One in a million

The conference I attended in Boston was interesting. It involves way to get families more involved in and welcomed into the medical decision making process involving their children, and in the case of those who are able, getting the patients themselves involved. It was a conference of mostly doctors with nursing administration and one bedside nurse there as well as about four family representatives (I was one of those). The fact that families are even included in this process is a good sign of thing to come. It is a culture shift for many medical providers and for many families as well.

One of the many things that came out of this was that medical personnel need to avoid the use of medical jargon when dealing with families. I wholeheartedly agree with this. Things like acronyms and abbreviations of medical terms tend to exclude those who don't understand the reference. Medical terms are necessary, but the jargon that accompanies them is not.

One presenter also warned against the use of "numeracy." I had to ask the woman next to me what that meant. It is defined as "the ability to understand and work with numbers," and from context I understood it to mean that medical people need to stop communicating in numbers when speaking to families. The whole idea of including families is to open the two way lines of communication and using stats and numbers can preclude that.  Many folks cannot comprehend the numeracy and therefor lose the message being conveyed and cannot ask relevant questions etc, which shuts down meaningful communication.

I smiled to myself because I remember calling a doctor out on this- even though I didn't know what it was called -  very early in Maggie's life.  During her course in the NICU ( oops, that's jargon right there, that's the Neonatal intensive care unit) the doctors were trying to convey Maggie's situation. While I don't remember the numbers specifically, the conversations went something like this.

"only 1 in 100,000 babies are born with this, but of that .01%, 3/5 will have XXX complication. (Maggie had it). Of those with XXX, 2/3 will have YYY complication (Maggie had it) of those with YYY, 1 in 7 will have ZZZ complication. (Maggie had it)
  
I was completely lost after the first statistic and told him to stop. I said, " I do NOT care how many people DON'T have this. I get it, it's rare. She's the 1, She's ALWAYS the one. I'm going to buy her a lotto ticket because she's ALWAYS the one.  I just want to know what the plan is to deal with it."

I shut down the numbers game and focused back on straight communication, mostly because I needed to understand. Seems I was just 20 years ahead of my time.

And Maggie proved early that she was One in a Million.

Maggie's first weeks

Thanks for all the positive feedback for the Maggie World: Fractured Fairy Tale post. (One friend suggested that would be a good title for a book if I ever write one.)  That was a general description of what it's like to spend time in the NICU with your baby and then go home.

Today I want to give you a more specific story about that time for us.  It really became a strange kind of normal for us.  I snapped a picture of the boys  and Steve visiting with Maggie (still on the vent) in Steve's arms. It was our reality.

 Maggie was in the Newborn Intensive Care Unit for 11 weeks and three days. That's 80 days. A lot of things happen in any 80 day stretch, but in that particular one,  we celebrated St Patricks' Day, Easter, Eddie's 6th Birthday, the loss of his first tooth, our 8th wedding anniversary and the birth of our nephew Jeff. We came home for a few weeks but went back in on Tim's 4th birthday.  Maggie probably had surgery 5 or 6 times in those 80 days. There were scary days, boring days and great days. You quickly learn the mantra of the NICU. One step forward, two steps back. The steps forward were great, the steps back were not.

 I finally got to hold her when she was about three weeks old. That was probably the best day. But there were a lot of good days. At some point it shifted becoming  two steps forward and one step back and I started to really experience hope.

 The most delicate of the surgeries was an esophageal anastimosis (say that 5 times fast) and the recovery required that Maggie be kept paralyzed for several days. That was the hardest part, for sure. Maggie could not get off the breathing tube and the days they tried and it failed were also very very bad days.

The unit was pretty small, maybe 8 or 9 babies in an open bay with one small alcove for a single baby. The called the alcove "the apartment." After a few weeks Maggie was moved to the apartment and we made that place our own. In fact, one of the nurses actually put up a sign that said simply "Maggie's Apartment."

