stranger.  She told me that she was praying for us and had heard our story when she was getting her hair done the other day.  I get cards from a church we aren't even members of that is signed by their prayer team members telling us that we were prayed for that day.  As DJ has said, we have NO clue what God is showing us in this, but we know its something BIG.  There are people all over praying for us and letting us know that they are here for us.  When we need something, I promise we will let you know personally or in the blog.  Right now, we are still going along as normal until we have a reason not to.  Our employers have been more than supportive, loving, and understanding.  Neither one of us could work for or with a more amazing team.  It has been very helpful to be with friends and family when we can or on the weekends.  Any of you are welcome to visit us or we can come see you sometime when DJ gets out of school.  We need that!

Welcome!

Welcome to the inaugural post of UpDades!  This blog is where my wife, Tara, and I will be posting updates on our son, Dade Parker Strickland (Updates + Dade = UpDades.  Clever, huh? :).  You'll likely also occasionally see some more personal posts from Tara and me as we navigate this path we've been set on.  This first post is meant to orient those of you just joining us, and to answer a few questions that I'm sure may pop up for some. Since it is an introduction to this whole situation, it's long.  Grab a cup of coffee or your personal reading beverage of choice, and settle in!

What Exactly Are You Updating Here?
In December 2013, Tara and I found out that we would be blessed with our little guy in this coming August.  As of the writing of this post, we're about 25 weeks into the pregnancy.  In March 2014 following Tara's third bout with viral meningitis and a week-long hospital stay, we went to her normal OB visit at St. Vincent's here in Birmingham for Dade's 20-week ultrasound. The doctor spotted an irregularity in the images, so she sent us to see a specialist at the Maternal and Fetal Medicine (MFM) Clinic at UAB as a precaution.  If Tara hadn't just had meningitis, the doctor said she wouldn't have even been concerned with it.  I never thought I'd say this, but thank God that Tara had meningitis!  Our visit to UAB revealed that Dade has a birth defect known as Congenital Diaphragmatic Hernia (CDH). That diagnosis has changed things for us, because it means that Dade has some hurdles to clear when he gets here.  This blog is meant to serve as a centralized, go-to location for updates and information that we receive regarding his diagnosis from now until Dade is born and after.   

What is CDH?
This is exactly the question we had ourselves when we received the news. Neither Tara nor I had ever heard of the condition, much less understood its implications for our son, so I'll give you the crash-course explanation as it was explained to us. The diaphragm forms during the first trimester of pregnancy, and dictates the position of the other organs as they develop.  In the case of CDH, the diaphragm doesn't form completely and leaves an opening for organs to migrate around the abdominal and chest cavity. Any or all of the stomach, intestines, and liver can migrate into the chest cavity.  This is a problem because these extra organs in the chest cavity crowd the heart and lungs, hampering their development. As most of you know, babies have enough trouble with lung development even under normal circumstances, so CDH only complicates the situation that much more.

What does this mean for Dade?
It's important to note at the outset that CDH cases are like snowflakes - every case is different, and no two are the same.  That said, there's a LOT that we just won't know until Dade is born.  On April 16th, Tara and I met with the Interdisciplinary Team that will be handling Tara and Dade's care from now on.  The Team is comprised of doctors from the UAB MFM Clinic, and the surgical group at Children's Hospital specializing in CDH and related procedures (more on that in a minute).  Dade's particular case of CDH falls on the moderate-severe end of the spectrum.  The hole in his diaphragm is big enough that his stomach, intestines, and possibly a 1/4 of his liver are all currently residing in his chest with his heart and lungs.  This practically guarantees that he's going to have some lung trouble when he gets here.  Again stressing that each baby's situation is extremely case specific, Dr. Anderson (Children's surgeon) told us that post-birth will look something like this:

1) Almost immediately after Dade is born, they will insert a breathing tube.  As Dr. Anderson put it, this more of an urgency than an emergency, so he wanted us to be prepared for that. This is to ensure that no air accidentally enters his GI tract.

  

2) The doctors will do all in their power to not deliver Dade until 40-weeks for lung development purposes. As previously mentioned though, his CDH ensures that his lungs will not be fully functional when he gets here, so he will immediately be put on a ventilator to help him breathe.  There is also the likelihood that his underdeveloped lungs will introduce any or all of 4 problems including, but not limited to high-blood pressure, and insufficient oxygenation of his blood and organs.  

3) The goal with the ventilator is to get him down to a certain percentage of ventilator assistance where the doctors feel comfortable doing surgery to repair the CDH.  There is no "magic number" on the percentage here; it will depend on Dade's responses. The reason for this step is that Dade's lungs will actually get a little worse during the repair surgery.  His setting on the ventilator pre-surgery has to be low enough that they have some wiggle room to put it higher post-surgery. Too high of a setting on the ventilator will damage his lungs since they won't be functioning at 100%.

4) I mentioned the potential ancillary health issues he may encounter due to his under-developed lungs.  Suffice it to say that they're all related to each other and ultimately tie to incomplete lung physiology.  What's important is that whatever conditions do develop, they all have to be overcome before he's considered strong enough to undergo surgery.  Hopefully he'll have enough lung development that with the help of the ventilator, they can continue to grow and move towards normal function.  There is a fairly good chance, however, that they will not have enough development given the severity of his CDH.  

