IV Free

  Thursday morning we found out that Lucy had an ear infection.  This explained the crying and agitation on Wednesday night and all of Thursday.  The nurse noticed some draining from her left ear late Wednesday night.  They started her on antibiotics right away.  By Friday, she was a different baby.  We both felt a little relieved knowing it wasn't an issue with her heart.  And hopefully when we are home we'll be able to tell the difference

Over the weekend, Dr. Penk stopped all of her heart medication.  He said her recovery was going well and her heart rate, blood pressure and oxygen saturation were where they expected them.    On top of that, they removed her oxygen and were planning to start her feedings every three hours.  She is still on the formula enfaport due to the Chylothorax.  The draining from both of the tubes was still pretty significant so they adjusted the formula to a mixture of half enfaport and half a fat free formula.  The output has decreased, so the doctors want her to be back on enfaport only before they remove the tubes to ensure that the draining doesn't increase.  If everything goes as expected we think the chest tubes will be out by Wednesday.  Lucy will be almost mobile then.

She was up all morning and then after her one o'clock feed, out like a light.

The last two medications Lucy is receiving through IV are the pain and sedation.  On Sunday, the pain medication was stopped and the sedation medication dose was decreased.  They could not completely stop the sedation because it would be needed when they remove the thoracic line.  If you remember after Lucy's hybrid, they removed her thoracic line and she coded.  Needless to say we were nervous.  Luckily, they sprung the removal on us.  It was originally planned for removal on Wednesday, however, due to the decrease in all her meds they did the procedure today with no issues.  Thank God!  Then after the procedure they stopped the sedation medication.  Lucy is officially IV medication free.  I know, we can hardly believe it either!!!

So what's the next step?  It would be moving to the floor.  'The floor' is where patients go before they get discharged.  In order to get there, Lucy needs to be off all IV medications.  Although she is there now, due to her history it is likely they were keep her in the surgical unit for a little longer than normal.  We will start the learning process on administering her medications, placing her NG tube and anything else we will need to know how to do to have her home.  Before she is discharged, we will spend forty eight hours in the hospital doing all of the above.  Pretty much taking care of Lucy like we would at home but with the nurses there for support.

great expectations

Yesterday's visit was rough, not for Lucy, but for us.  Lucy has actually been doing really well.  We arrived at the hospital around six to a sleeping Lucy.  Her respiratory therapist came in shortly after for her therapy.  She was not really cooperating, so it was a short session.  But after that Lucy cried on and off for about two hours and nothing Mike and I were doing seemed to console.  We forget that although Lucy is a heart baby and we have to be careful with certain things, she is also just a baby. It's hard for us to realize she could just be crying because she's tired or fussy, not because she's in pain.  Eventually the nurse came in to help us to get Lucy calm.  It took propping her up in a semi reclined position.  After Lucy was finally asleep we were just overwhelmed and feeling a little helpless.  Cue my tears.

  I have always said when I become a mom, I didn't want to be a parent that would run and pick up my baby every time they cry.  Mike and I even had some conversations after we found out we were expecting about taking a weekend to let the baby cry.  Friends, who were new parents, had given us advice about this method and recommended it.  So call it karma, or whatever you want, with Lucy we cannot do that.  We have to console her immediately by any means because she is not able to handle extended periods of being upset.

On Tuesday afternoon Lucy's breathing tube was removed.  She barely had a voice, but it was so nice to hear again.  Since then the doctors have been decreasing her pain and sedation.  Like we have said before, Lucy needs to be awake so they can start assessing how she handles things.....diaper changes, feedings and therapy.  The reason last night's visit was so stressful is we keeping thinking back to the last time she coded and we just want to make sure we are doing everything we can to help her.

We finally see that cute little mouth again!

  This morning during rounds, I asked about the agitation last night.  Dr. Penk assured us that Lucy is not in pain and it was not due to withdrawal from decreasing her pain medicine.  Since she is not as sedated, she is more aware of discomfort and irritation and is showing us.  Both her drainage tube have significant output, we hope that this decreases so they can be removed and Lucy can be more mobile.  Dr. Penk said that her heart function is much better post-surgery and she is making good progress.  All this information provided a little peace of mind.  Lucy also took to her pacifier right away and her sucking was strong. We didn't know what to expect after being intubated for such a long time.   Our nurse this morning told me something else that we didn't think about.......they are around these kids constantly and we need to utilize them for tips and tricks on how to calm Lucy.

We are constantly have to adjust our expectations and I'm pretty sure that is not going to change anytime soon.  As I am nearing the end of my leave, we ask for prayers for a clear plan for Lucy's care.  Also for her ongoing recovery and continued strength for Mike and I.

a little bunny

We have a couple of days to catch up:

Thursday:
  The rigid bronchoscopy was done and it did the trick to open up the lung.  In the process her left chest tube was knocked out of place.  Lucy had one tube on each side draining extra fluid around the lungs.  The doctor decided to remove it as it was leaking onto her gauze causing her chest dressing to be changed frequently.  They thought maybe with just one drain tube she would be okay.

