Courage

Throughout this journey, I've met so many amazing kids and families, many of the babies going through surgery and hospital stays may have no lasting reminders of all they've been through, other than their fading scar.  I had one of those moments where you can't deny that some force is working to put you in the path of another person.  During our March hospital stay, there was a CHET (Children's Hospital Emergency Transport) nurse attempting to start an IV on Will, a notorious hard stick, so they always call the CHET Team to start it.  After an unsuccessful first attempt, and while giving our little courageous guy a break from the traumatic experience, the nurse asked if I'd heard of a program called Beads of Courage.  In fact I had, and I was sad to have learned earlier that Rady doesn't participate in this program for their chronically ill kids, currently they only offer it for their hematology/oncology kids.  It is a great program where for each procedure, surgery, hospital stay, the child earns a bead, something positive during an otherwise scary or negative experience.  The website says that each bead tells a story of strength, honor, and hope.

So, skip forward to our last hospital stay.  We were admitted straight from our primary care doctor's office, and because Will was in respiratory distress, it was recommended we have the CHET Team transport him from the doctor's office in Encinitas to the hospital, rather than have us drive the 30 minutes alone.  The nurse and RT walk in, and just like that, the same nurse who asked me about the Beads of Courage program, came back into my world.  I know this is for a reason, and I don't want to neglect my role in this, so I gave her my card and asked what I can do to help start the program at Rady.  She is on the logistical path to getting the program started, but they need to raise $5000 to implement it.  This is where you come in.  I'll be posting some new print and card designs, and I'm also asking for any donation you feel comfortable with.  It will all go directly to the Rady Children's Hospital Beads of Courage program and hopefully someday soon, Will and all the babies and kids fighting serious chronic illnesses will start earning their beads.

So lucky

I know it's crazy to say, but I am so thankful for this life we've been given and so much kindness that surrounds us.  Will came home from out latest hospital stay on full-time oxygen.  The first night, my wonderful mom stayed with us while Chris went to work.  It was an adjustment from our normal, but we made it just fine.  Will is such a trooper; he didn't even mind the nasal cannula.  We even took him out in public a couple times.  Surprisingly, only one person asked me what was wrong with him.  When I explained that he has heart and airway issues, the man said, oh these kids grow out of these little holes in their hearts.  Oh, sir, if only it was that simple.  Thanks for the kind words though :)

While I was putting Will to sleep the first night, Ben came in and gave his brother an unsolicited, heartfelt hug and kiss and I couldn't help but tear up at his kindness.  His little mind must worry about his brother, so we always try to reassure him.  Will is doing great.  We transitioned him to only nighttime oxygen last night and he's been keeping his oxygen saturation level above 95.  He has also started crawling and waving since we've been home.  It's the cutest little wave, and he's so proud that he can actually get to where he needs to go, even if he is out of breath by the time he gets there.

The wave...

Forever in our Hearts

This post is long overdue, but it's taken me until now to put my own sadness aside and celebrate the courageous life of little Mathew.  Everything I wanted to say seemed cliche or selfish, but alas I'll try to do this justice.  I'm sorry if this is either of those things.

So many donations and card orders rolled in, and I cannot thank you all enough.  Many of you have been following baby Mathew on Instagram and may know that he tragically lost his life on March 28th after complications from his first heart surgery.  Through it all, his parents have remained a steadfast example of hope and kindness, and they continue to inspire me and so many others as they try to create a new normal and move forward with life.  There isn't a day that goes by that I don't think of sweet Mathew and his parents.  They doesn't deserve any of this.

As a mama, especially to one with health problems, I never have let myself imagine the pain of losing either of my children, but with Mathew's passing, I've faced that feeling head on as I struggle to be there for a friend that I made because of our bonded babies.  Bethany somehow finds the courage to get up each day, and she is my constant inspiration of living in the moment and cherishing each cry, hug, smile or even time out.  There is no doubt that our own Will is a high needs baby, but he's here, and for me, that's enough.  I'll take a thousand rough, sleepless nights of waking 5 times or needing to be held for most of the day, and I'll hug him right through each illness with joy and hope in my heart.  

