Wednesday, September 17, 2014

Finding trust: A lesson in humanity.

We looked at the river front map for no less than twenty minutes today.
One evening last week I found myself in a CVS in the middle of Detroit, fighting off panic. I thought the baby's fever was back and envisioned the worst - another 16 days in the hospital, another infection to fight. Tears threatened to burst through at any second, and all I could think about was what were going to do with another hospital stay.

 I ran through that CVS with not one but two additional thermometers to add to our collection. I was relieved to see there was only one person in line in front of me, but quickly realized the checkout wasn't going as fast as I had expected. My credit card was in my hand, ready to be swiped; my wallet was open for me to return the card quickly. Anxiety spread through my body as I calculated whether I had enough cash and/or it was ridiculous enough to leave a $20 on the counter for two cheap thermometers and to run out the door. I was starting to really panic.

For whatever reason, I felt that panic and fear leave me as I watched the gentleman in front of me. He was in a wheelchair, his body moving in slow and deliberate movements, and super polite to the cashier. He asked the cashier to swipe his card for him, and shared his pin so the cashier could enter it. The gentleman asked for help putting his card in his wallet and then in his bag. I marveled at his trust; he didn't know this cashier at all and was so confident about asking for his help and his trustworthiness. The cashier didn't hesitate once to help him. It was such a pure interaction.  Just a few hours before I had been standing next to a couple who perpetuated - in their children, nonetheless-  the fear of Detroit people have, and here was the most blind faith trust I had ever seen in a person. But what happened next surprised me most, because the man in the wheelchair asked me to put his purchase in the bag hanging off the back of his wheelchair.

I set my things down on the counter, took the bag from the cashier and put it in the man's wheelchair. He trusted me too, and I felt honored. I felt blessed, for I had done nothing to deserve this trust other than exist in line behind him. He thanked me, and I assumed he'd be on his way. Yet he then quickly spun his wheelchair around and said, "I thought I should see the face of the person I'm thanking." He smiled warmly at me, thanked us both again, and left.

The man didn't know a thing about me other than my spot in line. He didn't know my gender, my race, my upkeep, my financial appearance, my history, my body language, my urgency. What he did know was trust in humanity -- that we are all, in our hearts, better people than we often appear. Even though he knew neither myself nor the cashier, he blindly gave us his trust because we were in this moment with him as fellow human beings.  The other things about us didn't matter, because no matter who was behind him or ringing up his things, he must have believed that there was enough good in those individuals that they could be trusted.

This man didn't just give me trust, he gave me a sign from the universe. We can all trust a little more blindly, a little more lovingly. Some people might say he trusted without abandon because he had no choice. I don't think that's true though. He had a choice, just like the rest of us do. But his choice always erred on the side of belief, whereas the rest of us seem to err on the side of fear. Belief seems to be a much happier way to live. People may surprise us in a good way sometimes. Humanity might just have more hope than we expect. What a lovely surprise that would be for us all to learn.

Sunday, August 31, 2014

Dear Barrett, month 1

1 month old! 11lbs, 22 inches. #barrettgrowsup #barrettinthehospital
Dearest Bear:

You've been earthside for a full month now. We've enjoyed very much getting to know you and your adorableness.  So far you have been very laid back and patient, not at all what I expected from a second child.  If you're upset or want something, you're pretty content to let us know for awhile. We usually pick up on whatever it is you need but if we don't, there's no issue letting us know.

Captain America came to visit Barrett! @mottchildrenWe were home two weeks before your fever, and I'm sad to report that you're spending your one month birthday at Mott Children's Hospital at U of M. All said and done, we will have been here sixteen days.  Mostly they've been uneventful days filled with your mega dose of the special antibiotic, vital checks (you, like all babies, despise your temperature read under your arm and your blood pressure taken), and checks. There were some tough times, like the day you blew through your fourth IV or the day they inserted the picc line. More or less, though, you've weathered this storm like a champ. Daddy and Griffin have visited every day, having dinner with us. You still adore sleeping snug on daddy. There's no one you sleep better on than him.

