Whirlwinds Never End

Things are never dull around here.  I would have updated my blog on a daily basis when we landed back in the hospital last week, but I couldn't get safari to work on my macbook while there and quite frankly didn't have the patience to trouble shoot either.  So call me lazy, but here are my Facebook updates from my phone.

December 15th

Well the party is over... we are going back to CHLA tonight for admitting. With speaking to our HLHS clinic and cardio today about some more desats and low heart rates (not often just occurring occasionally) it has been decided to go ahead with the heart cath tomorrow as long as she is well. There is a question as to whether she could have a cold or if it is just stuffiness, which we both have, and this could be causing the desats. So, I am quite a mess right now and just not ready for this. We could you all the good thoughts that she is healthy and can get through this cath with out a hitch and we will are home lickety split. Typically they are monitored six to twelve hours post cath.

December 16th

Zoe after oral sedation :(

We just walked Zoe to her heart cath. It was so hard handing her over. Poor baby was given an oral sedation and she kept looking at me so sad. We don't anticipate going home until tomorrow as long as cath results are all good. We need positive thoughts as we are not any where near being prepared for the next stage surgery. We won't see her for about two to three hours. :( sad mama

Watching Finding Nemo morning after cath

And we are back in Zoe's room. Whew. What an eventful, tiring, emotional day but Zoe is looking better then ever. She did really well during her cath but to the cardiology team they found slight narrowing in her aorta which most likely was scar tissue. They ballooned the area and it looks perfect now. All her functions and pressures are perfect, better then ever and she is in top shape for the Glenn. They had some issues with getting her pulse strong in her leg (they go through the groin with the cath probe) but after some warming it is back in full force. Her hematocrit levels were a bit low and she did need a small blood transfusion which we are quietly finishing up right now. They will monitor her all night and as long as she behaves we expect to discharge tomorrow morning. She is sleeping after getting some good milk after a long day of no food. Happy tummy = happy sleeping baby = mommy finally able to breathe and relax and daddy picking up our favorite Italian up here. So next up is our surgical consult with the amazing Dr Starnes and The Glenn the first half of January. We have decided to face this full steam and get it over with. So the next few weeks will be spent preparing ourselves and lots and lots of cuddle time. Thank you for all the support. It is so needed in times like these. But... Zoe's little buddy who also has HLHS and had surgery at the same time needs a bit of cheering on. She had her routine cath today in prepping for surgery in January too. Her cath went great but her recovery was not good. She is now in the intensive care and needs lots of good thoughts.

Going home smiles with daddy

December 17th

It is so nice to be back home! We are relaxing in our own bed recovering from the hospital exhaustion. B and I are so thankful for all of the support through these challenging days.

********* end of FB posts thanks for bearing through that copy and paste *********

Now for some mommy bragging....

We did have a highlight moment at the hospital. Zoe rolled over for the first time ever!  After weeks and weeks of me hoping she'd do it, she chooses the hospital.  Go figure!

Want to swoon?  

While waiting for B to pull the car up to CHLA entrance I saw Patrick Dempsey walk in and sit in the lounge.  After much gawking and pleading to the husband - we walked over and introduced ourselves to him.  He was so genuine and took a real interest in Zoe's condition.  He even asked several times about how we were holding up through all of this.  What I loved most about this is that he was taking time out on a Saturday afternoon to visit with the sick children at CHLA.  And here is a picture of McDreamy and us (please excuse the horribleness of me - but what do you expect after sleeping three on a tiny couch for two nights with hardly a shower)

Spreading Some Holiday Cheer - I Need YOUR Help!

I am asking for a little bit of holiday cheer to be spread to newly diagnosed heart families...

Could you skip your fancy retail coffee drink for a day and give a small but huge donation of $5.00 to Sisters By Heart today? 

You will be making a huge impact in the lives of newly diagnosed families - I know because we received a wonderful care package from Sisters By Heart. Tis the season of giving friends and family! Help us make a difference! I would love to see how many of you I can rally up. Sisters By Heart cannot do this with out your support!


