On the night you were born

Today is an exciting day for our family – Clare is 1 year old! Every first birthday is a joyous occasion, but we are extra thankful to be celebrating this milestone. Our girl is a little under the weather this week but we are managing her symptoms at home with a little extra support and comfort care. We are thankful to be doing that at home as opposed to in the hospital like the times before when she wasn’t well.

I wrote the following letter to Clare as a reflection on her first year. It was the most challenging, rewarding, exhausting, educational, and prayerful year of my life. 366 days ago I could never have imagined this would be our life today. But here we all are, going strong…ClareStrong.

Dear Clare,

My sweet and determined girl. You’ve helped me learn a lot about myself this past year.  Let me tell you a little about what I’ve learned about you:

Your entrance into this world was a quiet one – you had a weak cry and needed a lot of assistance to clear the fluid from your mouth, nose and lungs. Little did we know that was just the beginning. The first days, weeks and months were uncertain as we treated the issues that you presented, all the while unsure as to the underlying problem. In and out of the hospital, some admissions scarier and longer than others, all leading up to your diagnosis four days shy of four months old. The entire time you were so brave! Always courageous and faced each test, procedure, treatment head on. By the time December came, we knew something was really wrong. There were many sleepless and scary nights before your last admission. We knew we needed to keep you safe and help you grow but that came with a cost – it wasn’t an easy decision choosing a tracheostomy and all that it would entail. We knew instead of coming home you’d live at a rehab facility for months until you were stable enough for discharge and only after dad and I had enough training to take care of all your needs. And once home, it was all up to us (along with the help of our amazing nurses).

You are determined. And smart. So so smart. You have learned to hold up one finger when asked how old you are – that took only a few times of showing you (See for yourself: How old is Clare?). You love peek-a-boo and “Wheels on the Bus” (your favorite parts are making the horn go “beep, beep, beep” and making the wipers go “swish, swish, swish”). We love when you wave “hello” and “goodbye” too. My favorite is your latest trick – blowing kisses! You can sign “more” and “all done” which has empowered you to communicate with others and have a say in everyday activities. You love to clap! Yay for Clare! And you clap to cheer on others too. Your eyes light up when you see people that you love and trust. We are delighted when you kick your legs and flap your arms to greet us. You love reading books and cannot wait until it is time to turn the page. You love popping bubbles and even more so, watching your brother and sister pop bubbles. You keep a close eye on Liam and Regan as they run around the house. They adore you as well. For the first few weeks after you came home from Shaker, Liam would comment how the “whole family is here.” Each morning they pull themselves up on your crib to give you a kiss and say “good morning Kware” and say good night before going to bed the same way. You are close to mastering switch toys and are already using a tablet as a way to communicate. GiggleBellies and Little Einsteins are your favorite videos to watch during treatments. You are growing and getting stronger. We are amazed at your growth and development this year. You are almost 20 pounds and 29.5 inches long – 40% percentile for weight and 70% for height! You have five teeth and I think you’re working on your sixth. You recognize friends and family but are still unsure around strangers.  You look to me when you are not sure about something. I love that you trust me that much. You’ve progressed. Although you are medically complex and lack muscle strength, you do not let that slow you down!  You have great head control, can sit unsupported for a few seconds, roll side to side, reach above your head and bring your feet to your mouth. You love anything that crinkles which makes trach care challenging since you grab at every package we open. There isn’t enough time in the day to work on all the things you need to get bigger and stronger. We are doing our very best to make sure you are getting all the help you need.  You keep us on our toes but as we’ve gotten to know you better, we are able to figure out if you need assistance or suctioning based on the looks you give and the numbers on your monitors.

Because of you, we have made many new friends…wonderful people who care so deeply about you and your well-being. Your nurses who love you like you were their own. I am thankful for the blessings each of them bring to our family. All five of them called, sent a text, or were here to celebrate with you. Beth brought you balloons and Cathy brought a gift and book. Your friends at Cleveland Clinic Children’s – M 33, M 43 and M 53 nurses, doctors, PCNAs, and respiratory, occupational, physical, and speech therapists. They saw you (and mommy and daddy) through some very uncertain days. They came to your rescue more than once. Your friends at Shaker for helping us transition home – they were with us for all the laughs, tears, achievements and setbacks. They helped you grow, develop, and thrive. The five months you spent at Shaker provided us the tools and support as we learned how to care for you when you came home. Our friends at Shaker also made sure everything was ready for you when you came home – nurses hired to cover all shifts, your supplies and equipment, future doctor appointments…they prepared us with everything we needed to start the next part of your journey.

