Sunday, August 25, 2013

Ho hum

    Today we had a great morning. We decided that since daddy was flying home, we would have some fun first. We went to Atlantic City. We walked the Boardwalk, rode the carousel and ate lunch. We had to call it a day early because Daddy had a flight to catch. So ho hum.... Our day ended with dropping him off at the airport and heading back to the rmh. We are now doing laundry and going to bed early. Maybe we will find an outlet mall tomorrow and have some retail therapy now that daddy is gone and Olivia needs to walk to move the fluid and expand her lungs.
   Update on olivia's healing. Each day we struggle to get her to eat and drink enough. She is on alot of meds to get the fluid from her lungs and we think these are also causing her to have diarrhea and alot of it. She is also having some oozing from her chest tube site where she still has stitches when she cries or is really active. We see the doctor tuesday morning for an echo, xray, labs, and ekg. I am hoping for the all clear but doubt plagues me.

Friday, August 23, 2013

Chest xray and blood work

It's been a very nervous day. Today we felt would decide if we got readmitted or not. We finished at chop at 10:30. We just got the call from Dr. Natarajan that the plueral effusion is not any better but it is also not any worse. The good news is her potassium is up at a good level, so we'll keep forcing the dose on her after she falls asleep. She fights like hell but she needs it with all the diuretics. All of her electrolytes are good.

Melanie thinks that Tuesday if it isn't any better olivia would have bought herself another week in philly or worse a hospital admittance. Tuesday will really tell the story on if it is getting better because an echo cardiogram is more detailed. Sometimes x-rays don't allow you to really see what is going on.

Really wish it had been a little better so we knew we were moving in the right direction. Oh well. Next big day is Tuesday. Hopefully it starts getting smaller. In the meantime we are going to run her and have her play to really work those lungs. Supposedly activity helps effusions.

Thursday, August 22, 2013

5 paragraphy essay

Discharge yesterday went great.  We had to wait until 3pm, but I've come to expect the nurses to drag their feet on discharges.  We had a socially awkward nurse, who should be at an adult hospital.  She brought in all of the nasty meds and told Melanie, "here are her meds she needs to take them now while I am in here."  Olivia was at her limit, so just seeing a nurse freaked her out.  Melanie, a fellow nurse, told her where to go ... "outside."  There is no feeling like taking that last ride down the elevator and sticking that little lady in the car. You just wish her next stop was her real home and not the Ronald McDonald house.

Med list:
pain, Tylenol every 4 hours  - 6ml's
pain, Motrin alternating every 4 hours - 6ml's
diuretic, Furosemide (Lasix) 3 times a day - 1.5ml
diuretic, Spiralactone 2 times a day, 3ml
electrolytes to make up for diuretic, Postassium 2 times a day - 9.8ml
stomach, Omeprazole 2 times a day - 3ml

They usually send them home on oxycodone but it causes a bad itching reaction, so the choice was good pain meds or her ripping her face off.  She seems to do fine with the tylenol and motrin.

Yesterday she ate and drank pretty good.  She played and was trying to run around the play area.  She has limitations, like no playground equipment, slides, or putting both hands above her head.  Luckily the RMH got rid of their slide, and just have a playhouse so she's not tempted every time she is downstairs.  There isn't much we can do about the Williams sleeping style, with both hands behind the head as we go to sleep.  They also say not to sleep on the tummy but as her favorite sleeping position I am not sure what to do.  When she's a teenager I'll apologize to her that her sternum is a little out of whack because I couldn't bring myself to move deeply sleeping sweet 2 y/o Olivia.  Not to mention she wanted to walk around in Melanie's flip flops and fell onto her face.   Perhaps she was safer in the hospital with someone watching over us but we are doing our best, ha ha ha.

She just wants to have fun, but instead we have to force  this nasty postassium down her throat.  If only she could eat 3 bananas a day we would be okay.  I spent a good bit of time last night concocting postassium kool-aid popsicles, but alas she took one lick and handed it back to me.  There just doesn't seem to be a way around that taste.  She used to take all of her meds like a champ, now every med including the tasty ones are like shooting poison in her mouth.   She's crying for poison control and we just keep holding her hands and head chasing around her mouth squirting 2 ml's at a time.  If they made baby straight-jackets we could use one.