Donate to Sisters By Heart HERE!

We Had A Scare

Well, that was quite a rush of fear and emotions!  Monday night B and I were having a very relaxing evening by the fireplace watching tv while enjoying some delicious wine we received for Christmas.  Zoe was snuggled up in her co-sleeper crib next to the couch taking a nice nap for a couple of hours.  10 pm rolled around and it was time to give Zoe a bottle and head to bed.  I put her on our bed and just looked at her in shock, she was cyanotic - an even blue/grey skin tone with very dark blue/purple lips and gums.  Our bedroom has a very dark grey/plum decor and that never helps with her coloring so I quickly went into the bathroom with bright lights - yep she was a bad color.  Zoe was awake and smiling like nothing was wrong and by the time I brought her back into the bedroom her color was normal.  We put on her pulse ox and her saturations and heart rate were typical for her.  B makes a call into CHLA and the on call heart surgeon was not concerned because her vitals were back to normal.  However, I have no idea how long she was blue since she was sleeping in a dim lit room before I awoke her.  We were instructed to keep a close eye on her through out the night.  I left the pulse ox on and she was doing really well, but had a few heart rate dips into the 80s which just left me feeling a bit nervous.  These were changes and like I have said before, change is what you look for in our heart kids no matter how small it is.

Tuesday morning I made a call to our HLHS interstage clinic at CHLA to discuss what happened as I was still pretty uneasy with what had occurred.  Our nurse that follows Zoe agreed with me that it would be best to just bring her in for a through check up.  Unfortunately the clinic did not have any openings so we were unable to see our cardiologist so we had to go through the emergency room to be seen.  They go through the typical questions and vitals, which were all perfect.  Even though we kept telling the attending doctor (who is not a heart specialist) that she was a single ventricle he began to mutter that she has quite a murmur while listening to her heart - well duhhhhhh... she has half a heart!  Zoe then gets an EKG and X-ray which all look great, happy mom and dad.  Those EKGs can be pretty unnerving in the heart world.  The attending cardiologist finally came in and she said Zoe looked great.  They didn't want to do an echo since she just had one even though I kept asking for one.  Ho hum.  If this happens again, which it won't - no way, we need to go back up to CHLA immediately for admitting.  They will go ahead and do her heart cath right away.  Otherwise we stick with the plan and will return next Thursday for the scheduled heart cath.

Zoe was quite a show stopper through this whole emergency room ordeal.  She was laughing and playing without a care in the world.  The staff really enjoyed her personality and kept saying she is such a pretty baby.  Momma knows that :) ok, maybe I am biased but I think she is the prettiest little girl ever as well!

So now we sit tight and wait for next Thursday... and in the meantime we will be repainting our bedroom and Zoe's room.  Her pretty teal blue room does nothing for her skin tone either, so pink it is!

Sisters by Heart: One Born Every Minute

Sisters by Heart: One Born Every Minute: Set your DVRs - you won't want to miss " One born every minute" which will air this Tuesday at 10pm. This week's episode will follow Amber...

It Is December

Booo It is December 1st today and that means only 21 days until Zoe's heart cath.  I am not ready for all of this.  We should be excited about the holiday season, but this is looming over us and filling our hearts with dreaded fear.  Maybe it wasn't such a good idea to schedule it so close to Christmas.

And There Is A Plan

Sorry for the delay in updating, but my macbook's charger went out on me over two weeks ago.  Tonight B went to Apple and replaced it for me, yea!

So to update on Zoe's cardiology appointment a week ago...

Zoe's heart function looked really good on her echocardiogram and EKG.  The cardiologist was really happy with her growth (a whopping 12 pounds now!) and decided to go ahead and schedule her heart cath in order to determine if Zoe is a good candidate for the Glenn.  So it is set for December 22nd - nice Christmas present eh?  Not so much, but at the same time we just want to move forward and get passed this hurdle.  We just hope and pray that everything will go smoothly and that the pressures, etc. are good.  I cannot even begin to think of the alternative routes if she is not a candidate for the Glenn - it just isn't an option - it isn't.  

