Time

Jilly is settling into being home very well. She has been quietly playing and asking when she can go see her friends, and smiling and laughing a lot. She seems to be healing well and recovering nicely.

Only time will tell.

The issue of time has taken on a new significance now. When Jilly came home after her second surgery all we could think about was when the third surgery would be. It loomed in front of us. We always felt as if all time was moving toward this spot on the horizon. Runners running a race that we seemed to never be able to finish.

Well we are finished now. Maybe. Noone really knows. People, nice, well-meaning, people say "good, the surgery is behind you, Jilly's fine". Yes, the surgery is behind us. And I certainly hope Jilly will be fine. Only time will tell. It's soon. Monitoring needs to occur, making sure no post-surgery complications arise. Monitoring over months, years - making sure her heart stays strong, things that are not supposed to narrow don't narrow, her body adjusts as it's supposed to to this new circulation.

And now we look toward that horizon and wonder. What is in store for us? What do we race toward next? Will there be future surgeries? It's a wierd feeling. For three years we have lived with this surgery hanging over our heads. And it's gone now. Poof! Gone. Now what?

Now we live with the horizon wide open to so many possibilities. We make plans to go to Yosemite now that she can travel into higher altitudes. We can go to our cabin, the cabin that I have not been to in over 3 years. With Jilly. We live without any knowledge of future surgeries, but tucking that possibility into the back of our minds. We wake up every morning with a body full of gratitude that we are all here, happy and generally healthy. And hope that the other shoe does not drop.

Time. It's a wierd thing. I spend a lot of time worrying, feeling guilty, worrying, and then worrying some more. But all that time I spend worrying and wasting away time that I could be doing something more constructive, I can't get that time back. It's gone. Now that her surgery is over time is on my side. Whether that time be a small amount of time or a large amount of time, it's my time with Jilly. And I don't want to waste it worrying.

I have learned more in the past several weeks and over the past three years that I have learned in a lifetime. I feel as though I have aged several decades. I feel as though I have fought an uphill battle, and I'm weary. Noone should have to see their child go through the things we have had to witness Jilly go through. And my hope is that time will be kind to her. Time will allow her physical pain as well as her mental pain to diminish. Time will allow her to grow stronger, grow fatter, just grow. For all that she has experienced in her short three years, she deserves that and much more.

Only time will tell what is in the future for Jilly and for my family. But I am hopeful that all that I have learned allows me to appreciate this time and those who read this blog and who know my family to also learn from our experiences, and your own life experiences, and appreciate your gift of time as well.

Home

We are home!!!!!
Dr. Karl is the man. He came in about 7:45 this morning - asked how much her drain had put out - I told him - he said don't worry - he'll make sure it is taken out (obviously he was not the surgeon I was referring to in my previous post). She had the side chest tube pulled, had some discharge work-ups and we were out of there.

She is a little out of sorts but that is to be expected. She has some doctor appts. this week so Russ and I will be shuttling her about town and getting the medicine regime under control.

Thanks for all of the support and encouragement.

One drain down

They removed her middle drain today and her pacer wires. Yeah! Her side drain continues to trickle just enough for them to not want to pull it. I have to thank the doctor today who spared with the surgeon advocating pulling her middle drain that has not been draining for a few days. He (the surgeon) said it was not hurting her, it was just psychological. So I guess psychological pain is better than physical pain. AFter a few words he quietly came and pulled the drain. Now if the other drain would just stop trickling. Jilly is in good spirits. She has been walking all over the place, even with a drain and me carrying a drainage box. So it could be a few more days, only time will tell.

Arghh!!

Well the tubes are not coming out today - she is a few cc's above their standard guideline. I did tell the surgeon (not Dr. Karl) that if they have a guideline have everyone say it like their mantra and stop telling me the next day is the day the tubes are getting pulled. He said if the trend continues downward (fluid) he'll pull them tomorrow and we'll be discharged Tuesday. Again, I am not holding my breath.

This is what I woke up to today:

Birthday Celebration

Happy Birthday Jilly!!!I was worried about how Jilly would respond to celebrating her birthday at the hospital but as soon as her sisters got there it was the happiest I have seen her since her surgery. She sang happy birthday to herself, squeeled with each present and played with her toys. She especially liked having lunch with her whole family there. She kept looking around the room and smiling because every one was there.



I think her birthday celebration was a success. She will have a bigger one when she gets home. There's a rumor that her both chest tubes are going to be pulled tomorrow and that they will only keep her for another day afterward. I won't hold my breath but I'm hopeful for a Tuesday morning discharge.

