The Saga Continues

That first night in NICU seemed to last 124 hours instead of 12 hours. The neonatalogist in charge that month, Dr. Straandjord took time to talk with me and explain any questions I might have. This doctor who was doing a quick Saturday round spent a half hour with me. He was so kind. I'll never forget how he made me feel. My baby was important, our family was important and we were people not case numbers. Dr. S made one of the best impressions as an attending of all the doctors we eventually went through. I will thank him profusely one day for taking 30 minutes away from his family to make me feel more comfortable and less scared.

Later, the attending neurologist, Dr.Snarl, came in with 6 of his residents. He wanted me to leave but I asked to stay. He grumbled I could say as long as I didn't interrupt his rounds (pompous ass). Bren was still drugged into an unconscious state and there were more tests ordered. This was the beginning of the collective minds of UW Medical School and Childrens Hospital scratching their heads and going, "HUH? This kid presents atypical and we be clueless." It would have been amusing if I still had a sense of humor, which I didn't at this point. The all followed their guru to see other patients.

If one has to go into a teaching hospital I have two pieces of adice: NEVER go in the month of July~all the interns and residents are brand new and clueless. Next try not to get admitted on the weekend. The special labs are slower, in fact all labs are slower but that's ok because most docs aren't in on the weekend.

I did use one of the small rooms on the third floor to store my stuff, try and sleep Saturday night(I fell asleep after 72 hours of being awake and there was fire drill at 2am.) I was sure God hated me now! They had strob lights in every room including my closet. Scared the hell out of me. I had gotten 45 minutes of sleep. That was all she wrote.

So much of this experience reminds me of how they torture prisoners; no sleep, lights on 24/7 in ICU, the monitors beeps constantly and it was live being trapped in a sesory deprovation tank but with light, noise and sound. There were no tvs in NICU so I was completely out of my usual newspaper, news shows, HNN world.

I'll be writing in here when I have the time and the stamina. The story will continue, just at random intervals. If the muse hits I'll be in here in a flash. Thanks to all who who read this. I heart you.

12 Years Ago at Exactly This Time

I was sitting in a room in Infant(neonatal) ICU in Children's Regional and Medical Center of Seattle. I had spent my day watching my child come close to dying from intractable seizures. He was 5 months, 3 weeks old. Because of medical intervention Brennan Reed was on a ventilator and monitors in the Neonatal ICU. I was still wired from all the adrenaline that had been zooming around my body from 8am-midnight. I could not pull myself away from Brennie's side. They had a small room up a floor(a "call" room) I could use for 2 nights but I knew I wouldn't sleep. Who can sleep when your infant is in critical condition?

Not me. My mind kept going round and round like a merry go round who's off button was broken. It was making me slightly nauseous and dizzy but I could not stop my brain. I looked at my sweet little baby who was pale and covered with ivs and tubes and lead wires to the monitors. He looked immense next to the most common occupants in NICU which were preemies. My boy weighed around 15 lbs and had chubby little wrists and thighs. Preemies are known for their no fat look. The irony was my boy ended up being one of the sickest children in that NICU even if we did not know it. The vast majority of those preemies went home and lived. And are still living, hopefully going to school as 6th or 7th graders. I hope they are living the life Brennie never got to live.

Part of me could not comprehend the events of the day. It was as if I could force myself awake and this would all go away. No such luck.

The reason I had children was because I knew I could love them, take care of them, teach them, make them vital parts of our family and eventually send them out to make families of their own. In theory, I knew illness or an accident or SIDs could happen but I never considered those events for very long. It's too painful to even conjecture your child being ill or dead. As I spent the long night in the NICU, little unthinkable thoughts began to creep into my sub-conscious mind and bleed slowly into my conscious mind. This was shooting my whole super protective mommy self image all to hell. I wouldn't let that go yet. I shut those thought down. I clamped them with stainless steel and refused to visit until I was forced there weeks later.

Why kept running through my brain? I went over every minute of my pregnancy, delivery, his newborn habits, his "slightly slower that his older brothers' developmental curve". What had I missed? What had I done wrong? Why this baby? This baby was sweet and slightly fussier than his brothers had been, he did not deserve the pain he had gone through in the past 24 hours! No baby deserved this. WHY? Okay Lord, I've been praying and praying and yet this still keeps happening. WHY? Then a little more existential...what had I done wrong in my life that God was punishing this baby? (Catholic upbringing, I was taught God punished sinners, always no matter how long it took. That is why there was limbo and purgatory. They had not taught me about hell on earth, I learned that one on my own....cuz hell is where I lived for the next 5 months of Brennan's life and his death and the aftermath...)