Today we are watching her every move, breathing, pulse ox numbers, how much she is eating and drinking.  We are hoping to discern whether the effusion around her lungs is getting better or worse.  Of course this morning she doesn't want to eat as much, and her breathing sounded a little weird but her pulse ox sats were 88% .  Then she got active, and then she wanted a nap, but didn't want to drink.  Basically we won't know until that chest x-ray on Friday whether it is getting better or not.  Yes, we want to scream, but she's just so damn cute.

Plan is eat, drink, force the meds, and hope Friday and next Tuesday are positive results.  Friday we will be hoping for the chest x-ray to look better, and Tuesday's cardiology and echocardiogram appointment will show the effusion is getting better.  If that is the case hopefully the great Dr. Natarajan will say the words Melanie will keep repeating in her head... "you can go home."  Probably going home on all the diuretics but going home nonetheless.  This is how it plays out in my mind, because it kills me to have to leave them on Sunday to go back to work and love on the older kids.  It would just suck if she were to get readmitted or they wanted her to stay longer and I wasn't here to help.  There is nothing worse then being in the hospital with a sick child by yourself.  It really is a team effort or you get drained of life very quickly.   Anyways everyone needs to hope Friday and Tuesday go good so our family can be reunited and Olivia can get back to being Olivia with a new lease on life.  5 paragraph essay done!

Life at RMH

  Since Olivia's discharge, we have spent alot of time resting. She is on little pain meds and because of that gets very cranky when tired. We are trying to reset routines that got messed up due to being in the hospital all the while trying to be sweet and loving when she doesn't listen. We have a follow-up chest xray tomorrow to make sure her lungs look better and that the diuretics are working. We are also trying to get lots of daddy time before he flies out Sunday.

Wednesday, August 21, 2013

Discharge Slow Motion

Yesterday was one of the harder days so far.  However, today is discharge day!  It also turns out that our friend Lydia Dansby is also getting discharged today too.  Angela, Lydia's mom and I shared a discharged high-five.  Now it's time for time to slowwwww down to a trickle.  Every minute will feel like an hour as you wait for those final words and discharge instructions. 

To pass the time I'd like to add how much last night sucked to the blog for posterity.  Monday we were fighting getting her to drink and eat.  They had given us goals of 30 oz.  They said that was the only thing keeping us from discharge.  We worked hard at it but she missed her goal by about 10 oz.  It's hard to have your goal right there in front of you and see her struggling so hard to understand why she needs to drink.  With her so low on fluids they gave her IV fluids that night. 

Tuesday's IV fluids from midnight to 6am,  led to a tuesday of not wanting to eat or drink even more so than Monday.  It just takes the thirst out of you.  We spent the day saying, "you want juice," "you want to eat," "drink this," "try this."  We were all frustrated with each other.  To break up all the fun we were having her discharge echo was done; they do an echo on everyone before they can leave.  She finally has logged her worst echo ever in the record books.  She cried and screamed the whole time with "owwie's."  The only reprieve was when the radiologist would turn the sound on and she could hear her echo through the echo.  She wouldn't even take the typical echo lollipop.  We were freaking out thinking we had a full on oral aversion.

The day got worse when they told us the echo results.  They told us at the time she had fluid around her heart and would needs extra meds and some iv diuretics that night.  The extra meds turned out to be 40ml's of chloride, kinda of like salt but not really.   For a girl not drinking anything this seemed monumental.  I hope Olivia can forgive us, but we had to force it down without having her puke.  We flavored the 40mls with coke icee, she drank the first bit.  Then we had to lay her down and hold her head and arms and squirt in 160 ml's of good tasting medicine.  We spaced each 20ml syringe by about 10 or 15 minutes with a twizzler in between.  She gagged and spit a little, even once clenching her teeth and an explosion of medicine hitting melanie in the face and hair (it was pretty funny).   With the forced medicine and juice she had just enough they didn't do the nighttime fluids and they got a pretty good night of sleep.  It was quite a traumatic experience for all of us.  A good night sleep for all 3 of us brought a much better day.

In the future when Olivia reads this, hopefully she can forgive us.  It was quite the battle but it was for her own good.  Now we are getting discharged and just waiting as the minutes tick by.  Our nurse is taking her time but it will come.  We just got her down for a nap, after eating.  She's a new girl today wanting 2 packs of fruit snacks, chips, and she downed 10oz of sprite plus 6oz of juice.  She's a different lady today, and while she has a lot of bad eating/drinking habits now hopefully we'll get her back to normal and just a few snacks and sips of sprite here and there. 

