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.

 

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!

 

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!

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.

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!

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.

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.   

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.

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? 

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.

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.

 

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.

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.

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 – 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 – 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 – 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 – 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 – 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 – 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 - 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 - 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

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

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

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!

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

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

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

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

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

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

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

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 

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.

2nd Day Post Surgery - 2:00 PM

This is a special Post for Dr. Lowder - Enjoy

 

Our kids were able to come see Lilee today.  For the past 6 months we have been preparing our kids for all the things that might happen to "our new baby", mostly in the event mommy goes to the hospital to have a baby but we don't bring one home.  It has been wonderful that we have not been in that situation.  Instead we find ourselves preparing our kids to see Lilee with all the tubes and wires connected to her.  Well they have a program here in the hospital where kids can come and have organized play with a Family Life counselor.  During this organized play they have dolls that they pretend have had surgery and they allow the kids to put feeding tubes, respirator tubes and IV's into.  They talk about all the different wires and tell them what it is for.  They also give them a "gift bag" with a coloring book that explains what goes on in the hospital, and a beanie baby.  It was a very cool program and we are thankful our kids could participate before they went into see Lilee.

So after playing for a short while we got special permission to take all of our kids in to see Lilee at the same time.  So wearing their gloves and masks from playing we went across the hall to the Pediatric ICU.  They covered Lilee's chest with a blanket so the kids would not see that first.  What a special moment!  Ethan, Ella, Claire, and Maren got to see and touch their new little sister.  They were able to see all the wires and tubes and we took a couple "family pictures".  Then we asked the kids if they wanted to see Lilee's chest and all of them said yes.  So off came the blanket and the saw their sister wide open. 

It was interesting to see their responses.  Ella was interested but did not say much, Ethan immediately started asking if she would have a red scar that would turn white later, Claire was fascinated with the hands and feet so I'm not too sure if she even saw the chest and Maren was just happy to be there.

 

After much thought I have decided to post an after surgery picture.  There are others but I don't want to be too sensational or take away from the real reason I'm posting.  There was also a little concern on my part about how others would view the pictures.  I have shown them to a few friends and their reactions have all been very different.  Most of them saying they were not really prepared for what they saw.  So maybe slowly I will release the pictures but for now the distance shots will have to do until we see what the comments are.  

So with that - here is the first picture we took when we saw Lilee after surgery. 

After the shift change from 7 - 8 we were able to go see our little girl.  It was INCREDIBLE.  You can not imagine the excitment and joy to know that one of the most difficult aspects of this whole ordeal is now over.  I am not sure if I will post any of the pictures I took because they are pretty graphic.  I will try and get a far away shot so you can at least see what is going on and what it looks like.

As of now her chest is left open with a surgical plastic membrane covering the open cavity.  She is paralysed and on a respirator.  She has good color and is a little swollen from surgery but other than that she looks beautiful. 

I want to thank everyone that has come to this site to get updates.  I have been completely overwhelmed by the amount of love and support that has been shown my family.  There is no way I could ever pay it back so I hope you all know that I am truely appreciative of your prayers, fasts, and the constant thoughts.  You have all been truely amazing.

 5:15 PM   

She is out of the Operating Room and in Room 4 of the ICU.  We get to see her in about an hour.  Our surgeon, John Iguidbashian, just stopped by to let us know about the surgery.  And he basically said everything that we have reported above.  They repaired the aorta, removed a membrane from the heart, added the donor vein with gortex reinforcement.  He said there was very little bleeding.  He did say he left the chest open and they will close that up in the next 3 to 5 days.  Until that time she will be on a respirator.

An interesting tidbit I thought was completely awesome:  The blood that they suction off during the surgery was spun down and given back to her, so the actual blood loss was very minimal.  We didn't ask about transfusion but we were told earlier that they have to prime the Heart & Lung machine and they usually do that with donor blood.

4:15 PM   

The heart is no longer being bypassed. So things have been going incredibly well.  They are currently working on the drain lines and will be preparing her to move back to the ICU during the 5:00 hour.  It takes them about an hour to get things set there and then we will be able to go in and see her. 

2:45 PM   

They are currently working on the Sano Shunt (a donor vein with a valve, and a small gortex piece to strengthen the ends).  Once they finish up there they will begin to warm her up so they can remove the heart/lung bypass.  Once that is removed they will begin putting in the drains and check for leaks.  If all is well at that point they will prepare her to leave the OR and head back to ICU.  We will know more at our 4:15 PM Update.

1:30 PM   

They are currently working on the Aortic Arch and as soon as they finish up there they are going to move to the SANO Procedure.  All seems to be going well.

I realized I have not taken the time to explain what is happening so I think I will take a brief moment and do that now.

This is the first stage of a 3-Stage procedure.  During these three stages the heart is being reconstructed so it will work using only two of the heart's four chambers.  There are many names for the first stage with each of the names being a different variation of the surgery.  Norwood procedure, Modified Norwood, and now the Sano Shunt.  My understanding is that Lilee is receiving the Modified Norwood with a Sano Shunt.

So today the right ventricle becomes the main ventricle pumping to the body.  A new aorta is made from part of the pulmonary artery and the original, tiny aorta which is reconstructed and enlarged to provide blood flow to the body.  Finally to provide blood flow to the lungs, a small tube graft is placed from the right ventricle to the lung vessels (Sano modification).

We have been told that due to the extensive reconstruction of the aorta this operation is one of the most challenging heart surgeries in pediatrics

12:00 PM   

No picture this time - a quick update from our case manager said she was hooked up successfully to the heart and lung machine.  And they were going to begin the incision shortly.  She will be back at 1:30 PM for more updates. 

9:00 AM   

Things are running late this morning.  Lilee has been prepped for surgery and the transfer is complete.  We just left the NICU, Lilee is headed to the OR and Afton and I are headed to the Family Waiting Room.   Afton and I both agree saying goodbye has been the most difficult aspect of this whole thing so far.  So now its a waiting game - we have been told by our case manager that she will visit us at 10:30 AM to give us an update.  We were told last night that it takes a good two hours to get everything set up.  Surgery today was expected to take 6-8 hours.

 

5:30 AM   

Lilee received her first bath about 15 minutes ago.  We missed it because we were sleeping but believe it or not her crying woke us up.  Both Afton and I think its funny that a cry we have only heard a few times could do that.  This bath was the first in the prep for surgery.  After the bath they put her in a new bed and moved all the stationary pumps and monitors to the new bed.  The next step will be an ultrasound of the heart so they can get accurate measurements and placement before they make any cuts.  After the ultrasound the anesthesiologist will visit and explain what he is going to to.

 

 

Lilee Afton Foltz

• Born 9/4/2008 1:35 PM
• 7lbs 13oz
• 20" Long
• 34.5cm Head