It was good we were off from the open bay a little. Privacy was a joke. I was there 10-12 hours a day and I knew how every child was doing and what new things they were trying. Not on purpose, mind you, but it was open and I was just sitting there. In Maggie's apartment I could ignore things that weren't my business (but I was still close enough to know when things got interesting. OK, I'm ashamed of myself.)

I saw babies come and go. I saw babies come and stay. I saw babies who didn't make it. I saw moms who were stoic and moms who were hysterical and there were moms I never saw who weren't going to be part of their baby's life. It was heartbreaking.

I heard over and over again that despite her medical complications Maggie was a "lucky" child.

And I started to believe it.

 Maggie was born at California Pacific Medical Center (CPMC) on the Pacific Campus. All three of my kids were born in that building, but I'm not sure when it became CPMC. Two hospital had merged into one. The hospital closed that birthing unit shortly after Maggie was born and all birthing and newborn services were consolidating at the California Campus, which old San Franciscans still called Children's. Maggie was one of the last babies in the Pacific campus. By the time she was discharged from the NICU there were only two babies left in that unit.

The combining of the units was not without drama though. The nurses at the California Campus were unionized and those at the Pacific campus were not. For weeks before the move, I heard all about the nurses' concerns for who would be employed and who would not. They were all to go to a meeting in order of seniority and find out their fates. The anticipation of this meeting was very stressful for all the nurses. The meeting was to take place on May 20.

Initially the doctors told us we could go home on May 19. This was 78 days in and I was so excited to leave, but I couldn't believe the timing. I had grown very close to these nurses and I was concerned for their professional futures. Instead of showing excitement at going home, I said "You are kidding. I don't even get to see how all this labor drama plays out." We all started to laugh at the absurdity of it all. For unrelated reasons we didn't get out of there for another couple of days so I did know that all my friends were taken care of.

When the day arrived  to go home I was as afraid as I have ever been. I knew I was ready but doing all of Maggie's care on my own was going to be very different. The nurses and doctors had more faith in me that I did in myself. They knew Maggie was going to do fine and that I understood how to care for her. I so wanted to prove them right.

They bought a cake and all the respiratory therapists, pharmacists, doctors and nurses who had dealt with us in the course of the 80 days passed by. My own pediatrician brought us a bottle of wine. I sad my goodbyes to all these people who had kept me going and kept Maggie alive.  I felt like Dorothy about to board that balloon and head back to Kansas leaving the scarecrow and the tin man and the lion behind.

Oh, if only I could find the picture I am looking for. I know I have it here somewhere and when I find it I will add it.  The nurse altered the sign that said Maggie's apartment writing across it in red:

FOR RENT

That's when I knew it was really time to go and somehow we would figure it out.

I'll let you know when that happens.

Fractured Fairy Tale

A great thing happened yesterday. A seven month old baby was discharged from the hospital for the first time. I know this family and I could not be happier for them.

 Imagine that - seven months. It's inconceivable, really, even for me who has endured many many long stays in the hospital with my daughter. Maggie didn't come home for eleven weeks and two days after she was born. That time was difficult and amazing and coming home was very different than it was when I came home with each of my two healthy sons.

Coming home from the hospital with your baby is the stuff of movie endings. It is the fairy tale, the end of the story and the beginning of happily ever after. Of course in a movie or fairy tale, there are no bumps on the way home.

Reality is often a little more fractured than fairy tales.

When you think about all the intricate moving parts in our bodies, it is truly a miracle when a baby is born perfectly healthy. And yet it happens so often, that it is the babies with "issues" that grab our attention.  Babies are born with a myriad of issues some minor and some major. Some need just a little time in the NICU and others need months and months.

Unless you've lived it, you cannot possibly imagine how strange and scary it is to have your baby in a hospital for that long. You have no control, there are strange and frightening medical procedures to learn about and endure, and you have to push the fear down every minute of every day. Stranger still, you learn to adapt. You get to know the nurses and doctors very well, you find yourself becoming an expert in things you were blissfully unaware of just weeks earlier and questioning trained medical professionals about how and why they are doing things. More amazing, your questions are generally brilliant and insightful and result in changes to the treatment.

