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.

Tuesday, August 19, 2014

PICU.

Saturday night Barrett felt warm to me. I figured it was because the windows weren't circulating much air, but I took his temp anyway. His ear temp was on the higher end, so I managed to find a thermometer and took it rectally. At 100.8, it was high enough to call the ped. They, of course, suggested we go into the ER with any fever in a newborn. Around 3am, off we went.

In the ER they took his temp again, and this time it was 100.3. They admitted him for an initial 48 hours to run some tests and determine if there was an infection. As we waited for our room they did a spinal tap (he slept through it), got a urine sample, took some blood for cultures, and started an IV. A few hours later we were set up in our own room, awaiting the results of the cultures.

The next morning, the urine sample showed a UTI but nothing had grown in any of the cultures. At the 36 hour mark the urine was growing but nothing else was; if it had been, it would have suggested the infection had spread throughout his body and was much more worrisome. At 48 hours, nothing had grown beyond the urine but the results of the urine were shocking: the cause of the UTI was an antibiotic-resistant strain of E. coli that would require 2 weeks of IV antibiotics administered in the PICU.

We are considered "contaminated", so no leaving the room for the most part. We cannot have visitors under 16, which will break Griffin's heart. Staff must wear full get-up (gown, gloves, etc.) to come into our room. And we won't feel fresh air in our lungs until September. SEPTEMBER.