Saturday, March 10, 2012

It takes a whole village

Anyone who knows me knows that I have a bit of an independent streak. In fact, I’ve always been a bit proud of my independence and self-sufficiency. I didn’t like to accept offers of help from other people, because, after all, in me that was a sign of weakness. (Oddly enough, though, I didn’t think that anyone else needing help meant that they were weak; I just liked to be independent.)

Having a child has changed all that. And, in fact, one of the biggest struggles for me in this whole journey has been admitting that Mark and I can’t do this on our own. We need other people in our lives, and accepting help from others is, in fact, a good thing. But this is a lesson I find myself learning over and over again. So often I find myself buckling under the pressure of the daily struggles Mark and I deal with. But when a friend asks how I am or what s/he can do to help, I find myself giving the glib response, “We’re fine.” I gloss over the hours we spend worrying about Timmy. I pretend that I’m not exhausted from the long days I work in order to have enough time to take off to go to Timmy’s appointments. I cover up the sense of loss I feel when I go for an entire week without quality time with my son, only seeing him while doing trach care in the evening or while valiantly struggling to keep him on my lap while we sit in yet another waiting room.

And there are some days when the “We’re fine” response really is the truth. I’ve come to believe that we have an incredible ability to adapt, that it doesn’t take long for something which once seemed overwhelming to become normal. These days I can’t really imagine a life that didn’t involve juggling a million different specialists or breathing a sigh of relief on the weeks when we “only” have one appointment to take Timmy to. But there are some days when I’m falling apart on the inside; these are the days when it takes a special friend to look past the glib response and fake smile and say, “No really, how are you doing? What can I do?” And it takes an even more special friend to somehow figure out what I need, without me having to know how to ask.
And I don’t think our situation is unique in any way. We all deal with rough stuff. We all have bad days, and we all go through hard times. And yet, we all want to pretend to the rest of the world that we have it all together, that there aren’t times when our sanity is hanging by a thread.  But Mark and I are lucky—there is something about Timmy’s situation that has pulled people together to support us. Maybe it’s his infectious smile, or his ability to endure more tests, procedures, needles, and pain than any child should have to endure, and yet do it with grace, humor, and even joy.  But whatever it is, people have rallied around us and have given us strength when we have none left and have held us up when the thought of taking another step along this road is more than we think we can handle.

A few days ago I sat down to make a list of all the ways in which people have poured love, support, and encouragement into our lives. And I find myself, once again, overwhelmed by people’s generosity. Friends, family, people I’ve never met who know pieces of Timmy’s story, even complete strangers who have never heard Timmy’s name. All have come out of the woodwork to show us love and to walk alongside us down this road.

Early in the NICU days we didn’t know which side was up. I went from having a perfectly normal, healthy pregnancy, to having a preemie born via emergency c-section but who would come home in a few weeks, to feeling like every day I was hearing a new, seemingly devastating diagnosis. And somehow, without my even realizing it, a wall of support was gradually being built around Mark and I. Friends and family came and sat with us during those long days in the hospital. A few old friends even came in from out of town to be there for us, to do anything we needed. (One friend even stayed with us for a few weeks!) We quickly found ourselves with a freezer full of meals and giftcards for the hospital cafeteria. We were given gas cards and monetary gifts to help with the many miles we drove between the hospital, Mark’s job, and home each day. Friends offered to clean our apartment. A friend was at my side when I came home to the results of an apartment fire. (Thankfully our apartment and belongings weren’t damaged, just full of smoke.) 

One friend did much of our Christmas shopping for us. We got cards and letters of encouragement. Several of my friends took pictures of themselves cheering for Timmy and sent them to us to post on the wall in his room. They also made us a Christmas tree for Timmy’s hospital room, full of ornaments with reminders to us of the blessings in our lives. And somehow, with the support of the people around us, we gradually began to piece things together again, and life began to take on the shape of a new normal.

