So we got home last night around 6:30.  Zoe did great.  her cardiac cath took around 2 hours.  She came out of anesethia great, a little groggy and cranky but not needing much oxygen at all.  I got to go back to the recovery room with her because she was so upset- probably due to the tubes and moniters attatched to her.  She settled down enough to get moved to the outpatient recovery room where Jason and I sat with her for the next four hours.  She did great off oxygen for a while but towards the end of the afternoon she started to get a bit blue so we put her on a whiff of O2 for the ride home and the night.  She is still on it this morning and proably will be for a few days.  She's never had surgery before when she wasn't on O2 and I think she is still delicate enough that she need a bit of support- especially when she is so exhausted.  She was back to her happy, chatty self for the car ride home.  The most exciting part of the car trip home was that we stopped to get some dinner at McDonalds and Zoe sucked/ mauled french friesin her mouth for the next hour or so-- SOOOO Exciting!  I told her I'd go get her feench fries every day as long as she'll put them in her mouth.

The results of her cardiac cath were pretty much as expected.  Her lung pressures are still in the 70's (normal is 30's).  The blood flow between the upper chambers of her heart is only going one direction through the home in her heart- this is good- it means pressures are decreasing enough that blood flow is more effective.  Her lungs also responded well to O2 and Nitric gas which means that they are still growing and able to expand.  There was talk about potentially closing the ASD (upper hole in her heart) but they decided not to because for right now it is still helping her.  She also has a shunt right outside of her heart (PDA) that is largerthan was originally thought and might be contributing to the hypertension, so now her cardiologist is thinking about closing that off and seeing if that might help lower lung pressures.  We won't know for a few months what the desicion on that will be, but it should be another procedure that can be done through a cardiac cath, not open heart surgery.  We'll keep you posted.    

Zoe's doing good today, still abit sleepy and snuggly, but nothing wrong with that.  She has to be a bit careful for a day or so about too much activity so Zoe and I are going to have a movie day and chill out on the couch- YEAH!  Thank you so much for all the well wishes sent our way, we appreciate them so much.  Zoe never ceases to amaze us with her strength and will to live.

waiting for surgery




French fries are yummy!!!!

Zoe has her cardiac Catheterization today.  We got up super early to be on the 5:20 boat.  Zoe is such a trooper though, no complaints just lots of cute smiles.  Check in took a few hours and then I got to walk back to the operating room with her since she was looking a  bit terrified.  They put her out in a few seconds and then kicked me out of the room.  Jason and i are now waiting anziously to find out how it goes, hopefully zoe will do great and not need any further oxygen after it's over.  She should be done around noon, and I'll post some results when I get a chance.  I think this surgery is harder than ony other one we have had to send her off to.  For her other ones, she was sick and it was something that needed to happen.  This one is just routine and something about sending a perfectly healthy kid into surgery is really frightening.  They are checking her lung pressures and the hole in her heart to see how her pulmomary hypertension is resolving.  Send Zoe lots of prayers and we'll let you know how it goes.

I forgot to mention in my post yesterday about our exciting happenings last week with Zoe.  On Wednesday night we did Zoe's flolan medicine as usual like we have for almost a year now and tucked her in to bed.  We checked on her a few times and she looked great.  At around 10:30 we peeked in again before we went to bed and I noticed that her whole PJ top was wet and had blood on it.  Turns out the connection of the tubing to her central line was leaking Flolan and blood-  YIKES!  we called the company in charge of her PH drug and they walked us through a few different steps to try and get the pump running properly again.  Unfortuanatley, because the line had been leakign for at least a couple hours there was a blood clot in the central line itself and the medicine wasn't able to advance properly.  They had us call 911 because the flolan has such a short halflife- 3 minutes before it is out of her system.  Zoe looked great the whole time, her stats were great- she was more annoyed that she was woken up at 11pm.  The paramendics stayed for about 45 mintues and we talked through some of Zoe's issues with them and they gave us some tips on things to say to the 911 operator in case we ever have to do this again.  They were glad to meet Zoe and get a bit of her history- hopefully this will make every thing go more smoothly if we end up in the situation again.  Needless to say, Jason and I didn't get much sleep that night,  we were up every 30 minutes to check her line and make sure it was still running properly.  Zoe didn't know anything was wrong- thank god.  Nothing like a 911 call in the middle of the night to get your blood racing!!  After check in  calls with Zoe's cardiologist and PH nurse the next day, everybody said we did the right thing and that as long as she looked good and there was no more blood in the line, there wasn't anything to worry about.  One of the paremedics asked me if I was a nurse when we were talking to them about zoe- I guess that means I sound like I know what I am talking about- and that I have spent too much time in a hospital!! 

