2nd Day Post Fontan Surgery - 8:00 PM

Wednesday August 24, 8:00 PM

I'm usually pretty good at getting Lilee to smile and laugh.  Due to the medications from surgery and from just feeling crummy she has had no interest in anything up until now.  I guess I have not lost my touch:)  It is nice to see her personality breaking through every once in a while.  My guess is that it hurt when she does laugh but as a parent I thoroughly enjoyed it, her laugh makes me happy.  What did I do make all this happen?  I dropped an empty plastic barf bucket on the ground.  That kind of humor takes skills. 

 

Look at that color or that skin.  I still cant believe she looks so good!

 

The highlight of my day!  When I left the hospital earlier today Afton texted me a picture of her holding Lilee and I was a little jealous.  I made it back to the hospital as soon as I showered, ate, and did a little work and got my turn.  It was AWESOME!  I love holding her when we are at home and holding her here was no different.  She just melts into me - this is probably the thing I miss most as my children grow up. 

2nd Day Post Fontan Surgery - 11:00 AM

Wednesday August 24, 11:00 AM

We are out of the PICU!!  After all of the tests were complete and they had all of the measurements they needed we began to pack up.  One of the cool things at Legacy Emanuel is they have Radio Flyer wagons that the kids use to go on walks and in this case move rooms. They loaded this one up with an oxygen bottle, some pillows, Lilee, and packed all her personal stuff around her.  She was pretty apprehensive about getting in the wagon and wanted to be carried but as soon as we started moving things changed and I think she is hooked.  Hopefully we will get to hoard this wagon in our room and use it when we want until we leave.

Ahhh, here we are - our new room.  Room 3634 with a view of the I-405 bridge and downtown Portland.  We also got a full size bed rather than a crib or children's bed.  The full size beds are much more comfortable because they can be adjusted to whatever position you need and when she is ready we can lay in the bed next to her.  As of now we have no roommate and a bathroom in our room.  It will also be easier for Afton to take care of Amelia during the day when I am not here.   

Now that we are all settled in and Lilee is getting her energy back some of the things we noticed in the PICU are becoming more pronounced.  The main one being her reaction to the nurses.  When they come in she begins to whimper and her oxygen stats drop a few percentage points but she still lets them do whatever they need to.  She is feeling pain in the places that are not expected and is sensitive to touch especially around the feeding tube.  I still can't believe she has not mentioned the giant wound on her chest.  She does complain about the Plural Catheters when they are being drained, the blood pressure cuff during a test, and the telemetry wires pulling on the tape attached to her chest.  She has basically adopted her JP drain and does not complain about it at all.  She has renamed it her "Bubble".  A name she has given all her wires are "Ropes".  Out of nowhere she will ask - "Where is my bubble?" or "Where are my ropes?"

 

2nd Day Post Fontan Surgery - 10:00 AM

Wednesday August 24, 10:00 AM

 

It looks like we will be leaving the PICU this morning.  Afton is here now and the nurses are continuing the stuff they usually do before we are released to the regular Pediatric floor.  They took some Labs, X-Rays early this morning.  Along with all the other items on their to do list medications, diaper weight, feedings they also took her weight, and measured all the fluids still coming out of the plural catheters and JP drain.  For the weigh in they brought in a portable digital scale and had Lilee stand on it. So this is the first time she has been able to stand with a little help from mom and the holding bars.  With the exception of a crummy nights sleep she is doing rather well and I am guessing she will probably sleep most of the day.  

 

2nd Day Post Fontan Surgery - 7:00 AM

Wednesday August 24, 7:00 AM

I'm starting to get tired.  In fact I had snuggled into the reclining chair next to Lilees PICU and had dozed off at about midnight.  I was only asleep for 40 minutes or so when I heard someone calling my name.  When I realized it wasn't a dream and opened my eyes this is what I saw:

For the next 7 hours Lilee would wake up every 30 or 40 minutes, call my name to wake me up, wait for me to come to the crib, throw up in a bowl, allow me to clean her up and then lay back down and rest until she did it again.  I don't mind taking care of my daughter one bit but it did kind of tick me off a little that my PICU nurse who had one patient was not watching to see any of this happen all night long.  She would come in right after I had cleaned everything up.  We might as well have been on the regular Pediatric floor where the nurses have 3 to 4 patients.  In any case we made it through the night and today should be a good day as far as progress.

1st Day Post Fontan Surgery - 8:00 PM

Tuesday August 23, 8:00 PM

The family visited this evening so it was picture time. Can I just say - Thank You to all the PICU nurses that let the whole family come in at once. There is usually a pretty strict limit on the number of people allowed in at one time and the whole family definitely exceeded that limit. It was nice to have the whole family together again even if it was for a brief moment. 

 

Lilee loved having her brother and sisters visit.  Even though she didn't feel like moving around much she had the energy to antagonize anyone and everyone with her feet.  Ethan was the recipient of that pestering in the picture above, and below it was whoever was in her way. 

 

1st Day Post Fontan Surgery - 2:00 PM

Tuesday August 23, 2:00 PM

I left the hospital this morning at 10:00 so that I could run home, take a shower and hopefully get some work done.  As was part of the plan I took Amelia with me.  We figured she would sleep the entire time I was gone and by the time she needed to feed again I would be back in the hospital.  Doing it this way would also give Afton alone time with Lilee.

Well the plan went wrong almost immediately.  She woke up as soon as I got to the car in the hospital parking lot, fell asleep once we started moving, and woke up again once I got home.  My mom was there with the kids though so she helped out with Amelia while I took and placed a bunch of calls for work.  At about 1:00 we headed back to the hospital for a feeding after which I was going to take Amelia to work with me once again.

While  Amelia and I were away some pretty exciting things happened.  The tubes on the left and right side that were attached to suction were removed.  In their place in the picture below is a square piece of gauze.  You can see it right above the Plural Catheter (the white tube closest to the bed with a gray tip).  In this picture you can see we still have the pace wires (blue and coiled up), the JP drain right below the incision, the MIC-KEY is still there (white thing with a tube attached above and to the right of the belly button).  They also have her attached to telemetry which are all the other wires.  So there is still quite a bit there but much less than when I left.  What this picture doesn't show is all the stuff they were able to take out of the room once the suction tubes were removed.  Each tube had its own water filled box that controlled how much the tubes would suck.  They made a constant gurgling noise.  I thought it was relaxing so I will miss them but am happy they are gone. 

 

The other thing I missed was this:

 

 

Oh ya we can hold her.  She doesn't look like it in the picture but she really really likes it!  Because I had Amelia, Afton was able to hold her almost all day.  The picture she would not let me post was her trying to find a way to keep Lilee in her lap sleeping while at the same time feeding Amelia.  Without posting the picture you will have to just believe me - she was successful.

 

 

1st Day Post Fontan Surgery - 9:00 AM

Tuesday August 23, 9:00 AM

The moment Lilee has been waiting for all night!!!  We have bowel sounds so it is water time.  Almost as soon as mom walked into the room I took that little cup that she had been holding all night and filled it with 2 tablespoons of water.  Using a little foam brush the nurse gave me I dipped it in the water and then placed it in her mouth.  Well the excitement could not be contained she wanted that water now and dad could not do it fast enough so she took over.  Interesting how you can go without food for a day or two and not hear a complaint but the want for water is desperate and heartbreaking!  I am glad that the wait is over.

 Dipping:

Almost There:

SUCCESS!!

1st Day Post Fontan Surgery - 6:30 AM

Tuesday August 23, 6:30 AM

Grandpa came and picked Afton up last night.  While he was here he took a listen.  Lilee sure loves her grandpa!

 

We decided before the surgery I would take the night shifts.  I usually don't have any problems staying up all night and being here gets me some one on one time with Lilee and if things are going well I am also able to get some work done.  That being said last night was not a good one.  Lilee is not in pain yet but she is thirsty and wants a drink of water.  We have sponged her mouth out a couple times in an effort to buy us some time.  Ultimately however we are waiting for her insides to start working again so she will actually be able to process the water once it hits her stomach.

Notice the death grip on the medicine cup in the picture below.  She is hanging onto that cup in the hope we can put a little water in it.  