The Glenn will be scheduled during our first cardio appt the first week of January.  So damn scary.  I still just am not ready to talk about this.  I cannot bear the thought of handing my baby girl over again - to have her chest sliced open, her sternum cracked open,  and her heart tinkered with again.  To go through the ups and downs of CTICU and working towards "the floor."  This is a whole new ballgame now that she is fully integrated in our lives. WE JUST GOT HOME DARN IT!  This sends me into a tailspin which is just why I am not ready to really delve into this right now.  Every moment I look at her and just wish it wasn't so.

Moving on to some rambling...

November 25th marked Zoe being home for three months!!!  Even though it is challenging to remain sane while taking care of such a fragile baby I wouldn't trade it for the world.  She is just a delight to be with all the time.  Her sparkling blue eyes just melt my heart.  Her laughter just makes me so happy.

Speaking of laughter, while waiting for the cardiologist last Monday we were playing airplane.  She loves to "fly" and after lifting her up high I'd bring her back down to me with smothering kisses on her neck and ears.  She was getting such a kick out of it that she was laughing hysterically and loudly - for the first time. Just the cutest laughter I have ever heard.

Zoe's first tree

Family Traditions

We started our first family tradition the day after Thanksgiving and that is with Christmas tree shopping!  We went to a local tree farm and bought the perfect tree.  It is just so pretty with its soft green needles that have a white glow to them.  I cannot remember the type of tree it is just now, but I have never heard of it before that day of tree picking.  

Life's A Beach

First moments in the sand

A walk on the beach, the simple things that matter the most in life.  Sharing these special moments with Zoe are so precious.  Yesterday was so beautiful in So Cal, a splendid 80 degrees in late November.  The house was pretty hot and B was wrapping up his so called vacation (which was spent laboring on the house) so we decided to head out for a nice walk on the beach. We let Zoe wiggle her toes in the sand for the first time.  She didn't seem to mind at all, in fact I am pretty sure we have a water baby on our hands.  

Sandy tootsies

And just a few more pictures!

Big girl sitting up

Chilling with mama, an early morning ritual

eating and loving some rice cereal

Zoe's room making progress

Going to CHLA today

Headed up to CHLA for Zoe's cardiology and HLHS interstage appointment. Please send good thoughts for good heart function and an uneventful appointment. It is unnerving as we will also be scheduling her heart catheterization for December and potential second open heart surgery for January or February. Ready to get past this stage but never ready for another surgery.

Well Hello!

4 months old 11.4.11

First I am sorry for going MIA, but I am sure that you can appreciate how life changing it has been having Zoe home with us.  Quite frankly it isn't that I haven't had the time to write some posts, it is more that I just haven't had the energy or desire to make the effort.  I have spent the last few months adjusting to mommy hood of a heart baby and it is quite a challenge at times, but wonderful challenges.

It has been almost 10 weeks since we first came home from CHLA.  Time is really flying by and Zoe is growing up too fast for my liking.  The first two weeks were really tough trying to find a groove with administering too many medicines through out the day, using her pulse ox three times a day, and all the normal new baby things, and trying to get back into our own lifestyle.  Sleep was unheard of between my obsession of checking whether she was breathing, even though she was sleeping right next to me, or trying to wake her up to eat.  I had quite a few tears from being overwhelmed, scared, and just plain exhausted from those long months leading up to Zoe and her first HLHS battle.

4 months old 11.4.11

During these past weeks there have been several cardiologist/interstage appointments at CHLA as well as the usual pediatrician appointments.  So far Zoe is doing really well in all aspects.  She has doubled her weight from birth (11 pounds 10 ounces yesterday) and finally made it into the 10th percentile on the growth charts (we started out in the 3rd!).   Apparently her heart was enlarged when she was hospitalized (oh the things they don't tell you, I could go on and on about that - but I won't), but at her last echocardiogram it was a great size.  There is a small portion of her heart that is damaged and it doesn't seem to be an issue at this point.  It is possible that it can heal itself.  Other then that she looks good on the medical side.  Medications have been stopped or reduced, which makes life much easier on a day to day basis.

