THINGS CHANGE

Things change. My entire life I have welcomed change, it is my personality. It’s part of life. It’s much nicer when you have some manner of choice over such matters, though. But things change.

Perspective. It can change very slowly over time, or it can change immediately like an earthquake. For me, it’s always been one of those things that changes very slowly. For instance, my perspective on many theological issues changed very gradually throughout my life (and will continue to, I’m sure) with education, conversations, both positive and negative experiences, etc. I have never experienced anything in my life that caused me to change my perspective abruptly. I can no longer claim that.

Our little boy, Brock Jacob Morrow, was born November 26, full term at 8lb 5oz. His two older sisters (Brynlee, 3.5 and Brielle, 19months) were also born 8+ pounds and incredibly healthy… but they were totally bald (in a beautiful way, of course)! Brock was born with a full head of brown hair! Brynlee and Brielle were in love with him before he was born, but our family’s love for our only son is, as anyone’s would be, mountainous! Even sweet little Brielle, though she speaks only a few words, and is usually very rough with toys (being 1.5), would go up to Brock in his little bassinet and gently rub his tummy saying “sshhhh…..ssshhhh….sshhhh.” Brynlee is always ready to lend a helping hand. Such angels. Our church family, Grapevine church of Christ, threw Taryn an incredible baby shower that left him wanting for nothing, and had a superhero flare about it! Our first 12 days with Brock after he was born were completely magical. Life couldn’t be more perfect. Our house was filled with hugs, kisses, laughter, warm fires, s’mores, and cuddles in the rocking chair. All through Thanksgiving, we were all overwhelmingly THANKFUL for our perfect birth, and our perfect baby boy. His middle-name-sake, Jacob, is my favorite Bible character. Such depth and meaning to His life! “Israel” he was renamed, after his mysterious, inexplicable night of “wrestling” with God. “God Strives”- Israel means. Jacob was blessed and a new identity was given to him because he REFUSED TO LET GO OF GOD. (Read this story at the end of Genesis 32.)

Then the earthquake hit. Things changed, very quickly. Our current life is filled with wires, sounds of beeping machines, tubes, papers to sign, and an intense amount of worry and heartache. The five of us came home Sunday evening, December 8^th, after helping our church family wrap gifts for the Grapevine Santa Cops. We noticed his color was not as pink as normal, so we took his temperature to find that it was incredibly high, high enough to consider the ER. After weighing the option of going to the ER or waiting to see a pediatrician and pay simply a co-pay in the morning, we decided the ER was needed. Taryn took Brock to the Grapevine ER and I stayed home with the girls asleep in bed praying and waiting for an update. Within an hour, the ER Doctors suggested transferring him immediately to a Children’s Hospital. I suggested that Children’s Medical Center in Dallas was the best option because if we were dealing with anything having to do with his kidneys, which we knew before he was born were larger than normal, then Dr. Linda Baker, his pediatric urologist who works there, could have quick access to him. He was put on antibiotics before being transferred, and we walked straight into a room at CMC. (The girls were being watched at our house as they slept by our sweet friend, Hannah Holt). The CMC doctors felt like they needed to do a spinal tap ASAP, but didn’t feel comfortable doing it until his heart rate dropped down. It was hovering between 200 and 240… way too high. His breaths were also extremely fast. They brought in the Medical Emergency Team (doctors from several different fields) to determine how to proceed. The ICU doctor said he needed to go up to ICU, feeling like it was a high probability that he had meningitis of some kind. He was given morphine to see if that helped his body calm down… it didn’t do much. He was transferred up to ICU, put on a sedative, and his heart rate went down just enough to do a spinal tap (or “lumbar puncture.”) At the time they were still thinking there was a greater possibility of a UTI than anything else, but seeing the spinal fluid slightly cloudy made them lean heavily towards meningitis. The cultures came back positive for Group B Strep Meningitis. It’s a bacterial meningitis with an incredibly aggressive attack on the fluid surrounding the brain. This was a confusing diagnosis to hear, since Taryn’s Group B Strep test at 36 weeks came back negative, and he was only in the birth canal for 5-10 minutes (Taryn pushed him out through a single mighty push during the second or third contraction after her water broke)- which makes it exceedingly unlikely that he contracted it during birth. In addition, a newborn would exhibit symptoms much earlier if that were the case. It is highly more likely that he got the bacteria afterward, and that’s why he didn’t exhibit any symptoms until 12 days after birth. This bacteria lives in many places, on a lot of people’s skin, it’s a very prevalent bacteria, that he probably got somewhere where it easily entered through his nose or mouth, and got into his system then easily penetrated his incredibly thin, newborn, blood/brain barrier.