Wagon Rides

Jilly is up and about today - sitting up in bed:

And taking a wagon ride:

Thank you's and today's update

I wanted to take the time to send out some thank you's that are much deserved. During this time we have experienced some great displays of the power of family and friendship and the kindness of collegues, strangers and acquaintences.

Thank you to the my sister who calls me at the same time every day, even when I don't answer my phone, but keeps calling just to ask how I am.

Thank you to Russ' sister who took the time out of her busy schedule to drive all the way to S.F. to visit Jilly.

Thank you to Russ' mom who lives far away and due to circumstances beyond her control can't be here but let's us know all the time how much she cares.

Thank you to Russ' grandmother who rode shotgun with Russ and the girls to visit Jilly and who would have hitchhiked her way to S.F if she could not have found a ride, just to visit her great-granddaughter.

Thank you to my close friend Lisa, who in the midst of planning a wedding, calls me and leaves whacky messages to make me smile and to her brother, who Russ and I have only met once, who made his way over to the hospital just to offer Russ some company. And to Jamie who makes me remember to laugh.

Thank you to Russ' friends Rick and Chris who call him to check on him.

Thank you to everyone who has offered to help out in anyway that they can. the Sobelman's, the Greiss', the Kernen's, the Stewart's, Haley's soccer coach just to name but a few and the list could go on and on. And to the Jones' and the Burkhart's who took a weight off my shoulders by taking care of my older girls.

Thank you to Jilly's pre-school teachers, Lisa and Alicia, who left Elk Grove after a day of working and drove all the way to S.F. to see Jilly - you were the first two people who made her happy after her surgery.

Thank you to the mom's at Jilly's preschool who read this blog and saw that there were some things I needed and who gave Jilly a bag full of summer clothes and toys for her hospital stay. That was such a kind and thoughtful thing to do and I so much appreciated it.

Thank you to all the heart mom's who leave comments and emails, some of whom I have never met, but who do not hesitate to offer the support and encouragement I need.

Thank you to Russ' math department who gave him gas, meal and coffee cards and a special Toys R US card for Jilly. Your generosity and support of Russ and our family is incredible.

Thank you to my counseling department for taking on my caseload and taking care of testing so I have no worries. (not that I would have worried anyway:O )

Thank you to all of our co-workers at both Pleasant Grove High School and Elk Grove High School who quietly support us through prayer, good thoughts, and positive energy.

Thank you to the tractor guy who mowed our pastures and took the time out to call and ask about Jilly.

And thank you to anyone I may have left out - you are not forgotten. All the support we get is incredibly kind and very much appreciated.

And for today's update:

She is off oxygen. She only has one line in her arm for blood draws. All her meds are orally now. She is on the step down unit in her own room. She put weight on her legs for the first time today and was not to pleased with the experience. She continues to have some drainage out of her chest tubes and is still on diuretics to help this. We now have to keep track of input vs. output. If she does not drink enough and pees too much she can become dehydrated and suffer low blood pressure. She basically will turn into a raisin - not good. Her eyes are already very sunken, we don't want her to shrivel up. She is eating, like a bird, but eating. They are talking about pulling one of her chest tubes tomorrow. One of the NP's told Russ that it might not be until next Weds. before Jilly is sent home. That is discouraging but I believe she is being conservative in her estimation. And then again, it all depends on who Russ asks tomorrow what their opinion will be. I have a feeling that we will be in the hospital for Jilly's birthday on Saturday:(

Today's Update

Today has been a great day for Jilly. She is still in the PCICU. There had been talk of moving her to the step down but there was a code and it sounds as if it was pretty hectic - so she stayed on the unit. She had an IV removed from her left arm, which is good because it was really bothering her. They took the high flow nasal canula off and will probably take her off oxygen for good tomorrow morning. She had an xray of her belly yesterday morning and it showed that her gut was full of poop - which is why she kept complaining of a stomach ache. So she was given some stool softners and that issue has resolved itself. She now feels much better, is eating better and seems much happier. She has been sitting up in bed most of the day playing with her toys and coloring. She is much more animated and the language issues of a few days ago appear to have resolved themself as well. Her drains are still draining but much less.

No talk of home yet but I think if things continue on this path it won't be long.

Gifts

I am home today and have a thousand things I should be doing but instead I sit with my thoughts. There have been many of those thoughts swirling in my head over the last week.