And then suddenly, just before Christmas, I found myself sitting in an ambulance while my son was transferred from Columbus to Cincinnati. It felt like much of the support system we had built around ourselves in Columbus was beginning to crumble. And in Cincinnati, complete strangers stepped in to fill those empty places in our lives. The nurses, therapists, child life staff, and doctors at Cincinnati Children’s Hospital are some of the most amazing people you will ever meet. And Cincinnati quickly became our home-away-from home. During that long four months when Timmy and I were living in Cincinnati and Mark was living in Columbus, I was a mom by day and a student by night. I could leave to go do work in the evenings, knowing that Timmy was in the care of some pretty fabulous night nurses. Each afternoon when I left to eat lunch and sometimes fit in a little work or a short nap, I left knowing that Timmy was in the hands of people who loved him. And looking back on what should have been (and was in many ways) a very stressful and difficult experience, I find myself treasuring the memories of the Cincinnati NICU. If any of our friends in Cincinnati still read this blog, please know that you touch lives in ways that you will never know, and we will always be grateful.
Looking back on those days in Cincinnati, I continue to be amazed at the ways in which our family benefited from the generosity of complete strangers who will never know our names, will never read this blog, and will never know the kind of impact they made. For four months I lived in the Ronald McDonald House. It was built by the donations of thousands of people over the years, and it’s run by a huge staff of volunteers who give of their time to help bring families through very difficult times. Groups come in and make meals—in the evenings when I was trying to decide how long to stay at the hospital, I never had to worry about what to make for dinner. When I was depressed  because I was alone and stressed and exhausted, I would open the door of my room and smell freshly baked chocolate chip cookies, made by a volunteer group. (I fully believe that the fuel that kept me going for all those months was the ridiculous number of freshly baked chocolate chip cookies I consumed.)I loved seeing the laughter and smiles on kids’ faces when a group would bring dogs in to play with the kids staying at the House.  If you’ve never been there, the Ronald McDonald House is a special place.
And finally, after 187 days of waiting, we made yet another transition, and full of excitement mixed with trepidation, we brought Timmy home from the hospital. Once again, friends and family cleaned our apartment, put together Timmy’s crib, filled our freezer with meals, and stood by to be there for us in whatever capacity we needed as we adjusted to life at home. When we were so tired we couldn’t see straight, my sister came over once a week to watch Timmy overnight so that we could get one luxurious full night’s sleep a week (and what a difference that made!). Family members stepped out of their comfort zone and learned how to do trach care and what to do in case of an emergency, so that the burden didn’t solely rest on Mark’s and my shoulders. Our church family held a baby shower for Timmy, and once again I was overwhelmed by the love and generosity of the people in our lives. Friends passed along to us a pack-and-play and a changing table. Several friends brought over boxes of hand-me-downs, and we often joke that Timmy is much better dressed than either of us! (It’s not a joke, actually, it’s true.)

And then, a couple of months later, when we felt like we finally had a good routine established, we packed everything up and moved to Maryland. This was a scary time for us—we were leaving behind the support network of our friends and family and were moving to a new city, to a new place where we didn’t have any friends. And we found ourselves in a situation where we were the only ones who knew how to take care of Timmy, and we worried about what would happen to him if something happened to us. And when we got here, old friends from our home church welcomed us with open arms. They were here with Chick-fil-a in hand when we arrived at our new apartment. They helped us unpack, helped us settle in, and helped us realize that we weren’t alone after all. They introduced us to our church family, and even made arrangements for their friends to bring us dinner when we first moved in! We sought refuge from a hurricane in their home; they offered to fill their freezer with breastmilk so that Timmy would be well-nourished; and they have been rocks of encouragement and support in the months since we moved here.

Soon after, while still in the throes of the uncertainty that comes with a new move, a new job, and a new environment, we had a visit from some friends from back home. They came as messengers from our old church; one friend is a speech language pathologist, and she had the brilliant idea to get all of our old friends together to buy Timmy a voice. We opened a box to find an iPad, together with a number of communication apps on it. It would never, ever, ever have occurred to me to look into buying an iPad for Timmy. I always thought they seemed a little silly. But anyone who knows us (or who reads this blog) knows that we rarely leave the house without Timmy’s iPad. I could go on and on about the benefits of the iPad and how we couldn’t survive without it, but suffice it to say, this is yet another situation of a friend knowing far better than us what we needed, and an army of friends stepping in to help.