Friday:
The x-ray was showing a considerable amount of fluid around her left lung.  The cardiologist called me in the morning (pause for a slight freak-out) to let me know they wanted reinsert the chest tube. Without putting the tube back it, we risked the lung collapsing again.  This would be a bedside procedure.  During the placement of the chest tube they also wanted to put in a PIC line.  They need the PIC line in order to remove the thoracic line.  The problem is Lucy is so small that they need to place the PIC line surgically.  This is where they cut a small incision in her arm, locate the vein and then place the IV.  Her veins are too small to do this through the skin.  They decided doing this all at once was best.  The procedure took about an hour and a half.  We found out the nurse had to give Lucy quite a few extra doses of pain and sedation (on top of her IV drips) along with a medicine that paralyzed her.  What that told us was that the two days before when they started weening her, they did it too quickly.  They would re-evaluate her dosing at the next rounds, but Lucy did really good during both procedures.  The cardiologist said they were planning to remove the breathing tube on Saturday.

Saturday:
  We arrived to find Lucy still intubated.  After speaking to the nurse, we found out that overnight Lucy was really irritable.  This was partly due to her medication and partly due to a hectic Friday.  I know it doesn't sound like a lot, but for Lucy it was quite a bit to handle.  The cardiologist decided to postpone removing her breathing tube and give her some time to rest.  They also increased her pain and sedation.  For the first part of our visit she was awake, alert and calm.  Then she took a half hour nap and woke up irritable.  We were able to get her back to sleep with some rocking and some head rubs (we can't yet pick her up because of the drain tubes).

Sunday:
  Happy Easter!  Although we would have loved to have a baby in our basket from the Easter Bunny, we did get some precious awake time with this bunny!

They decided to postpone removal of the breathing to until at least Monday.  They did start Lucy back on feedings.  They tried breast milk, but chyle was still present, so formula it is.  They are doing continuous feeding at twelve milliliters an hour.  Once the breathing tube is removed she will go back to her feedings every three hours.

We also got this awesome plaque from our friends in Wisconsin.  We brought it to Lucy's room as an Easter present.  Thanks Denise, Nan and Pete.  We love that it describes Lucy to a tee.

Can I get a lung?

  Tuesday night we found out that Lucy had a left collapsed lung and and her right lung was partially collapsed.  To Mike and I this seemed like a really big deal, but most of the nurses talk about it like this is just a normal part of recovery.  Again, they are not making light of it, they just see it a lot.  When I asked about the lung collapse, one of the nurses said a lot of 'our' babies have this issue.  I just love that they say 'our' because you know they just care so much about the kids they treat.  Anyway, the chest therapy they started was to help open up the lungs, but it didn't seem to be working.  The next step was to have a ENT doctor come and review x-trays.  His suggestion was to try a flexible bronchoscopy.  This is where they put a camera and suction down Lucy's breathing tube to view the lungs.  They then try to suction the secretions.  This is a bedside procedure and the main risk is that it doesn't open up the lung.  Unfortunately it didn't work.  So the next step was a rigid bronchoscopy.   A rigid bronchoscopy is done in a hospital operating room using general anesthesia.  This procedure allows the doctor to look inside your lungs' airways, called the bronchi and bronchiles.  The airways carry air from the trachea, or windpipe, to the lungs.  During the procedure, the doctor inserts a thin, flexible tube called a bronchoscope into Lucy's breathing tube and is passed through the tube to her airways.  The bronchoscope has a light and small camera that allows the doctor to see Lucy's windpipe and airways, take pictures and suction any secretions.  When we went to visit Lucy this evening, we found that Lucy did great and that they were able to remove a lot of the secretions.  Before the procedure her ventilator was set a 100% oxygen supply and after the procedure the setting were done to 30%.  We consider this a huge success.  The cardiologist said they will continue chest therapy (which she loves) and review the x-rays in the morning.  We are hoping overnight she is able to continue to decrease her oxygen support.

  In other news, the doctors have weened her off one of her heart medicines and have dropped the levels of her pain and sedation medicines.  Today she was a little more awake than the last copye of days.  She needs to be more awake as they remove the breathing tube so they can assess how she handles it.  We are eagerly awaiting the removal of tubes, bit we also know that slow and steady is the way to get the best results.  We love see her awake, but also welcome all the sleep she can get.