You have so many fans. People we’ve never met who have been praying for you, encouraging you, supporting you. You are loved by so many. Your grandparents, aunts and uncles, great aunts and uncles, cousins, friends, neighbors, many communities (Gesu, Ss. Robert and William, VASJ, Our Lady of the Lake, and A Special Wish to name a few)…the out-pour of support has been incredible and I am truly humbled by everyone who has reach out to us this year. All because of you.  Clare you have inspired others around you, me especially, and I’m so proud to be your mom.

Each night as I tuck you into bed, I tell you that I am proud of you, that I am grateful for you, that I love you, and that I will do whatever I can to keep you safe and happy. I tell you to behave and then pray that you stay safe so that I can see that beautiful smile the next morning. I sing the refrain from, “My Lovely Rose of Clare” then you turn towards your aquarium, reach to turn on your fishies and gather your lovey and start sucking on your finger. It’s the same thing, every night.  I find it comforting we have a routine and I think you do too. One of our favorite books is “On the Night You Were Born.”  I read it to you in the hospital, at Shaker, and now at home:

On the night you were born,

the moon smiled with such wonder

that the starts peeked in to see you

and the night wind whispered,

“Life will never be the same.”

Because there had never been anyone like you…

ever in the world.

Heaven blew every trumpet

And played every horn

On the wonderful, marvelous night you were born.

– On the Night You Were Born by Nancy Tillman

This year has been a challenge but I am so so grateful for you and the lessons you have taught me. I can’t tell you how many times someone has said to me, “You have your hands full.” I read something that answered that statement with, “You should see my heart.”  And it’s true. My heart is so full. Happy birthday my sweet and courageous girl. May you have many, many more filled with health, happiness, love, and laughter.

I love you more than you will ever know,

Mommy

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“Oh my lovely rose of Clare, you’re the sweetest girl I know. The queen of all the roses and the pretty flowers that grow. You are the sunshine of my life, so beautiful and fair. And I will always love you, my lovely rose of Clare.”

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December 21, 2014 - the night before Clare's tracheotomy.

December 21, 2014 – the night before Clare’s tracheotomy.

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alysa

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Discharge

Hello! It’s been too long since my last post. I cannot believe it is already mid June – where does the time go?!

So so many things have happened since my last post in April.  Clare had a barium swallow test to see if she is aspirating food when fed orally. She was spoon fed banana flavored baby food and we watched it flop towards the back of her throat and then go up and down as she attempted to swallow. Gravity did most of the work which made for an unsuccessful study.  Needless to say Clare failed the test.  The results were not surprising.  I’ll admit I was some what disappointed.  I have been told and read numerous articles about Nemaline so I know that the muscles in her face, neck, and chest are the ones mostly affected. I know that swallowing is difficult and something that will hopefully develop over time. Still..I had hope the study would show more strength and progress.

Another event was a quick trip to Main campus on Mother’s Day for an unidentified respiratory illness. When I say “quick” I mean relative to Clare’s past visits – this one was an eleven day stay, and the last three of those were trying to schedule transport to get back to Shaker.  A few positives from this admission:

– Clare is stronger.  She recovered faster than previous respiratory illnesses.

– We know her better.  This makes troubleshooting much easier and issues are resolved faster than before.

– I know her better. I’m thankful to have a team of doctors and nurses who know us well enough by now to trust my judgement and include me in her support care plan.

– I KNOW HER BETTER.  Clare had a few scary moments of oxygen desaturation and aspiration after vomiting. This comes with the territory with her diagnosis and having a trach and being ventilator dependent. The silver lining was that I witnessed it, helped her recover and now am better prepared for when it happens at home.