A Precious Gift to Our Family

This is Brennan's Oma who was lying on the bed with her grandson. He was a very smiley baby and loved to coo face to face especially with his mama. 7/1995
Keenan who is 7 and a half here in holding his 6 week old baby brother, the Brenster!!!
On the left is Riley fast asleep at 4 and Brennan was close to 3/4 months. Their profiles were identical. June 1995
Brennie with the leads super glued to his head. This was for a 6 hour EEG study. He face was swollen from IV fluids. Doesn't he look so teeny? My sweet boy with the disintegrating brain(we weren't aware of that fact yet.)

Not My Smartest Move

Last night after I wrote my previous post, I went and got out my copy of Brennan's hospital chart. I haven't been ready or able emotionally to really look through this. But some of my recall is fuzzy on the med schedule and the exact dates in October-November when we were in the hospital.

Oh my Good Lord, that baby boy suffered. I will never ever understand what good comes from a sweet, pure, innocent baby suffering in such a harsh way. I have stopped asking why maybe 10 years ago because there is NO answer to that question. There is no one to blame for what happened to my youngest son, my most planned child. It was one of those things. No one hurt him, we had no idea we carried anything harmful and there aren't any screening tests so I can't blame us. I can mourn what that sweet sweet baby went through during the course of this terrible, nasty, life sucking disease.

I was never told this~SURPRISE! NOT!but Brennan never had anything close to a normal EEG. An EEG is when they measure the electricity going on in a brain. This poor child never had normal sleep waves. There are four stage of sleep on the brain. A waves(normal awake brain activity), B waves, Theta waves, Delta waves(deep sleep) and REM or dreaming sleep. My poor kid never had normal sleep waves on both hemisphere of his brain. The right side of his brain was messed up electrically from our first visit to Childrens. I read all the EEG reports(12 of them) and he was never normal. Shouldn't I have been told this? I get very angry when doctors think it's better not to tell the parents the details. This tends to be because the doctor doesn't want to define all the parameters. It's too complex for us normal folk. I feel like punching all the doctors who never explained the EEG results. I would have had a clearer picture earlier. That means my son could have spent less time in the hospital.

Every time they had to do an EEG on my 5-7 month old infant they GLUED(like in superglue) leads to my infants head. These left welts when removed, sometimes open sores. How nice that must have felt. This was done at least 12 times and several times he had the leads on for 12-24 hours. His skin began to break down from the leads and their remover, acetone(nail polish remover).

I wonder if his brain ever worked normally. My instincts told me there was something wrong from the time he was 6 weeks old. Everyone told me he was just a bit slower in development than his big brothers. BPB rolled over at 2 months old. BBB walked by 10 months. Brennan could roll one way by 5 months. His gross motor skills seemed behind. His fine motor skills were fairly normal. Not only have I had 3 children but I had taken many developmental classes and knew(still do) the parameters. Still, I was treated by everyone who thought I was imagining problems that didn't exist. Thanks guys. Have we forgotten who we were placating? Miss 160 IQ(exceptionally high in verbal skills, comprehnesion, and I had a somewhat photographic memory for social studies).

Brennan was breech and delivered by c-setion. This adorable little boy could never hold his head straight up. It was always crooked to the side. I was told that was because his head was under my ribs and was mostly muscle/tendon immaturity from placement in the womb. He was near to normal by four months except if he was tired, then to the side his head went.

I'd like to make something clear, they really couldn't have diagnosed him much earlier. He was diagnosed from his second MRI where it was clear his brain had shrunk 25% in 3 weeks. The first MRI during our first admission showed some slight abnormalities but that is probably true of any infant or adult. Our brains don't look like they do in the Anatomy book.

Being dismissed is what upset me. Until Geo heard the dx from an actual neurologist he felt I was being pessimistic. Um no. From the minute we walked into Childrens I knew Brennan had something major wrong with him. I would have loved to be wrong but I wasn't. My pediatrician apologized to me about his lack of concern and trust of my Mommy instincts. Too late mate!

More 9/15-16/1995

I

I was rocking in that uncomfortable wooden rocking chair watching any action going on that I could see. The nurse on duty for Bren and the other teeny baby in room found me an extra TALL chair that the nurses used to write in charts. I used the tall, padded chair to sit higher up and therefore close to Brennie. He had not moved since they drugged him to the gills with anti-seizures meds and whatever else they threw at him to get him to stop seizing. I know they gave him phenobarbital, dilantin, more ativan and paraldehyde which are all anti-seizure meds. He had an IV attached to his chest catheter. He wasn't quite as pale as he was earlier. He looked quite small in his bed. He was attached to a monitor that kept tract of his heart rate, oxygen in the blood(measured by an oximeter that was on his big toe), blood pressure and I think that's it.