An amazing thing happened the night before Jilly's surgery. I have been searching for some clarity in a life filled with unanswered questions and unknowns. The amazing thing was this clarity came in a conversation with Dr. Karl and his whole attitude toward children like Jilly with complex heart conditions. Dr. Karl has always been a man of few words in my interactions with him. But he seems to have a fondness for Jilly and always lingers a little longer interacting with her. We sat and talked about the surgery, outcomes, etc. etc. We discussed long term prognosis, of which there really isn't any and the possibility of transplant. But as we were pondering the what ifs he stopped and said for Jilly's set of problems...."the fontan is the best we have". He went on to discuss where the Fontan has come in the past 10 years and what he hopes for in the next 10. And we have always known that if Jilly was born 10, 15, 20 years earlier the Fontan was not the best "we have". Paraphrasing Dr. Karl, his point was the Fontan surgery gives us, as he calls her...glamorous, gorgeous Jilly. It's not the best. The best would be to "fix" her heart. But it is all that is available to us. And in that moment I had clarity.

The clarity is that what we are experiencing is what it is. I can't change it.
What we are experiencing, the surgery itself, is palliative. That means prolonging the inevitable. So instead of looking at palliative angrily and feeling like I'm waiting for death, the clarity has become to look at palliative as a gift. The fontan is the best "we have" loosely translates to the Fontan is giving me a gift. The gift of time. Instead of defining palliative as prolonging the inevitable, which sounds so morbid, I am choosing to define palliative as giving a gift of time. Time that I now have with Jilly, that if the three-staged surgery did not exist, I would not have.

The clarity is that medicine is not an exact science. There are many unknowns. We, as a society, are used to things being fixed. Got a headache? Take a pill. Break a leg? Get it casted. Have gallstones? Have a surgery. We don't like hearing "I don't know". But I have learned that there are many things medicine has not figured out. That doctors don't know everything. That there are some things that can't be cured. Cancer, MS, Parkinson's, and some complex heart defects. And even though I hate hearing a doctor telling me they don't know why her bulb chest tube was full of blood, I understand. The human body is still a mystery to medicine. Complex congenital heart defects are still a mystery. But there is progress. The surgeries of today have evolved over the past 15-20 years. That is a very short period of time in relation to how long medicine and doctors have been around.

The clarity is that I am not angry at what life has thrown my way. I don't want to be angry and I haven't been angry in a long time. Do I get angry at doctors and nurses? Yes, they irritate me sometimes. But I am referring to Jilly's medical problem and what medicine has to offer her. I am sad, there are times I am frustrated, scared, overwhelmed. And if the inevitable happens to Jilly I will be devastated, but not angry. Because I have realized that her doctors have done the best that they can with what they have. And understanding that allowed me to let go of any anger I had. This, of course, is not to say I won't ever question doctors or be an advocate for my child when I feel her care is being compromised, because I will. I am only referring to the options that are available to us. Over the past week I have overheard doctors discussing her case with other doctors. And what I have heard time and again is how close to death Jilly was after her first surgery. I knew this. But hearing doctors talking about it just reaffirms to me what an extradinary gift I have been given.

And with this clarity comes the ability to cherish and appreciate this gift I have been given. It's not easy. When things at the hospital go bad my ability to appreciate the gift wavers, the anger and despair try to pull me down. I know that when she comes home I will fight with the despair I have felt so that I can remain appreciative and positive. I have to. Because life is a blessing. Jilly is a gift.

Better

Things are better today. The chest tube that was draining blood is no longer draining much of anything. The thought is that there was some blood from the surgery that the body decided to dump out. The chest tube on her side is draining significantly less. Her heart rate is better. She is still on the high flow nasula canala that gives a positive breath so it makes her lungs expand. But she is breathing much better. Neurology evaluated her today, and while there was some talk about a possible stroke to her language area of her brain, they have come to the conclusion that she is dealing with a lot of stress and just having great difficulty expressing that stress. An MRI was ordered but after the head neurologist talked with her he felt that it was unlikely that she had a stroke - so not sure if they are going to do an MRI or not - probably not though. The plan is that if she continues on this road she will go back to the step down unit tomorrow.

After three days with me she was ready for me to leave and daddy to stay. She had gotten to the point where she was not talking for me and not eating much of anything. She even got so frustrated with me yesterday because I was not correctly deciphering her grunts that she tried to slap me. But she has been much better since I left her with Russ. He was able to get her to eat a little and he said he's gotten a few smiles out of her and she is talking more with him. She did this with him after he had been there for a few days and then perked up when I came. I think she is just so stressed and depressed she takes it out on those she knows and trusts.