So the neurologist at CMC put in an order on Monday for an MRI to see what kind of hit his brain has taken because of the bacteria that has been feeding on the glucose in the brain/spinal fluid which his brain needs to use in order to function properly. His MRI was done on Tuesday and the neurologists (after ensuring there is really nothing we could have altered about his birth plan or pre-birth care that would have changed our current situation) filled us in late Tuesday afternoon what the results were. This was a very difficult consultation to bear. They explained how bad bacterial meningitis is on the brain (to prepare us, I suppose) then showed us the images. Most of the outside of his brain (on both sides) is damaged or at least inflamed (bilateral damage). There is also damage and inflammation of the brain cells in the cerebellum. In addition, a significant area on one side at the back of the brain that relates typically to vision is obviously irregular. They said to expect seizures to happen, but hope that they don’t. Seizures are to be expected with the amount of damage his brain has already sustained. Seizures can be dangerous to the brain if they last a prolonged amount of time (they would like them to resolve themselves as quickly as possible, but will intervene with medication (ATIVAR sp?) if they feel like a seizure might not resolve itself within 10-15 minutes. Seizures aren’t a CAUSE of brain damage, but more of an INDICATOR and RESULT of brain damage.

While Taryn was holding him in her arms in the rocking chair, he began having a seizure. I would prefer not to type out details of what that is like, I’ll spare both myself and you. Many reading this may have seen such things; it takes an awesome toll on you emotionally to see a 2 week old going through one, and the toll is intense when the two week old is your own little boy who is supposed to be a little superhero who grows up chasing his sisters and running around the house with a tiny towel around his shoulders as his cape.

They stopped that seizure with the ATIVAN, and began a constant drip of anti-seizing medication called PHENOBARBITAL. They also put nodules all over his head so an EEG could monitor SUB-CLINICAL seizures (seizures that are invisible to the naked eye; no physical changes involved). After monitoring those graphs, the epileptologists reading them determined he is having both clinical and sub-clinical seizures. They started him on an ADDITIONAL anti-seizing medication called KEPPRA (sp?). They kept upping the dose to the maximum amount they are comfortable doing so for his age/weight. As of late Wednesday he was still having both kinds of seizures, with clinical seizures happening almost every hour and one or two subclinical seizures happening between each of those. This is concerning for the neurologists, and obviously for us as well. They are CURRENTLY able to stop the seizures from going too long with the ATIVAR, but really hope they don’t get to a point where they CAN’T stop them with medication.

The neurologists said to expect major setbacks in development and to start preparing ourselves for essentially every kind of therapy in existence even before discharge. Also, Taryn and I will go through CPR training, etc. They said to expect to meet “whatever your out of pocket max is on your insurance plan for this year, and look into a top-notch plan for next year as you’ll meet your limit again very quickly next year.”

Tuesday’s (12/10/13) MRI also revealed, as mentioned, that damage is on both sides, which makes recovery VERY DIFFICULT. Newborn brains have great plasticity and can make new connections quickly when a part of the brain is having difficulty. But when there is BILATERAL (both sides) damage, this is far less likely to happen (perhaps, impossible), making brain recovery very hard. There’s no way to tell from the images how much of the affected cells are DEAD (there are some dead cells in every affected area for sure) and how much of those areas are simply INFLAMED, which means it is starved for oxygen, but not yet dead, and could POTENTIALLY recover. What makes THAT also unlikely is the fact that he has clots in a couple key areas of the brain’s blood vessels that allow used blood to drain to make room for oxygenated cells to get to the rest of the brain cells that desperately need it. It’s like asking someone to who just finished running a marathon, to immediately run ANOTHER marathon with no break or nutrients in between. This is what can lead inflamed brain cells to deteriorate and die, which then causes ITS neighbors to become inflamed and potentially begin a cascading domino effect.

The neurologists want to do another MRI soon to see what changes have happened as far as brain damage or clots (ideally it’s just “the same” and not “getting worse”). However, they also want to keep looking at his seizures that keep happening (more often at nighttime) by keeping the EEG nodes on his head, which can’t go through the MRI machine.

All the doctors (main attending doctor, neurologists, Infectious Disease doctors, etc) also really want to get more spinal fluid from another spinal tap to see what progress the antibiotics are having on the bacteria, and also see what the glucose level in the brain fluid is. Glucose is the energy of the brain cells and low glucose counts are a very bad thing. We want to see high glucose and low (or no) bacteria. So they tried to do another spinal tap on Wednesday evening (12/11), but after two different doctors each tried 4+ times with multiple needles, they had no luck drawing any spinal fluid. This REALLY stinks because doing labs on his current spinal fluid levels could potentially change course of treatment, which we need to happen if it will help at all. They will try again tomorrow. Difficulty could be due to how swollen he is all over his body because of the amount of fluids they are putting in him (for hydration and nutrients, obviously, but also to help keep blood pressure medication up). Oh, and he has been on BP medication twice, and as of late night 12/11/13, was still on it. He was able to get off of it for a while, but they felt it was appropriate to put him back on after a while. If his blood pressure gets too low then that also becomes a major issue (Priority one, actually) because too low BP means organs aren’t getting the amount of new blood they need to survive, and he could go into organ failure, otherwise.

