It Is A Sunny Day

Zoe is doing fantastic today!  When we arrived to visit she was wide awake and very content.  We talked to her and tickled her belly, cherishing these moments when she is happy and alert.

Happy at 3 Weeks and 3 Days!

 Zoe had a sprint before we showed up and apparently she did very well lasting almost an hour.  She was only to do 30 minutes but they kept her going since it was so good.  We are just so happy!  We hope this trend continues from here on out.  They took another x-ray this morning, but I haven't heard how it was compared to yesterday.  I am assuming there is improvement with how she is dealing today.  On another positive note they lowered her Ativan.  She is on a drip of Lasix and we hope she rids herself of the edema quickly.

Yesterday Zoe's doctor took quite a bit of time to listen to her lungs and could tell that she was taking breaths but the vent was not responding.  She popped up her PEEP and that seemed to make all the difference. She has so much gunk and fluids in her lungs she was constantly working to get air, which was wasting all her energy before actually doing sprints.  Zoe did another sprint a few hours later which started off good but within 5 minutes she showed signs of struggle and we called it quits.  The team decided to let her rest for the evening.  Well, that seemed to be the best call.

Sprinting For The Finish Line - Sort Of

Zoe's sprints are going so so.  She has her good sprints and not so good sprints through out the day.  B and I find ourselves on edge and struggling with this phase of Zoe's recovery.  It is hard to watch her fight with breathing, we want her to be comfortable, however she must do this to get off the vent.  It is just rough on us and her.  We are looking forward to overcoming this big hurdle and moving on to the next hurdle which is graduating to the 'floor' and feeds.

Tuesday's early morning sprint didn't go so well and lasted 15 minutes because she struggled too hard.  The mid afternoon sprint went very well lasting 45 minutes but the hard work caused her to vomit her milk.  The evening sprint was great and lasted about 55 minutes, 5 minutes shy of her hour goal.

This morning's sprint at 2 am ended around 15 minutes when Zoe's heart rate dropped and her sats hit the 40s.  The RT bagged her to get some quick breaths (we still are waiting to talk to the doctor about this, but there wasn't any alarmed concern during the rounds).  Much to our delight, Zoe recovered very well.  She did need a blood transfusion since her hematocrit was low and more potassium (nothing new) but they stopped her breast milk feeds since she vomited again.

We arrived during Zoe's sprint that started at 9:45 am this morning.  Shortly thereafter she started flaring her nostrils, a sign of struggling, and they ended the sprint at about 30 minutes.  We are pleased that they did not push her too hard, some staff tend to push causing her to really struggle with recovery.

Zoe's game plan was revised this morning during the doctor's rounds.  She is still battling the edema and they are increasing her Lasix for the day to help relieve the excess fluids.  This excess fluid is causing the haziness in her lungs, which is causing her to struggle with her sprints.  She will continue with her sprints 3 times in a 24 hour period but at a maximum of 30 minutes.  They are also restarting her feeds at a lower intake and working her way up to full feeds again through out the day.

A few exciting things that have happened over the course of yesterday and today!

Yesterday they removed her art line! :)  Today they removed the IV in her noggin.  Her christmas tree (the iv poles) only have two running and those are for nutrition and her Atavin, which is an anti-anxiety medication to help keep her calm.

Look Ma!  No IV in my noggin!  

Yesterday was the first time in over two weeks since her surgery that both of us were able to hold our little peanut.  We all enjoyed ourselves immensely.

Mommy and Me

Baby Bliss

Daddy and Me

And lunch.... yum yum!  We went to Umami Burger.  A few weeks ago I saw a food show featuring their delicious burgers and really wanted to go there.  Little did we know that one was just around the corner from the hospital.  These are by far the best burgers we have ever eaten.  We ordered the Ahi Tuna Burger, an amazing and very refreshing sushi like burger, the Hatch Burger, a perfectly grilled beef burger with four types of green chilis and homemade cheese, and their Truffle Cheese Fries.  OK,  we cannot say enough about the truffle cheese fries, if you love truffles and fries these are a must!  The fries are lightly bathed in truffle oil and drizzled with their homemade truffle cheese.  I must have these now!!! I topped my taste buds off with two glasses (yes, two and I needed it) of a clean and crisp Sauvignon Blanc and B had dark heffe.  We highly suggest you visit Umami Burger if you are ever in the area.

*****

Zoe has a BFF already!  Her BFF is right next door, but I am not going to elaborate for privacy.  I will just say we have met a wonderful family on the same journey at the same time.  We hope that our two adorable little girls will grow up to be great friends.