In a nutshell yesterday sucked horribly and we were all at our emotional threshold.  Today was a great reward for the night we had.  Thanks CHOP but we are ready to go!

Post op day 6

     Last night, sweet girl was tossing and turning with nightmares. She finally did settle out and at 0130 woke up begging for juice.
     This morning, she woke up and was ready to eat, drink, and get outta here. She has downed half a sprite, juice pouch, and half a can of pringles. Her labs look much better this am, but her chest x ray doesnt look terribly better. We got the green light for discharge with a follow-up appt on tuesday here with her cardiologist. If her xray and echo look good tuesday then Livi and I will be heading home too. Unfortunately, daddy returns home this Sunday without us, but we know we will be home soon. I included some pictures from the diva lady from this morning.

Tuesday, August 20, 2013

Do not pass go and pay us to make you miserable

Olivia all in all was doing great up to today. This morning she decided she was tired of playing our games and was calling the shots. So she refuses to eat, drink, or take any meds. They did her echo and there seems to be a rather large effusion that they want to treat with another diuretic. The problem is the more diuretics the more her electrolytes get out of wack. You would think that the MDs, PAs, NPs, and RNs would realize this and treat profillatically while they can. But that is not so much the case which then leads to more oral meds that they expect the kids to take orally. I know that the last thing I want to do when I have an upset stomach is pack it full of nasty tasting meds. So now, it has become the fight of the century every time it is time to put anything in her belly. There is no bribing that works, no reasoning that is effective and ultimately had led to a very frustrated mom and dad.

Monday, August 19, 2013

Post op day 4 ... Frustration

The day started off with pulling the chest tube. Yeah!!! Then at rounds they said that there isnt a real need to keep her there if we could increase her fluids she drinks and get all meds to be taken by mouth. Well all you have to say is the discharge word to us and we are all about it. Unfortunately, Olivia doesnt quite understand the motivation we have.
After getting some anti-nausea medicine, Olivia spent the day eating and drinking way better than she did yesterday. Then it all slowed down. Along came dinner and she fought everything. We tried bargaining. No go. We tried being mean. It didn't phase her. She finally decided to get with the program until night time med time. She needed some potassium supplements because of the lasix, but it tastes horrid. We tried mixing it with crush orange drink. She vomited everywhere. After trying two different meds with the same result... We gave up and put her to sleep. If only she understood that taking the small steps led to huge jumps in the end... It would be so much easier.

Try bubble video again

Sunday, August 18, 2013

Olivia blowing bubbles

Private room is nice. Just closed the door and it is quiet

Olivia isn't quite though. She took a lot of juice and smart food popcorn. It's the only thing she would eat. A half hour later she vomited all over the place.

Then after a nap she walked and played in the playroom. Next stop is dinner and then we were cleared to go play in the atrium on the first floor of the hospital.

Moved to step down CCU

She's been doing good. A few wretching and one minor throwing up episode. She's walked twice today and cries, but she is walking. She needed a little motivation because she wasn't eating much so the threat of an ng tube was looming in a day or two. She called her nana, emmy pops and Nathan and delilah who all gave her encouragement to finally eat some apple slices. She ate about 5 slices. Then she got happy and started making apple slice smiles holding it against her lips. She's always trying to be the character.

Eat to go home
Drink to go home
Walk to go home

Are the phrases. I'm reasoning with a 2 year old and maybe she's following. She did start eating. She was fussy and sleepy early today but had fun blowing bubbles and a popping them. It's a happy day.

If she eats drinks and poops, and her drain continues the downward trend she might get her chest tube pulled tomorrow. Then all she will have left is an IV

There was a story from yesterday I wanted to lock away on the blog for olivia. Melanie and I have switched rolls. I'm the drill sergeant and Melanie is the reprieve. A nice drill sergeant. I'm pushing her to eat and drink. One time I lo was like you have to sit up. She whined and wanted to lay down. I said to her drink and lay down or you have to sit up. We fought for a little while and the nurse was right there. I gave in after she got a little more upset still refusing to eat /drink. She lays down and looks at me and said "bad boy," the nurse couldn't stop laughing it was pretty funny.

