The End of the Ride

I don't even know where to begin with writing this post.  I never thought I would have to write what is about to follow.

Rowan passed away in my arms Wednesday evening at 6:34 after spending the day fighting for his life.  The day is a bit of a blur now, but I will try and do my best to explain the day's events because I think it will help me to get it all written down.

Wednesday morning, John and I got up and around and after a quick breakfast run, headed to the hospital.  As we pulled into the parking garage we got a call from Rowan's nurse practitioner, Adriane.  We knew that something was up at that point because they really only call if there is something bad to tell us.  Adriane explained that Rowan had had a really rough night.  His O2 saturation had dropped multiple times into the 50s and he was really struggling to oxygenate his blood.  Overnight they had to increase his oxygen levels to 100%.  The doctors ran a bunch of blood tests because they suspected he had another infection.  His urine output had dropped and he also had a lot of edema (swelling).  The tests that they were able to get quick results from showed that his CRP was back up to a 4 and his white blood count was incredibly low.  He also had a lot of immature cells which Adriane explained as sending babies into a war.  We told Adriane that we were in the parking garage and would be right up.

When we got up to Rowan's side we immediately noticed that he looked sick.  He was very puffy and swollen and pale.  Rowan had previously fought off two infections, but through those he never really looked like he was sick on the outside.  Adriane continued to explain and go over his night and said that the doctors would be rounding on him first.  In the mean time, Rowan got another dose of morphine; he had had three overnight because he got so agitated when the nurses would even just open the sides of his isolette.  His sats would drop and he would take a while to recover, so they needed to keep him calm.

The doctors came for rounds and Dr. Sharma explained that they thought that Rowan possibly had an abscess in his abdomen.  When we first got to Children's Mercy, they had noticed a hard nodule in his lower right abdomen, but tests hadn't really shown anything and they thought at the time that it was just muscular.  Now, they were thinking differently.  So they drew some blood to run some blood cultures and see if they could find the source of infection.  They also ordered another echocardiogram to check his PDA valve since his oxygen needs were so high, an xray to check his lungs, and an ultrasound to check the bump in his belly.  They decided to start him on two general antibiotics since it was clear that he did have another infection.  Rowan's urine output had also all but stopped and he had really low blood pressure which they kind of attributed to him retaining so much fluid and having poor oxygenation.  They gave him another dose of diuretic in hopes that it would help flush some fluid out of him.  They also started him on a morphine drip because they knew he wouldn't handle all of the scans that they needed to do very well.  Both the doctors and John and I thought that this was just going to be another infection that we would treat with antibiotics and we would be good to go.   

The morning continued and Rowan's oxygen saturation continued to run in the 70s even though he was on 100% oxygen.  This was very concerning because even though he would occasionally have dips into the 70s, he always recovered and got back into the 90s where they wanted him to be.  John and I ate a quick lunch from the cafeteria and stayed by Rowan's side because our poor boy was just not acting like himself and we didn't want to be too far away. 

At around 2:00, they came to do Rowan's echo and then they followed that with the other scans.  The doctors were beginning to get results back from some of the other blood tests.  The test for viruses was negative, but the sample from his trachea that they were culturing was already testing positive for some bacteria.  The nurse said she suspected that he possibly had pneumonia. We knew he already had some fluid in his lungs (it was showing up on x-ray) but she also suspected that there was some bacteria in there and said that it can happen when babies have to be intubated for long periods of time.   They wouldn't know for sure what type of infection he had until the cultures had grown for 48 hours. 

At about 3:00, things began going downhill very quickly.  After a morning and early afternoon with fairly consistent stats, Rowan began having o2 desaturations in the 50s pretty frequently.  His color was really bad at this point and he turned blue several times because he wasn't getting enough oxygen in his blood.  Dr. Sharma (the neonatalogist), Adriane, the resident, the infectious disease doctors, the pharmacist and the respiratory therapist came to Rowan's bedside to try and figure out what they could do for him.  They began trying new antibiotics and other fluids to help his pressures.  They also started getting his results back from his scans.  His abdominal ultrasound, Echo, and head ultrasound all looked clear, but his x-ray showed that his lungs were collapsing. 

The next 2 hours were a complete blur.  There were so many people there trying to stabilize and help Rowan. At about 4:30 they decided to give Rowan a paralytic to keep him from moving because even the slightest movement would cause his heart rate to plummet and his o2 sats to drop even further.  At one point they even had to bring the crash cart over because his heart rate dropped to below 80.  After getting the paralytic, Rowan did stabilize a little bit, but he was still not doing well.  During this time, I stood by Rowan and looked in on him.  I couldn't hold his hand because it would make him desat, but I watched him through his isolette and even though he was heavily medicated, he opened one of his eyes and looked right at me.  I knew at that point we were losing him because his look told me he was tired and just couldn't fight anymore. 