The plan is to schedule her heart catheterization at our next appointment (in a weeks time) for December and shoot for the Glenn surgery this January or February.  While we really want to get to this surgery and get out of interstage we are becoming nervous about another open heart surgery and hospital stay.  This procedure should result in a much shorter stay, as long as there are no complications, and is no where near as complex as the first Norwood procedure.  We will talk more about the Glenn in another post when we closer to this time.

3 months old 10.4.11

Interstage = a terrifying.  Interstage is what they call the time between the Norwood and Glenn and it is a very critical time.  We have to be extremely diligent on keeping Zoe healthy and watching her closely for any issues or complications arising. The brunt reality of this stage (really all of them, but this in particular) is that things can go bad, really bad, and really quickly.  What this means for us?  I am home 99.9% of the time with Zoe on lock down.  We have very limited visitors and obviously no one that is sick, has been sick, or has been around anyone sick. It also means we live each and every day taking no moments for granted.  Every morning and night I whisper to Zoe, with tears in my eyes and a heavy heart, to promise to that she will stay with us.

I have had enough of this part - so I am going to stop and start with all the fun things of having Zoe in our lives.

Zoe is one strong willed little girl.  Her personality is delightful and she is full of smiles and giggles.  When she is hungry you better be ready or very quick or the whole neighborhood will hear her demands.  She loves to talk and we are certain she tries to say I love you.  She can sit up while assisted and plays with all of her toys.  Zoe prefers to be with mommy 100% of the time, we practice baby wearing and co sleeping.  She giggle while falling asleep which is the cutest thing E.V.E.R.  B & I are just in love with Zoe and are so thankful for our little miracle.  Every day is a blessing.

Moments leading up to now...

Moments after extubation

just after extubation

in mommy's arms

Graduating to "the floor"

a real crib

working on the feeds to avoid a G tube

dressing the tiny peanut

We are going home!

heading home - farewell to our nurses 

coming home outfit, the only thing that remotely fit

showing off her battle wounds 

the pulse ox

There are a ton more pictures I want to share later

I've Been A Bad Blogger... But A Good Mama

Helloooooooo (is that an echo I hear?)

Wow, life is crazy busy with little Miss Zoe home that I hardly have any time to do much but snuggle and and feed her.  It's been a month since Wednesday that we have been home from CHLA and I really need to get with catching everyone up.

In short... Zoe, Luna, Poppi, and Momma are doing really well.  We are adjusting to life with our heart warrior at home, and what an adjustment that is!  We fall more in love with her every day, an overwhelming amount of love we never thought possible.

So, back to snuggling with my peanut and we will catch up soon, I promise!

Home? Did I hear you correctly?

I am so sorry for not updating everyone lately.  Once we moved to the acute care life was hectic.  We are fully hands on parents and have been working hard on getting Zoe to eat so we didn't have to go through G-tube surgery.  I have lots to say, but most importantly...


WE ARE GOING HOME!!!!!!


Zoe rocked her feeding the past two days and they pulled her NG tube. She is to be discharged tomorrow as long as she continues her feeds and passes her carseat tolerance test. Brian and I are overwhelmed and thrilled. We are not quite prepared but if we can make it through this first heart surgery we can manage anything. 7 weeks and 4 days we are finally headed home with our baby girl.


Thank you everyone for all of the love and support through Zoe's first heart mending journey.  Zoe is one special and loved little girl. 


(update will be coming as soon as we are settled and I will let you all know what was and is going on with her)

Graduation Day!

Zoe was moved to the "floor" at 2pm today!  We are so thrilled and now we are hands on parents!  Next step is to wean off Ativan and work on feeding.  Sorry no pics yet, must run and be with my sweet girl!

Extubated!