I think everyone here knows pain management is going to be an issue.  For now the morphine she received in her spine during surgery is still working.  Slowly it is wearing off though the they have been giving Tylenol every 4 hours to help with the fever and the pain since we don't know when the morphine will wear off.  We will ask her if she has any owies and her response is "I fell down" and points to her knee where there is a little almost non-existent scratch.  If she could only see the giant incision on her chest she might point to that.  I am happy she is not in pain and am not looking forward to the time when she realizes that she does hurt.

Back to last night.  Lilee would wake up every 40 minutes and do this coughing try to throw up thing followed by a yank on the nasal cannula to get it out of her nose (she hates that thing).  So every 40 minutes I would get up and help console her.  Once I did and the nurses came in she would go back to sleep for another 40 minutes.  I was already tired from my lack of sleep last night so my 40 minute sleep sessions on the chair next to her bed were not as refreshing as I had hoped. 

The X-Rays this morning show a little pooling of fluid that the plural catheter on the right side should be taking care of.  They are going to try and do something about that today.  Dr. King came in shortly after the X-Ray and said they were going to try and remove most of the tubes today starting with the Foley catheter and get her walking around at best and at worst just get her to the point we can hold her.

Today should be interesting.  Afton is on her way back so I can run home, change, and head to work.  We appreciate all the help and support from our friends and family.  There is no way a family can go through this without some sort of support system and we for sure have one of the best.  From food deliveries to the hospital to watching the kids and just being a distraction from the monotony of hospital sitting.  You have all been wonderful.  Thank You. 

 

 

 

 

Surgery Day - Fontan - 8:30 PM

Monday August 22, 8:30 PM

At about 8:15 PM they removed the respirator.  Afton was able to come back in to the PICU right before they started.  She had not seen them do this before so I was happy she made it.  Lilee's first words after some dry breathing and some rough coughing was "I don't like it". 

One giant tube removed and a dozen more to go!  For now though breathing on her own is definitely a big step.  Back to sleep for her and more waiting for us.

Surgery Day - Fontan - 4:30 PM

Monday August 22, 4:30 PM

It took a little longer than expected to get Lilee ready for the PICU.  She had some bleeding/oozing issues they needed to get stopped before they would let her out of the operating room.  So they gave her some blood products got it under control and shipped her upstairs where we were waiting.  Soon after they put her in the Pediatric Intensive Care Unit they allowed us to go in.  Here is what we saw: 

Here is a view of the entire bed.  The rectangular gray and green box on the bottom right of this picture is the pacemaker.  If you look really close you can see two wires going from that pacemaker through the bottom of the incision on her chest.  Those wires will eventually be pulled out once it is decided she no longer needs any pacing.  As far as I know the device is turned off right now and is there just in case. 

 

On the right in this picture is the respirator or breathing machine.  This one is so much quieter than the last couple we have had.  The only noises in the room this time are the medicine pumps every few seconds and the bubbling of the suction devices.  The suction devices hang on the end of the bed and are filled with water.  They use the water to regulate the amount of suction so there is a constant bubbling noise that comes from that.

 

Lastly - Check out the Oxygen Saturation levels!!!  I think the last time she was 86% was when she was born.  Her color looks so much better.  Hopefully no more purple feet and blue nose.  O2 saturation levels in the high 80's should keep her pink.

 

 

Everything is kind of surreal.  As I look around and take pictures all I can really think about is how similar this is to the last surgery (the Bi-Directional Glenn).  The only major difference is how much bigger Lilee is this time.  You forget how fast they grow in such a relatively short period of time. 

So what happens now? They are going to let her wake up and once she does that they will pull the respirator, and begin to medicate for pain.  She did receive some spinal morphine during the surgery so that should last well into the night and possibly into the morning.  Although she is still pretty out of it she is responding to noises and when we mess around with any of the drain tubes on her sides.  So let the waiting game begin.

Surgery Day - Fontan - 2:45 PM

Monday August 22, 2:45 PM

The Fontan is over!  They have moved her from the Operating Room to the PICU and we have been asked to wait about an hour before we go in to see her.  Dr. Iguidbashian came in and briefed us on the surgery.  He said that he used a 14cm graft and a small gortex pop-off.  If she is not too sleepy tonight they will remove the respirator and hopefully by tomorrow she will be walking around.  He did mention that the plural catheters will be the issue to watch as they rarely take less than 10 days to clear and sometimes a month.  We can go home with them but he said they want the drainage to be 10ml day.  I know we are probably getting ahead of ourselves but it's fun to think in a few days we will be home and getting things back to our version of normal.

 

Surgery Day - Fontan - 1:00 PM

Monday August 22, 1:00 PM

Our second update from our case manager and things are moving right along!  About 20 minutes ago they took her off bypass and they are going to finish things up and hopefully get her into the PICU by 2:00 pm.  It might not seem like a huge amount of information to post but this is INCREDIBLE news and another milestone we are happy to pass. 

Surgery Day - Fontan - 11:30 AM

Monday August 22, 11:30 AM

Our first update of the day and things are going well!  At 11:04 they successfully completed the bypass.  So a little under 4 hours total surgery time and machines are doing the work her little heart has been doing for the last three years.  I'm sure the break is welcome and her body is probably freaking out with all the pure oxygenated blood circulating in her veins.  We should get another update in an hour or two and I will post then. 

Surgery Day - Fontan - 7:30 AM

Monday August 22, 7:30 AM

As we expected there was little sleep last night.  The kids crashed fairly quickly after we had a family meeting and talked about what was going to happen over the next few days.  Afton and I finally fell asleep around 2:30am partly because our washing machine would not wash a load due to some funky error - at least that is what we are going to blame the lack of sleep on.  In reality I do not think we could have gone to sleep any sooner if we tried.  We are excited to finally be at the final stage of this journey.  The first step being the life saving operation, the second being the improvement in quality of life, and this one completion and continued improvement.  Not only are we excited to get this behind us but we are excited for Lilee.  Hopefully she will have more energy, better color, and have the energy to eat enough food to transition off that darned feeding tube.  

Last night was actually the beginning of today.  We gave Lilee her bath using a new bar of soap, drying with a freshly laundered towel, and putting her into freshly laundered PJ's.  We made sure the last feeding was complete by midnight and this morning we made sure her last clear liquids were given by 5:30.  There was also a special wash cloth that they wanted us to wipe her down with about an hour before we came to the hospital.  Everything was completed as requested by the hospital and we were ready to go.

When we arrived this morning we checked in, verified insurance, got our hospital bracelets, and headed up to the Pediatric Day Surgery section of the hospital.  They did another intake there, height, weight, blood pressure, temperature, and O2 Saturation.  Then we just waited to be taken downstairs into pre-op waiting room.   

While we waited, they had us change her clothes which gave us the time to capture some crazy hair morning pictures. They were classic!

 

  

We probably only waited for 20 minutes, and they took us down stairs.  When we arrived downstairs Dr. Iguidbashian (surgeon), Merv (chaplin), the anesthesiologist (I don't remember his name) and our nurse for the day were all ready to go.  One thing I really appreciate is that all the needle sticks and IV lines were going to be placed after they put her to sleep.  Everything that happened this morning was calm and painless.  Even to the point that Lilee was happy and playing with Merv right before they took her into the operating room. 

 

Another super classy thing is they let Lilee choose if she wanted to be pushed into the next room on the bed, or if she wanted to be carried in. She chose to be carried so they let us give her some hugs and kisses then we passed her off to the nurse who gave her a huge bear hug, which she reciprocated, and she was gone. It is so much easier to leave your child in the care of others when you know they really do care.

 

More to come.  We expect an update around 9:30 or so.

 

Pre-Admission Visit for Fontan Procedure

Thursday August 18, 11:00 AM

Well here we go again.  In fact literally here we go again as today's visit was almost identical to the visit we had on January 9, 2009 which was her Pre-Op visit for the bi-directional Glenn.  The visit this time however did not take near as long as previous visits.  In fact we were pushed through the process so fast we did not get a chance to speak with Lilee's surgeon as he was in another surgery.  It might not seem like a big deal considering we know what is going to happen and how its going to happen, but Dr. Iguidbashian is one of the kindest men I have ever met and he emanates calm and proficiency which is contagious and calming to a parent. 

Pre-Registration - a room with a bunch of chairs and a couple of receptionsits.  All we had to do was check in and the process was in motion.  We were called back after being there for only a few minutes to verify all the usual stuff, name, address, billing info, insurance info, birthdate. . .  Once completed we went back to the waiting room for only a few minutes before we were called to the Nurses station.