They got another blood gas at 5:00 and when the nurse went to get the results, she actually thought the lab had messed up and given her the results for the wrong baby.  They results were not very good, but they thought that it was either a mix up in the lab or that it was due to him having poor blood circulation to his foot where they drew the blood.  His blood gas at 2:00 hadn't been great, but it wasn't too concerning, so they thought it was an inaccurate test. So they did another blood gas from his arterial line.  A doctor (not Dr. Sharma, she had to leave for a meeting) brought it back and unfortunately the results were in his words "very bad."  In a matter of 3 hours Rowan's condition had gone from not great to very critical.  The blood gas showed that Rowan had very high acidity levels in his blood. Adriane explained that because he was having a hard time oxygenating his blood, his muscles and organs were trying to work without it.  Just like when you workout, the muscles and organs were producing lactic acid as they were trying to work.  This lactic acid was basically causing Rowan's organs to begin shutting down.  They explained that they could give him some medicine to try and bring the acidity levels down, but the doctor had never seen levels so high in his 15 years as a neonatalogist.  They told us that we should begin calling in our families because the medicines that they were giving him needed about 24 hours to begin working and they didn't think he had that much time. 

At about 5:45, Rowan's heart rate dropped into the 50s.  They began talking to us about resuscitation and John and I heard the words that no parent ever wants to hear; that our son was dying.  Rowan's heart rate did get back up into the 70s, but they told us if it dropped below 60 again that they could do chest compressions to get it back up but with him being so little, the pressure would probably do more harm than good.  They also gave us the option to switch him back to the conventional ventilator and just let us hold him.  They assured us that he was in no pain and John and I decided that we just wanted to hold our little boy so that he could pass in our arms.  They got Rowan switched to the other ventilator and then I was allowed to pick Rowan up and we walked with machines in tow to a private room.  They took him off of his heart monitor, but kept the ventilator and IVs going.  We were given time to be with our boy.  We both got to hold him and at 6:34 they came to listen to his heart and didn't hear anything.  Just a couple of minutes before that, John had given him back to me to hold and a very relaxed and peaceful look spread across Rowan's face and I knew that he was gone.  He had passed away peacefully in my arms without any pain.

Our families and our pastor came to the hospital and everyone got to hold him and say goodbye.  At around 10:00, I gave Rowan a bath and we read The Little Engine That Could one last time.  At about 10:45, we said goodbye to our sweet boy, handed him to a nurse and left the hospital without our baby boy.

Nobody knows for sure what happened and Dr. Sharma, who was our main doctor the last two weeks, came back to the hospital from her meeting and was visibly upset that he didn't make it.  Everything happened so quickly and even though the medical staff did all they could, it just wasn't enough.  We gave the hospital permission to do a chest and abdominal autopsy so that we can hopefully figure out what happened.  We know nothing will bring Rowan back, but if we can maybe help another baby in the future that might be in the same situation then Rowan's death will have had a purpose. 

John and I never thought we'd have to bury a child, let alone two in the last two years, but we take comfort in knowing that all Rowan ever knew was love.  He was loved by so many people, many of whom never even met him.  He is so deeply missed by John and I.  We spent 36 days by his side and though that is not long enough, we are thankful that we had that long with him.  Rowan fought so hard.  He beat two infections, but this third one was just too much for him.  He tried so hard to fight it, but he was just too little and too tired to beat it.  He is now running around in heaven with his big sister, Hope, and we take comfort in knowing that they will both be there waiting for us when our time on Earth is over. 

Every time we left Rowan's side be it for lunch, dinner, or to leave for the night, John would give Rowan a little lecture.  He always told Rowan to "Listen to your doctor, listen to your nurse and stay in bed."  Well, Rowan listened to his doctor, listened to his nurse and he stayed in bed until the very end. 

Rowan, you are no longer held down by tubes or wires, so fly high my sweet boy.  We'll see you again someday.

** Funeral services for Rowan will be held on Monday, June 6 at 10:30 a.m. at the Wamego First United Methodist Church.  A lunch will follow and then Rowan will be laid to rest next to his sister at 1:30 p.m. at the Leonardville United Methodist Cemetery just north of Riley.  All who loved Rowan are welcome to attend. **