You have the cutest quirk: your noisiness. Everyone comments on it. You eat noisily, you breath noisily. You make these soft grunting sounds when you want something (usually to eat). It makes the doctors and nurses laugh especially - sometimes they can hear you eating from the hallway! I joke that this will make dating hard at sixteen; I'll have to make sure you eat before any dates so you don't scare them away. :)


In the last thirty days you've grown like a week! Starting at 8lbs, 7 oz, you are now up to 11lbs! I can almost not believe it. You've grown 2 inches from birth, putting you at


Your brother may have been a long and thin baby from the get-go but you are definitely more robust. We love having a chunky adorable baby. Just gotta stay healthy, little one.

Baby Barrett
Your biggest fan of all time is your brother. He adores you like I've never seen a brother adore his younger sibling. From the moment you were born he has taken care of you; when he came to visit you in the hospital at birth he wore a superhero shirt and told everyone he wore a cape to protect you like a good superhero. Griffin grills the nurses to see if what they're doing is going to hurt you, and then tells them he will protect you. Mostly he calls you "my baby" and wants to know where you are at any given moment.  There's nothing that boy wouldn't do for you, my sweet Barrett. Nothing. It broke my heart when the doctors told us they didn't think he'd be able to visit in the hospital because not only could I not imagine going two weeks without seeing Griffin but I knew his heart would be crushed if he was told he couldn't see you for two weeks. Thankfully the doctors changed their minds and came up with a way for you to still see your big brother. I don't think they could have found a way to keep him from you anyway. He has drawn you pictures, snuggled with you, and protected you. He can't wait for you to be home!

Bear, there's not a single thing about you that we don't love and adore. You are the best fourth member our family could have ever asked for. You are exactly perfect in every single way, and even after just thirty days I can hardly remember a time where you weren't in my life. Sometimes I watch you sleep and just marvel at your beauty and perfection. How did such an amazing creature come to be? I feel so fortunate to be your mama, little one. Thank you for choosing us to be your family. I hope we'll do right by you.

Love,

Mama and family

Baby Barrett 

P.S.: If you're curious about the letter I wrote your brother on his first monthly birthday, you can find it here

Friday, August 29, 2014

More time at Mott.

Sixteen doses down, twenty six to go.
This is where we were last week...right now we are starting dose #10! The doctors wanted to move all doses up by an hour so that we could go home Monday early afternoon instead of Tuesday at 1am, but the darn pharmacy doesn't know how to pull that off for some reason so they're doing some doses 7 hours apart and others 8. I still don't understand why, but it means B will have his last dose at 6pm on Monday night. Then they'll pull his picc line and after all the discharge stuff is done we will get to go HOME! For almost fourteen days I have been inside. I haven't driven, haven't slept in my bed, haven't been in my home. It will be exciting to break out of this joint with a well child.

Captain America came to visit Barrett! @mottchildren 
Yesterday, Captain America cleaned our window! Barrett enjoyed the view. And I must say, superheroes clean windows just as quickly and efficiently as you'd expect. He was gone in a flash!

Still snuggling. Surprised? They just grow up so fast. I do have to say, though, I am really enjoying all these snuggles. We pretty much spend all day like this. People bring me food and clean my room. I watch TV and snuggle this sweet boy. Not such a bad deal, right?

Monday, August 25, 2014

The hardest part of the hospital stay.

There are some things that have been much easier to handle during this hospitalization than expected. Normally I am a stir-crazy person if I'm stuck in the house the entire day; I've been known to do laps around Target or to go get coffee just to get out of the house. So the prospect of 2 days here, let alone another 14, was overwhelming. It has actually been one of the easier parts. I've gotten fresh air three times since last Sunday morning, twice for food pickups and once for a break where I just stood in the courtyard (tired of sitting).

The days go by faster than you'd expect. We have a routine, set in place by meals. I order a meal and kill 45 minutes before it arrives. There are constant people in the room - volunteers, med students. They break up my day. Many stay and chat for a minute, telling me stories that are entertaining and warming. Between feedings, diaper changes, and snuggling, the days go by fast. I watch cheesy cable tv and indulge in shows I don't see at home (we don't have cable anymore).