Saturday, August 17, 2013

Night shift relief

The schedule has currently been that Brett and I are rotating shifts so that someone is here with her at all times. It is hard to think of leaving her all alone because she is very aware of when we aren't there. I have taken on the night shifts and Brett does the days. In a way... I get to be to be the one who comes in and saves the day. Daddy had very high hopes that little Livi would be in an out in a heartbeat. He wants her up, moving, and eating and drinking more so than she is really interested in right now. I am the more... okay well lets take a nap and then maybe drink some juice later type.We have been balancing each other well I guess. A big step today was getting her dressed in her princess pj's and out of the hospital garb... hoping to help her feel more like normal. She took another nap before calling it a night. The night nurse was a little reluctant at first because she has Olivia and one other baby, but papa bear insisted she find someone to watch the other baby so Livi could walk. It was a very brisk walk up and down the halls because Olivia wanted to be done and get back in bed. The nurse was actually kinda surprised at her pace. We will post more in the am... for now good night.

2 hours of normal olivia

She was laughing and joking with the nurses. She finally picked up her harmonica and the nurses would dance whenever she played. She was her usual self. She even had the cahones to tell me I was a "bad boy daddy." o wasn't going to let her lay down until she sipped some juice u finally gave in.

New iv just chilling

Had to get a new iv they pulled the one that was on same side as arterial line because it was bothering her. When they took it out the catheter was 3 inches long going into her vein. No wonder it hurt. The great iv team got it on the other hand first try. Just ate a popsicle but still putting up fight. Still putting out sirrusousy drainage, no chylous yet I think we are in the clear with that. Just hoping for less drainage then yesterday to show a positive trend.

Favorite snack getting away

Just to show ya how motivated she is, here she is eating one of four goldfish it's a battle she's winning a few but we will win the war together. Definitely pushing her harder today.

We were arguing over sitting up or laying down. When I finally gave in She laid down and closed her eyes real tight trying to shew me away with her mind haha. When melanie left to go sleep she gave the cutest kiss all high pitched and squeaky and most of all pitiful. Just a minute ago the nurse was getting a medication ready and she wanted a big hug to get away from it. Emotional roller coaster even for the manliest of men.

Walking walking

She just walked some more. Twice as far as before. She's kind of out of it glazed eyes and no will to grab things or do much with her hands. Definitely not the little girl everybody knows.

She's all about juice out of a adult cup with a straw. Juice has become sprite but at least she is drinking. Not eating much still little bit of a banana. She tore up 1 or 2 smarties. Maybe she'll do a popsicle later. Things are looking better. It just takes time.

One other thing her sats are coming up. After some walking and activity they are 84 room air. They were 78 to 80. She's still draining especially since she's been walking. All the activity is freeing up any last fluid. Tomorrow's xray will be a big indicator of how we'll proceed.

Making strides

This morning she was having some issues with throwing up and wrenching. We've switched around her pain meds to help with itching.

They are trying miralax and glycerine suppositories to get her pooping. Around 9 today she had a gassy poop, but a poop nonetheless. Hopefully the next one will have more content and less gas. She is drinking a little more but still refusing most juice and food. We were able to get 4oz of juice in so far today. She also ate a few bites of an apple slice and a little bit of applesauce. Overall things are happening.

We got her up and put her flashy shoes that light up and she walked to the bridge area about 20 yards. She cried the whole way and looked pitiful but she made it. Our friend from Alabama, Lydia dansby was riding by in a wagon ride and they stopped and looked at each other for awhile. Then she sat in in a wagon and rode around for awhile. It's some great steps we are making. Pooped, peed, walked, sat up. Now we just need to repeat a few times to get discharged. We are still waiting to get rounded on they are going slow

She was definitely tired but the wagon ride was nice and quiet. She's ready to get moving more hopefully. Maybe CCU, step down and the chest tube can come out tomorrow.

Friday, August 16, 2013

Long day

Today has been a long and tiring day. The goal has been progress with some progress a little slower than we would have liked. Olivia did get rid of her fontan line, foley catheter, and arterial line....All great progress. She has not been as interested in juice or food as we would have liked but she got out of the bed and even sat on my lap watching Mickey Mouse for awhile today. They are working out her pain meds as the morphine has made her itch horribly. They will add nubain and toradol as alternatives. Tonight they are talking poop with either an enema or miralax. We shall see...