Zoe was extubated at 12pm today and is doing so well.  We have spent the whole day holding her and she is loving it.  They should be bringing in a crib for her at some point tonight and hopefully tomorrow we can move to the "floor" and never look back!

I will post some pictures later.

Good Times!

Today is a great day!  I have a huge smile plastered on my face.  Zoe is such a rockstar!

Awesome things that have happened since yesterday afternoon:

• Zoe did a 2.45 hour sprint from 8:40pm to 11:10pm last night.  She slept through the whole thing!  B & I hunkered down on the parents couch/bed and watched Taken and Planet Of The Apes keeping an eye on her.  What a great way to wind down a long day
• Left tube was taken out yesterday (worth repeating)
• Lasix was taken off infusion and now given intermittently!
• Right Picc line was removed today!  I am just beyond thrilled about this.  Everyday I ask when it would be pulled and damn I missed it!  This Picc has been in since they day she was born and I was so worried about infection.  Yea for Picc removal!!!!
• X-ray looked much better!
• Chyle has left the party!
• PEEP was lowered from 8 to 6 this afternoon and she is tolerating it very well!!!
• Zoe did another 2.5 hours sprint this morning and did fantastic!
• Drum roll.... the right chest tube was just removed!  Woohooo!  I stood there and watched it.  Wow, that was really in there, it was about as long as my hand.  Zoe tolerated it very well but they did give her hydromorphone.

What is next?  Zoe will be tackling her first 3 hour sprint around 3pm today.  You can do it Zoe!  After talking to our RT today, he said if she continues like this they will lower her Peep to 4 tomorrow and continue with 3 hour sprints.  We can cross our fingers for extubation within a day or two!  I am going to shoot for Monday.

Now you can see why momma has a big grin today!

Buh-bye chest tube!

Look mom!  No chest tubes and my right Picc is gone!

Truckin' Along

Well, the left chest tube failed to produce any fluids worth counting therefore I cannot help but feel like we shouldn't have done this to her.  I had a gut feeling about this, however you just cannot foresee these things.  On a positive note, the chest tube was pulled today while we were out to lunch.  BUT!!! this was done while she was on her sprint - why?  I couldn't answer that but of course that caused her sprint to be cut short.  Grrrrrrrrrr

The right chest tube has produced a ton of fluids but the Chyle seems to have tapered off.  Zoe's feeds have been reintroduced and are increasing at 4 hour increments.  Once it is proven that the Chyle has left the party the right tube will be pulled.  I am hoping sooner then later (tomorrow) since the tubes put her at an increased risk for infection.

Zoe has been sprinting for two hours successfully for the most part over the past two days.  The plan was to extend to 2.5 hour sprints this afternoon, but as I noted above the sprint was interrupted.  They will attempt her third sprint of the day around 8pm tonight and we hope she can pull off the 2.5 hours.  We are taking baby steps towards the desired 3 hour sprints and hope to start working down her PEEP which is still at 8.  Her chest x-rays have improved quite a bit but there is still just a bit of haziness showing up.  So little by little Zoe is working towards extubation.  Mama has her fingers crossed for an exceptional weekend and extubation towards the beginning of next week.

Come on Zoe!  You can do it baby girl!

On Wednesday Grandma B and Grandma Y came up to visit us.  Too bad their visiting time was cut short since the left chest tube was going in, but what time they had with Zoe was cherished.  We then went out to Il Carpaccio and enjoyed great Italian food, wine, and dessert.  Everyone needed it after the chest tube drama.

We also experienced our first pass up in the CTICU.  Zoe's BFF was extubated on Wednesday and was moved to the floor yesterday.  She is doing fantastic! We are so thrilled for C and her family... but does it ever sting to be left behind especially when you were here much longer.  I am sure this will not be the last time this will happen.

I also wanted to thank everyone reaching out to me about Zoe's feeding issues, breastfeeding, and pumping - I feel much better about everything.  The encouragement really pushed me along to a better place.  Thank you!