 Ryan and Griffin visit every day around 6pm, and those are my favorite hours of the day. I hear his feet as soon as they hit our hallway - how do I always recognize his footsteps? We have dinner together and catch up; often we play a game or watch a movie. We hug, we snuggle in bed together. We are a family for those two hours, where everything seems almost normal except for the setting. I feel like a whole mama again. Ryan can snuggle with Bear and usually I lay down for a nap to supplement my nightly sleep; it's the most peaceful sleep I can get, with my whole family together.

And then, each night, the inevitable happens: it's time for them to go. We hug, kiss, say goodbye. I tell my boys I love them and that I'll see them tomorrow. And each evening as I walk them to the door, I cry. It's hard to say goodbye each night, knowing that the happiest time of my day is another 24 hours away.  It's dark and lonely when they leave, even when I can snuggle Bear close as he goes to sleep.

One more week. We're already (hopefully) . We've already done 8 nights and have another 8 to go. We will be ok and I know eventually this will be just a distant memory. For now I'm trying to enjoy the moment as he won't be this little forever and there are so many things to appreciate and feel fortunate for. It's still hard though.

Boys not as grumpy as pictured.

Friday, August 22, 2014

Barrett goes to the hospital.







Sunday morning, around 2am, Barrett woke up. He was a little bit harder to settle than normal (which isn't saying much because he's such a chill kiddo) but he felt warm. The room felt warm to me too so I didn't think too much about it, but opted to check his temperature anyway. I could only find my big kid thermometer - an ear one - so I started there. The reading was just at the high end of the acceptable level so I dug around and found a regular thermometer for the good old rectal temp. I couldn't get it to max out, but the highest we got it to was 100.8. A quick call to the ped confirmed what I had suspected: they suggested we head to the nearest ER.

We passed the nearest ER, St. Joe's, because I will never allow any member of my family to return there again if I can help it after my previous fiasco, and opted for the U of M peds ER. It is amazing to be able to go to a peds ER instead of a regular ER. The consensus was pretty immediate: a baby this little with any fever needs to be admitted and have a series of tests run. We hit the ground running.

Before we left the ER they had established an IV, done a lumbar puncture (much harder on me; he slept through the entire thing!), done a quick clean catch of urine, and taken some blood. His vitals were fine other than a temp of 100.3 - lower than at home, but just beyond their threshold for treating.  The plan was to treat with broad antibiotic and grow the cultures to see what we were dealing with.

We happened to get a room on the 7th floor, which is pediatric oncology and hematology, and settled in to wait for the cultures to grow for 48 hours. I assumed then we'd go home on antibiotics. I started counting down the hours, fully aware that 48 hours was nothing compared to what many of these families faced.

Daddy snuggles.At 48 hours the only thing that had grown for sure was his urine, which meant a UTI had likely caused the fever. Thankfully the blood and spinal fluid cultures were clear. And then, just as I thought we were almost set to go, the results of the urine culture came back: the cause was an antibiotic resistant strain of E. coli. This changed the game and instead of going home we were committed to two weeks in the hospital with IV antibiotics every 8 hours. We were also quarantined because of the nature of the immune systems on our floor, so no more trips even to the ice machine. Initially they told us no more visitors, and then lifted that to visitors over 16, and my heart was broken. Thankfully they agreed to let Griffin continue to visit as long as he didn't touch anything on the floor on the way out. Without their daily visits I don't know if we could make this work. 

More hospital snuggles.We've been here five days now. It hasn't been as bad as I had thought, actually - the days go by fast with all the people in and out and the routine of things. We have dinner together every night as a family, often provided by loving friends or family who have sent a delicious warm meal or gift card for a warm meal. I get lots of baby snuggles and he's doing well, fingers crossed.  And of course it's all worth it to get him to 100% again. I'm looking forward to the days when this is behind us and a distant memory of a rough start to our time as a family of four.