Still just relaxing with a little progress

She finally drank 2.5 oz of juice still not into eating. Maybe another popsicle or ice cream. I think she just peed all of her labs are normal so the arterial line might be coming out soon. She's gotten a lot of sleep today. Hopefully when she wakes up we can make some progress. She says to her arterial line... Off! She's still kind of itchy too scratching at her eyes. Lots of updates.. When she poops there will be 3 posts dedicated just to that hahaha

Just sleeping

Still just resting. Maybe we are past the morphine we have started oxycodon with a Tylenol suppository. Hopefully she'll get more energy. Problem is she's just not motivated. She's not drinking much or eating. She usually tears up juice Popsicles and goldfish but she's just not into it. With little intake she isn't peeing.. They've given last but 30 minutes later still no pee. First threat now is putting Foley, urine catheter, back in. Then it's fluid later tonight. We came into this hoping to be aggressive with recovery to avoid a lot of fluid issues and extra chest tubes or lung problems. Problem is she is dictating things now so tomorrow will be the day we really start pushing her a lot more. If she doesn't get going tomorrow this will be an long recovery. Good news is the arterial line might be coming out if her labs come back good. So we need herb to wake up drink crazy amounts of juice, eat some more yogurt and sitting up blowing bubbles or playing her harmonica. That's my goals for today/tonight. Walking will hopefully be tomorrow.

Rough day so far

She has eaten yogurt and a cheerio, she's sat up and blew 3 times on her bubble blower.

She isn't very comfortable. As the bowels get moving again she might get better. However she needed more morphine and an anti itch medicine.

She was watching doc mcstuffins but she fell Asleep she's not having the best day ever she finally ate a popsicle. We are trying to sit her up to get bowels going. She needs to take in more fluid as well. Maybe later this evening she'll be be ready to do more. I really want her to get her arterial line out. It really freaks her our

Postop day 1

Last night was rough. Brett and I took turns so that one of us could stay by her side. Olivia would wake up every so often whining and would get morphine and fall off to sleep. We were excited about today because we knew there would be progress.

Progress so far...
- nasal cannula off
- milirnone off
- dex (also known as sedative) off
- chest tube lessening overnight

This morning the surgery pa came to remove her fontan line that went straight to her heart. After she pulled it, there was no external bleeding. The pa stripped her chest tube and bright red blood came dumping out. She put out 150 cc in minutes. The attending and fellow who are caring for her, came to see what was happening and she freaked out with all the facea. Her sats dropped and she was fighting them giving her albumin.

She is now resting after drinking more juice and she did have a few bites of yogurt after sitting up.

The goal for today is to get moving.

Last night went well

Update on olivia... Last night she rested on and off between morphine doses. They turned off the sedative and milronone (heart med). She drank a ton but now has a rock hard belly and it isnt a six pack. She took the nasal cannula off of herself and has held her sats without issue. Hoping to get some lines removed today but we will see.

Thursday, August 15, 2013

Olivia is recovering well

She's doing as good as can be expected. Her sats are riding 88 to 93. Blood pressures have been slowly going up and her heart rate is slowing. She drinking juice like it's going out of style. We are trying to pace her to keep her inputs and outputs equal. The drainage is slowing down. All things are pointing to a great day tomorrow of eating weaning oxygen pulling some tubes out and decreasing meds. So look out for olivia tomorrow.

There are several monsters lurking under the bed that could hold her back but hopefully they don't make an appearance. She could have fluid building up or another bout of chylothorax. We are hoping for steps forward but every hospital stay seems to include a few steps back before we run out the door like a champ.

Congenital heart defects suck so I figured everyone should see what it looks like. She's fighting hard but it's crazy what she has to go through to get there.

Harry Potter

We are in room 405 at the RMH in Camden.  It also is the Harry Potter room. I guess living with Harry isnt as bad as Dora.

Heading to bed soon so we can be ready for our busy day.

Fontan recovery first few hours

We finally got to see her she is pretty stable. She just needed a dose of morphine. Her sats when we got here were 93. Not sure if that will hold but it's first time we've seen 90s. Her first words were apple juice under pretty heavy sedation. It is safe to say she is pretty darn thirsty. They are trying to get her dexmedetomidine, anxiety drug, to the appropriate level. We started at. 25 to 50 now 75. Hopefully this will help her be able to relax and sleep.

Talked to Dr. Spray

Just talked to surgeon... They are done and working on getting her extubated in cicu. She had a ton of scar tissue and will need to watch her fluid on the left side. Cant wait to see her
Just got update,

They are finishing up and making her bed up in the or. Everything went as planned. Next we meet with Dr spray again and then we see olivia.

First update

First update she is on bypass now. All of her Ivs and A-line is in. So they've gotten through all the scar tissue and now they are starting the repair. I expect the next update to be that things are pretty much done and they are closing her. We shall see.