Extubation Fail and The Plan

B & I were so excited for yesterday, we thought Miss Zoe was going to easily be extubated.  Little did we know that this process isn't east AT.ALL.  In fact, this was a nightmare of a day that really put a lot of stress on Zoe and us.

We made it to the hospital in time for the doctors' rounds and were happy to hear they were going to continue with extubation later that afternoon.  She also was taken off several drugs and weaned down on a few more.  We thought how wonderful this is, another step to getting to the "floor" and graduation.

Zoe's first challenge was the one hour sprint with pressure support (PEEP of 5) of which she was doing fantastic and her blood gases were really good too.  Basically she was challenged to breathe on her own but the vent was still assisting in keeping her lungs open through pressure support (PEEP).  Sprinting is an exercise to help re-train or train the muscles for breathing.  Zoe did excellent during this test and we thought extubation was going to be a breeze.  Since she did so well, they decided to move to CPAP which is the same exercise but with out assistance from the ventilator.

Unfortunately when she was put to the CPAP exercise Zoe was not at an optimal state since she was being assessed, had three poopy diapers in a row, and was in the midst of big fit that lasted about 5 minutes.  Her fit was already causing her to really struggle with catching her breath.  During this time the respiratory therapist hastily came in, shut off her support, and walked out.  I was questioning this and the nurse didn't really stand up and say let's calm her down first.  She started to and then just stopped (this may not mean anything, but this was her first day back after a 6 month leave).  I just didn't feel right about doing the CPAP at that moment and I should have been more firm.  Well, as just as I thought the whole challenge went to pieces very quickly.  Zoe failed the CPAP within 20 minutes, 20 minutes too long in our opinion.  Sadly she had a very difficult time recovering and simultaneiously taking her off/reducing several of her medicines didn't help.

Later that afternoon with talking to the doctors and our night nurse we all agreed that was not the opportune moment and the CPAP should have been delayed until Zoe was calm.  She should be at her best when put on these challenges so that she has the all the resources to keep up her stamina.   I made it very clear that we were very displeased with our afternoon nurse's and respiratory therapist's actions and this will not happen again.

In order to help her ready for extubation, the new plan is to put Zoe on a sprint challenge every 6 hours or over the next few days.  The goal is to work her way up until she can manage a sprint for three hours with out any complications.  This challenge will allow Zoe to rebuild her strength and quickly get her on the path to extubation hopefully no later then Wednesday.  

Last evening at 9:45 pm Zoe started her sprint and handled it very well for almost an hour before struggling and her blood gases came back perfect.  This time she quickly recovered.  We were not here for her morning sprint, but we were told she lasted about 50 minutes and had a few desats into the 60's therefore they didn't check her blood gases.  We are anxious for this afternoon's sprint around 2pm.

Our nurse mentioned that her morning's x-ray showed the right lung had collapsed a bit.  This has happened before, but I suspect the CPAP is to blame.  They have turned up her PEEP to 6 which will open up the collapsed area.  We are still waiting to talk to the doctor's about the x-ray.

These next few days will be rough since this is our next big hurdle.  Zoe is in charge and will progress on her own time, we just have to be patient and help her through this.  We are now fully aware of the extubation roller coaster.

On a good note...

Zoe started her breast milk feeds by NG tub again on Saturday.  She is tolerating it very well and hopefully she will start gaining some weight.  Her echo cardiograms are coming back with huge improvements and the cardiologists are very pleased.

snuggle buddies

Today was supposed to be Zoe's scheduled birthday, how quickly three weeks have gone by.  We would have loved her to stick around and grow those three weeks in my belly, but at the same time we are so glad to have already gone through much of the first surgery.  Happy three weeks Zoe!  We love you so much!

One Step Back, Two Steps Forward

Her amazing surgeon, Dr. Starnes...

taken from the halls of the new CHLA hospital

Sunday was a big day for CHLA - as I mentioned before all patients were moved to the new adjacent hospital.  Love the new place!  We intended to use the day as a break from the daily hospital life and have a bit of fun.  The day just didn't go as we planned though...

 We started the day off in a fantastic cheese shop about two blocks away.  We sampled gourmet cheese, cured meats, olives, breads and picking out our picnic fare.  As we were wrapping up the shopping our nurse called to let us know that Zoe did great during the transfer and was doing well.  She then went on to mention that there was an infection brewing in her chest.  They didn't seem to concerned and put her on new antibiotics.  

