Norwitz Notions

Riddle: What is harder than taking care of a baby after having major surgery?

This will be my last pregnancy update.

I was 36 weeks pregnant on Saturday, September 26, 2009.  40 weeks is the “due date” and 37 weeks is considered “full term.”  But 36 weeks is considered safe and close enough to full term.  It is the minimum gestation to have a home birth, which is what I was planning.

The pregnancy was very very hard on me with lots of fatigue and discomfort, but was going quite well from all other ways of looking at it.  The baby was growing at just the right rate.  He moved a lot and his heartbeat was always perfect.  I had an ultrasound at 20 weeks which showed he was a boy and that everything looked normal. My blood pressure was 110/60 or a bit less every time.  My last midwife appt was Wednesday before this all happened and my blood pressure was normal, along with everything else.

On Sunday, he only kicked and moved twice, at 11am and 6pm, no matter how much I poked and prodded.  And each of those times it was weak and short-lived.  When his position dropped a week and a half earlier (normal pre-birth occurrence), his movement also decreased but he checked out fine and started kicking at normal levels shortly afterward.  So I kept telling myself it was nothing.

Sunday night was the start of Yom Kippur services and we were at synagogue.  When services were over around 10pm, I went to one of the members who was a doctor and got her advice.  She said to call my midwife immediately.  I did and the midwife said to head directly to the ER.  The ER close to our house isn’t very home birth friendly and doesn’t have great OB services so we were going to go to my backup hospital way south of us.  But we already 10 mins north of our home and Michael was too tired to drive far, so we decided to go to Sutter Santa Rosa which our midwife often uses as a backup and where several doctor members of the synagogue happen to work.  The plan was to get monitored for an hour or two then go home.

We arrived about 11pm and were immediately sent up to labor and delivery and put on a monitor.  When I heard the perfect strong heartbeat I felt so relieved and thought that was it, we’d be sent home.  But the heartbeat was too perfect.  It’s supposed to go up and down with movement, only he didn’t move.

My blood pressure was high, in the 140’s to 160’s, with the bottom number in the 70’s I think (hard to remember) and there was protein in my urine.  I had had edema in my lower legs for ages.  Those three things together are not good though and I was diagnosed with pre-eclampsia.

They sent me for an ultrasound.  They do a rating out of 8 points.  He got a 2.  The heartbeat was strong but there was nothing but tiny movements and the blood flow through the cord was impaired.  One of his lungs was collapsed and they didn’t know why.  They told us he was better off outside of me than inside.  They thought his brain was probably not affected at this point and that he would probably be okay, though he’d need some intervention.  A c-section was the only possible choice.

They waited until my midwife Claudette arrived (once in the hospital she became my doula).  I am very anti-c-section except for medical emergencies but I knew this was the only option.  I chose my midwife precisely  because she does not follow mainstream thinking and has the skills and experience to safely help women choose to avoid interventions they are sometimes pushed into.  She told me to have the c-section.

I spoke with the surgeon and the anesthesiologist about my chemical sensitivities and drug reactions and they were very accommodating and worked with me well.  I was still scared to death and crying. But I would do anything to save my baby’s life and this seemed to be it.

At 2am they took me to the operating room.  The surgery was just awful.  No pain or anything but it felt just horrible all around. It was an emergency but not the full-out get the baby out right away kind so I had a spinal vs general anesthesia and they were able to take their time so my internal organs didn’t get too messed up.  Claudette held my hand the whole time and Michael stayed with Miriam in the room where she was sleeping on a mattress the staff set up.

William Gabriel Norwitz was born at 2:54am.

They wouldn’t let me see him.  I had almost no updates.  They had a team of doctors working on him.  He didn’t cry.  They intubated him but it took 3 tries.  I had to stay there for another long long while (I’m guessing half an hour but it felt much longer) to be sewn up.

I went to the recovery room but still didn’t know how my son was.  I knew he had been intubated and was in the NICU and that he had a cleft lip.  Post-surgery, my blood pressure went up.  And up.  At first they weren’t too worried and gave me meds.  But my pressure was more than 200/100 (dipping down to the 170’s or 180’s as well) for a couple of hours after several doses of a couple different meds.  I could tell how freaked out everyone was.  I knew I was in danger of a stroke or seizure or death.  I didn’t care.

They let Michael go see William and told him he was “probably not going to make it.”  I was shocked when I heard this.  I was worried about brain damage but thought he would survive.  We woke Miriam up.  A few minutes later, Michael and Miriam went to see him and Michael asked for some hard numbers.  What are his chances?  He was told “zero.”

I told them over and over again, do not let my son die before I can see him.  It took a very long time but they finally brought him into my room in an incubator.  I couldn’t move my lower body yet and could only reach his hand to hold it.  He looked so unhappy and uncomfortable.  I told them I wanted to hold him.  Our Rabbi was on her way and they were afraid of transferring him before she arrived.  I kept insisting but logistics kept it from happening.

When the Rabbi arrived it still took a while but they did give him to me.  I opened my gown and placed him skin to skin on my chest and arm, then we put a blanket over both of us.  He had the ventilator breathing for him and his eyes were gooey so I’m not sure he could see anything (I still don’t know what color his eyes were).  But he was awake.  Once on me he relaxed and seemed much more comfortable.