After returning back to Shaker, her doctor’s thought it would be best to slowly wean her back to baseline settings. When ill, Clare needs more vent support so that means increase in pressures, respiratory rate and adding oxygen.  She has remained on 1/4 liters of O2 to ensure we can be sent home with oxygen if she needs it.  Insurance will not pay for emergency O2 (from what I’ve been told) so if she is discharged home with an order for it because she is currently on it, we will have oxygen at home the next time she is ill.  This, hopefully, can keep her out of the hospital when she catches a mild respiratory illness.  Clare is also teething and cutting her fourth tooth.  This causes more secretions on top of the baseline ones she already has trouble managing.  Two weeks ago, she was ill for a few days – it was secretion overload which, when suctioned, caused gagging and coughing which then led to vomiting.  Good news/bad news I was sick with a head cold so I could not be there to take care of her but in my place, Bill stayed by her side and got to be a part of care.  This was a great opportunity for him because when Clare is sick, it is me by her bedside while he is working or home with Liam and Regan.

Now for the moment you’ve all been waiting for…the day we’ve been anxiously waiting for since we trached Clare in December – we have a discharge date!  I can hardly believe I am typing these words because so many times it seemed as if this day would never arrive.  As long as things stay the same in her status, Clare is scheduled to be discharged and return home this Tuesday, June 23!  This will be six months + 1 day since her tracheostomy, and a total of 205 days since she’s been home. We brought Clare to an outpatient pulmonary appointment on December 1, never imagining what the next six months had in store for our courageous girl.

Coming home meant finding nurses.  We have hired five total to cover two – 8 hour shifts a day.  We have coverage every day from 7 a.m. – 3 p.m. and then 11 p.m. – 7 a.m.  I know the transition home will be challenging for everyone.  Hopefully it goes smoothly and we find our new “normal” sooner than later.

Coming home also meant finishing some projects around the house.  Kudos to my hard working husband and his friend Jason for getting everything ready for Clare’s arrival.

Coming home meant doing a 24 hour period at Shaker with Bill where we did all of her care (meds, respiratory therapies, feeds, etc.) I am typing this now after only 3.5 hours of sleep (Bill is catching up on his now) and two full days of nurse training, waiting for Clare to wake up and do the extensive morning suctioning, IPV and cough assist therapies so please excuse my tired run-ons, poor grammar, absence of pictures, etc.  I’m too tired to even read it over before I publish.  I find it funny that compared to previous posts, this one has the most exciting news but the least amount of enthusiasm. Ha. Yawn.

I’ve decided to start a Facebook page for Clare as a way to share more frequently. I know it will be easier for me to post a quick update. The blog is a labor of love but I’m finding I cannot post as often as I’d like because I just do not have the time.  When I eventually do, there are too many things to share because of the lapse in posts. Clare has a lot of fans and I hate to keep them waiting to hear her newest adventure.  I will not abandon the blog (unless my dad joins Facebook – yeah right that isn’t happening), but I have a feeling FB will be the primary way I update. Please find and “like” us on Facebook – Clare Bear Strong

Lastly, I couldn’t post without a thank you to all those who have helped us along the way.  Whether you brought over dinner, made a donation, helped with Liam and Regan, sent a card, read the blog, liked a post, sent a text or called, offered a word of advice, said a prayer, gave a hug…you’ve helped us more than you could ever possibly know. To the Gesu, Ss. Robert & William, and VASJ communities – thank you for supporting our family during our most troubled times.  Thank you to our families, friends, and neighbors for going above and beyond countless times to make our lives a little easier, a little brighter.  We are eternally grateful.

Until next time, ClareStrong!

A few steps closer

Clare has been back at Shaker Rehab since March 9 and life’s been busy these past five weeks. Clare is also making so much progress that as soon as I write something, I have to go back to edit with an update! Sorry to all the Clare fans out there who have been waiting. For the first time in a long time, I have only good news to share!

Clare’s transition to Shaker round two went pretty smooth. There was some momentum lost when she returned from main campus after four weeks sick with a cold. Even with that set back, Clare’s therapists continue to be impressed with her progress. We know milestones may be achieved later than usual (or so is the norm for NM) but achieved they can be. She was pretty tired her first few days back and not breathing above the lowest respiratory rate on her vent when asleep. Her rate was bumped from 26 to 30 which means she could not take fewer than 30 breaths per minute (BPM) because the vent would supply that at the very least. That was a first for her so naturally we were concerned but it’s not worrisome unless she is breathing that way all the time. Thankfully that is not the case. She then went down to 28 and today, back to her baseline of 26 BPM. Progress!

Clare has also been tolerating feeds through her j tube and I can’t stop kissing those tube-free cheeks! It’s also helped her continue gaining and growing. She’s 14 pounds 8 ounces and almost in the 15th percentile for her weight! Not to mention how long she’s gotten – Clare is wearing 6-9 month clothes. Growth!