Life here has settled into as much of a routine as it possibly can. And you would think that after all these months home from the hospital (we’re one month shy of a year home!), we would have things under control, but we don’t. Just when we think we’re getting a handle on things, something changes. And we find that we still lean heavily on the friends who have stepped in to be our family in our new home. Because of Timmy’s trach, it’s impossible for Mark and Timmy to go alone to doctor’s appointments. Each appointment requires me to take off at least half a day of work. And when Timmy often seems to be averaging a minimum of one to two appointments a week, that’s a lot of time off, especially when you add in trips to Cincinnati, hospitalizations, and the like. Thankfully my workplace allows me to flex my hours, so I often work long days in order to have the time to take off for doctor’s appointments. But it’s still not enough. And this is where some of our dear friends have stepped in. We’ve had a number of friends sacrifice large chunks of time in order to serve as chauffeurs for Timmy and Mark. They’ve also stepped in on  nights when my work schedule prevents me from being able to be home in time to put Timmy to bed. Bedtime is a three-person job—it takes the combined efforts of Timmy and two adults to change Timmy’s trach ties safely. And once again, when we realized that the task of raising this little boy is too much for us on our own, friends were standing by.

More recently, a friend from high school saw the pictures of our recent hospital stay. She’s a 31 consultant, and thought that the products that she sells would be of use for us. She offered to host a 31 party for Timmy—the party is currently running online, and when it closes we’ll be able to use the hostess rewards from the party to get some much needed organizational help for Timmy’s medical supplies. Just before we got her email, we had been talking about how critical it was for us to get things organized for trips on the road and to the hospital, and without us saying a word, she figured out a need we had and how to address it.

Looking back over the last 17 and a half months is an overwhelming thing to do. At so many times along the way, we haven’t known how to keep going, and then a family member, a friend, or even a stranger comes along and gives us what we need to keep going. Valentine’s Day was several weeks ago, and I found myself wondering what the point of the chocolate and candy and pink fluffy cards is. (Not that I don’t love chocolate and candy; I could give or take pink fluffy cards.) And then I looked around at the people who have sacrificed their time, their money, and their emotional energy to walk down this road beside us. THIS is love. People lay down their lives for us all the time. People serve as our ears and our eyes and our arms and our feet on the days when we’re too weary to keep walking. The body is a unit, though it is made up of many parts…

Some days it’s still a struggle for us to accept the help and the love of the people around us. And every time we ask for help, we worry that we have become too much of a burden. After all, we don’t want to be seen as a “charity case”. But Augustine said, “Charity is a virtue which, when our affections are perfectly ordered, unites us to God, for by it we love him.” So perhaps, just perhaps, being on the receiving end of people’s “charity” is not such a bad thing after all.

Wednesday, March 7, 2012

On Eating...

On Wikipedia, it says that I like to eat fruit, land plants, aquatic plants, and salt licks.  It also says that I need to eat almost 10,000 calories per day to maintain my body weight.  Sheesh, if I wasn't a moose, I would think I was a pig!

What am I trying to get at?  My friend Timmy's diet is very very different from mine and has drastically changed since he was born.  When he was born, the doctors fed him his mommy's milk through a tube from his mouth all the way to his stomach.  A few days later, though, they took an X-ray of Timmy's chest and realized that Timmy's lungs had milk in them.  So they stopped feeding him milk and started giving him a kind of special food called TPN (Total Parenteral Nutrition) that was inserted right into Timmy's blood stream with an IV which makes my chewing the cud seem downright old-fashioned!  

Before long we found out that Timmy was born with what's called a type 3 laryngeal-tracheo-esophageal cleft which means that his trachea and esophagus started out life joined together at the top.  So when the milk refluxed up his esophagus it was getting into his lungs as well which made him not breath so well.  So the doctors decided to give Timmy a way to pump food straight into his stomach without having to go through his mouth and potentially into his lungs.  They gave him a G-tube about a month after he was born which is a nifty piece of plastic stuck in a whole in his stomach that connects to a pump with a bag of milk.  And VOILA!  Timmy is able to be fed real food, not just the TPN, right into his stomach which helped to minimize the risk that the milk would get into his lungs.

For his first 6 months, for many different reasons, the doctors switched Timmy back and forth from milk through the G-tube to milk through the J-tube to TPN through his blood stream.  A few weeks before he discharged, some feeding therapists helped Timmy take his first sips of milk.  They gave us the tools to slowly start to teach Timmy how to eat by mouth.  In April of 2011, though, Timmy was totally on G-tubed milk and they decided he was finally ready to go home from the hospital after 187 days (SUPER DUPER!).  