Your vocabulary completely changes, you toss off Latin words like a Roman scholar and you become a peer of sorts to the medical staff. You're not a peer and you know that, but you also know they respect your opinion and are listening to you. When one individual doesn't treat you that way, the others jump in to support you.   Still, you never lose your role as parent.

During all of this you are bonding with your baby in a way that few parents ever get to. Admittedly most don't want to, and they are smart not to, but you alone see the silver linings of the situation. Despite all the faces and activity surrounding that isolette, your baby knows you're the Mom and that you above everyone else have her back. She trusts you. You have to stay strong and get her strong and get her out of there.

And then one day they say you can leave the hospital. You are delighted, you are overjoyed and all of a sudden you are scared out of your wits. It's one thing to stand over an isolette or crib in a fully stocked and staffed NICU and know what to tell them to do (especially when you learned it all from them), but it's quite another to go home alone and rely only on yourself.

It is difficult and it is scary and you feel just as out of control as you did when you started this journey months ago. You gather your baby and the mountain of supplies and stuff your fear down again. You are no longer on deck, your baby needs you and she believes in you.

You don't crumble, you can't. You go home and you figure it out.

And THEN you live happily ever after.

Kiss a Nurse!

Today is the beginning of National Nurses Week. It is a time to recognize and appreciate the unsung heroes who do the lion's share of the work and get relatively small recognition in the medical communities. It is an exciting profession offering opportunities in a myriad of ways. If you are looking for something important to do with your life, consider nursing.

Nurses are everywhere -- no one knows that better than we do.There are nurses in hospitals, schools, doctor's offices, homes, businesses, and many other places.  They are not always wearing scrubs either, they may be in the boardroom, or the person behind you in line at the supermarket. If you are lucky there will be a table of nurses sitting next to you in a restaurant when a heart attack strikes or you choke on your food. They will care for you and go right back to their dinner when you are safe.

Before Maggie was born, I admired nurses in a general sense, in that way you respect and admire people who are called to do certain work. I didn't have too much cause to interact with nurses because everyone was healthy, so the respect and admiration were from a distance. When Maggie entered the world, we received a crash course in Nursing appreciation and I never forgot it.

It was a nurse who encouraged me to question a doctor about a decision when Maggie was a baby and I haven't shut up since. It was always a nurse showing us  how to do things for Maggie, how to use the feeding tube, and a catheter and care for a trach. I learned how to read monitors and when NOT to worry about the numbers. I still remember trying to learn sterile technique from Adrienne, a veteran in the PICU. We went through a lot of gloves and suction sets until I got the timing right. I deal with nurse practitioners in several of the specialties Maggie sees and always get prompt, reasoned advice. When things are not going well in the hospital, it is always a nurse who has my back and gets things back to where they need to be.

 Maggie owes her life to the nurses who have cared for her over the years. But they didn't just care for Maggie. They cared for the rest of the family too. The boys were fawned over when they came to visit and, in addition to the education we received at their hands,  Steve and I were always treated with tremendous respect and kindness.

There are a million examples I could give, but one always pops into my mind first. Maggie was a tiny baby, maybe 10 days old. She was in the NICU, where she would stay for 11 weeks, and just out of her second (or third) surgery. It was a big one. When she was born her esophagus was in two pieces. This surgery was going to connect the two pieces and it was extremely delicate because there wasn't quite enough tissue to reach. After the surgery Maggie had to be on Pavulon, a paralyzing agent so that there would be absolutely no movement. Without the ventilator would not even be able to breathe. Seeing her like that is still the most difficult memory I have.

As I stood over her isolette looking down at that frighteningly still baby, I felt completely empty and fought back tears. I was helpless. I could not do a single thing for her and this was day 1 of 10 days. I didn't know how I was going to make it.

Carol, the nurse on that day saw the struggle I was going through. She seemed to know what I was thinking. She looked at me and said, "Maggie can hear you, Talk to her. Let her know you are here."  