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My new favorite picture of Clare. The mischievous smile and chewing on her toy using both hands captures how far she has come.

I’ve been asking her speech therapist, respiratory therapists, and pulmonologist about deflating her cuff to work towards a passy-muir valve. The PMV attaches to the ventilator circuit and redirects air flow through the vocal folds, mouth and nose enabling voice and improves communication. The PMV offers numerous clinical benefits beyond communication, including improved swallowing, secretion management, and oxygenation. Last week they deflated her cuff and Clare had no issues. Since she maintained her volumes and seemed comfortable with her cuff deflated, her pulmonologist agreed to trial the PMV next week. Development!

We are also working on swallowing since that is difficult for people with Nemaline. She has no oral aversions which is great considering she hasn’t eaten orally since she was a couple weeks old. She is initiating a swallow when prompted which is great news too. Clare has a swallow test scheduled for April 30. They will syringe fees her to see watch what happens when swallowing. The last one she had was at a week old when she aspirated thins so fingers crossed she has more control now that she’s stronger. Possibility!

Another new for Clare is wearing kinesio tape. This is a thin, stretchy, elastic cotton strip with an acrylic adhesive that can benefit a wide variety of musculoskeletal and sports injuries. Kinesio tape provides neurosensory feedback which helps to activate the neuromuscular response and activation of muscles. It can also help facilitate muscle contraction and endurance. If you’ve seen Olympic beach volleyball player Kerri Walsh in action, you’ve seen kinesio tape. Clare’s therapists are using it on her back, wrist, fingers, and around her mouth.

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Kinesio tape to help stretch and activate Clare's muscles.

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Do you think kinesio tape will straighten my crooked pinkies? 😂

Another exciting milestone achieved was when Clare began rolling from side to side. I posted this video in my last update but it’s so amazing I’m posting it again: Progress! Determination! Development! Hope! Faith! Look!

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Therapy!

Bill and I are often asked when Clare is expected to come home. We are moving right along with trach care and education. Before she is discharged, we need to be signed off on many areas. The picture below is the check list. It’s a little outdated so we are even further along than this but it gives you an idea of how much there is to learn. This isn’t set up as a crash course – the education is designed so that everything is discussed, practiced over and over (and over and over) again so we get into a routine and feel comfortable taking care of Clare when she comes home. Next week we will complete our CPR training and be one step closer to completing our education.

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We are now on to emergency trach changes (one person changes it versus two people) and further along with vent settings. Almost done!

Setting up home nursing is currently in the hands of our case manager, insurance company and nursing agency. We were just told a few nurses with pediatric trach experience are now available so hopefully we can start interviewing soon. Just talking about setting up interviews means another step closer to Clare coming home.

Clare’s unit, south court, took a field trip to the Rainforest on Monday. I got to tag along and enjoy doing something “normal” with her for a change. She did great. No issues with stimulation and her vent didn’t alarm once which means she was breathing easy and not distressed. It was a great afternoon.

Life for our family has changed drastically during these past seven months. Every day is a gift but Clare turning seven months old is a reason to celebrate. When I think back to the first few weeks of her life, I realize how far we’ve all come – Bill, Liam, Regan, and I…our families and friends, and, most importantly, Clare. It’s hard to recognize it when you’re in the moment but some amazing things have emerged, even during the most challenging times. Somehow we survived. We’ve all grown, mostly for the better, and it’s such a cliché I know but what doesn’t kill you does in fact make you stronger. I think (I hope/I pray/I have to believe) we’ve been through the toughest times. It can only get easier, right?

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Six months! Everyday is a gift but half way to one is a great reason to celebrate!

As good as the past couple of weeks have been, I’m holding my breath and always waiting for the other shoe to drop. She’s well today but an episode of a high heart rate/respiratory rate/throw up/fever/respiratory distress/insertsomethingotherthanbaselinehere and I’m gearing up for something bad. It’s hard to believe and even accept that she is stable and progressing when so much of her short life she was not. In medicine, doctors look at the patient as a whole instead of each “set back” and I’m trying to do the same. That’s a challenge for me and, I suspect, something I’ll always be working on.

