Caleb's City ICU Tour and a New Diagnosis

Our first family photo.

I have been a bit vague about things we have learned about our baby Caleb lately, mainly because there have been a lot of differing opinions. After I had Caleb, we spent 2 days in the hospital and he struggled with hypoglycemia over the next two days. His blood sugar kept plummeting down to 30 and they would tell us to just give him formula, which he hated and would gag and vomit as we bottled it to him (my milk had not come in yet). My friend had just had a baby and pumped for us. We snuck it into the hospital and would syringe it into his mouth as he gobbled it up. Ultimately, this stabilized his blood sugar. Now in hindsight, he would have benefited from some NICU time, but no one even suggested it.

Also, when he was born, there was a big bubble of spinal fluid on his back. This was not something we expected to see since he had fetal repair, but no one said anything about it. No one even suggested we get an MRI or ultrasound of his back or brain. We have since learned that Banner hospitals had no neurosurgeons on call, so Caleb’s care fell through the cracks. This led to a turbulent few weeks.

We brought Caleb home and absolutely delighted him. I couldn’t believe how perfect he was. He was jaundice and was struggling to gain weight so we were at the pediatrician every other day, but this seemed simple to me. After about 4 days home I began having a gut instinct- he was too sleepy, too lethargic and too weak. We would strip him down and take him out in the cold every 2 hours to wake him up to eat and he still wouldn’t wake up. He was like a floppy rag doll. The pediatrician didn’t seem concerned but I know too much about Spina Bifida and I had reason to be worried.

After a visit to the Cardons ER and watching my tiny baby get poked and poked and poked as they couldn’t get an IV or blood for hours, I was beside myself. Finally, he was put on a pulse oximeter and in my arms when I heard the all too familiar red alarms. The medical team came running in to bag him. Was I really seeing this? It’s the wrong kid! This only happens to Miles, not Caleb too. Bryce and I looked at each other with that look. Total defeat.

Caleb was immediately admitted to the pediatric ICU and put on oxygen. I watched him all night as his saturation levels dipped down too low. The next day, he was put under general anesthesia and intubated for a 4 hour brain and spine MRI. For those that are curious, 4 hours is a long time to be under general anesthesia, let alone a 9 day old that was born early. It’s unideal for the developing brain. We had been told the MRI would be 1 hour. I paced the halls waiting for him to return. He vomited all day as he tried to wake up.

A fill-in neurosurgeon came in to read the MRI results to us. Most of it was very familiar from Miles’s readings. Caleb has a severe Arnold Chiari malformation. He has a spinal syrinx the entire length of his spinal cord. The bubble on his back was news though. It wasn’t just spinal fluid. It’s called an “incomplete repair.” Somehow Caleb’s spinal repair had split open inutero and the spinal cord and nerves were bulging out of his back like an unrepaired Spina Bifida child. I have never once heard of this happening to a child who has already undergone fetal surgery.

We were also casually told of some other very serious diagnoses. First, he has Polymicrogyria. This is a condition I had never heard of. The folds of the brain are too small and there are too many. Some children don’t survive childhood. Some live with mental disability and lifelong seizures. The other diagnosis was Heterotopia. That is where brain matter exists in places it shouldn’t. The long term effects can be the same as the Polymicrogyria. We were told not to google it and to consult with a neuropsychologist. These are very serious things to hear on top of some already very serious birth defects.

We were sent home from the PICU with a pulse ox. That night I watched Caleb sating in the 70’s and 80’s and I felt so helpless. I had no oxygen for him and I would watch his little lips turn blue every couple minutes. The next morning I called the pulmonologist with an urgent request for oxygen. He didn’t call me back. I called the pediatrician to request caffeine therapy to boost his brain stem and breath rate.

“I’m very worried Allison. You shouldn’t be doing this all by yourself. Caleb needs a baby doctor. He should be in the NICU.” I knew our pediatrician was right.

Within a couple hours we were being admitted to the Scottsdale Shea NICU in an isolation room since Caleb had already been home. He was on oxygen but still did not seem like a thriving child. After about 3 days, my friend was at the hospital with him so I could go shower. That’s when I got the call that Caleb had tested positive for a UTI and was being emergency transported to Phoenix Children’s Hospital NICU. I rushed back to the hospital to find them attempting IV’s on him. After I watched them miss and blow 5 IV veins and 2 blood draws, they finally did a blood draw out of his artery. I have had this done and it’s incredibly painful. I have never seen a baby scream like that. I put my foot down and said no more IV attempts. So then they gave him two antibiotic shots in his thighs.

As I was in the ambulance taking him to our 4^th hospital in 2 weeks, I was trying to process why all of this was happening over a borderline UTI. No one explained when I asked so I did my own research. The barriers between urine, blood and spinal fluid are very weak in a newborn. An infection can quickly spread and turn into meningitis. They wanted him at a hospital that had neurosurgeons in case they did a spinal tap and Banner still had no neurosurgeons available. Even though our insurance doesn’t cover PCH, we had no choice.

We spent the next 8 days at the PCH NICU, which they are self-proclaimed in “the armpit” of the hospital and they aren’t kidding. The unit was gross. PCH PICU is pristine and I would have much rather been sent to that unit. Caleb was aggressively treated with 4 different IV antibiotics. The night we arrived, it took them 3 more tries to get an IV since Shea had blown so man veins. It was a horrible day. Thankfully, he responded quickly and was able to come off of oxygen (although he still has episodes of desaturations).

