Thursday, June 27, 2013

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:


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.
Hello out there in Blogland. I'll bet you thought I fell off the end of the earth, but NO! I am here and finally signing back in.  I will say something is up with blogger and it distracted me for a while. It seems some 40,000 folks in Germany have tuned in this week. I know that isn't accurate, and I've been trying to get to the bottom of the confusion.

Just in case I'm the hottest thing in Germany this week: Guten Tag! to all my German friends.

Thursday, June 20, 2013

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.

Friday, June 14, 2013

Fathers Day

Fathers' Day is a great day. I remember how lucky I am that I had such a great father, and married such a great father who also has a great father. My kids are lucky too. They grew up with one great dad and two wonderful grandfathers. That is a lot of positive influence. it's an embarrassment of riches.

My own father was a huge force in my life. In fact he was pretty much a huge force in the lives of many people. That's just the kind of guy he was. I was lucky to have a dad like him and I miss him every day.

My father in law is still a huge force in our lives. He is as good a man as you will find and I know he has a big role in making my husband the person he is.

My husband is an exemplary father. He is creative and entertaining. You've seen Maggie's' Halloween costumes and the boys had their fair share of those as well. Easter morning found all the Action figures lines up throughout the house holding chocolate eggs. Oh, and Christmas wrapping - don't get me started. You cannot imagine some of the wacky wrapping jobs he comes up with to make a run of the mill gift into a laugh riot.

Even aside from the great dads in my life, there is another reason for me to like Father's Day.  I had a baby on Father's Day in 1990. (We caught/trapped a skunk on Father's day 2012. (Maggie World: Green Acres) We kept the baby and arranged for the release of the skunk. Glad we didn't reverse that.)

Tim is my Father's Day baby. He was a week late arriving and I was just a leetle bit cranky. Earlier that week I bought Steve two Father's Day presents, one from 2 year old Eddie and one from the new baby who I was just SURE would be home with us by the time Fathers' Day arrived. When Sunday came and I was still pregnant I practically threw the second present at Steve and said, "if this baby doesn't arrive by midnight, this present is going back." Lovely, wasn't I? Not wanting to deprive his dad of a second gift, Tim arrived at 10:50 PM. Now THAT is a Father's day present. Really haven't been able to top it since. But I have to admit the skunk was pretty hilarious.

To those lucky enough to be the child of a great dad, stop and say thanks to him if he's still with you or stop and remember him if he's not. To all the Fathers out there, Have a great day. If you are involved in your kids life in a positive way, you are doing the most important thing imaginable.  Take a rest. You've earned it.

Monday, June 10, 2013

Grate day.

We survived the first week of summer. And that's no small feat. It takes a lot of logistics to make that happen. I forget how tiring it is to care for Maggie when she's not in school. Oh we have fun together, but I do a ton more lifting and car transfers when she's on vacation from school and it is physically exhausting. Especially if you go out too fast. It's a marathon and you have to pace yourself.

I overdid it on Day 1 with about four separate stops, meaning four different transfers etc, and we did progressively less and less as the week went on. Rookie mistake. I should know better. But it takes a few days to get the logistics just right.

There are logistics in every thing I do. I have to think about the entire day, and be as efficient as possible with outings, parking etc. Once that's done I have to carefully plan my attack or getting into a place and being able to use the suction machine and find things in my purse all at the same time. Every move needs to be considered in advance. Sometimes even then things go awry.

On Thursday morning,  I was bound and determined to get some packages mailed that have been sitting here forever. Maggie was greatly entertained as I taped them shut, one with a LOT of tape as it was in a box just a wee bit to small for its contents. Feeling accomplished we headed for the post office on our way down to the main library at Civic Center.

There is no place to park the van at our post office. It is on a  very busy corner. There are several spaces on the hill on the side of the building, but 1) they are on a hill which is very difficult for unloading and 2) none of them have sufficient space for the ramp. The few spaces in front are flat, but they are reserved for postal vehicles in the morning. There was room just across the street.

I parked the van, unloaded Maggie, put my two packages under my arm and felt very pleased with myself. Funny how satisfying it is to get things in the mail, even when as here, I had delayed it for several weeks.  I held the wheelchair with one hand and carried the two packages with the other hand.

Sadly, the curb cutout for the wheelchair at that particular corner is too steep. Generally they wouldn't be a huge problem as I would have two hands on the chair. But this time it was. I had to be very careful or Maggie would shoot onto Geary Street with its six lanes of traffic whooshing by. I carefully and slowly went down the too steep ramp without losing control of the chair. Excellent. Unfortunately, a container of her food fell out of the bag onto the street. I had to pick it up, but both hands were full. I carefully placed Maggie's wheel against the curb. God forbid I actually put down the packages.

As I bent down to get the food, balancing the packages all the while, Maggie rolled just a couple of inches. No problem. She was against the curb, she couldn't go far and could not possibly go into traffic. She was just slowly moving along the edge of the curb. Out of the corner of my eye I saw her front wheel heading for the sewer grate. I tried to stop it, but too late. The wheel fit perfectly into the grate. I tried to tilt her chair back and the new rocker back we finally got did just that - rocked. Maggie was laughing her head off. I put the packages on the curb, stood on the sewer grate and lifted the front of her chair with all my might.

Free at Last, Free at Last.

I saw a woman sitting in her car watching this whole thing unfold with a look of horror/pity on her face. She was sitting at the traffic light waiting for it to change and I had to cross right in front of her. I tried to look as self satisfied as I felt 5 minutes earlier with my packages under one arm and pushing the wheelchair with the other, but the veneer had peeled away and I was exposed for the fraud that I am. I didn't want to see her pitying look, so I stared straight ahead.