5) If the ventilator on its own does not take enough stress off of his lungs to let them grow and overcome any of those aforementioned ancillary issues, Dade will have to undergo surgery for installation of Extra Corporeal Membrane Oxygenation or ECMO.  This is essentially a lung bypass that will send his blood out of an IV in his neck to an external source for oxygenation, then back in through another IV in his neck.  The difference in this scenario is that while he's in surgery for ECMO, Dr. Anderson will go ahead and repair the CDH by moving all of the organs to their proper location, and using a synthetic patch to repair the hole in his diaphragm.  That way, Dade won't have to recover from 2 different surgeries, and the ECMO will aid in recovery from both since it takes the workload off of his lungs completely.  To put it plainly, ECMO is a life-support measure.  We'll know shortly after he's born (24-48 hours possibly) whether or not the ECMO will be required.  Dr. Anderson said that once on ECMO, babies show improvements in a few weeks.  If we hit the 4-6 week mark with no improvements while on ECMO, we will have to make certain decisions as to whether or not continuing the procedure would needlessly prolong the situation.

6) Assuming that Dade makes it to his CDH repair surgery whether by improvement on the ventilator, or in conjunction with the ECMO surgery, he has roughly a 50-60% chance of surviving the surgery itself.  Post-surgery prognosis is another of those case-specific factors that Dr. Anderson wouldn't even venture a guess to.  His survival chances after surgery are purely a function of his condition at the time, so we won't know until then.  Dr. Anderson said however, to plan on Dade being in Children's Hospital a minimum of 3-6 months, and that it could be longer.

Why use a blog for updates?  It seems so impersonal.

I can understand that sentiment, but there are a few reasons that we have chosen to start a blog for our "UpDades," both practical and personal.  From the practical side, it just took me about 830 words to fully relay Dade's situation - this stuff is complicated and there's a lot to cover.  Tara and I are blessed with a HUGE network of family and friends, but with that blessing comes the fact that Tara and I have a HUGE network of family and friends that we need to inform.  We've chosen to use a blog so that everybody has the same information, and so we don't unintentionally leave anyone out on the E-mails we've sent out up until now (that happened a few times).

From the personal perspective, this isn't information that we want to have to repeat and explain 10 times in an afternoon, but we know so many people want to know what we heard that day, and we want everyone to know what's going on.  Receiving news like this is emotionally exhausting.  I'm sure you can understand when I tell you that saying it over and over is only more so.  A blog lets us keep everyone informed while giving ourselves time to simply be quiet, recharge our batteries, and be together.

Another reason for this blog is a little selfish, but simply put, it's good for me.  I'm a Civil Engineer and a high school teacher; I'm not at all medically inclined.  I'm a personality type that has to fully process information that I'm given before it can sink in.  Writing all of this helps me do exactly that, so I guess you could say this is my own little piece of therapy.

So what now?  What can we do?

Unfortunately, there's nothing to do right now. The pregnancy will continue as planned. Dade's birth is when things really kick into high gear, and we just do not know what that will look like until he's here.  I know a lot of you feel helpless; so do we.  This is the hand God has dealt to us right now, so we're playing it the best we can.  We're doing all we can to plan and prepare, but again, we just don't know what life will look like when Dade is here with us. We love you all and thank you so very, very much for your calls, cards, and prayers!  We know we can call on each and every one of you whenever we need to, and trust me... we will need to.  None of this means that we don't want to hear from you, or that we don't want to talk about what's going on; don't ever feel like you need to avoid the subject with us.  Tara and I talk about it constantly and openly since it's very much a part of our lives, and is a huge part of Dade's life to come.  

In closing (I know... about time, right?), do not at any time misunderstand this and future posts: Tara and I are in no way giving up on Dade either now or in August when he's born. God gave us this awesome little boy out of nowhere, and He gave him to us for a reason.  I won't pretend to understand His plans with Dade and his CDH, but I'm looking forward to understanding and to growing as a couple, as a family, and as Christ-followers.  Dade comes from a long line of hard-headed determination and I pray everyday that that trait manifests itself as soon as he joins us and begins to climb this mountain with us - ALL of us - right beside him. We've heard 100% what the doctors are telling us, and we do not in any way downplay the seriousness of Dade's situation.  However, statistics are just numbers, and there are outliers in every data set.  Our prayer for Dade is that in this and every other adversity he faces, he will be an outlier; that he will be unusual and an instrument of God's power. Until God Himself forces us to do otherwise, we are claiming that Dade will be with us to celebrate many, many birthdays, to learn the wonders of Indiana Jones, Super Mario Brothers, LEGO, and Auburn Football, and to fight Molly (our dog) for his stuffed animals and blankets.  

While I don't necessarily endorse Lance Armstrong, a quote of his resonates loudly with me in this situation:

"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them.  When you think about it, what other choice is there but to hope?  We have two options, medically and emotionally: give up, or Fight Like Hell."

And with the power of God in us, behind us, and before us, fight we will.