Simon says

.....two steps forward, one giant step back. Jilly was moved back to the PCICU unit this morning. After having a good day things went south about 3am this morning. Her bulb chest tube starting draining what looked like bright, red blood. Her heart rate was higher, her oxygen levels lower and she was working harder to breath. Her other chest tube is still pulling A LOT of fluid out. She is now on a high flow nasal canula which she keeps telling me to turn off. The chest tube in question is draining less but they still don't know what it is. They did an echo and it showed good heart funtion with no fluid around the heart, what a relief. Her diaphram appears not to be cut (paralyzed) but just traumatized from the surgery, which makes it harder for her to breath and expand her lungs. I am waiting for the surgeon to look at her echo and make some decisions about what was draining out of that tube and what to do about it. Jilly does not want to eat now and is less communicative than she was yesterday. She is also having a really hard time expressing herself. She tries to say what she wants but it's like she can't find the words. She then gets frustrated and turns away. I worry it's neurological but the nurses tell me it's the drugs - noone knows for sure - could be a lot of different things.

So that is where we are now. I am sure Russ appreciated the call this morning and all he could hear was me crying. I guess this past week has taken its toll on me emotionally and physically. So when things appear to be going bad it's all I can do to hold it together and even talk to the doctors. I'll update more when I know more.

Visitors

Today was a good day for Ms. Jilly. She was so excited that her big sisters and her great grandma Lucy were coming to see her that when they finally got there she started crying.
Here is Jilly and Mikayla down front and Haley on the side:

Of course mommy had to get a picture with her finally smiling:
And here's Great Grandma Lucy who read to Jilly and fed her lunch:

And if all that wasn't enough Auntie Nicole came to visit too and brought presents!


Jilly is being moved to the step down unit later today. She is doing better every day. There is still some concern that her diaphram is paralyzed but they are not going to tack it down. Instead it lets them know why her oxygen levels are a little lower than anticipated and eventually the diaphram will move when her lungs start expanding. She finally smiled today and is talking. We'll see what happens when everyone leaves and she's left with just mom.

What a Difference a Day Makes

I am so glad to be back with my JIlly. She is doing really well. The bloating in her stomach is getting better. They removed two chest tubes and an arterial line today. She sat up in a chair for an hour and a half. I was able to get her to eat some jello, soup, drink a carton of milk and some juice. She is having some difficulty with the pooping process but other than that she has been a cooperative little girl today. The only bad part is that she is very sad and won't talk to me. She has said a few things but she is very quiet and tends to not want to look at me. I know this is part of the whole ordeal and I knew it would happen but I hate seeing her so sad.

Her sisters are coming to visit her tomorrow and her Auntie Nicole. She said she will be happy when Cocoa (Mikayla) and Haley come see her. Hopefully their visit will perk her up.

And Today's Forecast...

Another uneventful day, which I guess is a good thing. She slept most of the day. They have cut back on her drugs so that she can become more alert and start moving around. She had an ultrasound to look at her lung function and it appears that she has a partially collapsed lung and they think her other diaphram might be paralyzed. They want to wait until she gets rid of some more fluid so they can see more clearly before coming to any conclusions and intervening. She ate a few bites of jello and is taking her tylenol by mouth a little bit better. Russ said she was watching Lilo and Stitch and smiled and let out a little giggle then went back to her straight face. He said it was nice to see her smile even if only for a minute. The nurses tried to get her sitting up but she literally screamed in pain. While they were moving her the chest tube in her side dumped out a lot of fluid. So they gave her some pain medicine and she went back to sleep. She has been coughing a lot and that is good as it gets her lungs to expand. Overall the doctors are still very pleased with her progress. Her abdomen is a little softer today so maybe some fluid is finally coming off.

I will be going back tomorrow after I drop the girls off at school. It's been hard being away from her and I feel extremely guilty but it has also been nice to spend time with the older girls and be away from the hospital. That place can be really depressing and after 2 code blues, one that woke me up in the middle of the night to make sure it wasn't Jilly's room being announced over the loud speakers, and 2 deaths on the 6th floor I was more than ready to get some sunshine. And have I mentioned that I hate the weather in San Francisco?

Today's Update

Today's update comes to you from me...at home. I came home today after much deliberation with Russ. The girls have been very home sick so we decided since Jilly is stable to have me come home to stay the night with them and tomorrow. Then I'll go back up and Russ will come home and bring them back on Saturday. We have now officially started our tag-team.