Nurses Station - A separate room where the nurse gathered all the medical info that was needed: height, weight, blood pressure, pulse, oxygen saturation, medical history, review of past surgical history.  This type of visit is becoming old news as it is pretty typical of every visit to the doctor Lilee has.  We then watched a cheesy movie about safety while staying in the hospital - I could have passed on that and not lost 10 minutes of my life but I guess the rules are the rules.  Here is Lilee filling out her own forms.

 

EKG - Nothing changed here; It was the same room and the same machine they used last time.  Basically they stick 13 little stickers all over her chest, arms and legs.  Wires with alligator clips are then attached to those stickers.  The wires all lead to that little box you see sitting on the bed and that box then heads to the EKG machine.  After the first test was complete and leads were removed the technician realized the machine did not convert the test to pediatric values so we got to stick the leads back on and re-do.  Lilee was not too pleased about this as those leads are really sticky and hard to remove so as a reward the technician gave Lilee a big teddy bear, which she calls "peddy bear".  Amazing how a little bear can make the pain go away.

 

X-RAY - This was super quick.  Two pictures were taken and we were out the door.  Lilee sat still and did everything they asked.  It was AWESOME!!

 

Lab -  My least favorite part of the visit!  She had the numbing cream on her arms from the Nurses Station Visit (you can see it in the pictures above in the crooks of her arms) and unlike last time they actually used the sites with the cream.  It never ceases to amaze me that despite the warning: "Due to her heart condition and funky circulatory system Lilee is a difficult draw", I am completely ignored.  This time was no exception.  In fact I think she dove in with reckless abandon just because I told her it was going to be difficult.  After jabbing and then searching in the arm with the needle with no luck, and Lilee crying like crazy she finally gave up.  Of course, it was not her fault - "that vein I was going for just disappeared" - Whatever!  This is not my first rodeo, and I was watching the whole time.  Phlebotomist #2 took some time, got a heat pack, warmed up the other arm, felt around for a minute or two and then proceeded.  She nailed it the first time and they had all the blood they needed in less than a minute.  Amazing what you can do if you just take a little extra time to find a vein and then work with what you have. 

Case Manager - Well not really because the case manager was not available but it was someone familiar with the surgery day process and what follows.  We got the grand tour once again Elevators, Play Area, Parent Sleeping Area, PICU, and Pediatric Floor.  It was the typical tour nothing special.  While in the PICU we ran into one of our favorite nurses from Lilee's first surgery who gave Lilee the last of her tests for the day - her nasal swab.

It is hard to believe we are at this point again.  Another surgery - hopefully the last!  We have the weekend to prepare so here we go.  As I said last time: Let the games begin.  I'll write more on Monday.

 

PEG Tube is so pase' - We upgraded to a MIC-KEY!

Wednesday March 11, 8:30 PM

Just like training earrings our first PEG tube was replaced today.  So this morning we were at the hospital at 6 AM for surgery at 8 AM.  Just like in previous visits we managed to get through the paperwork nightmare rather easily and then we waited.  After a short while they did the basic pre-op stuff (weight, temp, oxygen saturation) and then we waited some more.  Pretty close to 8:00 they took us to the basement of the hospital where we met up with the Anesthesiologist and the GI Doc. After some humorous banter and a quick run through of the operation/procedure the gas mask came out and without a whimper Lilee was asleep.  We were then asked to wait in a small room right outside of the procedure room.  As we left they were placing the IV - they were nice and decided to place the IV once she was asleep.  The procedure from start to finish took about 15 minutes.  Once it was over they moved Lilee to a recovery room and us to a different waiting room where we sat with other parents whose children had been operated on that same morning.  As Lelee began to wake up a nurse came in to get Afton so she could be there to feed her and provide overall comfort.  

A brief outline of what they did:

• Put her to sleep
• IV in the hand and some meds that will keep her to sleep
• Endoscopy so they can see inside the stomach as they remove the old tube and place the new tube.
• Remove the PEG tube
• Insert the new MIC-KEY Low Profile Gastrostomy Feeding Tube
• Clean up
• Wake up
  

We actually got out of the hospital sooner than we had expected so we stopped to have a birthday lunch for Afton at a BBQ place by the hospital.  After lunch we headed home with a fully awake and happy baby.

 

PEG Tube Procedure - One day after Second Surgery

1:00 PM

The PEG tube - can you spot it?

Its the white tube with the square gauze around it.  Not the one with the blood in it or the one with black suture thread (respectively above and below the actual tube)! 

Things are going really well.  Last night Afton and I stayed at home since Lilee is still on a ventilator and completely asleep.  When we came in this morning the suction devices had been removed and replaced with a bulb.  They were getting everything ready for the 12:00 procedure for the PEG tube install (Afton insists its not an install but a procedure - I like install better).  A little before noon all of the equipment carts showed up and everything was laid out.  Dr. King the cardiologist was even here.  After everything was set up they asked us to leave and said they would come get us in about 30 minutes.  So we did, and they did.

Pretty uneventful except the now has a new tube (pictured above) but more importantly the NG tube (feeding tube through the nose) is gone forever!  Now when we get her home you won't be able to tell she has anything wrong with her.

As I sit here they are beginning to wake her up.  Before they completely do that though they will remove the ventilator and taper her off the pain meds.  They want to make sure she can breathe once the tubes are removed.  Once she proves she can do this she will get her pain meds back.  So for a short while we will have a grumpy baby.  We have also been told that she will have a pretty bad headache for a while due to the increase in the blood supply to the brain.  We are not really looking forward to that.  Staying on top of the pain management meds should alleviate that pain though. 

I don't know if I can ever say this enough but we are extremely grateful for all of the love, help and support from our family and friends.  It would be near impossible to deal with this and be here while also taking care of all the necessary things at home.  The meals, childcare, visits, emails, help at home it all really helps.  Both Afton and I thank you and wish there was some way we could thank you all individually.  Thank you, Thank you, Thank you!

 

Surgery Day - bi-directional Glenn - 12:30 PM

12:30

Can I just say again how happy i am this second surgery is over and we are now into recovery!  She is pretty flush and swollen both of which will change over time.  They did not paralyze her this time because they closed the chest before they came up to the PICU so she is twitching.  The are actively managing the pain with all sorts of things that would make a drug addict jealous.  The tubes are identical to the first surgery.  We have the ventilator, feeding tube, arterial line on the right side of her neck, EKG leads, plural catheter both left and right, and a suction drain sharing an hole with a plural catheter and another one at the bottom of the chest incision.  To top it all off she has a ureter catheter, blood pressure cuff on her right ankle, and an oxygen saturation monitor on her right foot.

Right now they are dialing in the medications so that her blood pressure is between 65 and 90 and the CVP is 12.  Her pulse is 144, oxygen saturation is 79%, Respiration is 28.  She is doing really well, and her little body is doing everything that is to be expected.  I still cant believe all the tubes and wires and machines.  It truly is amazing to watch the concert of everything working together to keep Lilee alive.  Isn't life a precious thing - I know it is and I am extremely blessed that other peoples knowledge and skill have given life to my beautiful daughter.  I will forever be thankful!

Surgery Day - bi-directional Glenn - 11:30 AM

11:30 AM

It's over!  She is out of surgery and in the PICU.  We just finished talking to Dr. Iguidbashian and he is pleased with the outcome.  He said the superior vena cava attachment to the pulmonary artery was optimal and that everything went as planned.  Heart function looks good and the lungs are handling things well.  So in about an hour we should be able to go in and see her.

Surgery Day - bi-directional Glenn - 10:45 AM

10:45 AM

Our second update!  Things are going well.  They put her on heart bypass at 9:34 AM and took it off an hour later when they finished the bi-directional shunt.  So as of right now she is still on a ventilator but her heart is pumping and they are happy enough with the result they are going to begin closing her chest up.  Soon after they will clean her up and in 45 minutes she will be out of the OR and on her way back up to the Pediatric ICU (PICU).  What a relief!

Surgery Day - bi-directional Glenn - 9:30 AM

9:30 AM

Our first update!  She is asleep and all of the IV Lines, the central line and arterial line are in place and working.  They have begun the dissection of the previous scar.  Basically this is the part where they cut out the old scar, opening up the sternum and then separate the scar tissue around the heart from the tissue they need to access.  This is the most difficult and time consuming part of this surgery but once its complete they will start working on the heart.