I spent quite a bit of time watching the blinking on the monitor.

I tried to pump breast milk so when he woke up they could feed it to him. This is one of the biggest stresses I put on myself. Trying to get enough milk so they would not have to supplement. In the next seven weeks, it never happened. I did not feel let down anymore and I only had letdown when he was sucking. So trying to get milk out in their little breast pumping room was the most frustrating thing. I could get an ounce or two but that wasn't enough. I stressed myself out about so much when I really didn't need the extra stress. I'm a huge believer in breast feeding with baby led weaning. My first weened at 17 months old, my second was 2 and Brennie was still breast feeding only when he got sick. He'd had some trouble with nursing for about a week before we ended up in the ER and that affected my milk supply as well. I felt like a complete failure when I couldn't produce 4-6 ounces at a time. I know he had been eating enough as he'd more than doubled his birth weight by 4 months old.

I'm sure some people won't understand but I kind of fixated on my milk as the magic healing food. Breastfeeding and being a good mother went together in my mind(for me only. My standards were for myself.) When I could not do this successfully, it made the entire experience even worse and somewhat personal.

I was raised Catholic and guilt and I had been good friends for quite some time. My mind was struggling with the fact my son was suffering. I wondered, why him? Why an innocent perfect baby was being punished? Why us? (This thinking changed within a week or so to why not us? Were we in some magic circle where nothing bad would ever happen to my kids. NOOOOOO. It just took some attitude adjustment time for me to get there.) I was harboring a great anger, mostly at God. It would bubble and brew for weeks before I blew.

All my guilt and fear of failure to be a "good" mother all coiled together in my subconscious mind. None of the parenting expereince is simple, I have found. Dealing with a sick child just quadruples the complexity. I had pretty harsh standards for myself and this emergency woke them up and mixed them with vague guilt and terrible almost paralyzing fear.

All the while, Brennie lay unnaturally still except for the respirator or when the nurse did something necessary.

9/15/95 continued

While I was thinking my infant looked dead, we were walking with the resident, a nurse, the social worker, Geo, my friend and I, to the CT Scanner. If you have not seen a CT Scanner up close they are pretty large. They are HUGE next to a five month old baby who weighs 15 lbs. They slid him in and scanned his head. They did not seen anything unusual in the scan but would let the radiologist look at it and let us know.Next stop~Infant ICU aka NICU aka Neonatal Intensive Care.

They set Brennan and his IVs and respirator up in a room with only 2 beds. There were 2 other rooms in the ICU area, a huge room with 20 babies and a small room which held only one baby. The room we were in also held the ECMO machine(A heart/lung machine for critically ill babies awaiting surgeries usually). Brennan had a nurse just for him and one other baby that first night.McHub had to go home and deal with the older boys, his father who happened to be visiting(OY VEY!), and call my parents and his mom and sister. My friend C, needed to get home but promised to come back later. She had to take care of her boys and husband and would bring me supplies back, as I was not leaving my Brennie's side.

I settled in a rocking chair right next to Brennie's metal crib bed. I kinda rocked and stared at him. I cannot remember a single coherent thought going through my head. The resident who had asked me about Brennie's medical history came up and kept me company for awhile. Dr. Deb was 25, a 3rd year pediatric resident who went through med school at University of Michigan(My favorite all time college on earth). Even though she had not slept in 2 days, Dr. Deb stayed for over an hour, which helped me to calm down.

I was calm on the outside the entire time but inside I think my stomach was full of heavy lead and somewhere in the very far back in my mind, I knew this was all a very bad scene. As if a teeny black cloud floated above me and Brennie, I could feel a terrible knowing this was not going to have a happy ending.

I kept getting asked if I was hungry and was offered a voucher for a meal in the cafeteria. I wasn't hungry. I don't think I was hungry for the next 6 months. They did kick me out as per their policy. It was for 30 minutes every so many hours I think. I can't remember now. I wandered down the hallway with the names of children who had died there on glass plaques on the walls extending for seemingly forever. I mentally flinched. I could not look at those names. I could look out of every window I passed but I could not make myself even glance at those plaques(perhaps knowing my child's name would be on one someday?).