Jilly had a quiet night until about 4am. She was in some extreme pain and the Morphine was just not getting the job done. Her belly is still extremely swollen and she was just plain miserable. So some things that happened today:

*she was switched to a different narcotic that has seemed to do a good job keeping ahead of the pain - she is resting much more comfortably and moaning much less
*her foley catheter was removed
*her diuretics were increased to try and remove all that fluid in her belly. We have been told to be patient with this as it takes time and they don't want to do anything radical at this point
*she was moved around some but was not happy about this - she was not made to sit up as she was in too much pain
*she had some respiratory therapy today to try and get her lungs expanded

Overall her heart rate and blood pressures are great. She has been sweating on her forehead but nobody seems to know what this is from and at this point nobody seems concerned. She is very mad at me because I tricked her twice to get some tylenol into her mouth. Before I left she told me to go away and that she was mad at me. But when I said I love you she said "I love you too....go!"

The doctors continue to be pleased with her progress...it's just slow progress.

And the best thing for Jilly today is her teachers from her pre-school came to visit, Alicia and Lisa. I had already gone home but Russ said she perked up when she heard their voices and was happy to see them. Unfortunately she got some more drugs during their visit so slept most of the time but it was definately a visit that she was glad to have.

Evening update

It was an uneventful day today - I hope I am not posting too soon but I am tired and I am going to try and get some sleep tonight.

Her heart rate, blood pressures and oxygen levels have all been really good today. She has a lot of fluid output through her chest tube that they added today but that is a good thing. Her belly is still distended but her stomach is full of fluid - they say the gut is one of the last things to wake up and start working after surgery so we are waiting for that to resolve itself. She has slept most of the day with some good drugs to keep the pain at bay. When she wakes up she is very cranky and only wants a drink - if we don't give it to her she gets mad and closes her eyes. But she says please and thank you to the nurses in the most pathetic voice. She wakes up at times and watches Dora and trys to sing with her, gets tired and goes back to sleep. They have had her blow bubbles when she does wake up to try and move her lungs. Because her right diaphram was paralyzed in her first surgery they want to make sure they get her lungs moving so that she takes deep breaths and moves the oxygen around her body. One of the doctors came in before I came to use the computer and he said all things look good, everything is going in the right direction. Her oxygen levels have been hovering in the low 80s - he said because of the AVM in her lung it may take anywhere from 6-9 months for those to resolve themselves and her oxygen levels will slowly creep up as her body adjusts.

So everything is moving in the right direction at this point. Of course she remains in a critical phase and we hope the night is quiet. THey plan to get her up in a chair in the morning and work on moving her lungs. I'm sure she will be very unhappy about that but it will be good for her.

The Rollercoaster Ride Begins

Jilly had a great night until about 2am. She was in a lot of pain, very combative, tugging at her nasal canala and her tubes. She was turning purple very quickly and was having a very hard time breathing, heart rate was racing. She would tire herself out and go back to sleep but it was apparant that something was wrong. Around 7:30 this morning they put in another chest tube in her side to drain fluid that was accumulating behind her lung. It drained out 250ccs. That is like pouring a can of soda into your chest cavity and then trying to breath. THey almost put the breathing tube back in because they had to sedate her and if she is too sedated she won't breath on her own. But they were able to avoid that - yeah! She is doing much better but still uncomfortable. Anytime that she is awake she cries for water. But she can't have much because her belly is very distended. They say that is from the anesthesia and she just has a ton of air in her belly. It was thought that she would throw it up but she hasn't. So I don't know what they will about that. Otherwise her heart rate and blood pressure are much better. Her oxygen levels have been up and down from 85-92 (normal is 97-100 and her levels before the surgery were in the low 70s)

It's still a critical time and they continue to monitor her very closely. She is in the pediatric cardiac intensive care unit on the 7th floor where she is getting 1:1 nursing. I am hopeful that the rest of the day is uneventful as Russ and I got very little sleep last night.

Quick Update

Jilly is off the vent and breathing on her own. She is on oxygen but is tolerating being off the vent well. Her heart rate was really high earlier this evening and there was some concern but it has come down to an acceptable level. Her blood pressure is good. She has woken up several times in extreme pain and they have given her some morphine, which has helped. The only other thing she is saying is drink - can't have one yet - and up please - and is not very happy that we can't pick her up. Her blood sugar is very high and they will be giving her some insulin soon. This is her bodies response to the new circulation and we are told this should clear up and the insulin will not be a long term thing.