One positive in all this is the new friendships and connections we’ve made. The communties we are blessed to be a part of have continued to go above and beyond to help us. We are grateful to our friends at Gesu who are patiently holding my job, always asking how they can help more than they already are and, most recently, offering the proceeds from the annual Lenten Soup Luncheon to help with medical expenses. You all have a special place in our hearts. Thank you also to Ss. Robert and William Parish and School for their kindness and prayers. Every month they designate a new cause to be the recipient of the school Mass collections and other fundraising efforts as a way to teach their students about stewardship. They choose Clare to be the recipient for the month of March. We were so touched to hear that news and thankful for the many SRW families who have reached out to us. We are grateful to be a part of your community. Also, people we’ve never met have contributed to Clare’s gofundme page. I’m amazed. We’ve also been welcomed into the ASW family. A Special Wish brings a ray of sunshine to families like ours who have children with a chronic, life-threatening disease. Clare has been too sick to enjoy many of the fun things offered but Liam and Regan have had a blast. As much bad as there is in this world, there is more good. People are so kind. I’m smiling as I type just thinking about the goodness in others. I wish I could hug each and every one of you. I’m all about hugs and kisses and smiles and thank yous these days. My mind is full of fear and anxiety thinking about the unknown but my heart is full of love and gratitude and hope. I’m trying to let the latter lead me.

A fundraising event is being planned for May 17th at our alma mater, VASJ. Information has started to circulate on Facebook but for those that haven’t seen it yet, below is a flyer with more information about purchasing tickets. Thank you to the Parent Action Committee at VASJ, the McKeon Educational Group, the VASJ community, and everyone helping plan and organize this event. You are all a gift to us. Thank you.

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Thank you all for the continued love and prayers. Your support is helping us more than you’ll ever know.

Until next time, ClareStrong!

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Celebrating our heritage on St. Patrick's Day with family.

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My Irish princess!

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Love having the opportunity to take a picture with these three together.

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My new mantra. And dance I will!

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Taking a stroll around the unit.

For your viewing pleasure:

Take a tour of Clare’s room!

These two I shot before her gjtube procedure so they are more than a month old but still worth sharing:

Sisterly love. This video makes me laugh every time I watch it. #littlesisterproblems

Where are you going Clare?

Happy Birthday to me!

I know it’s been awhile since my last post and I have so much more to say but I couldn’t wait to share this video from yesterday.  For a hypotonic almost seven month old with a muscle disease THIS.IS.HUGE. HUGE! Happy Birthday to me!

(I apologize for the quality. It was recorded for a text message.)

CLICK HERE! We’re startin’ to roll baby!

P.S. The pink around her mouth is kinesio tape…I’ll explain more in another post.

ClareStrong!

Frustration

Clare is still at the Cleveland Clinic Children’s hospital main campus. It’s been two weeks since she tested positive for rhinovirus (common cold). She had surgery scheduled and cancelled twice because she was not well enough when the time came. We moved to the general pediatric floor a week ago and had a few bad days and nights recently. Clare’s cold moved into her chest and x-rays showed she had some mucus plugging, possibly from atelectasis (atelectasisis is the collapse of part of the lung caused by a blockage of the air passages -bronchus or bronchioles- or by pressure on the outside of the lung). This puts Clare in respiratory distress which, in turn, causes her heart rate to become high and forces her to breathe rapidly.  I’ve seen her this way a handful of times and each time I’m as terrified as the last.  It is horrific watching your baby use every muscle in her body to breathe for hours without resolution – watching the monitors obsessively hour after hour, praying for her numbers to drop into a safe range or for her to let the vent take over so she doesn’t have to work anymore. You expect someone to have an answer, someone to figure it out, someone to provide her relief. And as I watch I pray and I cry and exhaust myself trying to help get her through these difficult minutes/hours/days. I thank God now for things I never imagined I would be grateful for – consistency with good nurses and respiratory therapists, residents who oversee her care through numerous rotations, nurse practioners who listen to me and trust my judgement, ICU doctors who ask my opinion and remember what works and what doesn’t for Clare, specialists who have treated others with the same rare condition, stable vitals, wet diapers, poopy diapers, baseline heart and respiratory rates, a feeding tube that flushes easily, improvement in an x-ray, a child who smiles at everyone who comes to her bedside even through all she’s faced…all positive things that give us hope and get us through another day.