Maggie of course  gave her the homecoming queen wave as we passed, though. She was having a ball.

We did head down to civic center after that.  I wanted to go into City Hall and talk to someone about that curb cut, but I just didn't have the energy. I settled for  a picture of Maggie with the magnificent City Hall behind her.

Wednesday, June 5, 2013

Waiting for the other shoe to drop....

Six weeks after breaking my foot I am back into regular shoes. Yay!! It's still a bit tender and my confidence needs a bit of work, but it's time to move forward.

Let me tell you I will not miss pushing Maggie in her chair while limping behind it in either the walking boot or the "Darby"  shoe that I've been wearing since April. We were a bit of a pathetic site. Yesterday at the museum some concerned lady said to me, "Why are you doing the pushing with your sore foot?"  I just smiled and said, "what are you gonna do?""  She smiled back, but in a sad and sympathetic way.

Too bad I didn't have a basket, we probably could have raised some real money.

Yes. It is time to lose the special shoe.

When I went to the orthopedist yesterday he asked about the pain and function.  I told him pain was manageable but stairs were still difficult. My instructions are to use the Darby shoe as needed but I should expect to need it less and less. Good news.

 As he wrote in my chart and we talked, I mentioned that I had to hurry down the stairs in the middle of the night without the shoe on and felt like I had set myself back a little bit. He continued writing and said without irony and without looking up, "well, don't do that." (Makes sense). I just said nonchalantly, "well, it was a bit of an emergency because my daughter's trach broke and the nurse was yelling for me to help her."

His head whipped up and he looked right at me and said, "What did you say?"
Thinking he didn't hear me, I  pointed to my neck and said, "she has a tracheostomy, and her trach tube broke."

I really was just saying it in passing because it explained why my foot was still sore.  It was just light conversation as the appointment was wrapping up.  But he was clearly and completely surprised by my statement, and I think my nonchalance was just as surprising as what I said.

 He stared at me with that perfectly calm doctor face, but his eyes were wide. Without looking away he said, in that perfectly calm doctor voice, "Yeah, I can see where that might require you to hustle."

His calm demeanor and voice were totally betrayed by the sudden rapt attention and wide eyes.

I've seen doctors remain calm on the outside when they clearly weren't inside and it can be very scary. But this time it was funny.  He has absolutely no reason to know anything about Maggie. He is my doctor, not hers, and not affiliated with any doctor or hospital that I use with Maggie. Her trach, broken or otherwise, didn't effect him professionally at all. But he knows what having a broken trach means and was concerned. It struck me very very funny to see his surprise give way to his immediate professional reaction.

As I walked gingerly back to my car -- in my very own shoes -- I found myself giggling.

Who else could have that conversation and interpret all the nuances the way I did?
Hardly anyone.
Who else would find it so very entertaining?
I'm thinking no one.

That made me laugh even harder.

Monday, June 3, 2013

Graduation details

Phew. Last week was crazy busy. Maggie's graduation took center stage, of course, but there was still the last day of school. and remembrances for teachers and bus drivers and nurses and paras. All done.

Graduation itself was a great day. Maggie could not have participated in the ceremony without the help of both Nurse Janice and Miss Laura who gave up their afternoon to make it work for Maggie. I am so very appreciative.

None of Maggie's classroom peers have gone through graduation. I'm not sure why, but perhaps that was the choice of their families. Perhaps because kids in special ed don't finish school until they're 22 so graduation from 12th grade isn't as important. From now until 22, Maggie will be in "transition" But there is no ceremony or anything at that point. This was the end of 12th grade and the traditional time for graduation and I  thought it was very important that Maggie get her day.

There were times that I doubted that decision. I was inconveniencing a lot of people and I had to ask, Was this for me or for her?  Was the long, loud ceremony too much to ask of Maggie? Nurse Janice reassured me that Maggie deserved it and we pushed on.

Steve and my mom and I sat in the beautiful auditorium at the school (modern schools cannot compare to the splendor of a building from the 20s). As the students started marching in, I positioned myself to get a picture of Maggie who was somewhere in the middle of the pack. I asked the man next to me to tell me if he saw a wheelchair. I was perfectly positioned for the shot I wanted.

When she appeared at the back of the auditorium I got a little teary. That's to be expected. What I did not expect was the (rather unruly) crowd letting out a huge cheer when they saw Maggie. Maggie LOVED it and just started waving like a Homecoming queen. Same thing happened when they called her name to get her "diploma"*. Huge cheers!  Weeping mother.

Of course none of the people in the auditorium know Maggie. They were cheering for the "kid in the wheelchair" but that was fine. As the remaining student processed onto the stage I felt a tap on my shoulder. The man I asked to look out for the wheelchair was there asking if that was my daughter. When I said yes, He gave me a wide smile and said "Congratulations." More weeping.

Maggie was absolutely in her element. I'm glad Maggie had her day and I'm glad I got to be part of it.Oh and that perfect picture?  I was so overwhelmed with emotion that I never clicked the camera. Doesn't matter. The memory is permanently burned into my mind.

But here are a few other shots that I didn't include the other day.
                                                Maggie and Dad

Maggie getting her diploma*

 Grandma Carmel watching her last of 20 grandchildren graduate from high school.  Today June 3 is her birthday!  Happy birthday to her!

*Maggie is not getting a diploma, but a "certificate of completion"