Again, we have been warned of the ups and downs. So far things are going ok. It's so hard to see her in so much pain and not be able to do anything about it. We have been so lucky to have nurses who worked with Jilly when she was here before. Actually her night nurse was one of our favorites and cried when she came in to the room and saw how much Jilly had grown. And our nurse tomorrow was our absolute favorite who had moved away and is now back - we are very excited to see her. These ladies saw us through the worst and it is comforting to have them taking care of her again. Some of the worries I had before about what kind of environment was waiting for us here have been put to rest. It's the same caring place we remember. The care Jilly is getting right now is the best. She is being such a brave little girl. Hopefullly the rest of the night is uneventful.

She's out of surgery

Jilly came to the ICU about 1:30. She is doing ok - they are just working to stabilize everything. Dr. Karl said everything went as planned and the next 24 hours are the critical period. She is fighting the drugs and keeps trying to pull out her breathing tube and opens her eyes when she hears Russ or I talking.

Not much to report at this time. She has 3 chest tubes, pacer wires, arterial lines and IV lines plus the breathing tube so she is a mess of wires and tubes. The nurses say at this point her heart rate and blood pressures look good.

I talked with Haley and Mikayla and they both are having a hard time worrying about their baby sister and missing Russ and I. For those of you reading this who come into contact with them at school or wherever please give them a big kiss and hug for me - I'm missing them too and it makes me really sad that I can't be there to comfort them.

We'll update later tonight.

A Funny Thing Happened on the way to surgery....

Some doctors just came in to let us know that Jilly's surgery got started later than anticipated so they think she'll be done around 3pm. Two things were funny about this - one funny haha the other funny ironic after my heart started beating again.

We figured surgery was starting late because while we were in the cafeteria eating breakfast Dr. Karl came through to get something to eat. That was about 8:30am. We figured it was a good idea that he was getting some brain food - don't want a surgeon operating on an empty stomach.

The other not so funny but more deja vu - Ian, one of the doctors on the ICU, came in. He is the same doctor who came and got us mid way through the first surgery to tell us that they could not correct her defects. I associate him with bad news. I told him unless he had something good to say he needed to go away. He said she is doing fine - just wanted to let us know not to expect her up on the unit until this afternoon.

She's in Surgery

Jilly went off to surgery aroud 7:15am. Dr. Karl anticipates the surgery taking about 4 hours. She was such a good girl this morning too. Drank her drug cocktail and went off to loopy land watching cartoons. She will get her IV after she is asleep, which is a good thing and one less traumatic event. The drugs they give her also act as an amnesiac so she won't remember a lot of what takes place today - another good thing.

Even after giving her over to surgeons twice before it never gets any easier. This time around we feel so guilty. She is feeling fine, playing, having a great time being the center of attention. She gets some good drugs and then she is going to wake up feeling like crap and I am sure will be angry with us. But what is so wonderful is that Jilly has Queen status at UCSF. Everyone is so happy to see her and stopped by to see what a big girl she is grown into. Dr. Karl visited us last night around 9:30pm and was so happy to see Jilly. It makes us feel like we are getting personalized care and that he and the other staff genuinely care about her. And that is comforting. Dr. Karl even left her room last night and said "Chao Baby" and if you know Dr. Karl you know that he is a very proper man of few words so it made us giggle.

We are just hanging around now waiting for the surgery to end. I am actively advocating for parents to also get the "cocktail" that Jilly got before drifting off to loopy land. I think it would make the wait so much easier:)

Will update when we can - the computer situation here stinks.

We are Here

We are here - arrived about 9:45. She is in a bed on 6 Long - cardiac is usually on 7 north but they are doing construction. She is in her own room. It is very slow here so she has been the Queen Bee. She had an echo, EKG, blood drawn and did fine through all of them. She spent time with the Child Life Specialist helping her with what is going to happen tomorrow and she enjoyed her time with the specialist. She has been watching cartoons, coloring and playing with her toys. She has been such a good girl today.

Since it is so quiet around here Russ and I will both be sleeping in her room with her tonight. She is the only surgical case tomorrow so should be going into surgery around 7am.

We will post updates as we are able to throughout tomorrow.

Updates

Well the days are ticking down and Monday is 2 days away. I have had this week to stay home with Jilly and get things done before we leave for San Francisco. So I looked back over my list of things to do and found that the big things, like cleaning out the fridge, finishing the painting in my room, yard work, those things did not get done. But what did get done is much more important.

