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.