Chest is closed

As most of you know, roughly two weeks ago Lucy cried herself into cardiac arrest.  This episode pushed up her Norwood surgery by two weeks.  We have been told that the Norwood surgery should help her heart cope better when she gets upset.  We are hoping that these 'fits' are less dramatic as she starts to recover.  We won't really have a good idea until Lucy is weened off her pain and sedation medication and her breathing tube is removed (these are all things that are keeping her calm during the first stages of recovery).  Here's a glimpse at Lucy screaming and us trying to calm her.

Through the first three days of recovery Lucy has mostly been asleep.  On Saturday most of the swelling had gone down and she was awake for about fifteen minutes during our visit.  Right now we don't want to overwhelm her, so Mike and I take turns talking to her making sure she is focusing.  This usually tires her out and her eyelids become really heavy.  She tries to fight it for about five to ten minutes.  Here's one from Saturday....Lucy was right, it only took a couple days to start looking better.

Today, Dr. Ilbawi decided it was time to close her chest.  There was a little fluid around her left lung but they believe that is due to her being on her back and also from the breathing tube.  They started some chest therapy to loosen up the secretions and help her cough.  After the chest is closed, they will monitor her overnight and then start decreasing her medications.  The chest tubes are still draining pretty heavily, so those will remain in for a couple more days.  Other than that, it will be one day at a time.  We are all about slow and steady.

Rocking out, celebrity style

You know how after a big awards show the gossip magazines always choose a celebrity and follow their day of preparing before the red carpet.  Well since Lucy was such a rock star yesterday I thought we could do the same.

7:00 a.m.  Getting my beauty sleep before the big show

8:00 a.m.  Mom and Dad show up for some family time

8:30 a.m.  The OR nurse stops by to introduce herself (she'll be providing updates to the p's since they can't watch)

9:00 a.m.   My nurse comes in for my evaluation and to start prepping (you know, hair and make-up.  Aka....tubes and monitors)

9:15 a.m.  I need to relax so I spend some time in mom's arms

9:45 a.m.  My entourage shows up for last minute touch ups

9:50 a.m.  The anesthesiologist stops in to introduce himself and see if mom and dad have any questions

10:00 a.m.  We walk to the stage and part ways.

10:15 a.m.  Mom and Dad walk to the cafeteria to get coffee and a snack.  I am getting my meds reviewed and being put under anesthesia.

11:00 a.m.  Mom and Dad find this secret hidden room, called the hospitality room.  It's got a couch, twin bed, tv and private bathroom.  Mom says the smell of the sheets reminds her of me, hopefully we'll change that when we get home.

12:00 p.m.  The nurse comes for the first update.  I am hooked up to bypass.  The surgeons are in the OR and starting the work.  Sara, my nurse, was going to give updates every ninety minutes.

1:30 p.m.  Surgery is still in progress.  I am rocking it out with no surprises.  Everything is going how they expect.  Hooray.

3:00 p.m.  Surgery is done!  I am still hooked up to the bypass machine, but I'm doing all the work.  Dr. Ilbawi and the team will watch my heart work for awhile. They want to make sure I'm not leaking anywhere and nothing needs to be adjusted.  Sara brings a piece of the sano shunt to my parents.  I'll want to see what it's like when I grow up.

4:30 p.m.  I'm officially off bypass.  I did it!  All the prayers helped me so much.  The surgeons will leave my chest bone and skin open to allow for swelling in the next couple days.  Don't worry, they put a patch and gauze over it.

5:30 p.m.  I'm back in my room getting situated.  Whew, I am wiped out.  I'm on a good amount of pain and sedation so that I am comfortable through the first couple days.

6:00 p.m.  Mom and Dad finally get to see me. They talk with the doctors and all went really well.  I'm still coming off anesthesia but I can feel them holding my hand and talking to me. What a relief to be starting recovery.

7:00 p.m.  Mom and Dad give me kisses good night.  I'm pretty tired and need my rest for the days to come.  What an adventure, but I'm glad part one is behind us.


Here's a before and after.  Don't worry I'll start looking better in a couple of days.  Thanks again to all my fans (aka prayer warriors).  I couldn't have done it without all the cheering.

New plan...surgery Thursday

  We spoke to the cardiologist on Wednesday about what happened Tuesday night.  The episode was caused by Lucy getting upset for an extended period of time.  When you get upset your heart beats faster and therefore needs more oxygen rich blood to continue to beat at that pace until you calm down.  Unfortunately Lucy's condition did not allow her to get enough blood to her heart and that's when her heart rate started to drop.  During the care conference we had discussed surgery in two to three weeks and were hopeful that Lucy didn't decide to change the plan.  We were wrong, Lucy is showing us she is truly on her own timeline.

  Rumor has it that surgery is scheduled for Thursday.  Because of the latest episode the doctors feel that Lucy cannot wait another two weeks for surgery.  I say rumor because they want to check how her infection is doing before going back into surgery.  If the infection looks cleared up and there is an opening in the schedule, they may decided to push it up.  If the infection looks bad, they would wait so the antibiotics can continue to work.

