Good Grief

What does grief look like?  It is presenting itself in a wide spectrum.  Sometimes feeling completely incapable of handling something as ordinary as sitting in traffic, listening to a song on the radio, or engaging in a casual conversation.  Sitting in a therapy session incapable of breathing because the therapist asked Marlowe's name and I couldn't get it out.  To say we have a lot of work ahead of us is an understatement of gargantuan proportions.  There is a lifetime of work ahead of us.  There is no closure, no end, only adjusting and healing.  As with most tasks we take on, we're going full force.  Therapy, support groups, doctors appointments.  Reprogramming what the future looks like, while allowing as much slack as possible.  Since the day Marlowe was born, we've been taking each day as it comes, and we have to continue to allow ourselves to figure out what we need and what we can handle day by day.

Mother's Day

Dear Marlowe,

Mother's Day felt empty without you here with me.   I know it won't always hurt this way. You have already taught me so much and I now know that I am stronger than I ever thought I could be.  On my darkest day, I have you to hold in my heart, which will make it beat stronger than it could ever beat on its own.

I love you always.

xoxo,
Mommy

Hearts

On Thursday morning, we said goodbye to our sweet Marlowe Rose. She's taught us and our families the power of resilience and support. 

The support from everyone here and on Lotsa Helping Hands has been overwhelming and we don't yet have the words to articulate our gratitude. Thanks just doesn't seem enough. At this most difficult time, we are grateful for everyone that has touched our lives and more importantly, Marlowe's life.

We'd be honored to receive your notes or thoughts at MarloweRoseSimon@gmail.com.  We would like to encourage Marlowe's supporters to make a donation in her honor in lieu of flowers.  More details to follow.

Much love,

Scott & Stacey

Field Trip

Marlowe's goal last week was to increase her feeds so that she would rely less on her IV nutrition.  As of Friday, she was doing brilliantly.  She was steadily increasing her feeding, and was completely off her IV.   She started getting some of her meds through her feeds, with the goal of decreasing her reliance on IV medication.  Saturday morning she began to vomit, and has since been back to only getting nutrition through her IV.  The doctors felt they needed to do some additional testing to determine what was causing the intolerance.  Marlowe has only left her room three times in her life.   Typically, anyone who needs to examine or test her will have to come to her.  It was a long day and night for her, and 24 hours later we're still waiting for answers.

Marathon

It may be because of the Boston Marathon earlier this week, or the fact that one of Marlowe's favorite nephrologists ran, but there has been a lot of talk of her treatment being a marathon not a sprint. Marathons are physically and emotionally demanding.  While Marlowe takes on the physical challenges, we are there with her every step of the way.  We didn't get to train ahead of time, don't know what the course looks like, or what mile we are on, or how many heartbreak hills there are.  Luckily we have many fans cheering for us along the way.

If you didn't catch this story about the last man to finish the race, it's truly inspiring.  Love is strong.

http://commonhealth.wbur.org/2015/04/maickel-melamed-boston-marathon-last

Four Weeks

I'm four weeks old today!  Just partyin' with my buddies Ms. Teddie and Mr. Whoo.

Updates

An update on how Marlowe's week has been.  She has continued her dialysis at small volumes and has been getting rid of excess fluids.  For two days this week, her total fluids out were higher than her fluids in.  This is a big deal for Marlowe since her fluids have to be so closely monitored for fluid overload.  We can visibly notice that her face and limbs are retaining less fluid.  The dialysis volumes are lower than they were last week, but the doctors are taking it slow and watching the catheter closely.  Since her dialysis is working, her feeding had increased.  Her diet has to be restricted and most of her nutrients are through an IV.  As the feeds increased, she wasn't fully digesting the milk so she has been off and on milk all week.  This is an ongoing goal for her to tolerate more feeding and rely less on the IV.

Marlowe's becoming more alert and with more time awake she has been spending more time out of bed.  She has finished her first book club book with Mom, enjoys Dad's goofy songs, and cuddle time with her grandmas. Thanks for all of the thoughtful messages and cards, it helps us to have everyone's encouragement...plus it makes her room look pretty.

Another Typical Day in the NICU (an abridged version)

The NICU is like a crazy time warp machine.  You go through those doors and 12+ hours later it feels like only a fews hours have gone by.  Each day we arrive not knowing what to expect or what will happen, and as much as each day is different, it is the same. 