Of course this was not the news we wanted and were unsure how to feel about it.  I was in a panic and felt I could not go on a picnic unless I saw for myself that she was doing fine.  We went over to CHLA to check on her but only one of us was allowed to go up to her room since the move was still underway.   I went up and to my relief she looked great and was alert.  I had a small discussion with Dr. Epstein who put me at ease and said to go enjoy our afternoon.  Of course that is easier said then done.

After that blip in the day, we went out for our picnic.  Our intentions were to go to Griffith Park to wine and dine then head over to the observatory.  Well, the park was not all that great at all so we drove around and around looking for a suitable spot.  Nothing.  Then we drove up to the observatory and was it ever so crowded so we skipped that too.  Then we headed over to another few streets close by that were to have parks and great views of the Hollywood sign - eh nothing to really stop at and picnic.  By this time we had wasted several hours driving around and then it hit me... I forgot my pump bag and was way past schedule.  Quickly the day was just going no where and we were getting frustrated.  We head back to the Ronald McDonald House to grab the pump bag and then back up to Griffith Park.  We gave in and found a semi-grassy spot and quickly dined while listening to a drum circle.  Right off the bat I knock over my first glass of wine, a special wine we have been saving.  Anyways... it was not a perfect day at all.

That evening we head back to the hospital to spend some time with Zoe since it was now open to all parents.  The RN came in and removed a clear film that was covering her stitches.  We quickly learned that this film was what was holding her chest closure together.  What a bummer because the antibiotics were working and her cultures came back negative for infections.  There was talk of reopening her chest to clean the wound and put in new stitches which was pretty upsetting.  Poor Zoe has been through so much already, I hated that she'd have to go back to the OR and be paralyzed and sedated again.

On to Monday...

Dr. Starnes had come by earlier to check on Zoe's chest and decided it was in her best interest to reopen the sutures and perform a wound cleanse then put in new stitches.  The upside was that they were going to also take out the RA line (a central line running directly into her right atrium), the pacing wires, and the final drainage tube in the center of her chest.  They were also going to put in another PICC line in her left arm and hopefully remove the one in her right arm.  Again we had to sign those awful consent forms.

Zoe was doing so well - I felt just awful knowing that she was going under again.  She was so alert and responding to us.  Her little legs were all over the place.  We were so thrilled that she was first given some pedialyte though her NG tube (feeding tube run through her nose to her stomach) and then some breast milk!  On day 14 she finally received some REAL food!  

And today, Tuesday...

We arrived at the hospital midmorning to spend time with Zoe before they took her back to the OR.  I was struggling with what was to come since she was so active with me.  I just felt horrible and helpless.  

Zoe went in for her wound cleanse and PICC line at 12pm.  I could hardly contain myself as I watched her be wheeled down the hallway.  It is just really scary sending your 15 day old baby to the OR.  The whole ordeal lasted just over an hour and went very well.  We are so pleased that her RA line, pacing wires, and drainage tubes are out of her chest.  Soon after she was settled back in her room she started waking up and just watching us.

The next step is to extubate her.  The respiratory therapist is already weaning her off the vent and the plan is to try to remove it on Thursday or Friday.  I realize her voice cords are going to be sore and she may be really hoarse or unable to make much noise but we cannot wait to hear her squeaky cries again.  In fact, she can cry and scream all she wants - we deserves to tell us how she feels about all of this.

It has been 8 days since we last held Zoe.  I am itching to pick her up and hold her tight, hopefully this is in the near future too.

Here she is all patched up and tubeless!  Much better compared to the pictures of the previous post.

All stitched up!  RA line, pacing wires, and drainage tube removed!

Mommy vent... as I write this I am being tortured, ok Zoe is, with trying to put in an IV line.  Two hands failed, foot failed... they said if they cannot get her veins in an arm or foot they'd put one in her scalp.  MOMMY IS NOT OK WITH THIS AT ALL.   I am about to put an end to this.

Zoe's Progress

Let's start off with some pictures before surgery.  She is so precious!

Whew... we are exhausted!

Everything has gone really well considering the depth of Zoe's first stage surgery.  Yesterday she had her chest closed and is still doing excellent.  She is pretty much breathing on her own even though on a vent and her heart is in a sinus rhythm (which you want) as opposed to a junctional rhythm (junctional is common after such a traumatizing operation).  All in all everyone is pleased with her progress.