Surgery Day - bi-directional Glenn - 6:00 AM

6:00 AM

Well we were 15 minutes late but i don't think its going to matter much.  We started out at the children's admitting desk where we went over the financial agreement and they verified our billing information.  This is to be expected but sure is a painful reminder of how expensive this really is!  A new year means a new deductible and co-insurance.  I'm not complaining I would much rather have Lilee than not so the money is really irrelevant in my eyes.

Once we were checked in we went down to an intake room that had the crib that Lilee will be using during her stay here.  They took her weight and length measurements again and also got her oxygen saturations (75%), blood pressure and pulse (130) checked as well.  Then we waited.  Once they were ready for us we were walked down to the first floor and ended up in Pre-op so we could talk to the anesthesiologist and they could get things rolling.

Dr. Leon explained everything that was going to happen today and what to expect over the next couple days.  Asked if we had any questions.  We said a quick prayer with the hospital Chaplin and then handed Lilee over to the anesthesiologist and walked away.  I don't think that moment would ever get any easier.   

Pre-Operative Appointments (bi-directional Glenn)

Friday January 9, 8:30 PM

Today seemed like an incredible waste of time what could have taken an hour took eight.  We were scheduled to take care of all our pre-operative stuff (Consent, EKG, Blood Draw, X-Ray) but before all that we had an appointment with Dr. Marshall who is going to put Lilee's PEG tube in.

Feeding has been an issue ever since Lilee was born.  At time she shows us she has the ability and desire but lacks the stamina to finish all the food that she needs to eat.  Believe it or not this has been the one thing that has bothered Afton and I more than anything.  We really didn't know what to do.  Because of Lilee's moments of eating brilliance we get our hopes up of completely getting rid of the feeding tube all together.  Yet the times when the tube comes out and we get the chance to try eating without it in things don't go well at all.  We also don't know what Lilee will do after this surgery so we decided to put in a percutaneous endoscopic gastrostomy (PEG) tube the day after her heart surgery.  We probably should have agreed to put it in earlier . . . oh well.  Dr. Marshall will place the the tube on Tuesday and I will write more about it then.

After the appointment with Dr. Marshall we headed over to the hospital to begin the pre-op stuff.  All I can say is WOW!  A streamlined procedure would have saved hours of time and tons of money so let me begin: 

Pre-Registration - a room with a bunch of chairs and a couple of receptionists.  They took our information and told us to have a seat.  After waiting for a while we were called back to an intake specialist who took more information and then told us to go back to the waiting room where a nurse would come out shortly.  A nurse did come out and took us to an office where we verified our information again and then she weighed and measured Lilee, and then put some numbing cream on her arms for the blood work which would happen later.  She took us back to the waiting room with instructions to wait for someone from X-Ray.  

X-RAY - Two images of her chest were taken after which we were escorted back to the waiting room and told to wait and someone would take us to EKG.

EKG - Not much to say here it took all of 5 minutes to hook her up get the test results and take everything back off.

Consent - This was the only thing that made today worth it.  Dr. Iguidbashian was waiting for us in the Nurses office and we had an opportunity to hear him explain what he was going to be doing during the surgery complete with hand drawn pictures.  Afton and I both enjoy listening to him and have been impressed with his ability to present complex surgical procedures and information in a very easy to understand manner.  After signing the consent forms we went back to the waiting room.

Lab - Well the numbing cream was placed on the crook of her arm so she was numb there but one problem - the could not find a vein to draw from.  So after all the waiting and the expensive numbing cream and the monster tagaderm band-aids they had to rip off her arm they ended up trying to draw from the back of her hand.  They were only able to get half the blood they needed and after a few phone calls we were told they would get the rest on Monday before the surgery.  Back to the waiting room.

Case Manager - We actually just sat in the hall and a case manager came out and asked if we had any questions for Monday.  She told us where we needed to be Monday morning and went over the waiting procedures and then we were done.

So after all the waiting and shuffling around we figure everything combined would have taken 1 hour max but I guess time is irrelevant when it comes to this stuff.  We are happy today is over and are really looking forward to getting this second surgery over.  So let the games begin - I'll write more on Monday.

Have I mentioned I HATE the feeding tube!

Tuesday December 23, 1:45 AM

Well today will go down in history as a really bad feeding day.  Two complete feedings in 24 hours.  This morning right before Lilees 9:00 meal time she somehow managed to pull out her NG tube.  There it was still attached to her face with the tape still firmly holding it in place - except for the fact both ends were outside the body!  I think she was pretty pleased with herself.  So we quickly got one of our spare NG tubes and hurried to put it in.  Thats when we realized what a crummy tube our extra one was.  There was a 1" not very flexible port at the end so when I tried to get it through the nose it wouldn't bend.  The tube was way more flexible than the tube she had just pulled out so that combined with that 1" port caused the tube to just get bunched up in her nose.  I gave up but lucky us Option Care a company that delivers all our supplies for Lilee was supposed to be delivering a new feeding pump today so we called in advance and were told when the nurse showed up she would put the tube back in for us. 

After missing the 9:00, 12:00, and 3:00 feedings the tube was finally put back in and she ate.  What a relief!  So she got her 120ml allotment at 6:00 and 9:00 but . . . About two hours ago Afton went to begin the Midnight feeding and promptly came back out holding Lilee in one arm and the feeding tube in the other.  Same story as earlier - the tape securely fastened to the face but no tube in the nose.  Not a problem however because we have seen the nurses put the tube in 8 times now and it looked easy plus we had a good tube so we decided I would try. We got everything ready gloves on, tube package opened, end of the tube lubed up, stethoscope on, syringe primed with air.  Measured from the mouth to the ear then from the ear to the xiphoid process which came out to 21cm.  The tube was marked with the endpoint so HERE WE GO!  In the nose push - cry - push - cry - push - cry harder - we finally reached the 21cm.  Still crying, not typically the case in previous NG tube insertions, so I test for proper placement.  I attach the syringe to the tube and put the stethoscope on her stomach and inject a little air.  What you are supposed to hear is a little gurgle in the stomach.  What I heard however was more crying and a really funky heart beat.  So I tested again and heard nothing.  Maybe we missed the stomach and got it in the lungs which can happen.  So I took the syringe and tried to suction to see if we got any stomach juices out - NOTHING. 

We decided we missed the stomach so we pulled the tube out to try again.  Lilee still crying I re-insert the tube and make it to the 21cm mark and do everything I did the first time and all I could hear was her crying and funky heart beat.  It thought I heard the gurgling a couple times but I also think I was trying to convince myself I got it right.  Plus we could not extract any stomach juices.  SERIOUSLY - what the heck is wrong with me.  This looks so easy when someone else is doing it.  Third time is a charm right.  Ummm - no!  Third time was as complete failure as the previous two attempts.  So now that Lilee has cried longer and harder than she ever has before we decided to stop and let her sleep.

Looking back on it I realize there was a major problem I need to figure out how to overcome.  If she is crying that hard and won't swallow how in the world am I supposed to get it in the stomach?  Breathing/Crying keeps the airway open but we need that darned airway closed and the stomach opened.  So later on today after we get some sleep I am going to take Lilee to the hospital and this time ask to be trained on proper placement and technique.  Seriously - what takes a Nurse 5 seconds took me 30 minutes and three attempts and she still doesn't have a tube in.

All we can hope for now is that she will want the bottle in her sleep tonight.  Some nights she does and some she doesn't.  Which one will it be tonight?  There are some things I really don't like and one is inflicting pain on my own children.  Other children - not a problem, but my own. . . Have I mentioned how much I hate this feeding tube? 

Surgery Date - And Final Decision On Feeding Tube

Thursday December 11, 10:30 PM

It feels like a burden has been lifted!  After three months Afton and I decided to get rid of that darned feeding tube in her nose and have a "G-Tube" put in instead. I know it sounds like a trivial decision but deep down we were hoping things would improve on their own so we wouldn't have to submit Lilee to another surgery.  Feedings however are about as consistent as the thought process of our 3 year old.  One feeding with the bottle is great (50ml) and the next she wont even take the bottle nipple in her mouth.  Breast feeding has improved as her strength has increased but since we can't really measure the intake so we call those "bonus feedings".  We thought maybe she has a conscious aversion to feeding as the night feedings when she is mostly asleep are usually more successful but again there is very little consistency so it is hard to pin this down.  Even despite all the feeding woes we have somehow pumped enough milk into that poor little stomach to get her weight over 11 pounds which is what they wanted before we scheduled our next surgery. 