I, Mortimer the Moose, would like to take a break from this in-depth docTIMentory to give you a small Arthur update: our monkey friend has recovered well from his G-tube and tracheotomy surgeries.  He has greatly appreciated all the well-wishing, love, and support from so many of his stuffed family and friends.

Now back to our Timmy update:

So we finally got home with Timmy on milk through his G-tube.  Timmy's Mommy and Daddy exposed him to a lot of different tastes so that he could start to realize that his tongue was meant for more than just sucking on his binky.  It is hard for trached kids to have much of a sense of taste since that sense is so closely related to the sense of smell.  The air coming in and out of the lungs doesn't go through the mouth and nose like it does for you and me.  It completely bypasses the mouth and nose and goes through the trach coming out of the neck.  So since it's hard for Timmy to smell stuff, it's hard for him to taste stuff too.  So Timmy's Mommy and Daddy tried hard to expose him to lots of kinds of tastes to help him explore what he could taste.  They've discovered that Timmy likes lots of strong flavors like garlic, peaches, apples, BBQ sauce, and Turkish and Thai food.

At times, over the last 10 months, Timmy has fluctuated between eating orally more and being dependent on G-tube feeds more.  For a while his reflux (food coming up his esophagus from his stomach) was really bad which would decrease his desire to eat with his mouth.  At those times Timmy would have to be feed almost entirely through his G-tube.  During the fall of 2011, Timmy started throwing up more and more. He was very uncomfortable (and this moose was doing lots of laundry!) and the doctors discovered that he was aspirating his reflux/vomit, and it was starting to damage his lungs. This is when we started to get very worried about Timmy.

Then in November 2011, Timmy's GI specialist from Cincinnati Children's hospital decided to try something new to help Timmy eat more with his mouth.  He and a dietitian from Cincinnati came up with what they called a "pureed by G-tube diet".  The goal was to maximize the calories and at the same time minimize the volume in Timmy's tummy at any given time so that the food is less likely to come up his esophagus and damage his throat surgery site. (Did I mention that Timmy's stomach is smaller than that of the average moose-let? smaller still than the average boy his age)  After only being on this new diet for one day, we all noticed an immediate difference in the way Timmy felt and acted.  He suddenly stopped vomiting.  A few days later, we noticed his blood oxygen levels were getting much better.  Then a few days later, he started eating more.  We didn't see a significant increase in his eating habits until in January 2012 he got a stomach virus from one of his many hospital stays.  That took a week or so to get over (during which we were continuing to try to give him his pureed by G-tube diet but he was only tolerating about half of his normal calories).  After he got better, though, he was super hungry so we gave him some pediasure (we were out of whole milk at that point) and suddenly his little boy tummy was replaced by a big moose tummy!  He drank 6 ounces of pediasure in one sitting when before he had only been able to drink maybe one ounce in one sitting.  Timmy's Mommy and Daddy were thrilled but a little nervous...what if Timmy vomits it all up?  But he kept it down and after a few days he was consuming the majority of his calories with his mouth!  His parents cut down on his G-tube puree feeds more and more until he was eating 100% of his calories by mouth.  Who would have guessed that a stomach virus was the answer to Timmy's eating difficulties!

Some days Timmy eats more, some less depending on how well he feels.  But now he has finally made a connection between the hunger he feels and his ability to alleviate that hunger by eating food.

It makes this moose give a WHOOP and want to celebrate by indulging in some chocolate-covered aquatic plants :)

I took a bunch of pictures and here they are:

Timmy's pureed by G-tube diet looks like this when we mix it every day:

8 oz of pediasure and 2.5 oz of turkey, beef, or chicken:

3.5 oz of some kind of fruit or veggie with beta carotene in it and 3.5 oz of some kind of green veggie or apples:

1 Tablespoon of canola or veggie oil and 4 Tablespoons of sugar (a couple months ago Timmy's Mommy and Daddy asked the dietitian if we could replace the sugar with another 3.5 oz of veggie and she said that would be ok):

1/2 cup of dry baby cereal and then we shake shake shake it all up and VOILA it's done:

All that stuff makes about 20 oz of goop which is enough for one day.  When he eats orally, however many calories he eats we subtract that many calories from what we give him through his G-tube.  