Now that her cold is clearing up and she is almost well enough for surgery, we are weighing the benefits of the fundoplication versus jtube. The fundoplication is where Clare’s stomach will wrap the bottom of her esophagus so that food can eventually go down but it should not come back up. This means we could feed her through her existing gtube and not worry about aspiration.  It is permanent and an invasive procedure, one that requires more time in the OR and in recovery. The jtube is something to bridge the time between now and a point where she may tolerate feeds to her stomach. Most babies with hypotonia have muscle weakness when it comes to reflux so doing the fundoplication may be the best option. Turning her gtube into a gj means her formula will still feed into her jejunum (small intestine) but she will no longer have a tube in her nose. The third option is feed her pedialyte to her gtube and then eventually formula and see if she tolerates it without refluxing too much that she isn’t getting the calories she needs. This way runs the risk of aspiration so they’d have to do it under careful observation. I’m exhausted just typing this out let alone figuring out which option is best for her. There are four doctors involved in this decision and everyone has a different opinion as to what to do which makes this incredibly frustrating.  Since she was four days old, Clare’s gone through countless nasal feeding tubes of different sizes, changing as often as she pulled them out, as often as they clogged, as often as the position of the tip moved. The thing I’ve grown to loathe is one of the main things allowing her to gain and grow. It’s allowed her to thrive. We’ve been waiting for this day for what seems like an eternity and we are so close that the anticipation is consuming me. Whatever the procedure, we cannot wait for the day we pull that tube forever.

We’d like to thank our friends who have started a gofundme account to help raise money for our medical expenses and to those who have contributed thus far (or shared the link, liked the post, left a comment, etc.). You never think you’ll be in a situation like ours until you are and then it’s all you can do but keep your head above water…financially, emotionally, spiritually…we would have drowned by now had it not been for all of you. So thanks. I’ll say it until my last breath – we are blessed and so so grateful.

Until next time…ClareStrong

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On the mend

We were told a “simple” cold could put Clare in the ICU. They weren’t kidding.

She tested positive for rhinovirus (common cold). The good news is she is negative for RSV. Her lungs sound clear now that she is getting her IPV treatment (see video below). She had a couple fevers this week and she is teething so we are keeping her comfortable with Tylenol and Motrin.  She is still on the hospital vent because she needs the extra support. Her doctors started to wean her settings to get back to her baseline on her Trilogy ventilator but her numbers were not as good so they increased them again.  There is a good chance we will hang out in the PICU until her j tube procedure on Tuesday (if she is well enough for surgery) and then it’s back to Shaker for rehab. She must have known she was supposed to get her nd tube out on Tuesday because she pulled it out for us later that night. This girl likes to keep us on our toes…

Clare turned five months old on the 11th (yay!) and reached 12 pounds today (double yay!) #growClaregrow #gainClaregain

Thanks for the continued prayers and support. It helps keep us going.

Click on the links to see Clare Bear in action:

My funny valentine – I think someone is feeling better.

IPV treatment – When the video opens in YouTube, click on title for more info on IPV.

💜ClareBearStrong

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Clare's come a long way in five months. Her courage and determination amaze me.

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It took a couple days but I finally got a smile.

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Cold + teething = unhappy baby. Rubbing her gums provides a little relief.

A Setback

Clare was admitted to the PICU yesterday evening at around 7 p.m. Her oxygen level was lower than usual (at her baseline she doesn’t require oxygen support) and her respiratory rate was concerning.  When her heart rate began to climb, it was time to go.

She continued to worsen as the night went on. Around 2 a.m. she was tachycardic and her respiratory rate was high. To give you an idea of the distress she was in, her baseline heart rate is 130-150 awake and 110-120 sleeping.  Her respiratory rate should be between 30-50. For most of last night, her heart rate was in the low 200s and her respiratory rate was hovering in the 70s. She was working way to hard to breathe and she spiked a fever a couple times. Clare kept up for the most part but after a dose of Tylenol, Motrin and Ativan, she finally let the vent take over which is keeping her respiratory rate steady at 40. After a few sticks from two nurse practioners and an anesthesiologist resident, she finally got a scalp IV for fluids. A couple saline boluses later, her heart rate is finally lowering.

They swabbed her and we are waiting to hear if it’s a virus. They suspect RSV but we’ll know soon enough. Most likely Clare’s course of treatment will not change so she’ll be here for awhile with increased ventilator support and comfort care.