I listed those things that did get done and here is what I came up with:
Number of popsicles eaten: 6


The number of bubbles blown: thousands
The amount of flowers collected: 20
The number of times I was Captain Hook and she was Peter Pan: 7 (I never get to be Peter Pan)
The number of books read: 100s (I lost count and when I could not read anymore she took to the comics)
The number of times I got the "look": too many to count
Ok, that does not really count as "doing" something but it was usually in response to when I was not doing whatever it was I was supposed to be doing fast enough.


We have a lot to do between now and Sunday when we leave. We are visiting the grandparents tonight. We have soccer all day Saturday and then the older girls are being dropped of at their respective retreats. We will be leaving early Sunday morning as her check in time at UCSF is 9:30am. She will be getting her pre-op stuff done Sunday, we will be meeting with Dr. Karl and getting settled in. We are not sure what time her surgery is Monday morning but I would expect it to be early. We will start posting updates on Sunday to keep you informed. We can use our cell phones in the hospital so if you need to contact us you can. Monday we probably won't be answering them though until after she is out of surgery.

And our hope is that this shirt will tell it all after her surgery - (in case you can't read it the shirt says "don't be blue").


Keep Jilly in your thoughts and prayers, keep fingers and toes crossed and send us all the good vibes that you can.

What Can You Do?

I have been thinking back to our time in the hospital 3 years ago. It seems like a lifetime ago. I remember being in shock upon arriving and entering this strange new world. On the pediatric cardiac intensive care unit (PCICU) there were parents, many parents...parents also in shock. But there were parents who had already been traveling down this road and were surviving. There were even smiles, sometimes laughter. Even for those parents camped out next to their babies bed, who had not had a good nights sleep since their baby was born, who had not eaten a decent meal in days, some who had not even left their babies bedside to shower. Parents who were back on the unit with their heart child for the 3rd, 4th, 10th time and went back into hospital mode as if it were no big deal. Life was continuing on.

Walking in the hallways on the 6th floor was even more surreal. That is the floor where the kids with cancer are. Some who had lived their whole life in the hospital, or more days than not. And I watched parents wheel their kids in wagons to the play room. Watched parents walk slowly down hallways with children attached to an IV poles. And again I was witness to life moving on in the face of extreme heartache. Watched people whose hearts were breaking but kept a smile on their face for the kids. It was hard for me. I could not smile. I could barely speak coherent thoughts...and I often found myself wondering what the hell these people were smiling about.

When I think back to those three months we spent in the hospital there are little snippets of moments that I wonder how I made it through. The memories are sad and painful. Memories of being told mid-surgery that Jilly's defects could not be corrected. Memories of watching doctors and nurses work on her to save her life. Memories of sobbing to nurses and doctors to stop hurting her and let her have peace. But most of all memories of feeling like we were never going to take her home.

Somebody asked me recently how we did it. How Russ and I made it through those three months. That's a memory that I honestly don't have. I don't know how we made it through. We just did. We leaned on each other. We relied on friends and family. We learned how to ask for help and to recieve it graciously. And eventually we learned how to smile in the face of all the heartache.

As Monday approaches I am filled with dread and anxiety. The memories from those three months at UCSF haunt me. We are planning for a week stay but have left those plans open-ended, just in case. I try to stay positive, try not to think about the what-ifs, and I try to smile in the face of my breaking heart if for nothing else than for my Jilly and the brave, trusting little girl that she is.

People continually ask me if there is anything we need, what can they do? The basics are covered and we will certainly ask for more as needed having learned the first time around that we have wonderful friends and we live in a wonderful community filled with unselfish and wonderful people. But if you are reading this and are still feeling like you want/need to do something, this is what you can do.................hold your children a little tighter and a little longer, kiss your husband/wife, love your families fiercly and with no fear and go to sleep at night knowing that you lived your life to the fullest today.

Good News

I love it when I come home and there is an unexpected message on the answering machine that makes me excited or makes me smile or even makes me cry tears of happiness. A long lost friend calls. Somebody I miss is coming to visit. I am the winner of a trip to Hawaii....ok, I'm still waiting for that unexpected message.

Today, when Russ got home, there was a very unexpected message left by Jilly's cardiologist. A message we were not expecting at all. Now, mind you, I was home all day and did not leave until 5pm to take Haley to soccer. Of course she calls as soon as I leave.

The message?