Surgery #2 is scheduled and on the books!  It almost seems cruel to be excited about another surgery but we are ready to get it over with and move on.  The waiting game is a killer and even though we were told the surgery window was age 3 to 6 months we still use it as a benchmark for improvement.  The pre-op appointment will be January 9th and the heart surgery is January 12th with the "G-Tube" placement on January 13th.  The plan as it stands right now is similar to the first surgery we will report at 6:00am and should be done a few hours later.  Because she will have the "G-Tube" placement the next day they will keep her on a ventilator and sedated.  We are not sure how much time we will end up spending in the PICU this time but we do know it wont be near as long as the first time.  We are  

Other than that heart thing Lilee is a DREAM baby!  She smiles all day long, rarely cries, enjoys being held.  She likes looking at her brother and sisters and smiles at them all day long as well.  Every once in a while we get a verbal laugh out of her and she has really started enjoying listening to herself talk.  She wants to touch everything faces, hands, bottle, feeding tube you name it she wants it.  For the most part though she just sits there and watches everything with those huge beautiful eyes.

One Step Closer To Normal Feedings

Monday October 13, 1:30 PM

I feel bad that I have not continued to update the blog on a daily basis but there is not a lot of progress similar to what we experienced in the hospital.  I also underestimated the number of people who are looking for updates so I apologize for being such a lame poster.

Lilee is doing well we did get some good news this morning I thought I would share:  We can stop the Lasix and the portagen.  So all that milk that Afton has been pumping and freezing can begin to be used!  And even better yet at least one of the feedings a day can be directly from the source (if ya know what I mean).  All the other feedings have to be done with the bottle so we can measure the amount of intake.  We have an appointment on Wednesday with our Cardiologist to determine if we will be able to stay off the Portagen but we are hopeful.

She still is not much of an eater.  We are beginning to wonder if Lilee has just figured out the system and realizes she only has to make an attempt to eat and after this short attempt the rest goes in the feeding tube.  I can just imagine her little mind thinking "only a few more minutes of this work and then I'm home free".  I'm sure at some point we will make an attempt to remove the tube and see how her feeding improves.  My guess is that it will improve dramatically, wouldn't yours if you were starving:)

So the improvement is small but the feelings of excitement are not so small.  Any improvement is better than none and Lilee really is doing well.

 

Plural Catheter Removal

Monday October 6, 1:30 PM

Our unsuccessful attempts this weekend at draining the plural catheter guaranteed us a trip to the hospital this morning.  I am happy to say that after a brief echo cardiogram to see if any fluid remained the decision was made to remove the catheter!  It might be a small thing to be happy about but small things add up over time.  In fact looking at Lilee now it is hard to believe that she was ever hooked up to the spaghetti mess of wires and tubes only a week and a half ago.  The only tube remaining at this point is the feeding tube - which might be around for a while longer.

Feeding Tube Craziness

Friday October 3, 10:00 PM

I took my Sisters family and my Parents to the airport this morning.  After I got home, this mornings feeding started an interesting chain of events.  As we were putting a sleeping Lilee back into her crib her feeding tube snagged something on her crib and the entire thing just slid right out.  I remember thinking after I saw what had happened "that was pretty easy" and I wondered why it hasn't come out before.  My guess is its all about the tape that holds it on the face and over the past few days sponge baths and messy feedings must have worn away at the sticky side which caused everything to get loose.

Afton was going to pick up her Dad from the airport so I took Lilee to the hospital.  I should just state here that it was pretty awesome to look at her without her tube in.  If it weren't for that darned tube you would be hard pressed to know she has anything wrong with her.  But I digress - the nurses at the hospital are very good at getting the feeding tube in.  In fact if I didn't know any better after watching them do it I could probably do it myself.  Basically they mark the line for length (so they know when to stop pushing).  Then they lube the end of the line insert in the nostril of choice and push.  When they reach the tape mark they stop pushing.  They then take a stethoscope place it on her belly and inject air through the tube into the stomach.  If it gurgles they know they went down the right tube if it doesn't they pull it out and try again.  See - if I didn't know any better I could do it myself!

After that quick and painless feeding tube fix, Lilee and I got back into the car to come home she was happy as can be.  That was until we were about a mile from home when she decided things were not OK and she really didn't want that feeding tube in.  So she started crying and then sneezing and silence.  When I looked back there she was looking back at me WITHOUT THE FEEDING TUBE IN!!!  That little bugger sneezed out the tube and earned herself a trip back to the hospital.  Afton and her parents were able to go the second time and from the looks of the new feeding tube completely enjoyed themselves.  That thing is taped to the neck, the cheek and the nose.  Even a good tug would not rip that one out.

On top of all this feeding tube excitement we took Lilee to her first church activity.  It was our annual pie and chili cook off.  Many of you reading this might think we are crazy for taking her to such a public place but we were careful.  Lilee stayed in a little room where only a few people came in to visit.  By and large few people even knew she was there.  Honestly it was nice to get out and do something different.

We Are Home!!

22nd Day Post Surgery – Monday September 30, 10:00 PM

Its hard to believe but we are home. Well not actually home but my parents home until our home is at least livable.  We finished up all the necessary things shortly after my last post and then we waited.  Finally one of the Nurses came in and said you can leave when you want.  It was close to a feeding time so we completed the feeding, stood up and walked right out of the hospital.  What an unbelievable and wonderful feeling to put her in an infant car seat and drive away.  I remember feeling relief that this part was over and now we can start focusing on the second surgery in December or January.  I also remember wondering if she should be going home.  Was she ready?  What if something goes wrong?  Do I know what to do?  Despite all of those wandering feelings the happiness I felt completely overpowered any thought of doubt.  Even now as I type this I cant keep from smiling. Isn't it wonderful! 

When we pulled up to my parents place our kids came running out completely excited about having Lilee home.  I could tell by the way they were responding they completely understood what having her home meant.   They sure do love their little sister!

 

22nd Day Post Surgery – 1:20 PM

22nd Day Post Surgery – Monday September 30, 1:20 PM

Now today is going to be an exciting day.  I kind of spoiled it last night with my post but it looks like we are going home today!  One of the things we were waiting for was to see what the drainage from her plural catheter would be.  If it was lower than 10mL then they would remove it and let the body try and take care of it by its self but if we were over that limit we will do the aspirations at home.  Well the amount was 20mL so it looks like we go home with the supplies to do it ourselves.

Dr. King stopped by before his PICU rounds and said things were still looking good for a today departure. I am so excited I can hardly contain myself.  He gave us Lille's prescriptions and said Paula (one of our case managers) would be in shortly to help get supplies and a delivery schedule for our special formula and other necessary stuff so we can continue care from home. 

So now we sit and wait while the processes that get us out of here take their course.  Ill throw in a gratuitous picture of my red head little girl peaceful and sleeping.  More updates coming.

21th Day Post Surgery – 10:00 PM

21th Day Post Surgery – Monday September 29, 10:00 PM

Today was a busy day.  It started out having to move rooms early this morning.  Our roommate apparently has an infection in her lungs so the powers that be decided we should move to a less risky room.  So right before I started my precious hour and a half nap after the midnight feeding I had to pack up and move to the next room over.  I honestly didn't think we had amassed so much stuff but I guess bringing one thing every time you come adds up over time:)

At 6:00 AM they took Lilee to have her blood drawn - and they brought her back about 30 minutes later.  I don't go with them when they draw her blood because I think it makes the nurses nervous.  It seems to go much faster when I'm not there.  When the blood results came back we were visited by Dr. King (Cardiologist) and Dr. Iguidbashian (Surgeon).  They said the blood work looked great and they wanted to do an Echo of her chest to determine if the plural catheter was actually doing its job.  The past couple of days the fluid they have been removing has decreased but it has not hit the magic 10Ml in a 24 hour period for the removal of the catheter.  So they brought in their $200,000 piece of equipment and did their thing.  After they were done they said they didn't see any additional fluid buildup in the plural cavity and that the shunt they placed on the heart looked like it was doing what it was supposed to.  

Audiology came shortly after that and did a hearing test. They have been trying to do this for a week now but every time they show up Lilee begins baking little grunting noises that throw off their tests.  Once they leave she stops making the noises.  I think she knows whats going on and is doing it on purpose.  She doesn't do that for anyone else (thats my girl!).