Will and I, and Chris and Ben were lucky enough to spend some time waiting with the Hersey family while Mathew was in surgery on that dreadful day.  All their family had come, knowing his prognosis was grim, and we happened to be in the hospital for one of Will's respiratory infections.  This time, they let us be off the monitor and so we ventured to a garden playground within the hospital walls, a sunny spot amidst trying times.  It was the Friday before Easter and instead of visiting with the Easter bunny who was there, Will did his best to put a strained smile on Mathew's anxious family.  Later, her sister-in-law saw me sitting outside with Ben and let me know that Bethany and Justin were saying their goodbyes to their precious baby.  I tried with everything I had to keep it together, as it was just Ben and me sitting together eating lunch, but as the tears came, I had to explain to him that baby Mathew went to heaven.  That brought on so many questions and fears for his own life and that of his brother's, which I honestly wasn't prepared for.

Looking back, I felt guilty for telling Bethany and Justin, with a growing Mathew inside her tummy, that everything would be fine.  Yeah, it would be scary and an emotional roller coaster, but he would make it.  I felt guilty for having my playing, smiling children there while they were dealing with a potential pain no one could have imagined.  But what other option do you have.  They could not go on each day without the hope that he would live, and even on that last day, when the chances were so slim, they were hopeful and that is all that matters.  If we're afraid of what's to come, it will take away the joy in the current moment.  I have to remind myself of this all the time.  I am so incredibly grateful to have met Mathew and seen those beautiful eyes.  It was appropriately on CHD awareness day and both the boys came dressed in red as proud warriors fighting an unfair disease.  Mathew, I will forever hold your sweet memory in my heart and I wish the utmost of peace for your family.
    

We Heart Baby Mathew

Meet Baby Mathew.  He is one of Will's brave heart buddies.  He was born in late November and just had his first open heart surgery on February 7th.  His parents are the strongest, sweetest couple and I feel lucky to know them.  We know first hand how quickly expenses add up while living the hospital life, so I thought I'd put together a little fundraiser in hopes that it helps them in some small way.

There are two ways to donate.  You can either purchase a set of 5 stitched heart notecards for $20 (all proceeds go to Mathew and his family) or just make a donation to help them out.  You can also follow their story on their blog or his mama's instragram @bethanyhersey

(note cards)

 

Stay strong Mathew!  We are rooting for you and can't wait to see you home again.

9-5

There isn't a day that goes by that I don't appreciate this life we have created. If we had regular 9-5 jobs we'd probably be fired by now. Will is cared for at home by me, Chris, a part-time sitter and every now and then he gets some Grandma time. I can't even imagine trusting his care to a stranger or facility and today we got doctor's orders to not put him in daycare.

Today was our version of the 9-5. We arrived at 8:30 to check-in with our hungry babe. He hadn't eaten since 6 and usually eats again at 8 to take a nap, so there was lots of bouncing and singing and shushing. We received the wrong pre-surgical orders, so they had to push back the bronchoscopy until noon. He was already so fussy and I imagined another few hours of this, but our little trooper made it through and even fell asleep before the procedure. The anesthesiologist took him from my arms and whisked him away before he had a chance to realize what was up. Chris and I waited in the consult room so that if the doctor found something and wanted to repair it right away she could get our quick consent. We passed the time with some business bookkeeping and after about 45 minutes the ent surgeon came in for the update we'd been waiting for. To quote her, Will has a very interesting airway, but for now it works.

The full diagnosis is a narrowed airway, tracheal stenosis, along with pig ductis, a silly name for a pretty minor issue common with heart kids. For now we will watch him closely and hope he grows out of it, with the goal of keeping him healthy. With this diagnosis colds and respiratory infections get more serious, which is what we have been seeing with Will.

The biggest, best news came from our cardiologist. Will's mitral valve leak is down to mild/moderate from borderline severe. Yay! This means no more heart medicine, a sentence I never thought I'd write. The dr made sure to make it clear that he may need another surgery and he isn't out of the woods, but it sure feels good to be in this little clearing.

a big day

Tomorrow is going to be a big day for little Will.  It's his first echo with his corrected heart since being discharged from the hospital.  We'll be able to hopefully see how his mitral valve block and regurge are improving.  They are also doing a bronchoscopy to check his airway for a possible issue.  Maybe there is some reason behind little colds turning into big deals for Will.  It could be something that gets fixed or something that he grows out of, or maybe nothing at all.  We'll know all of this tomorrow.

It has been so good being home.  We've enjoyed lots of family outings, but pretty much Will could watch Ben play all day and be a happy camper.

 

first Christmas

Our first Christmas as a family of four wasn't exactly, ok it was far different, that we had imagined, but that doesn't make it any less special.  It was such a humbling reminder of what is important and how far we've come as a family.  I looked at Chris in awe that 15 years ago we were flirting in the halls of our dorm at SDSU, and look at where we are now.  It was indeed a Merry Christmas with the little family that we've created, making a home wherever we happen to be.