-Arrive in Marlowe's room, give her lots of love

-Get update from Nurse

-Pump

-Eat breakfast

-Rounds

-Dad holds Marlowe, reads a book

-Pump

-Mom holds Marlowe, music time, Marlowe gets two ultrasounds in Mom's arms

-Surgeons examine her

-Nephrologist advises to start dialysis

-Neonatology fellow and resident examine Marlowe

-Pump

-Mom + Dad get lunch and go for a walk

-Conversation with Attending Neonatologist + Palliative Care

-Dialysis starts again, and works!

-Pump

-Nap time

-More music, bedside

-Eat dinner

-Nursing shift change

-Pump

-Go home

Bumps

Those of you who have been driving around Boston have probably driven into a giant pothole lately.  The past couple days have been bumpy in Marlowe's road to recovery.  Yesterday we noticed there was swelling and leaking around her dialysis catheter.  By this morning, her dialysis was stopped in an effort to allow her body an opportunity to continue to heal around the catheter site to prevent future leaking.    Now we wait for the pothole crew to fill the hole.

Can't Tie Her Down

Marlowe's surgeon is pleased with her recovery and is prepared to close her case on Monday.  She'll have one less doctor doing daily visits.  She has a busy schedule, so this is great news.  He did not forget to remind us that this isn't the last we'll see of him.

Yesterday, Marlowe kicked out her A-line.  She's proven yet again that she doesn't mess around.  One less tether means it's that much easier to get her out of bed so there are more oportunities for cuddle time.

BFFs

Meet my new bestie, Mr. Elefun

So far this week I've lost three tubes!!

Goal for the Day

Poop...

3 more hours to go

24hrs/14days

Marlowe is 24 hours into dialysis.   The first day was pretty tough.  As the care team is working on how to best ease her into her new routine, her calm, comfortable post-op recovery was seemingly turned upside down in order to start managing her fluid levels.  The main goal for the day was to insure that the catheter functioned properly.  As fluid goes in they want to see that it all drains out, which it does <sigh of relief>.  They are gradually adding more volume, and watching her closely to insure her BP and comfort levels are maintained.  They aren't expecting any significant removal of fluids for the first several days, but she has lost several units in the first 24 hours.  In rounds this morning, the tentative plan is to decrease meds, increase nutrition and be extubated to room air.  At two weeks old, she has proven to be quite the overachiever.  As parents, we could not be more proud.

72 hours Post-Op

Afternoon Marlowe supporters! We are now 3 days post-op and she's a real champ. Her team of doctors are working to stabilize her blood pressure and are hoping to begin dialysis in the next 24 hours. This is great news as she continues her road to recovery. Peritoneal Dialysis (or PD as you might have learned from our last post) is key to removing toxins, balancing her fluids, and allowing us to increase the nutrients going into her system. We are also hopeful to have her breathing tube removed in the next couple days, helping to restore some much needed comfort. Again, we'll take this opportunity to thank everyone for their support.  Go Team Marlowe!

Learning a New Language

We've been witness to the rounds each morning as the care team reviews Marlowe's case to make a plan for the day.  It's nowhere near as glamorous as Grey's Anatomy.  There are at least ten people in the room rattling off stats about our little baby girl.  We've started to pick up on the lingo...


K = Potassium
MAP = Mean Arterial Pressure
PD = Peritoneal Dialysis
A-line = Arterial Catheter
PEEP = Positive end-expiratory pressure
ml/kg/hr = milliliter per kilo per hour

A Big Day

Today Marlowe underwent a long and complex but necessary surgery.  We are happy to report that she did just as well as her team had hoped and is now recovering with Mom and Dad.  She continues to impress us all with her strength and resilience.  Her parents are certainly following suit!

As we settle in to the next phase, Mom and Dad will certainly be counting on help from wherever it can be found. They are overwhelmed by the offers for help and support over on lotsahelpinghands.com. Fortunately some family is still in town, but over the next few days look for tasks to be posted as the need arises.

We will continue to post updates as we can. Thanks to everyone.

Helping out

We are so grateful for all of the good thoughts and offers for help we have received, and we plan on taking you up on your offers!  We will definitely need some help initially with Otis.  He'll need a walk in the morning and/or evening. We'll be setting up the days and times as needed.