Afton participated in a CPR class in the NICU today - I am supposed to take the same class but I don't know when I will be able to make it.  They don't offer it during my night shift.

A little spoiler for tomorrow - WE ARE GOING HOME!! 

20th Day Post Surgery – 10:00 PM

20th Day Post Surgery – Sunday September 28, 10:00 PM  

Today was pretty uneventful.  My mom took the day shift so that Afton and I could go to church with the kids but as soon as I got home to change I realized I have not given much thought to laundry and literally everything I own is dirty.  So I began doing some laundry using cold water (it will be nice when we get the warm water back).  

When the family came back from church we ate dinner.  It was nice to have that moment together where things felt like our normal family.  After dinner we packed the kids into the car and came over to the hospital to relieve my mom and to let the kids hold Lilee.  Up to this point all I have posted have been nice staged shots of the family in the room - however it is rarely like that.  In fact the visits are more like a semi-controlled chaos.  Despite that I still LOVE to see my kids hold their new sister.  I absolutely melt when they are so gentle and whisper to her - its almost like for a brief moment in time they understand what is going on.

19th Day Post Surgery – 10:00 PM

19th Day Post Surgery – Saturday September 27, 10:00 PM

Days are starting to run together and trying to get back on a schedule that is cohesive to some family life is taking its toll.  The night shifts have been OK and I have been getting a couple hours of sleep but the most important thing is that Afton is able to be with the kids at night and when they wake up.  I will be happy when we can all be together again!

I think that we will probably get out of the hospital before the house is livable but thats the way it goes.  With the help of a bunch of people I was able to get 100 sheets of 4x12 drywall upstairs and get the insulation in. Monday I have an insulation inspection and the drywall is already getting put up on the ceilings.  So we should see some real progress this week.  There are a lot of people that have helped with the house recently and I want everyone to know how much I appreciate it.  The help has saved me days worth of work.  I am truly grateful.  

Back to Lilee: The plural catheter didn't produce anything this morning.  The nurse was pretty happy about it but I kept saying that it wasn't right.  You don't go from 50ml a day to 0ml overnight.  Especially since this this was the first drain after being moved to a 24 hour schedule.  So from the time we tried to drain all morning Lilee was not happy.  She was breathing differently, wouldn't stay awake for long, and eventually the PA that works with Dr. King stopped by to mess around with the catheter to see if it needed replaced.  He replaced the cap and wamo - we had drainage.  He pulled 40ml without even moving her around.  Its always nice when they drain her chest because she is much more comfortable afterwords.  Afton was just coming for her shift so she got a happy baby.  In fact after I left this is what Afton was able to take a picture of.  Its important to note here that I have yet to personally see the smile but I cant see any signs of Photoshop in this picture so I will have to concede that she actually does smile. 

Feeding today was not the greatest and this is the area that I see becoming very long and drawn out.  Her "portagen allotment" is 65ml every three hours still and she only consumes 10 to 15ml on average.  There are some feedings that exceed that average but that happens about once a day.  To give you an idea 5mL = 1tsp.  So that typical feeding is 2 to 3 teaspoons, and we get really excited with5 to 6 teaspoons.  It is truly is amazing.  

Her medicines have remained constant the last few days as well.  She gets digoxin, lasix, aspirin, prevacid, and Tylenol.  She gets these meds via the feeding tube if its close to or a bottle feed and when thats not the case they give them to her orally.  She likes the feeding tube way better.  She also gets a little shot of heparin in her IV the same time as her meds to try and keep that IV line open..

17th Day Post Surgery – 9:00 AM

17th Day Post Surgery – Thursday September 25, 9:00 AM

Dr. King (Lilees Cardiologist) stopped by as planned a few minutes ago.  He noted that the fluid aspirated from her Plural Cavity seems to be decreasing but that could be because it is actually decreasing or it could be we are not getting it all.  We have an X-Ray scheduled for tomorrow morning so he said he would wait until then to find out.  Based on that X-Ray tomorrow we will be able to determine if we can take Lilee home or if she will stay and have the surgery to tie off the thoracic duct.

Our night feedings were pretty consistent at 15ml taken from the bottle and the remaining 50ml fed through the tube.  Early this morning she was taken down for blood work which came back stellar. Its the same story stable and healing with the small issue in the plural cavity and feeding.  It will sure be nice to get over this hurdle.

She is currently sleeping and looks very peaceful.  Its nice to see her completely relaxed.  I wonder what she feels like.  I wonder if she even realizes what she has been through and how amazing it is that she is here with me right now. I wonder if she is afforded a unique knowledge of her purpose here.  I wonder if while waiting to come and be with our little family she knew the body she would get would have problems.  In any case I sure do love her and I am happy that she is part of my family.

16th Day Post Surgery

16th Day Post Surgery – Wednesday September 24, 8:00 PM

I made it back from my Las Vegas trip safely at midnight last night.  My mom is took the night shift, Afton took the morning shift, Dawn Graf spent most of the afternoon and early evening and I am taking the night shift tonight.  The routine is pretty much the same as it was when I left with a few changes.  They have increased the feeding amounts to 65ml every three hours.  The antibiotic has been discontinued.  And the draining in the Plural Catheter has gone down but not a lot.  Dr. King should be stopping by in the morning and let me know what the plans are with that. 

I wanted to to thank again everyone that has helped while I was away.  My grandparents even took a shift - how cool is that:

Lilee is very alert and is getting stronger.  When she is awake she is looking around non stop.  Her cry is getting stronger as well.  Its not the quiet whimper we had after the breathing tube was removed but its not a very loud cry either.  I would describe it as a cute cry.  We shall see what Ethan thinks of it since he loves listening to babies cry while he is holding them.  She still hasn't acquired a taste for the portagen formula and it doesn't look like she is even going to try.  She knows the good stuff is out there somewhere and it seems she is content waiting for it to come back.  It has been amazing to hold her again.  I sure do like my little babies!  Lilee fits just right in the crook of my arm and I can hold her for as long as I want and she doesn't care.  In fact its pretty obvious she likes it.  I have been told of smiling rumors while I was gone - but as of now they are just rumors until I personally get a legit smile out of her.  You can trust me when I say I will keep trying until I get one.

14th Day Post Surgery - 9:30 AM

14th Day Post Surgery - Monday September 22, 9:30 AM

Today I feel like I have abandoned my family.  I am currently attending a conference in Las Vegas and will be here until Tuesday night.  I did take the night shift for the last couple nights so that Afton could rest up and be prepared for my absence but I still feel guilty.  Afton has been keeping me up to date with text messages and has also been emailing pictures to me so I still feel like I am in the loop.

Afton has had more success in feeding than I had under my watch.  I received two texts stating Lilee ate 25ml in two consecutive feedings.  This is 10ml more than she was getting when I was feeding her - Incredible!  We are still not there yet however we are looking for 60ml in one feeding.

An X-Ray this morning still shows that her lungs are "fluffy".  So they want to watch that.  I am not quite sure what fluffy lungs are but I will find out and re-post that information.  They can also see a pocket of fluid which is the same pocket the nurses drain 35ml of fluid out of twice a day.  We are hoping that goes away in the next couple days as we are already talking about options.  I am going to spend some time today and find out what happens physically when the thoracic duct is surgically closed.  That seems to be the option that we will end up with if we cant get it to stop. 

One exciting thing that Lilee has been doing is smiling. Afton and I are aware that she is probably not doing it voluntarily and that its probably gas but its pretty neat to see.

11th Day Post Surgery - 11:30 AM

11th Day Post Surgery - Friday September 19, 11:30 AM  

Wow this sleeping at the hospital stuff is going to take some getting used to.  Two hours sleep only to wake up for an hour to feed, and then back to sleep for two hours.

At 6:00 AM we went downstairs to get some X-rays of Lilees chest.  It didn’t take very long but we both had to wake up for it.  When we got back from that X-Ray they did an Echo of her chest.  Shortly after that Dr. King stopped by to check on things.  Similar to yesterday they are still concerned about the fluid in the plural cavity and probably more importantly feeding. 

For the draining in the plural cavity we are all hoping it stops on its own.  If it doesn’t stop then Lilee will have to have a little surgery to close the thoracic duct.  I mentioned in an earlier post that the fluid in the chest contained Chyle and that was the reason we had to stop feeding breast milk and move to the portagen.  By closing off the thoracic duct we will close off the pathway this fluid and fats use to travel to the chest and dump its contents into the bloodstream.  This is all speculation though and hopefully we won’t even have to go there. 