Perspective. Last week, money and health insurance was of great concern for us since open enrollment ends on 12/15/13 for the 2014 year. This week, every conversation about how much this is going to cost us personally and our insurance just seems so trivial when we’re looking at a little superhero who is attached to 2 tubes, 3 IVs, and about 18 wires. Honestly, we really don’t care if we end up homeless and in a cardboard box for the rest of our lives, as long as Brock Jacob Morrow gets to come be in that box with us for as many years as we are. Perspective. Being a minister, the church is a source of hope in the Kingdom To Come and (surprise surprise) often a great source of stress. Ask any minister or elder; this occupation follows you home, it can’t be left in an office or explained on a time-sheet. At this point in our lives though, we would be in dust and ashes without our church family. I now understand why even atheists are beginning to start their own “churches”. I simply don’t want to think about where we would be without the spiritual support of our elders and church family at Grapevine. In addition, my childhood home church where my parents attend in Leander continues to send love and prayers our way. Our previous congregation in Baytown, Lakewood church of Christ, continues to show support and love through our journey. How can anyone walk down this road without the body of Christ reaching out with the hands and feet of Jesus Christ when we need it most? The Church is truly the masterpiece of the Creator. It is nothing but beautiful. It is nothing short of miraculous. I don’t care what it looks like from the outside (or inside), the Church is the Bride of Christ, and He makes it beautiful as he prepares to present Her to Himself. This is profoundly obvious to Taryn and I right now.

With that said, the pain and brokenness of the world is ever before our eyes. All we can pray for is that the Messiah come soon and ultimately and finally do away with pride, do away with every injustice of evil, do away with Sin, conquer death completely, and send Bacterial Meningitis into the depths of the Abyss where it came from and where it belongs.

We are surviving off of your prayers. The adrenaline is gone. Our own physical and emotional strength is exhausted. We get through the day on Autopilot. Every once in a while I read a post of someone praying for us, or someone offering to assist in some way, and for a brief moment the gravity and pain of the situation also shows its grief from the top layer to my inmost being. This is a good thing. It reminds me that, as we are made in the Imago Dei (image of God), God is deeply hurt and suffering with us in this time. Only, he is strong enough to carry us through it regardless of outcomes. May we depend on him. We are not “His strongest soldiers, bearing this burden as a hiker strolls along carrying the weight of his pack- we are crawling, and sometimes (no… often) feel like we cannot move another knee across the gravel. Nevertheless, change continues to happen, and time goes on, dragging us along with it. We are staying in the hotel that our INCREDIBLE elders have furnished for us at night, not because we want to leave Brock for a single second. But the Doctors demanded we get away to replenish energy as, once he gets out of the ICU (crossing fingers) he will no longer have the one on one nurses’ attention and will need extra monitoring- we need to try to conserve energy for that phase in the process, as much as it goes against every fiber within our being to sit on the 4 foot wide couch in his room. It just stinks. We are hurt. I am mad at the injustice and brokenness that inhabits this world, lingering on until the completion and renewal of all creation. Lord Jesus, come soon, not only for my son’s sake, but for the sake of all.

I can’t begin to say thank you enough to every individual that has already held us in their arms from near and from far. Those we know well, and those who are strangers, you are beautiful to us, and for that, the Creator who knit you together is all the more beautiful as well. Immanuel is difficult to feel in difficult times, but we are reminded of His abiding presence through your affection. We ask you help us pray that our little boy do his very best to live up to his namesake and REFUSE TO LET GO!!! We need him to hang on, as we know God is refusing to let go of us, though it’s impossible to see how He is doing so. We are barely hanging on, but pray that as we refuse to let go of God as Jacob did, that a blessing may come forth, even if that means we are crippled forever. We know the blessing that is hidden at this time may be revealed in a way that furthers the Kingdom, though I dread what that means, just as Jesus dreaded in His humanity what awaited Him as he prayed the Will of God triumph over his own emotions. This brings new light to God “loving the world that he gave His only Son.” Wow… unimaginable. God is great. When I am nothing, God is great. Is there anger and questioning in my soul? Certainly. Perhaps in time, though, our hearts will follow the divine truth that our heads are convinced of: God is good.

Things change. God does not.

Sorry this was so long.  I must try to sleep now. We love you with an unending love and gratitude.

Grace and Peace cover you, and beg it covers us too~

Brad and Taryn Morrow