Are you ready?

Dr. Karl is going to perform Jilly's surgery! He is operating again at UCSF. She called to tell us that he is going to operate on her and wanted to tell us before UCSF calls. Did you get that? Dr. Karl is going to operate on Jilly!!!

If you remember we were thrown for a loop a few weeks ago when we found out that Dr. Karl was not performing surgeries at UCSF. This news could not come at a better time. I am starting to feel the stress of waiting, anticipating this surgery for the past several weeks. This kind of waiting can take a toll on one physically and mentally. So this was a very unexpected but much appreciated piece of news. I am sure another surgeon would have been fine but Dr. Karl knows Jilly. He cares about Jilly. And we hold him in a very special and dear part of our hearts.

Yeah:)

Early Birthday Celebration

Friday was Jilly's last day at preschool until August. So her friends decided to celebrate her birthday early since she won't be there for her actual birthday at the end of May.
Here are all her friends:


Jilly was so excited, can you tell?


And here is Jilly making her silly face:


And here are the people who get to love her when I'm not with her.
Michelle
Alicia
And Lisa
And today when Jilly and I went to get coffee and she asked why she wasn't at school, I told her she gets to spend the day with Mommy and she crumpled to the ground in a fit of despair, moaning "but I want to go to school and see my guys!". I guess I'm just chopped liver.

Quicksand

Lately I have felt as if the ground beneath me keeps shifting and moving. Just when I think I have found a safe spot that I can ground myself on, the earth seems to be opening up to swallow me. It's not just a physical sensation but mental as well. My thoughts seem to be stuck in muck too. They go from rational to irrational to happy to melancholy to dark and morbid and then rest somewhere in the middle of all this, something similar, I assume, to being mind-numbingly high - which I am not but might help me get through this.

Of course this quicksand has to do with Jilly and the upcoming surgery. But it also has to do with the future, with the unknown, the unkown is the part that is driving me crazy. I know that there are no guarantees in life, that any of our circumstances here on earth could change at any moment. But it is the knowledge that I have that, more than likely, I will loose Jilly in my lifetime. I don't have that knowledge with my other girls or with Russ....those are unknowns. With Jilly I can be pretty certain that she will have struggles related to her heart. I hope those struggles are many, many, many years down the road after she has lived a full and satisfying life, but I don't know that.

I have a friend who I miss very much (Hi R.). She cries very easily (sorry R.). She always has. But one year she lost her baby to SIDS. Out of the blue, no warning, no time to say good-bye. Just like that her life changed forever. And she had no time to prepare for it. She cried a lot after that, I'm sure she still does. Because it hurts to loose your child. It's not supposed to happen that way. And I asked her once after Jilly was born which is worse: Not knowing that your will loose your baby and living your life unaware, happily going about your job of living life....or knowing that you will possibly loose your child sometime in the future, knowing that your child has a heart defect that can't be corrected and will shorten their lifetime? Of course it is a rhetorical question because there's no answer. Except that if I did not know this about Jilly maybe I would be less anxious, less afraid, less inclined to cry when I watch her sleeping at night. The flip side? Knowing this about Jilly allows me to wake up every morning and smother her in kisses and thank God that I have her for another day. Allows me to stop sweating the small stuff and let her pour the container of bubbles in to her lap, run around the front yard in her panties and not worry about what the neighbors think, wear slippers to the store with chocolate gleefully smeared all over her face. It challenges me to be a better person, mother, wife.

This morning Jilly and I stopped for coffee. We sat in the recliners in the coffee shop and talked about the dentist. Music was playing and whenever music is playing Jilly will start bopping her head to the beat. I told her she should get up and dance. There were four police officers across the shop talking. She looked at them and said "no mommy, people will laugh at me". I don't know where this came from but it made me giggle to hear an almost three year old say this so seriously. But it also made me sad for a minute. She's too young to already start caring what other people think. Life is too short to worry about people laughing at you. Having Jilly in my life has allowed me to worry less about this too. So we danced together out the door.

This feeling of shifting sand reminded me of an Oprah quote someone gave to me after Jilly's first surgery:

When we feel the ground beneath us shifting, we panic.
We forget everything we know and allow fear to freeze us.
What I know for sure is that the only way to endure the quake is to
adjust your stance......
These experiences are really gifts that force us to step to the right
or left in search of a new center of gravity.
Don't fight them.
Just find a different way to stand.
When you feel the earth moving, bring yourself back to the now.
In this moment, you have survived.

And we will.