Here are some recent pictures

Mama Bear watching over Zoe to make sure she was very sedated
for the left chest tube procedure.  I tried to soothe her while being
given a massive amounts of Fentanyl.  I was on watch  since the
procedure was performed by a doctor I didn't know and Zoe has
such a high drug tolerance.  Had to make sure my baby was pain free.

Chilling with Momma.  I think there may have been a smile during playtime!

Showing off her chest scar that is healing so nicely!

Well F*&^! (excuse my language)

Chest tube now going into the left side.  NFT

Chest Tube Is In

Chest tube is in.  I stayed bedside while the procedure was done and am glad I did.  As I said before the paralytic drug was not used, thank goodness.  The sedative Ketamine was given in two small doses while the doctor and nurse prepped for tube insertion.  I was watching Zoe to make sure she was comfortable and out as a momma bear would.  I began to notice a very slight and simultaneous twitch in her right hand and foot.  Pointing this out to the doctor he said that this could be a small seizure response since Ketamine reduces anti-seizure properties.  Zoe does not suffer from seizures but this drug can cause medically induced seizures.  They stopped administering Ketamine and went to two other drugs used in her prior treatments.  I am glad I was a keen eye.

the spa - fluid is about hand height

The procedure itself was not that bad to watch.  A small slit was made in Zoe's upper chest just below her right arm pit and in-between the ribcage bones.  The doctor then used a tiny tool to open the area up.  Immediately fluids began to flow out and could see that there was a lot of fluid collecting in her chest cavity.  The tube was inserted and a few stitches were placed.  The fluids were quickly filling up the atrium chest drain collector (or the bubbling spa as I like to call it).  

The color of the fluid was easily identified as Chyle, a milky substance consisting of lymph / intersistial fluids and emulsified fats.  The lymph area was most likely nicked during her initial surgery, which is not uncommon, and the fats were leaking into her chest cavity.  To remedy this situation Zoe is now on a special formula diet that does not contain or has very low amounts of long chain fats so that the area can close and heal.  This process will take about four to six weeks after seeing no more drainage from the chest tube.

I am not happy about feeding her formula, but I have to get over it.  I need to remind myself every day that the formula is only temporary.  The original decision was to feed Zoe Enfiport and after looking into the ingredients I asked for the nutritionist.  The first ingredient is corn syrup solids (what the hell?), followed by soy and cow products.  I addressed my concerns of genetically modified foods and we discussed our options.  The nutritionist agreed with my concerns and we opted to use Vivanex instead.  Vivanex still has corn and soy products, but much less, and no cow product.  Unfortunately there are no other options for Zoe's current condition.  Zoe will be reintroduced to breast milk at about four weeks after no evidence of further drainage. (Note:  Breastmilk vs formula feeding is a very personal decision.  This is not a debate about what is better or what is right, there is no right or wrong when it comes to this.  Just want to make it clear that breast milk was our personal choice and I do not judge others for what decisions they make.  It is all just a matter of personal choice and preferences. Peace.)

Now we can breathe a sigh of relief that we did in fact make the right decision to do the chest tube.  I was on the fence since it was really unknown if it would help her at all.  We can now address the situation and push forward with extubation.  Her x-ray taken immediately after chest tube placement was a major improvement from the prior x-ray taken early that morning.  Already Zoe is on a better path.

Pity party begins...

What upsets me, as selfish as it may be, is that this will make breast feeding even more difficult or maybe even impossible.  I have already been pumping 8 times a day - it is not easy at all.  My boobs are hooked up to the pump allllll dayyyyyyyy longgggg.  It was easier knowing that the milk supply was being fed to her, but now it will just pile up in the freezer for weeks and weeks.  I work hard for that milk!!! I was looking forward to the extubation and working on feeds in the very near future.  I can only hope that things will change from what was explained today.  (or I can now begin to consume a ton of wine to calm my nerves - the good old pump and dump method)

Pity party ends.

Did You Hear The Other Shoe Drop?

Yep, the other shoe dropped loud and clear - and just when I thought we were on the upswing again.