Our surgeon and his PA stopped by to look at the wound.   There are two small sections that have not sealed shut.  The surgeon was not overly concerned about it and placed the blame on nutrition.  So eventually it will heal, just not as fast as we hoped.  The seepage was due to fatty tissues not receiving adequate blood supply so it liquefied and seeped out – that is to be expected. 

So today is a focus on feeding day.  This special formula is nasty (yes I tasted it).  I guess it’s no secret that babies don’t like it either.  Last night she ate 5ml, 15ml, and 10ml from the bottle before I had to push the remaining portion through the NG tube.  For a normal feeding they want her to consume 60ml.   This morning she didn’t want anything to do with feeding whatsoever.  I feel I am pretty good at this but I could not get her to eat – after 20 min she had not consumed a drop.  So they called in the feeding specialist Fran (who is awesome).  Fran tried using different bottle nipples and after about 20 more minutes Lilee had consumed 5ml.

10th Day Post Surgery - 11:25 PM

10th Day Post Surgery - 11:25 PM

I couldn't let a day go by where I didn't post some sort of update - so even though its pretty late here goes.

After making rounds this morning the doctors said the wound on Lilees chest is healing nicely.  They are still going to change the bandages a couple times a day but just to be safe.  Probably the most exciting part of today was the removal of the central line (The IV in her neck).  With that gone we were able to put a little shirt on her.  Probably not the most exciting news on the planet but that little shirt marks progress and when you are taking things one step at a time each little step is really a blessing and a miracle.  They are still aspirating her plural cavity with the left side producing nothing and the right side about 50ml of gunk.   I am told this should start decreasing soon.  We just finished a feeding at she ate 5ml which is not very much and I fed the rest using the feeding tube.  Hopefully the midnight feeding will be better. 

Due to the craziness with the home construction and everything else going on today was messed up right from the get-go.  I finally made it to the hospital at 7:00 to spare Afton.  One of us gets to stay here in the room 24 hours a day.  So we have decided to take turns at night.  Last night was Afton and tonight is my turn.  So for our change of shifts I brought the kids so they could hold Lilee for a few minutes each.  They sure get excited to see her, its really kind of neat.  Especially since she is not hooked up to pumps and tethers and the kids can really hold her.

I thought that some of the people reading this would be interested in what our little experience costs.  So I am going go create a page called "What does it cost" that I will update as I receive a bill.  We are extremely lucky that we have insurance and that some of our "experience" is going to be covered.  I am trying to figure out a way to display the information so it is readable.  My initial attempt has not produced results that accomplish that so I will try again later tonight.

Well I have been looking forward to my alone time with Lilee all day and its almost feeding time so I'm going to go hold her for a bit.  How cool is it that my kids are able to hold her now though, here are some pics:

 

9th Day Post Surgery - 11:25 AM

9th Day Post Surgery - 11:25 AM

Lilee has officially been transfered out of the PICU!  I came in this morning to hold Lilee before Afton got here and to get some alone time with my little girl. Well I didn't get my alone time.  They had just started feeding her as I walked in and after about 20 minutes they stopped the bottle feed and moved it to the feeding tube.  She ate about 20ml on her own so she is getting better. 

While they were preparing her to get transfered out of the PICU I held her and it was AWESOME.  She seems content and happy - until you move her and then she will wake up and give you a stink eye.  When it was time to move rooms they let me hold her as we walked down the hall.  All I could think of is how jealous Afton is going to be when she shows up.

Our new room is on the Peds floor and its not bad but not nearly as nice as the Peds ICU.  It looks like later today about 6:00 we will get our first roommate.  We are already going through Nurse withdrawals.  In the PICU we had our own and in there we have to share.  After we figure out the flow in our new room everything should be just fine.  Another bonus to getting moved out of the PICU is that we can have more than two people next to the bed at one time.  So a visit from the family will be a visit from the family and not individuals. 

We are thrilled with the progress Lilee is making and look forward to posting more today.  We might even get a possible discharge date today but again I might be getting a little ahead of my self.

8th Day Post Surgery - 1:00 PM

8th Day Post Surgery - 1:00 PM

Well, we have a little bit of a bummer.  This morning they tested the fluid they have been suctioning out of her plural cavity because it has changed color.  The fluid tested positive for Chyle.  Chyle a thick mixture of lymph and tiny fat globules and usually has a milky white appearance.  It is the byproduct of lymph capillaries function in the small intestine.  Carbohydrates are small enough to pass directly from the intestine into the bloodstream, fats are not.  So these lymph capillaries in the small intestine are able to absorb those fats and anything else that is too big to get absorbed directly into the blood.  These lymph capillaries are also called lymph lacteals.  Since we messed up the natural function of Lille's body during surgery it takes a while for things to get back on track.  So breast milk is out for a while until Lilee can begin to digest the fats again.  I am pretty sure the technical term for what she has is a "chyle fistula" http://en.wikipedia.org/wiki/Chyle.

They will be feeding her a special formula called "Portagen" which has smaller fat molecules so it will be able to pass through the lymph capillaries and on to the liver without getting lost and ending up in her abdomen.  Its all about pressure!  Let me tell you this body of ours is one amazing machine.  I want to take organic chemistry again just so I can be reminded of how intricate and incredible the minute processes are that keep us alive.  We take them for granted when it works correctly don't we?

Here is our beautiful red head with only a feeding tube - how awesome is that!

7th Day Post Surgery - 5:00 PM

Two incredible things happened today:

First – The Milrinone Lactate Injection and Dopamine IV’s were both stopped and removed.  We were told that as long as she was on these two medications we would have to stay in the ICU.  So we are making progresson that front.

Second – We changed beds.  We were able to get rid of the Extra-Corporeal Membrane Oxygenation (ECMO) bed.  ECMO is an intensive care therapy that oxygenates the baby's blood outside the body and returns it to the circulation until the heart and lung recover.  Im not sure if we ever had to use the bed but they used it just in case.  I don’t know much about the beds but I do know another family who is in the NICU that came down from Seattle because they didn’t have an ECMO bed available!  In any case they unhooked all the stuff that was attached to the bed and brought in a crib.  It is so much easier to look and touch Lilee now that we don’t have to stand on a stool to get up over the bed.



For feeding we have been relegated to bottle feeding until speech therapists come and take a look at Lilees suck reflex.  She seemed to do well last night but they ended up putting a feeding tube back in.  We were told that they wanted to measure how much food she was getting.  So every three hours they fill a bottle and give Lilee 20 minutes to eat as much as possible after 20 minutes they measure how much she has consumed and then put the remainder in the tube.

Today was also the first day we have tried to work a schedule where I go back to work and Afton stays at the Hospital.  It didn’t really work out the way we had expected but the two of the kids did get off to school, the other two were taken to someone’s house, Afton went to the hospital and I went to work.  It was crazy!  We will figure it out though.  A special thank you here to my sister Sherilyn and my Mom for completely organizing and turfing off my kids for the past week.  It’s a task I don’t think Afton or I could have handled without help. 

6th Day Post Surgery - 5:00 PM

6th Day Post Surgery - 5:00 PM

There is so much going on I don't even know where to start.

Last night they turned the Ventilator off in preparation to remove the breathing tube.  After watching her all night and monitoring her blood gasses they decided to move forward and remove it.  The procedure looked fairly simple once everything was set up and ready to go.  In the room we had our Nurse, a respiratory therapist, a Nurse from the next room over.  I was able to stay and video tape which I am thankful for because I know Afton will want to see it.  In any case they removed the tube and then put a nasal canula on which was giving her Oxygen.  After monitoring for a short time they removed the canula and really cleaned her up good.

I took a short break to run home and get the kids ready for Church and on my way out our Nurse said they would probably begin feeding from a bottle in a couple hours so we would probably want to be here for that.  He was right!

So after a short stay at home and after dropping the kids off at Church we both came back to the Hospital to be a part of the initial feeding.  But to our surprise they had really cleaned Lilee up good and she looks incredible.

Right after this picture was taken they removed the round band-aids on her face, and also removed the Central Line.  The Central Line was a small tube that they stuck in the belly button, tapped into an artery and fished it up so that the end was by the heart.  Through that tube they were getting a blood pressure.