I held him for about half an hour while the Rabbi performed a naming ceremony for him.  Gabriel is his Hebrew name.  Michael held him for a little bit as well.  Miriam chose to stay in the room at times and to go out with Claudette at other times.  We gave her many chances to decide what she wanted to do.  She understood her brother was going to die and was very very upset about it.

This entire time was when my blood pressure was through the roof.  I had been getting over a cold and the crying and stress filled my sinuses and nose so I couldn’t breathe at all except through my mouth.  And then my throat started to swell up and I had trouble breathing.  I asked for oxygen and they said my sats (O2 saturation) were fine but I said give it to me anyway and they did.  It helped slightly.  The BP stuff didn’t scare me because I didn’t care at that point.  But my throat swelling did.  I did not want to not be able to say goodbye to my son.  The staff monitored me closely of course but they thought it was stress.

I did not find out until Thursday that my surgeon had given me an antibiotic during surgery that was a “cousin” to penicillin.  (I didn’t quite catch the name but it sounded like Ciprosporin.)  I told him about the throat swelling and how that is the reaction I got to amoxicillin (penicillin family) and his eyes got real big.  He said that was anaphylaxis and that I needed to add that class of antibiotics to the list of ones I couldn’t have.

When the 3 of us had said our goodbyes, we asked them to remove the ventilator.  They said we could have kept it in longer but we didn’t want William to suffer anymore and we knew there was no hope at all he would survive.  His lungs were hard and wouldn’t not inflate properly even though they were putting through pressures that were much higher than any newborn would get.  And his cord blood pH was so low that no baby ever survived it.  And the placenta was small with poor blood flow.

The neonatologist said he might live and gasp for a couple of hours, but he went in just 10 minutes.  Peacefully on my chest, in my arms.  He died with his little thumb in his mouth.  William died around 6:30am, after only 3 1/2 hours of life.

I held him for another hour or so.  My breathing improved and my blood pressure went down to insanely high but out of the danger zone (they’d cheer when it got down into the 170’s).  Michael held his body then and Claudette did briefly as well.  Miriam said goodbye but chose not to touch him.  Then they took him away and began the transfer to send me to my hospital room.

Although my doctors were still from Labor and Delivery, they put me one floor down, in Cardiac & Telemetry, in a private room.  Losing a baby is a rare occurrence in that hospital and they treated me with the utmost respect.  For my entire stay, every single person, from my nurses to the dietitian, was told what happened before meeting me.  Claudette had brought my birth plan (which had my chemical and medication restrictions listed) and my door sign, which they put up (asking perfumed people not to enter).  They also put a sign on the Purell dispenser outside my room asking people not to use before entering.

They took some care to get me unscented nurses though we had some laundry product issues.  Other staff with scent stayed away or worked with me by phone.  And the next morning Michael brought some safe liquid soap that staff used instead of the sink soap dispenser. With the door closed and the air conditioner on (the window didn’t open) my room wasn’t too bad.

I left for home Thursday late afternoon.  It’s been a difficult recovery, with lots of physical pain and a lot of work to find pain meds I tolerated that worked.  My blood pressure is still not normal but is mostly in the 140’s and 150’s now.  They gave me meds when it spiked to 161 and I spent the night feeling like half my head had been sawed off (this while being on heavy narcotics) so I know now that the recovery room migraine was caused by Labetalol (as opposed to any of the 100 other things it could have been caused by).  And I know I tolerate Toperol (anti-inflammatory) and Dilaudid (narcotic). My incision is healing well but I have welts and blisters and severe itching from the bandage adhesive.

My synagogue, Congregation Ner Shalom, was amazing and, between them and friends and family, I  had visitors and phone calls nearly around the clock, which comforted me to no end.  Being alone were the worst times, especially night and early morning. Although we had to delay the burial, we counted it as sitting Shiva.

As of Saturday afternoon.  I can get out of bed by myself (that feat took several days), use the computer, use the toilet, and stand for brief periods of time (a minute, maybe two).  I took a shower in the hospital which wiped me out and caused terrible pain.  I took one at home yesterday but needed much help with it.  Today I used a borrowed shower seat and was 95% independent.  I am eating and drinking normally.

We will meet with the neonatologist in a couple of weeks when all the test results are in.  They are waiting on some pathology slides and a chromosomal report.  But the diagnosis so far is pulmonary hypoplasia.  Or severe underdevelopment of the lungs, which were 1/10th the size they should have been.  This condition is usually secondary to other issues but, in this case, they think it is caused by a random genetic disorder, which also caused the other birth defects, and led to the failing placenta which led to my pre-eclampsia.  They say it is not related to my age or health but can happen to anyone, though it is rare.

The funeral was yesterday.  It was brutal but I needed to see him buried.  The cemetery is walking distance from our house with trees and grass.

That’s about all I have in me for now.  Thank you again to all who have visited, called, emailed, prayed, or otherwise supported us through this.  It means more than I can say.

William Gabriel Norwitz
Born and died September 28, 2009
10th of Tishrei, 5770

Goodbye my sweet boy.