I was 33 when this happened. I looked about 20. No makeup, no sleep, hair short, like a boys. When I was in the crash room rocking and praying they had to ask who I was, none of them thinking I was old enough or hysterical enough to be the mom. I'm pretty sure I was wearing an oversized t-shirt and an old pair of my hubby's sweats. That was my usual thing to sleep in. Yup, I was dressed for success. Like I cared.

I skipped the cafeteria and wandered into the gift shop. I bought a People magazine. It was their worst dressed celebrity issue and that was a stretch for my attention span. I went back into ICU and settled back in my very uncomfortable rocking chair. The sun was setting because I remember the slant of light in the room. The very quiet room except for respirators, monitors and IV pumps.

I rocked and stared at my still, silent beautiful baby and brushed his hair back or held onto his leg. It made me feel better to feel the warmth of his body. No matter how high tech weird all the stuff going into him looked, underneath, it was my baby boy.

I did not allow my mind to settle on anything. I would not let it wander into the dangerous territory of what was wrong with my son and what did it mean. Nope, I refused to go there. At this point, I just wanted my baby to get better so I could take him home. So my wandered, within the limits I set for it.

It's That Time of Year Again...

WARNING: This story is graphic and heartbreaking to most parents. It wasn't easy to write and it's not easy to read. I'll understand if you move on. :)



Twelve years ago on 9/15, my 5 month old son was having intractable seizures. Major, whole-body-jerking seizures. One of scariest things I've ever seen. I called my friend, the NICU nurse and off to the local ER we went. Brennan and I had been at that ER the night before because he wasn't acting "right". I just did not know what I was seeing~small, barely detectable seizures coming at a constant rate. He looked like he was smiling except for the drool. The doctor who checked him out that night treated me like a first time paranoid parent. He watched him for an hour off and on and sent us home. Bad decision, Doctor. Bad all around.

I spent the night wondering what was wrong with my baby. I know he was "off". He wasn't eating. (Duh, how can one suck during successive seizures). He wasn't sleeping though he seemed to doze. I dozed off at about 5am and when I woke up at 8am, I realized Brennan was still very, very off. His diaper wasn't wet. He still wasn't making eye contact. I felt foreboding music fill my head(seriously). Called my friend, jumped in the van and off we went.

He began the major seizures on the way. The local ER was in a word, clueless. They could not find a vein until my friend offered her skill. This kid was seizing his brains out, almost literally. I was standing by, praying that my child would be OK and feeling ill with a headache beginning to inch up from the back of my neck.

They found a vein in his head(yes his head). Poor baby was so out of it, he wasn't feeling anything. They got some ativan(sedative used as an anti-seizure med) on board, stopping the seizures for the moment. Next, was the ambulance ride to Children's Hospital, which actually knew what to do with a 5 month old. I had to ride in the front and couldn't really see Brennie in the back. I was scared witless and babbled to the driver. Some moronic people did not pull over even though the siren was on LOUD and the lights were flashing. If I could have moved things with my mind, the Asian couple in the U District would STILL be orbiting the moon.(I make mention they were Asian not out of prejudice but out of detail. This is how it plays in my head. This is how it has played in my head a zillion times. They were an elderly Asian couple who were confused by the ambulance in the intersection and the traffic.)

This entire time I was almost outside of my own head. It's happening. I feel it happening. My eyes see it happening. My brain kept screaming, "This is NOT happening!!" Almost as if I was in 2 dimensions at the same time. Or as if part of my brain was floating above myself, watching it all from above. Surreal can't even begin to describe how I felt.

The ambulance backed into Children's trauma bay. Brennan had started seizing again and they rushed him into the crash room. I was asked again about how my son came to be seizing at Children's. I told them basically what I have described here. The social worker asked me if I had been okay when they had sent us home the night before from the local ER. I vehemently shook my head. I told them I felt something had been off about Brennan for months, mostly the past few weeks. I knew he was off the past 18 hours. I went over this story in more detail several times. George(kid's dad) and my friend were there. They watched as the 7 doctors worked on Brennan. I was out of the way in a rocking chair praying my heart out. I had a really bad headache by now, but I ignored it.

September 15, 1995~the day my world broke into pieces, I just didn't know it yet.

They did a cut-down on Brennan's chest and poured 9 medications into him(seriously 9). He had to be placed on a respirator because the meds caused him to be unable to breath on his own. He lay on the big gurney, with several iv's going in, hooked to a respirator, as unconscious as one can be and still be alive. He looked dead. To me, he looked dead. That is how I remember it. It is still a crystal clear image in my head. Permanently imprinted on my hippocampus for all time. May be continued another time... (This is only the beginning of 5 month journey to my angel's death. This is 10 hours of a 48 hour emergency and 7 days in the ICU....)