Her j tube procedure that was scheduled for tomorrow is tenatively pushed back until next Tuesday.  Fingers crossed she is well enough.

I’m tired and scared but so relieved she is under the watchful eye of M 53. It’s also easier to go into this knowing they know Clare, her history, and her diagnosis.

Please pray that our brave girl makes a quick recovery.

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On the charts, baby!

We survived our first week at Shaker Rehab! Clare and I packed up last Monday afternoon and headed to our new (temporary) home.

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Let's blow this popsicle stand!

Shot out to the Donald Martens’ guys who provided our transportation via ambulance.  Just put it on our tab 😉

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Heading to Shaker Rehab.

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Sun! Snow! Fresh air!

Clare did great on the ride over. I had more anxiety than she did. We were welcomed with open arms when we got to Shaker.  We have our own room (yay!) but it’s the size of a janitor’s closet (boo!)

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Clare's new home for the next couple of months.

Monday was all about getting acclimated. Nurses, social workers, therapists, and doctors came by to say hello and we got a run down on how things operate. Clare will work with respiratory therapists (RT) and receive ocupational therapy (OT), physical therapy (PT), speech and language therapy (SLT), and recreational therapy. Some of it will be done in her room (both in and out of her crib) and some will be out in the play area. She may even go for a dip in the pool!

I spent Monday night sleeping on a pull out chair and Clare started therapy on Tuesday morning. In between her scheduled therapies, I’m learning about her trach care – when to recognize respiratory distress, what needs to be within arms reach at all times, the settings on the vent, and troubleshooting.

She is tolerating her sessions and impressing her therapists. Her OT Terri told me today that she can’t explain it but Clare looks at her and it’s like she knows exactly what’s going on. That is something I’ve thought from day one and others have said too. She truly is special.

The settings on her vent went up slightly which is expected because she is being challenged. She does not desat and maintains great numbers on her monitors. We know she can handle going off the the vent because we’ve done it for short periods but since the goal is to gain and grow, we haven’t pushed her (yet).

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Transferring toys from one hand to the other. Show off!

A few things need to happen before Clare can come home – Bill and I need to be signed off to do all her trach care (we do daily collar changes, suctioning, and weekly trach changes as much possible), we need to interview and hire nurses for home care (dreading the back and forth with our insurance company already), our home needs to pass an electrical inspection (anyone know a good electrician 😜), and we have a few things to do to make sure we can accommodate Clare’s accessories.

Since the trach, Clare is gaining and growing – she is just over 11 pounds, 6 ounces which puts her in the third percentile for weight. She is on the charts, baby! She has grown 4.5 inches since birth too. She started slow out of the gate but our girl is working hard to catch up. 

Shaker is different. It’s more relaxed in some ways and stricter in others. I can’t quite explain it…I’m still getting a feel for the way things work. I love the therapies Clare is receiving and we are getting more and more comfortable with her trach.  All that being said, there’s no place like home.

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Sneaking in a little ot stretch during cuddle time.

The good
□ I am checked off to do most of her care so no more waiting on a nurse or respiratory therapist when she needs suctioning.

□ Clare seems comfy in her new digs. She can come out of her room and sit on the “stage” in front of the nurse’s station where all the kids hang out and play.

□ She has her own room with a bathroom. 

□ One of our favorite respiratory therapists from Main Campus, Ed, works at Shaker a few days a week.

□ I don’t have to drive around the parking lot for an hour looking for a spot and it’s free.

□ Clare’s procedure to turn her g tube into a gj tube (see previous post for more info) is schedule for next Thursday. Only ten more days of dealing with a tube taped to her face!

□ We made new friends. Hey Amanda! 😄

□ We are one step closer to going home.

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Hanging out in South Court with all my new friends.

The bad:
□ The cafeteria food tastes like cafeteria food and only open for breakfast and lunch (closed on weekend). Not many places deliver, either. The places that do, well, let’s just say I’d rather go hungry.

□ The place still feels foreign to me. I’m the new girl at school. Everyone is nice but there is a learning curve. And after almost five months and countless caretakers later, I’m kind of tired of explaining everything to everyone…all.over.again.

□ Saying goodbye everyday.  I hate leaving my baby in the care of someone other than us. I’ll never get used to that feeling.

□ We planned on bringing the kids to visit on Sunday but Liam woke up with a cold. Thank goodness for Skype!

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Hi Clare Bear!