Once the Central line was removed our Nurse brought out the bottle - cherry flavored Enfimal!  We were expecting the worst here since there was uncertainty on whether or not she would remember to suck.  The cherry flavor did not do it for her so we switched to apple and she began to suck!  So for the next 20 min or so when would suck and then fall asleep and then repeat.  The important thing here though is that she is sucking!

The Catheter was also removed just a few moments ago - it seems like things are moving very quickly.  Definitely much quicker than I imagined it would.  It is also time for the second feeding and she is sucking like crazy!  YEAH!!!

5th Day Post Surgery - 9:00 PM

5th Day Post Surgery - 9:00 PM

Today something very special happened when we took the kids to see Lilee again.  Since we can only take them in one at a time is a lengthly process for them all to spend some time in the room.  I went first with Maren.  As soon as we walked in the room Maren started talking about Lilee so we went directly over to see her.  Once we got to the bedside I stuck finger in Lilees hand.  She startled, grabbed my finger, and opened her eyes.  I don't think it is possible to explain how much joy and happiness I felt in that little glance.  They were only open for brief moment and she closed them again but when I started talking to her she opened them up again and looked at us.  It was probably the most simple thing that could have happened but it nearly brought me to tears.  We knew it was only a matter of time she would be able move after they stopped the paralyzing drug (forgot the name of it) but it was a surprise I wasn't expecting.

Throughout the day she wiggled and would move her feet and hands.  A couple times she coughed.  Right before we left the Nurse said she had received orders to turn off the ventilator at 4:00 AM and let Lilee breath on her own.  They will then take some blood gas levels at 6:00 AM to see if they need to put her back on the machine or leave it off.  In addition to that she is receiving food through her feeding tube.  Afton has been diligently collecting and storing milk in the freezer so they can use it as needed.  Today has been really exciting.

In closing I will share this picture I got of Lilee opening her eyes and leave you with Marne's response to Lilee opening her eyes: "Wilee not asleep, Wilee awake - Hi Wilee!" [SIC] 

 

4th Day Post Surgery - 7:30 PM

4th Day Post Surgery - 7:30 PM

Her chest is closed and she looks great. 

There was a little issue with a collapsed lobe in the lung but that is being resolved with a some sterile water and some suction.  For the most part she has all the same tubes she had before the closure but a couple of them are capped off and are not being used.  Depending on how she does this evening and early tomorrow AM we will probably see tubes and machines leave the room and that is very exciting.

Its been a long day - and I have a birthday girl I want to put to bed!  Today was a great day!

4th Day Post Surgery - 2:00 PM

4th Day Post Surgery - 2:00 PM

I cant help it - I have to put a pic of me in here with my baby girl!  One of the last pictures taken before the chest is closed:)

We were kicked out of the ICU a few minutes ago so they could begin preparing to close her chest.  Pretty cool they actually do the procedure in the same room we have been in.  They do make it a sterile environment, everyone puts on masks and gloves and they shut the door.  We were able to Help move stuff out of the room and then hung around for a while as the masses of staff gathered outside the room.  We had X-Ray, Ultrasound, Anesthesiologist, Surgeon, Cardiologist, two Nurses, and a bunch of others that were all going to participate.  They said it was going to be crowded but that was a lot of people.

So to do the job they will put her completely to sleep, remove the saran wrap covering exposing the small sutured material covering the heart.  Then they will remove that liner and irrigate the chest cavity.  They might have mentioned a few other things they were going to do but I cant remember what they were.  To close the chest they will use a small wire to hold the bones together.  For the skin closure I'm not sure if they will suture or use skin glue.  there is not a lot of skin there so my guess is the glue - we will see. 

As I was typing a friend of our family Gayle - who was participating in the closure knocked on the window to give us an update.  "The chest is closed and now they are closing the skin.  She is doing great."

We will hear shortly that they have finished and will be permitted to go back into her room.  More posts shortly.

4th Day Post Surgery - 12:00 PM

4th Day Post Surgery - 12:00 PM

It sounds as if they are going to close her chest today.  Things look to be going well, they changed all of the tubes and syringes last night.  She is really not as swollen so the dialysis is working.  In fact she is looking more like a newborn than an older baby.  The little newborn wrinkles are coming back:)

So on top of planning to close later today the order have been given to stop the Vecuronium which is the paralytic.  Once they stop that she will be able to move by herself but probably wont due to the fact she is still gorked out on the Fentanyl.  Slowly however they will decrease the Fentanyl and she will wake up - everything in due time.

On a side note today is Claire's birthday and she got a bike!  I just wanted to wish her a happy birthday and let her know that even though it may seem like all the attention is on her new little sister, we remembered her on her special day.

3rd Day Post Surgery - 12:00 PM

3rd Day Post Surgery - 12:00 PM

This morning a decision was made to not close her chest today but wait until tomorrow.  They decided to give her some platelets (from donor blood), and an X-Ray showed there was a little issue with air buildup in the chest.  So they removed and re-attached the pleural cathater to make sure it didn't have any kinks and then manually aspirated her chest.

I was able to take Ella and Ethan over this morning to see Lilee.  I thought it would be a good idea for them to be able to spend some "quality" time with me so they could just look and ask questions.  We went over again what all the tubes did and they were able to hold her hands and feet.  It was pretty cool to have them in there, I enjoyed it very much.

I have been getting quite a few questions lately so I thought I would dedicate a post, or a static page to answering any questions you might have about Lilee, the heart defect, her operations, or her recovery.  Just post a comment to this post that has your question and I will answer it.   

2nd Day Post Surgery - 7:00 PM

2nd Day Post Surgery - 7:00 PM

Well we have had a myriad of visits from Cardiologists, Nurses, and Respiratory Therapists today.  From the sounds of things they plan on closing her chest up Thursday afternoon or Friday.  They are monitoring her swelling to determine when they will actually do it and because she is still pretty swollen so my personal guess is Friday.

There was a little change today as well they added a new suction pump to aspirate her chest.  Up to this point they have been doing this manually.

I found a compromise to my photo dilemma.  I have covered the chest with a washcloth so the graphic stuff is really not that visible but this still allows everyone to see how beautiful Lilee really is, even with all the wires and tubes.

2nd Day Post Surgery - 2:30 PM

2nd Day Post Surgery - 2:30 PM 

We have been taking it easy in the mornings trying to get to the hospital around noon or early afternoon.  There really is not much we can do while we are here.  So the advice of everyone is sleep at home and spend some time with your other kids.  So we have.  Doing that does bring a little guilt however because in the back of your mind you feel like you should be sitting there even if nothing is going on - just in case.  I also find that when I am away from the hospital I am fidgety, tapping my feet, fingers, chewing on pens, etc.  Once I'm at the hospital all of my little nervous fidgets disappear and I feel a real sense of peace and calm.

So where am I?  For the last couple days I have been hanging out in the Family waiting room.  This is a locked room with some basic  comforts like a TV, a bathroom with a shower, a bunch of chairs, and a small kitchen with vending machines.  This is the same room we waited in on surgery day.  The room isn't bad but its not the most comfortable and its available to everyone that knows the code on the door.  To get to Lilee however I had to pack up and head down the hall, pick up a phone and have them unlock the doors to the ICU.  So today I got smart and set up camp in the same room as Lilee and this is nice.  It is private, there is a small rocking chair, they have some soft classical music playing in the background.  On top of all that I can look up at Lilee any time I want to see whats going on.

There are random noises that for the most part are very comforting.  The wound drains are suction based and to control the suction they use water.  So in the background it sounds like a water feature.  The machines keeping her alive right now are all silent.  The pumps (10 of them) don't make any noise until they run out of the stuff they are pumping.  Then they beep for a short period of time until the nurses replace the "stuff".

Lilee doesn't move or make any noises because she is asleep in a major way.  One of her pumps gives her fentanyl which makes her high and puts her to sleep, and another gives her Vecuronium which paralyzes her so her movements don't pull out any of the tubes stuck in her.  She is still on the respirator and has a catheter.  They also have her on peritoneal dialysis (which I might say is Wicked Cool - Ill do a static page on it later).

It still amazes me every time I look at all of these tools that provide life.  What an amazing blessing to live in a time where any of this is even possible.  The tools the drugs, the skills, the facilities it is truly amazing and something I will be grateful for, for the rest of my life.  I had a little moment earlier where really hit me - without the concert of everything that has happened up to this point Afton and I would have been planning the burial instead of planning a visitation schedule.