Those words were perhaps the best gift I have ever received, and not just because I like to talk. They gave me a purpose at the lowest possible moment. They empowered me to help Maggie. I sat there next to her little bed and told Maggie about her brothers and the house she hadn't seen yet. I told her what was going on with the other babies around her and who was coming and going out of the NICU. I told her how tough she was and that things were going to get easier. I read her stories and payed music.  I talked her little ears off and probably forged the basis of the relationship we have to this day.

So ... yeah, I do have an appreciation for nurses. The problem is I don't think I can show it all in just one week.

Home at Last

This is in response to writing prompt was on a  on a couple of other blogs I follow, (Motherhood and Words and A moon, worn as if it were a shell.) You should try it.  Elizabeth has instructions on what to do with your essay here
:

Sensory Details as a Way to Begin 

Think about the time when your child (or one of your children) was born, when she first arrived home, or even before she was born. If you adopted your child, maybe you want to focus on the first time you saw her photo. Is there a certain smell, sound, taste, texture, or picture that comes to mind? Start with that. Write it down. What other concrete details do you remember? Let your mind wander. Jump from image to image. Try to use as many sensory, concrete details as you can. Don’t pick up your pen—just keep moving it across the paper—and don’t worry about grammar or spelling.

If those early days and months feel too far removed, choose another period in your child’s life that seemed particularly vivid to you, and begin writing details from that time.

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Home at Last

I arrived at the hospital carseat in hand.  During our stay, I had seen so many parents come into the Neonatal Intensive Care Unit (NICU) with their carseats ready to take their babies home.  I remember asking the dad of triplets that went home at separate times “How are you going to do this?”  He laughed and shrugged.  Another mom arrived with the carseat only to discover her baby could not go home yet after all. That was crushing for everyone in the NICU.  Her baby did go home a few days later healthy and strong and everyone applauded.  I completely connected with those parents but never saw them again after they walked out with their shiny carseats. 

Today was our turn.  It had been 11 weeks and 2 days since Maggie was born and she was finally coming home. I was ready. Ready to have her home, ready to stop spending days at the hospital learning so many things I did not want to know.   I was ready to have my entire family under one roof, ready to stop pretending to my three and 5 year old sons that everything was ok. I would not have to pretend when she was home. It would all be fine. I knew all about the gastrostomy feedings and the colostomy. We could give her oxygen at home just as well as they could do it at the hospital.  I was scared, but I was ready.

It took hours for everything to come together so we could go home. It always does, but that wait was interminable.  I needed to have my little girl home.  I needed to be mom, I needed to be in charge, not to rely on nurses or wait for doctors anymore.   The time dragged while we waited for all the necessary pieces to come together.  I had to demonstrate that I could do the procedures Maggie needed. All the specialists had instructions and follow up appointments to confirm. There were well wishes and celebration too. Finally, the hospital had to ensure that we had all the supplies we needed to care for Maggie at home. Colostomy bags? Check. Feeding tubes? Check Syringes? Diapers?  Check. Oxygen?  Oxygen tubes? On the way.

Oxygen, life sustaining though it may be, was almost my undoing. The oxygen guy showed up at the hospital and started loading “e-tanks” next to all my stuff. There were at least six of them.  I was supposed to move these tanks along with all Maggie and all of her supplies and her shiny car seat.

My resolve failed. This was more than I could do. I could not even get her home. How in the world could I take care of her? 

 I stared at those tanks knowing I was a fraud. The nurse saw my stricken face and asked what the problem was. I fought back tears, pointed to the six heavy tanks, and said I cannot move all of those. Without hesitation, she barked at the oxygen guy saying, “You cannot leave this stuff here, take it to the patient’s house.”  She was the type of woman you do not trifle with. He sighed and loaded the tanks back onto the dolly.

 I looked at the nurse and gave her a wan smile. This was a house of cards and we both knew it. We just had to get home before a large wind came and knocked out house down.

 That was 18 years ago and oxygen tanks, still part of our life, do not scare me anymore The house of cards still stands.

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