The ugly:
□ I found a pulse ox burn on her foot Saturday afternoon. There is a procedure in place to rotate sites so this can be avoided and something that never happened during any of our hospital stays. Unacceptable.

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Pulse ox burn. Momma was not happy.

So far, the good outweighs the bad (and the ugly). And everyday we are one more day closer to bringing her home.

So until next time…ClareStrong!

It made all the difference

Two weeks before Clare’s scheduled surgery, we held a family meeting with her pulmonologist, gastrointestinalist, and PICU doctors. It was there that someone advised us she would have the best chance to grow and thrive if she had a tracheostomy. It’s the first time we heard the word trach, and it’s now made all the difference in her health. We started researching, questioning, searching to see if this was the right choice for our baby. Choosing a trach meant choosing to have a ventilator to assist in our child’s breathing for the unforeseeable future. We made this decision before a diagnosis, something that was very difficult to do. We knew her prognosis could have been a dismal one. Was this an unnecessary procedure that would be too much for our daughter? Or maybe it would make all the difference. By the grace of God, I am 100% certain we choose the right decision for Clare. We keep hearing the same sentiments from her caretakers who saw her before and now after the trach – “what a difference”, “she looks like a different baby”, “she looks so good!” they all say. She’s tolerating the Trilogy vent without many adjustments and gaining weight. She tipped the scale today at 11 lbs. 3 oz.!

Monday evening was very busy for our peanut. Clare got two shots (her four month vaccinations), her weekly trach change, AND switched to the Trilogy ventilator. Her night was uneventful but come Tuesday afternoon she was not a happy camper. A little lethargic and tachy (that’s tachycardic or elevated heart rate for all you non-medical people or anyone not living in the hospital for months at a time ;)) She hovered in the 180s and 190s until a dose of Tylenol calmed her down. When awake, her heart rate is usually in the 150s/160s. Clare responds well to Tylenol…it always brings down her fever or heart rate. It really is a miracle drug. All she’s been through, it’s easy to forget she is a four month old who will have typical baby struggles like needing a day to recover from vaccinations or being fussy because she is teething. Two little pearly whites are popping through her lower gums. Clare Bear has turned into a drool machine (that’s even without the suckers 😄)

No real explanation for her punky status on Tuesday except I think all the events on Monday evening were a lot for Clare. Good news is she recovered quickly and on Wednesday afternoon, we transferred out of the PICU and to the general pediatric floor (M 33, the floor my sister works on). Most parents would be thrilled to hear that doctors think their child is too well for intensive care…I cried and hugged anyone within arms reach because I was scared, anxious…not ready for her to leave that type of care. How could we leave the people who got Clare through her most unstable times? I didn’t have time to digest the decision to move. It all happened so fast. The nurses, doctors, residents, respiratory therapists, receptionists, cleaning ladies…every one working on M 53 and 43 who supported us for the 51 days Clare spent under intensive care will forever have a special place in our hearts. I know they were just doing their jobs, but they saved Clare. They saw us through uncertain times, through her operation and recovery, and through a diagnosis. So yeah, I balled like a baby and grabbed everyone I could on our walk down to 33 when it was time to go.

Clare had five great days on 33. We had consistent nursing which makes a world of difference in her care and for my anxiety. Her Aunty KK worked two shifts during our stay which was extra special. We knew she was in good hands.

And finally, the moment we’ve all been waiting for (all that Clare’s been working for)…if all goes well tonight ::drum roll please:: Clare will be transferred to Shaker Rehab tomorrow morning. Just a few minutes past the main campus off MLK blvd., Shaker is the Cleveland Clinic Children’s Rehabilitation facility. This will be Clare’s home until we learn all about her trach care, her vent, interview nurses for home care, and transform our home to accommodate all her bells and whistles 😄

I’ll try to post in a few days and update everyone on our new digs. We keep hearing great things about Shaker…l can’t wait to see what’s next on this adventure.

So until next time…ClareStrong

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New vent! This is the Trilogy, what Clare will use at Shaker and eventually at home

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Clare with her friends Dawn and Phil. Dawn is a nurse on 33 and Phil works on transport. He also transported Clare to the hospital the night we came via ambulance when she was in respiratory distress.

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Our buddy Patrick, one of Clare's favorite night nurses.

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Hi sister!

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Kisses for sissy.

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Love my cuddle time with Clare.

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