Took awhile with the MRI study

We got to hang out in sprays conference room for a good hour. A CICU nurse accompanies you. Needless to say we really got to know our CICU nurse, and we think we got a good one. Most chop CICU nurses are pretty darn good at what they do. Finally spray came in and confirmed she was getting a extraxardiac fontan with a fenestration. Think of the fenestration like a popoff valve if there is too much pressure. My concerns about the extraxardiac have been put to rest because he uses a good sized adult tube to connect everything. He said she'd never need an upgrade!

Now we are just waiting to hear something. We got to visit with our friends the dansby's who's daughter had her fontan last week. She is looking great and moving to discharge just like olivia will soon. Updates as soon as we hear something from the nurse.

In surgery now

Got to the cpru, cardiac recovery /intake unit, at 5:30. She was happy but as soon as they put the wristband I'd bracelets she was mad about that. Then we took her shoes off and she was even madder. Around 6:10 she got a dose of medazalam, then she calmed down. Then she got good and loopy. Slowly bringing a Dora sticker to her lips and looking spaced out. It was cute and funny. She was finally calmed and when they wheeled her back no tears just smiles as she enjoyed the jokes from the anathesiologists.

Wednesday, August 14, 2013

After much debate about diaper rash

While in preop, they go through all of the routine questions. One of those is does she have any rashes or infections.? Since swimming two weeks ago, Olivia has had a diaper rash we couldn't get rid of. We have tried everything except medicine for yeast. Well today, we wished we had. The PA and nurse practitioner both said it was from yeast. Because of the locale, there was a debate about whether or not Dr. Spray would be okay doing the surgery and putting her at risk for it to spread to her chest incision. After much thought and a few pictures of her bottom on a pass phone, we got the green light for tomorrow. We have to head to CvS to get pedialyte, lot risen, and desitin.
We have to report to CHOP for 5:30am for her MRI and surgery. Another long day in our future.

Got to chop

As a first class passenger we sat behind Jonathan vilma, saints linebacker, who is hurt I suppose. Today is training camp and he's on a plane. Olivia has had a couple of naps and is all energy for her preop.

Probably have ekg, echo, blood work and some other stuff.

Good news is we got a room at the Ronald McDonald house they had someone decide to leave today! Which is great for us. $15 a night and dinner is better then $65 a night at the cherry hill holiday Inn.

And this

The day has come to head to philly for surgery

The wait is over we are heading to philly in an hour. We might of brought a few too many bags because it was going to cost $150 to check them. It was also $200 to upgrade to first class. I said "can I check all of these bags free if we fly first class?" olivia is going to arrive in philly in style, first class all the way.

She's got her banana and her tablet. Hopefully we can run her around enough she will sleep on the plane. Preop is at 2.

Sunday, August 4, 2013

This is commander Nathan speaking and if your wondering my parents are giving me permission to do this.

What Olivia means to me.
Olivia means alot to me. First off I love her. Second off she makes me happy. Next off my  sister will never give up. That motivates me to work hard in everything I do and do the best I can.
I can't get her to shush, she's always making noise but I get over it. She really is a daredevil.
I wish I could be her all daredevil and fun. But then she used to make me worried alot. I never worry anymore because I know she'll always be ready to take on anything. She is the most funny,cute,and persuasive baby I know. Most of all I love her.

Friday, August 2, 2013

So much to do so little time...

   Wow... 13 days and counting until the Fontan. We have so much to do and don't really want to do any of it. We have bags to pack, bills to pay, school supplies to organize, and groceries to buy. Most importantly, we have to make the best of these 13 days. Little livi doesn't even have a clue what is coming and in a way, that in itself, is a blessing. Just telling Nathan and Delilah that she is having surgery and that there are no guarantees was the hardest conversation. Seeing the innocence drip from their eyes and worry replace it, was a heartbreaking necessity, but not something you ever want to see as a parent. We have started to bring in fun new "games" like listen to the boom boom with mommy's stethoscope and at the count of three we all freeze, throw our arms up in the air, and scream "X-RAY".
   We have received wonderful packages in the mail that will make the journey a little more fun and can't thank everyone enough. We have also received a hospital gown for Livi from Gracie's gowns. It is Minnie Mouse... A favorite of Olivias.
    We will also be following some of our fellow heart friends that will be having their Fontans this week and next. We know the support we have from all of our friends and family will also be supporting them as well.
   We will be posting some family pictures soon for all to enjoy.