Tomorrow is a big day at Children's Hospital of Los Angeles as the new hospital opens it's doors.  All patients will be transferred tomorrow and this is quite a huge deal as I am sure you can imagine.  Zoe was to have her vent and chest tubes removed today but everyone feels more confident to wait until after the big move.  I can breathe much easier with this since I am afraid that the transfer may rock her world a bit.  Once she is moved Zoe will have her own room.  In fact she will be the first baby in that room at the new hospital.  I think that is kind of special, although I wish no children ever had to be here.

Since the staff prefers we stay out of their hair, which I can understand, B and I will be heading out for a  picnic with a celebratory wine.  We may also view the Tim Burton exhibit at LACMA.  This outing is much needed for many reasons but mostly because day in and day out at the hospital is beyond draining.  In fact we are losing all concept of time.

For the most part B and I have been running on adrenaline over the past two weeks.  Our get up and go has gone and we hit a wall yesterday.  After an early dinner we headed back to the Ronald McDonald House around 7pm and didn't get out of bed until 8 this morning.  We need to take care of ourselves so that we are ready to take care of Zoe.  I find it hard to balance with this as I cannot stand leaving her alone.

Oh yea!  Yesterday B & I had CHLA help us install the car seat.  Yes, this may be a bit early but it gives us a lot of hope that she will someday be riding in that seat.  This morning we both had a smile on our face when we jumped in the car.

no more car seat in a box

installed!

I have a lot more to say as well as medical details, but I will have to get to that another time.  I must now go gaze upon our amazing heart warrior!

Here are some pictures post surgery and post chest closure...  I will warn you now that these may be difficult for some to look at.

post surgery day 3

post chest closure day 2

Benefit For Zoe

Zoe's Mamaw and Papaw, Carol and Ron, in Ohio are hosting a jewelry benefit for her. 

If you are interested you may take a peek at her information below.

Thank you Mamaw and Papaw, we are forever grateful!

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BENEFIT  FOR  ZOE 

100% of the proceeds for baby Zoe

Our granddaughter Zoe Renee Fultz was born July 4th to our son and daughter-in-law Brian and Jennifer in California. Zoe was born 4 weeks premature. At 18 weeks pregnant Zoe was diagnosed with Hypoplastic Left Heart Syndrome. Zoe was taken to Children's Hospital of Los Angeles where she will have several heart surgeries beginning Monday. She will remain at Children's for several months or more.

If there's anything you need or would like to order from the catalog at www.itsjustjewelry.com/carol please email Carol at cbeasley@itsjustjewelry.com

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Zoe Made It!

Zoe is still with us! The anesthesiologist said the surgery went really well. We are waiting for the surgeon to come and talk to us. We hope to see her in an hour. 

Hang on baby girl! Now we have to make it through these next 48 critical hours. You can do it Zoe! We will update on how the surgery went later.

Thank you for all of the love and chain of prayers. You all helped our baby girl through this. ♥

Team Zoe
Auntie Amber, Grandma Barbara, Grandma Yvonne, and Grandpa Nick
Thank you for your love and support today!

Say A Prayer For Zoe

Zoe has gone in for surgery at 8:34 am today.  Please say a prayer for our little girl.

Mommy and Daddy love you so much Zoe.  Be strong and come back to us sweetheart.

Happy Birthday Zoe! Our Independence Girl!

Welcoming Zoe Renée!
Born July 4, 2011 at 12:44pm
5.7 lbs and 18.5 inches long

Zoe is absolutely perfect and you'd never even know she has a half functioning heart.  She arrived ready to battle.  She is stable, breathing on her own, all in all doing excellent.  Her squeaky cry is just adorable and she has a full head of hair. It's been crazy and rough, but we are all doing well.

B was able to spend most of his time with her at CHOC, unfortunately I was in recovery from surgery.  Zoe was transferred to Children's Hospital of Los Angeles at 11pm last night.  Just before her departure I finally allowed to go to CHOC and spend a short but sweet time together.  The best part was we were both able to hold her for the first time.  I waited all day for that moment.

We anticipate her first surgery on Thursday or even possibly Monday.  We will know more once the surgeon makes his rounds today.  I hope to be released from the hospital and joining Brian and Zoe tomorrow morning.

B and I thank everyone for all the kind words and support yesterday.  It helped keep our heads up and reminded us how much Zoe is loved.   Please keep her in your thoughts, she has quite a rough road ahead.

Sisters by Heart: Communities in Action: "A Heartfelt Wine"

Sisters by Heart: Communities in Action: "A Heartfelt Wine": "When life hands you grapes, make wine! An Australian winemaker and his son, Colby, are making a tremendous difference in the heart communi..."