Zoe and her cousin Eva- riding trikes and few weeks ago

Zoe's off oxygen!!  It has been three weeks and this morning she woke up and pulled her canula off for the first time since she's had it on.  She had only been on 1/32 of a litre (basically nothing)  so we figured she would be fine.  When we checked her stats when she was napping a few hours later she was statting 98.  She has continued to do great all day, so I think we are done for now.  Thank goodness, she is so quick and mobile these days that trying to keep up with her with the O2 tank has been a bit of a challenge and a juggling act. 

Zoe got to go on her first ATV ride today with her cousin Cruz.  She loved it, she bounced and smiled the whole time.  She's such a  daredevil- anything that bouces her and tosses her around, she absolutley loves it.

Zoe had a great Easter, two family dinners with lots of cousins.  She got to wear this adorable knitted  dress my aunt thelma made for her.  She finally fits into it and she looked so sweet.  She was able to go on an Easter egg hunt and dyed eggs a few days earlier with her Aunt Ashley and cousins Ethan and Cruz.  

We're hoping the weather will continue to get better and we can get out to the zoo and aquarium sometime soon. 

Zoe with Cuz and Mama on the ATV

Zoe with cousin Eva and the Easter Bunny, Sunflower

Hunting Easter eggs

Just a brief update--   Zoe has some sort of viral cold thing that has messed with her sinuses and of course her lungs.  She got it last Friday sometime and did pretty good for a couple days without oxygen but on Sunday night we ended up putting some oxygen on her just to help her out abit.  She's doing fine and seems to be weathering it well.  We think she has got over the worst of it and now is just tryign to process the mucus part- yummy!  She'll probably be on oxygen for another wek or so, so send lots of prayers and happy thoughts our way that she comes off it soon.  Luckily no hospital visit this time around. 

 Speaking of hospital, I forgot to mention in my last post that when Zoe was inpatient a few weeks ago to have her cental line repaired, we saw some of the staff from Legacy Emanual Hospital in Portland.  It was one of those perfect place/timing things.  I had been standing by the door of Zoe's room and looked out and saw this woman that looked familiar like someone from Legacy, but someone I didn't know excecpt by sight.  I went outside the room to ask her if she was from Legacy and she said yes and as I looked down the hall, there was one of Zoe's ECMO nurses, Jefferey.  Such a crazy small world.  They were transporting a kid down to Portland.  We go to chat for a couple minutes and he go to see how big Zoe has gotten.  Jason and I always love seeing people from Legacy, it was Zoe's first home and they all took such good care of her.

I know it's been forever since I've written about Zoe, but sometimes life gets in the way.  The three of us have had some busy weeks.  Zoe is doing amazing right now, she is a moving machine.  Crawling, standing, sitting, riding on her car, cruising- you name it she can now do it.  Unfortunately, this sometimes gets us into trouble.  Last week, when I turned my back for two seconds, Zoe managed to walk around the couch a bit farther than usual and her central line tubing got wrapped around the couch leg and got pulled a bit- it looked worse than it actually was.  I immediatlety paniced becase the line measured like it had pulled out of her chest 2 centimeters and it also had a bit of a nick in the line but wasn't leaking.  After a few calls to the cardiologist and a visit to the pediatrician, it was decided that she should go into the hospital to have the nick in the line glued- the placement of the line in her chest was still fine.  So we made a scheduled visit to the emergency room at Seattle Childrens on Wednesday morning where they slpiced her central line.  To do this Zoe had to be inpatient for 24 hours, literally waiting for the glue to dry.  She did great, better than Jason and I, the poor kid had two IV's, one in each foot so that her flolan could keep running, the central line can't be used while the glue is drying.  She couldn't stand, walk, or crawl all the things she loves to do, so Jason did lots of snuggling with her while I did lots of hand sewing.  I had an art show this past weekend that I was frantically trying to finish.  Thursday AM, I headed down to Tacome to set up for the RAGS Wearable Art Show while Jason finished getting Zoe discharged and took her home.  Jason took care of Zoe all weekend while I was at the show- he did great and Zoe kept him super busy-  Reading "Baby Beluga" 12 times in a row and chasing her around the house.  They both survibed of course and I missed Zoe terribly, it was very odd to not be around her for 4 days excpet for an hour at night and in the morning-  now I know how Jason feels.  Anyways, I think we are all recovered from that now and back to life as normal.