One we got home we immediately followed up with our neurosurgeon and he confirmed that Caleb will need another Spina Bifida back repair. He may also need a shunt in his brain soon. The Polymicrogyria and Heterotopia are present but we were told we can worry about that later. My world crumbled as I realized so much of the fetal surgery was done for nothing. Months detached from my family, tremendous pain, tens of thousands of dollars- all to spare my baby from what he will have to go through anyway.

John 10:10 says, “The thief comes to steal, kill and destroy. I come that you may have life and have it abundantly.”

The enemy has been so relentless on my family. He stole precious time with my boys. He killed our hope and he destroyed the people we once were. He won’t let up on us. We have to decide now if we get Caleb’s surgeries in Phoenix or Houston. If Houston, we have to wait several months until we can get new insurance. I don’t know if he has that kind of time. We also don’t know how we can care for Miles when his nursing hours are cut back this month. It feels as though we have to choose between our boys.

Thank God for the second half of that scripture.

Miles vs. Life

Everything can change in a moment.

My best friends, Kandace and Jessica, were in town visiting. We had been at the pool and came home to hang out with my sons. As we arrived, we immediately went to Miles and picked him up to take pictures with him. Miles was all smiles.

Pictures with Miles just moments before the incident.

Pictures with Miles just moments before the incident.

While taking photos, Bryce asked me to help him change the car’s oil in the garage. As I walked out, I heard Miles’s pulse oximeter alarming. Miles alarms so frequently that I didn’t think much of it. There was a nurse by his side so I assumed she knew how to handle it. That moment is frozen in time for me. I wish I had walked in sooner.

After hearing the alarm continue for awhile, I walked in the living room to see my friends standing horrified and the nursing bagging Miles. I walked up to see him blue and lifeless. His oxygen levels were at 3% and heart rate was dropping. I remember yelling for someone to call 911 and I ran to the kitchen and dialed myself. My hands were shaking but I knew I was moving quickly. The operator asked several questions. Was he breathing? Where do we live? How old is my son? Is someone performing CPR? I screamed for Bryce to come in and get an oxygen tank and his face changed as he ran in the house. He knew what was happening.

I was transferred to another operator to repeat the questions. I started crying into the phone. “She isn’t bringing him back! Pease hurry!” His sats were at zero now. The nurse kept saying the same thing, “Come on Miles! Come on baby!” She was shaking his unresponsive body. She asked my friends to flick his feet but they were paralyzed at what was unfolding.

I threw the phone to Jessica and took the ambu bag away from the nurse. I squeezed it and felt no resistance. I began chest compressions. I heard Bryce yell, “Check is trach!” That’s when I look down to see his trach dangling around his chest like a necklace. The nurse had been bagging him for about 3 minutes without an airway. She never checked. For a moment, I thought it was too late. I moved into action.

“His trach is out!” I screamed. I grabbed another trach, opened the package, pieced it together and put it in Miles’s neck. My baby’s lips were purple. His eyes were in the back of his head. Life was gone.

My husband was struggling to get the oxygen tank going. He asked for help and his voice was shaking and cracking. I began bagging Miles while I held his trach in place with my other hand. I stopped every so often to do chest compressions. Nothing. I tried again. “Please come back Miles!” I begged him. Nothing.

The visual of my tiny baby. Purple now. Beyond struggling. Given in to defeat. It is burned in my brain forever.

I thought I heard sobs behind my but I never turned from him.

I slowly saw color enter his face. First blue, then white, then pink. I heard the nurse say, “He is coming back up.” I just continued working on him. He began having a seizure or temors from lack of oxygen. His hands were shaking and he stared blankly.

EMS arrived and flooded into the room. At least a dozen of them. They started assessing Miles.

I asked the nurse to put his old trach ties on. She could not do it. I asked an EMT to hold the trach so I could put the ties on. I got them on quickly but as reality was setting in, I saw how much my hands were shaking. As soon as they were on, I saw how loose the nurse had put his trach ties on and I knew that’s why this whole scenario happened.

Miles had color now but still no life to him. His eyes stared blankly. Was he gone too long? How long had it been? I knew he had been without oxygen for almost five minutes. He must have brain damage, I thought.

Bryce came to our side and said in in the sweetest voice, “Hey Miles. Hey Buddy.” Miles turned and looked at him. His eyes had life!

I heard Weston crying. He woke up to the chaos and probably felt terrified. Jessica brought him in our bedroom to calm down.

I felt a pat on my back from the EMT. “You saved him mom.” Another EMT stood in front of me. “Yes you saved him.” She said. I finally let go of the ambu bag and got up. I saw for the first time how many people were in the room. I walked straight to Bryce and cried in his arms.

The paramedics assessed Miles but we all decided not to send him to the ER. He clearly wanted to go to sleep and he ended up sleeping a lot the next 24 hours. Two police officers asked me questions and eventually everyone was gone.

The event has replayed over and over in my head thousands of times. Of course, when I reported it to the nursing company, our nurse blamed us for the event. She said we were poking Miles’s shunt. It is clear she is making excuses because she made a mistake about the trach ties but I don’t blame her. People panic in these scenarios.

I did ask her later why she had the ties on so loose and she said she knew they were too loose but she hadn’t gotten around to tightening them. She said she had a, “fat finger, small baby neck scenario” so she had trouble getting them on.

I am in the process of fighting the state of Arizona about Miles’s nursing hours. They want to cut him from our 112 hours a week, to 54 hours a week. This is the minimum a ventilated child can be given. They want Miles to have minimal care. It’s heartbreaking but I’m not a mom that is afraid to fight the good fight. It’s my full time job right now. Lefebvres VS. The State. Bring it on.