  Lucy has been stable since Wednesday, most of the time she is sleeping due the sedation medicine. The doctors are keeping her on pain and sedation medicine to keep her calm.  We do get an occasional ten to twenty minutes at some visits that she is awake and we are able to talk to her and have some eye contact.

On Friday, Dr. Ilbawi's nurse practitioner came in to discuss everything that will happen on the day of surgery and have us sign consent.  It was quite overwhelming to hear all that will go on, but it was also comforting to understand the steps before and after surgery.  For all those following, here is a snap shot into the whole process.  I won't get into any of the specifics of the Norwood, because you can google that and probably get a better description that I can explain.

Here we go.......the doctors will take Lucy to the operating room where there will be a PSHU nurse that is solely there to monitor all of Lucy's medicine.  Once in the OR, the nurse and doctors will review her current medication and decide if anything needs to be adjusted, added or removed.  Then they will put her under anesthesia.  Next Lucy will be hooked up to the heart-lung bypass machine.  The machine nourishes the blood cells and allows them to continue cellular respiration through surgery.  Then they will stop her heart with medicine.  Scary, right!  Once stopped the surgery actually starts.  It will consist of reconstructing the aorta, adding the sano shunt and removing the hybrid.  Next they will restart the heart and watch for any bleeding.  When everything looks okay, the bypass machine will be unhooked and they will continue to watch the heart for another hour.  Lastly, they will leave the chest bone open, but close the skin.  This will give the heart extra room until the swelling goes down.  Lastly, they will begin to ween the medicine and eventually go back in to close the chest bone.  All of this should take about six to eight hours.

If we could ask for specific prayers as our next surgery approaches:

-God's watch over Dr. Ilbawi and his team as they perform the Norwood procedure

-For Lucy's strength 

-Strength and peace for Mike and I as we wait through surgery

-God's hand over the entire process

Spoke too soon

Roughly two hours after the last update we received a call from the hospital.  Lucy's heart rate had dropped and they asked if we could come to the hospital.  We arrived to find the medical team in her room working to get her heart rate back to normal.  The transport team waited outside, along with the OR team on standby.  We stood outside her room watching her vitals and as her heart rate dropped to 27 beats, I buried my head into Mike's shoulder and lost it.  We weren't sure she would make it through.  It took another half hour to stabilize her. But that included putting Lucy back on all the medications and breathing support.

  As of Wednesday morning she is stable.  Lucy is on pain and sedation to keep her comfortable.  We have no reason as to why this happened other than she was really upset and that put her over the edge.  Tonight is the Cath Conference where the cardiologists and surgeons discuss all active cases.  We are hoping that by the end of this week we have a new plan.  But until then......We just wait and pray that this last episode did not cause Lucy any additional trauma.

The care conference

  Lucy has been doing well since her last visit to the operating room.  As of Monday she is officially off all her IV medications.  She has only four tubes attached to her.  Three are for monitoring her vitals and the last is her oxygen mask.  She is on regular feedings of an ounce every three hours.  Doesn't seem like much, huh?  She has had some bouts of throwing up, so she gets some medications orally before her meal.  She is still on the formula, but we have started dips on the pacifier with breast milk.  She is really doing well with the pacifier so the speech therapist is going to try the bottle.  The only thing she needs work on is when she gets upset.  Lucy has one level right now and that level is crazy.  She goes nuts!!!!  Whether she's hungry, needs a diaper change or is in pain.  I mean she even cries after she sneezes.  We are hoping the sneezes don't continue to scare her.  Yesterday we caught Lucy smiling in her sleep.  It was precious and hilarious at the same time.  Dad was able to capture on camera.  It's a little creepy on film... but here's one while she was sleeping.

Then I was able to get one while she was awake.

Last Wednesday we had our care conference.  This is where the parents meet with the entire care team (Doctors, therapists, nurses, chaplain, respiratory and nurse practitioner) to discuss her case.  The cardiologist went through what has happened so far and the progress she has made.  Next we talked about the next steps for Lucy.  And this is the sucker punch to the gut......the doctors have decided that Lucy should stay in the hospital until she has the Norwood procedure.  Yes, we know, we thought there would be a break from the hospital for at least a month,  We are sad that Lucy will need to spend more weeks in the hospital but we know this next surgery is getting us one step closer to being home for good.  The plan is to look to schedule the surgery in two to three weeks (if we've learned anything from this process, it's we never get a definite answer until it's almost happening).  Average recovery from the Norwood is two weeks, which puts us in the hospital another five weeks at the least.  Ugh! Until then we will work to get Lucy as big as can be, work on her eating and helping her to learn to cope better.

Please pray for Lucy's continued progress and our peace and patience as we continue to commute to the hospital and get limited time with our daughter.