While out for lunch we received a message from our nurse to call back regarding Zoe.  Our hearts hit the pavement, they have never called before and we were under the impression that this was reserved for emergencies.  I immediately called back and no one was answering the phone in her room... you can imagine where our minds quickly went.  Complete panic sets in (I am NEVER leaving the area again).

Second call and I get through to our nurse who puts me on with the doctor.  The surgeons' made their afternoon rounds (which are split second quick) and want to put a chest tube back in Zoe's right chest wall cavity.  They hope this will quickly alleviate the fluids collecting around her lungs and sped along extubation.  The procedure is supposedly quick and we can stay bedside for it, but it will require her to be sedated again (heavy sigh - we just got off all the damn drugs!!!).  They do also use paralytic medications, but said it is not necessary.  We have opted to not do this to her as this drug does nothing for pain.  Once she is sedated and comfortable, a small tube (much smaller then the surgical chest tubes) will be inserted between her right ribcage bones and just into her chest cavity.  This should only be in place for a few days at the most.  It has been explained to us that this will not hinder any further progress in sprinting or feeding, it will either help or do nothing with the fluid issues.  While I do not want to agree to this, we are.

Sorry baby girl, not the birthday party we had planned for you.

Happy One Month Zoe!

!!!Happy one month Zoe!!!

One month old!

Zoe is one month old today!  Four weeks is leaps and bounds from the day Zoe was born.  We are thrilled that we have come so far, but at the same time it is just so bittersweet.  While it is wonderful that Zoe has overcome so many obstacles we also feel as if we have missed out on so much of her infancy.  For one month B & I have just stood by and watched everyone else take care of our baby girl.  I wanted to us to be the ones to give her the first bath, change the first diaper, feed her, swaddle her...  It isn't supposed to be like this, but it is.  This is not an easy life and not many of you can comprehend what that is like.  B & I are zipping along in a worm hole and time is passing us by.

This is also the day that Zoe and Dylan were actually due to join us.  My heart aches for Dylan, he should be here with us.  We do know that Dylan is always looking out for his sister, cheering her on.  Today my heart is heavy with missing our sweet boy.  What a crazy life it has been, mourning for our boy and fighting for our little girl.

A good friend recently asked me how I feel now that I am a mother.  I really have to ponder on this for awhile since that is a topic mixed with many emotions and I am still mourning the loss of Dylan.  I can quickly say that I don't feel as if I have been much of a mother to Zoe (I know I am doing my best to be there for her and that I am her mother, that isn't what I mean).  Of course I love Zoe more then anything but the daily motherly tasks have been absent and it pains me so.  I feel utterly helpless as I stand by her bed unable to do anything.  I feel sadness that I cannot nurture Zoe, that I cannot just pick her up when she cries her silent cries, that I cannot soothe her pain, that I cannot tickle her toes and make her smile.  My heart and soul is Zoe's mother, but I can't help to feel as if I am missing out on so much right now. 

B & I all look forward to the day when we are carrying her out to the car for the drive home, when we can really start our lives as a family.  It is just right there in front of us, dangling on the horizon, teasing us.  We try to keep our sights on this day to help us through.

Zoe had a special visitor today!  Auntie A was in town for a Ziggy Marley show at the Hollywood Bowl.  We are so lucky that she could stop by before heading back up north.

I love my Auntie A!

Most importantly, I know you all are wondering how Zoe is doing.  All of her stitches were removed yesterday and her chest is looking very good.  She has managed the sprints for one hour (sometimes a bit more) very well over the past three days.  Whatever fluids are left in her body, Zoe keeps absorbing into her lungs.  This is holding her back from making big progress.  They will continue with the diuretics to help rid her of the fluids and continue on the path we are on. The Ativan dosage is much lower and is now administered every 12 hours, hopefully she will be off this medication very soon.  We have to take it slow and go at Zoe's pace.  She is the boss and will let us know when she is ready for extubation. 

Yea! No more stitches!

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!