Timmy's caloric goal each day is around 900 calories.  At 9am, 12pm, 3pm, 6pm, and 9pm what he does not eat with his mouth we push in that many calories of puree through his G-tube.  Below was Timmy's Thanksgiving weekend schedule which includes all his medication times, trach and G-tube care times, and equipment/supply cleaning schedule.  We put this schedule on his dry-erase board for the benefit of all the family who came for Thanksgiving.  Timmy sure did keep this moose and a bunch of adults busy 'round the clock!  

You might be wondering how we feed Timmy after he's already asleep.  He goes to bed at around 7pm each night after his 6pm dinner, puree feeding, and trach/G-tube care time.  When he's asleep, for his 9pm puree feeding time we simply push in the puree with a 60 ml syringe through his G-tube just like we do when he's awake.  For the most part he stays asleep while we do this.  I can't think of too many parents that feed their kids while they're asleep :)

As good as our Medical Equipment Company is in getting us all the stuff that Timmy needs to be healthy, accidents do happen especially where little wiggly boys are concerned.  Occasionally his feeding extension which connects his G-tube to the 60 ml syringe that we use to pump the puree through will come detached from the syringe (or the medicine port in the feeding extension will pop open by itself).  When that happens we get puree goop on the carpet...not a fun thing to clean up.  We have had to change out much bedding while trying to keep Timmy asleep when this happens during his 9pm puree feeding.

Back in December, Timmy really liked plain whole milk yogurt.  Now we have to mix some sort of extra flavor into it for him to get interested.  It's really important for Timmy to be able to interact with food with no expectations whatsoever so that he won't develop any negative connotations in regard to eating food. So when we weren't depending on oral feeding for caloric intake, we let Timmy play with his food:

At Christmas time he liked green milk.  Green milk he liked at Christmas time; it was sublime...etc.

Even during hospital stays, we tried our best to keep him interested in the bottle and eating food:

In this pic, you see Timmy being Timmy while his Daddy tries to give him a puree feeding using a longer connection to the G-tube called a Farrell bag.  The added length helps Timmy's Daddy feed him even while Timmy crawls around at a 100 miles an hour!

More cute pics of Timmy enjoying his food:

We quickly discovered that eating wasn't fun when Timmy was already tired:

Below, Timmy is enjoying a frozen smoothie with Mommy:

As you can see, eventually Timmy started to let us feed him without needing to play with the spoon which really helped his oral caloric intake!

Just to recap: there were some really good reasons why the Cincinnati GI specialist wanted to try this pureed by G-tube diet on Timmy (and no, one of them isn't to make his parents' lives harder). It's a relatively new thing. They had only tried it on about 200 other kids before they tried it on Timmy.  The other kids that were on it all had a kind of stomach surgery called a Nissen wrap which basically means the stomach is wrapped around itself into a kind of knot that would allow food and liquids to come down the esophagus and into the tummy but not allow food and liquids to reflux up the esophagus and out of the mouth.  The trouble that kids sometimes run into with a Nissen is that they will painfully retch over and over again with no way of releasing out of the mouth what is making them retch.

Timmy was the first at Cincinnati to try this pureed by G-tube diet without a Nissen to start out with and it has made such a difference.  We are so thankful that his GI specialists were able to come up with a way to reduce vomiting without resorting to, in Timmy's case, an unnecessary surgery.  Because of his smaller-than-normal stomach, the Nissen would have made the size of his stomach even smaller which would have made it even harder to keep food down and would have increased the chance that the Nissen would make him retch unceasingly without being able to get relief.  Before the pureed diet, Timmy's vomiting was doing more and more damage to his throat surgery site but because of this change in his diet, the vomiting has completely stopped altogether.  We fully anticipate seeing improvement in his upcoming July ML&B scope due to this change in diet (ML&B stands for microlaryngoscopy and bronchoscopy which is just a fancy way of saying that the doctors put a very thin camera down Timmy's trach and take pictures of his airway and lungs).

All this talk about food has made me famished!  I think I might go lick some more salt.  I wonder if I could die it green for St. Patty's day...

Bye ya'll!