  

To volunteer to help, please go to: https://www.lotsahelpinghands.com/c/727038/ and register so you can sign up for requests for volunteers.  THANK YOU!!

If you have any trouble using the site, or have questions, please post a comment and someone will contact you.

One Week

It is hard to imagine that Marlowe will be one week old today.  It was exactly one week ago that Scott was walking Otis, while Stacey was "packing" the bag to go to the hospital.

Marlowe has taught us so much this week, and so much has changed in this short amount of time.   Each day we feel like we win some and we lose some, but we had a good day yesterday, followed by a good night.  She's put the surgeons at bay at least one more day.  Giving them some additional time to get to know her before they finalize the game plan is priceless.  She's no longer intubated and is producing more urine than was originally believed to be possible.  We can now hear her little squeaky cries.  She also has had breastmilk introduced, some poop for Daddy to clean up, and this morning she is starting to show interest in a pacifier.  We know there is nothing ordinary about Marlowe's first week in this world, and we will continue to watch her make extraordinary changes over the coming hours, days and weeks.

On Saturday, a wonderful nonprofit organization sent a professional photographer, Nora, to take some family photos.  It was a wonderful experience, and we will cherish them.  Click here.

Photos are courtesy of:

Nora Kenny-Houser

Next Chapter Studios

Nora@NextChapterStudios.com

www.NextChapterStudios.com

www.Facebook.com/NextChapterStudios

c. 617.657.4627

Meet Marlowe

Marlowe continues to defy the odds and hold her own!  She had some photos taken with family today.  Everyone had a long but nice day.  Mom and Dad have been overwhelmed by support and will continue to update you as they have the chance.  More pictures to follow in the coming days along with information as it becomes available.

Welcoming Marlowe Rose Simon to our family

Hello Dear Friends and Family!

We are super excited to welcome a new member of the Simon family. We have received so much support over the last several months and we wanted to share our news with you. On March 23, 2015 at 9:29pm Marlowe Rose Simon was born weighing in at 6lb 5oz and 18 inches long at Mass General Hospital in Boston. After a smooth labor, it was clear that Marlowe was demonstrating some immediate health concerns. She had delayed breathing and a significantly distended stomach, so she was admitted into the NICU for care.

In the post delivery whirlwind, we didn’t have a good understanding of what was wrong, but knew she was with an amazing team at the NICU unit at MGH. By early Tuesday morning, we began to learn a bit more. Our sweet Marlowe had underdeveloped lungs as a result of her kidneys not producing enough amniotic fluid. It was quickly determined that she is suffering from an extremely rare genetic kidney disorder. An ultrasound revealed her kidneys are filled with tiny cysts causing near total loss of kidney function. Each unit of urine she produces is an enormous victory for her. Since the cysts cause her kidneys to be so enlarged, there are many complications impacting her other functions.

We are meeting with a team of her health care providers several times a day to determine her next steps. While the teams are watching her first days very closely and are constantly adjusting her treatments, we understand she is going to have an extremely difficult road ahead of her. At the moment, we are discussing a range of surgeries to help alleviate her swelling and begin to return her to normal lung function, allowing her to come off the ventilator.  We live each day hour by hour, as her condition is constantly changing.

Although we have experienced a wide range of emotions over these four short days, we are hopeful and optimistic that after the recommended surgical procedures are done, she will be able to partake in the joys of infanthood, eventually have a kidney transplant, and live a fairly normal life. Throughout each day, she continues to marvel us with how strong she is.

This is extremely challenging for us, and obviously came as an extraordinary shock. We have the Simon and LaFlamme families by our side, and are gearing up for a long stay in the NICU. Given how difficult this is for us, and how ever-changing the information we have about her condition is, we will use this site to communicate future updates, send and receive positive words, and allow interaction between our friends and family.

There are still so many questions, and things for us to learn about Marlowe’s upcoming challenges. We are just barely beginning to understand and adjust to what will be a new normal for the Simon family. Although this is a huge undertaking, Marlowe is truly amazing. She reacts wonderfully to both Mom and Dad, and is alert and finicky just like any other newborn. Her hairline is similar to Dad’s and she has big beautiful eyes just like her Mom. We will need a lot of support in the coming days and months as we transition to our new lifestyle, and are so grateful for the support we have received since we shared the wonderful news of Marlowe’s impending arrival.