Most reviews of my book have been fantastic. Stories have started to trickle back from moms on bed rest who felt my book empowered them to help their baby even before birth. One wasn’t offered magnesium for neuroprotection, but after reading my book she made sure she got it. The other had ruptured membranes before viability and my book helped her to insist on antibiotics, steroids when it was time, and then magnesium for neuroprotection. I admit, I felt like crying.
I have received some very nice reviews, all recommending my book and an especially coveted one from a mom of a 24-weeker who happens to also be a NICU nurse (check out her review at the blog Adventures in Juggling). To me, it doesn’t get much better than that.
A few people have written they felt my book was too scary. One person who posted here said she “forbid her daughter from reading it,” and another posted on another site said it is a book “about what could go wrong” and not for the “average preemie parent.” They were pretty venomous, which kind of hurt.
I thought a lot about what kind of book to write. There are already several memoirs about having preemies and I wasn’t sure that was what I really had to offer. I am all about practical information. That’s what most of my patients say they like about me, that I give them real-world practical information about how to get better. I just give them the information that I would want if I were in their shoes.
I didn’t want to read “everything will be okay” about a 26 weeker when my boys were in the hospital, because that is not the truth. The truth is prematurity is ugly and scary and one of the worst possible things that can happen to a family. There is no joy in seeing your baby ventilated, fed with an IV, or ultrasounded to see exactly how much blood is in his brain. Even having your baby in the hospital for a few days is traumatic. Prematurity is something conjured up by the devil to torture parents. It is the number one cause of infant death and morbidity in the United States.
Time and time again I would see bewildered parents in the waiting room not really understanding what was happening. They would ask me questions. What does a grade IV bleed really mean? Why does my baby need a feeding tube? Are those vaccines really needed? I was also grilled time and time again on the medical system. Why did you get your compounded medicine approved and mine was denied? How do I get a home nurse for RSV shots? How do I get Medicare?
I knew about the hard stuff in the NICU while I was living it. For example, necrotizing enterocolitis (NEC). I knew just how bad it was, so I followed the abdominal girths like a hawk until the major risk of NEC passed. I knew how important breast milk was in preventing NEC, so I pumped my soul out for 5 weeks for a meager 10-15 cc each time. Useless for weight gain, but invaluable to prevent NEC. I know of a family who didn’t watch like a hawk, because they never heard about NEC until the pediatric surgeon explained their baby was in multi-system organ system failure and would not survive the needed surgery. They didn’t know that the message of expanding girths didn’t make it to the right person until it was probably too late. Had we only known, they said.
I knew Victor had cerebral palsy when he was discharged home. The first physical therapist mistook his muscle stiffness for head control and was trying to tell me at 2 weeks adjusted that he had the head control of a 4 month old. I laughed, knowing she had no idea what she was doing and promptly insisted on one who did. I know parents who have worked with physical therapists for over a year before realizing they were getting bad advice. If we had only known, they said.
I hear that time and time again. If I had only known.
My best analogy is when we visited in Houston in 2005. The boys were two years old. It was just after Katrina. A huge hurricane, Katrina size in fact, was predicted to hit the city. The major of New Orleans, trying to impart how bad it really would be, advised people who were planning on staying (against government advice) to tattoo their SSN on their body so the clean up crew could more rapidly identify the remains. After a brief moment of panic, we gassed up the car, helped my father-in-law board up the windows, and watched the news to find the best route out of town, because 3 million or so other people were also heeding the call to get out of Dodge.
There was a light rain.
When a storm is coming, you don’t know how bad it will be. That is probably the best motto for prematurity. I know someone whose daughter, born at 34 weeks, has more long lasting challenges than her son, born at 24 weeks. You just never know.
I too find memoirs uplifting, and that is why I included a lot of our story in the book. My boys were born at 26 weeks and weighed 1 lb 11 oz and 1 lb 13 oz. They are now 7 years old, in first grade, and doing very well scholastically with some mild to moderate fine motor deficits and some lung issues. To me, that’s pretty darn uplifting.
Knowing your baby is at risk for NEC, and cerebral palsy,and sepsis, and…just about every other bad thing under the sun is tough. But knowing helped me intervene and get them the best outcome possible. You get early intervention earlier is you can identify the problem and articulate your request in terms doctors and bureaucrats can understand. To help counteract the difficult statistics, I share advice on how to dial down the panic with mind body techniques. Something I wish I had practiced more often.
I think if you really want empowerment, which I do, there is a price. With the good comes the bad, and the ugly. But if the storm turns out only to be a light rain?
How great is that.