Zoe has had several doctor appointments in the past few weeks.  Her neurodevelopmental check up went great, they were incredibly impressed with what she can do- the last time they saw her she was about 11 months old.  She also had an ECHO a few weeks ago.  It went great.  Her lung pressures are about the same, maybe a bit lower, but what is really exciting is how well the blood is now flowing in her heart.  Zoe has always had 2 holes in her heart and a shunt right outside her heart (PDA).  The ASD  (smallest hole in her heart) couldn't even be seen hardly at all, which hopefully means it is healing itself and since the pressures in her heart are lessening the blood is no longer shunting through that hole. She also has a moderate sized ASD between the upper chambers of her heart.  That hole is still there but what is really exciting is that the blood is now only shunting right to left, not both ways.  This means that they can potentially think about closing up that hole which should help reduce her pulmonary hypertension since the oxygenated blood would no longer be able to shunt to the wrong side of her heart.  The PDA that is directly above her heart is still there, and that is actually benifical to Zoe because if Zoe's lung pressures get to high and blood has to shunt somehwere, it would be able to do so outside of the heart, which would make her heart not have to work so hard.  Her heart still looks great, it is a bit enlarged on the right side, but no more so than it has been all along.  Zoe has a yearly cardiac cath scheduled for MAy where they will definitvley be able to check allher pressures and look at the ASD and VSD to decide what to do next. We will also hopefully at that time be able to take her off about 4 meds, which would be great.

In terms of eating,  Zoe is now able to tolerate 180 mls (6 ounces) at each feed, this is huge becasue it has enbabled us to go from 9 feeds a day every 90 minuted ot 6 feeds a day every 3 hours-  this adds a lot of time to the day and makes getting out much easier and enjoyable.  Her vomiting and reflux has decreased vastly, she now will have several days a time with no vomit.  She is still not eating much orally, but every now and them will put some crackers or pretzels in her mouth.  She also will drink some occasional water. She has been able to spend some time with her cousins and some younf family friends lately and being around them and watching them eat is very encouraging to her.  AS soon as respiratory virus season is over in May, we will hopefully be getting Zoe into some plat groups and eating groups through her OT provider.  Hopefully, no that her reflux is getting better, we can start getting somewhere on her oral feeding. 

Zoe and I have been loving the mild winter/spring around here, we've been getting out for long walks every nice day we can, I'm not sure who loves it more, Zoe or me!  Nothing like a beautiful springy, sunny day in the Pacific Northwest.

Hope this gets everybody up to date, I'm sure I'm forgetting something, and I'll try and update more than once every two months

Zoe helping Papa with some yard work

Zoe with her first pigtail hair do

Hanging out with best bud, Lily, on a gorgeous spring day in Seattle

Sorry it's been so long since I've written.  Just busy with life I guess.  Zoe has been doing great the last month and a half. She has been keeping her food down better than ever and is putting on about 1/2  pound every two weeks-  we are back up in the 25% for weight.  She is 17 1/2 months old now- crazy how time flies with a little one.  She is crawling everywhere and loves to walk if someone is holding her hands. She is talking more- no words just lots of exuberant sounds. 

Last week I went to the Oregon coast with my sister  and her 2 year old daughter, Eva, and Zoe.  We were there for a week.  The weather was crazy blustery and rainy for the most part, but we had a few nice days. We had a gorgeous view of the ocean from our condo and got the girls down to the beach a few times.  Zoe oved crawling on the sand and playing with shells while watching Eva.  She just adores being outside and gets the biggest smiles every time.  It was also a greta trip for her feeding issues.  She got to see another little kid eat 3 times a day.  By the end of the week, she wanted her own plate and utensils. She still isn't really eating much of anything orally, but she loves playing withthe food and feeding it to other people.  The last couple days she has taken some bites of mashed potatoes and some apricot pie.

We were also able to stop in at Legacy Emanuel hospital on the way to the coast and see some of the staff there.  We were also able to take a road trip down the coat a bit more to see one of Zoe's other NICU nurses.  Unfortuantley, my camera's memory card died at the end of our ocean trip and I have no pictures to show for it, other than the ones my sister took-  so sad!  Oh well, I guess we'll just ahave to do another trip to Portland and the coast sometime soon- maybe Zoe and I will take Jason this time.

We had a great holiday season, Zoe enjoyed being out and about with all the family- you know how she loves being the center of attention! 

Keep all the good eating vibes coming this way- hopefully we are turning a corner!

 We're off oxygen!!  Zoe came off oxygen on Wednesday and has been doing great.  Her stats have been anywhere from 96-100- YEAH!!  Hopefully this is our one bug for the year and we can keep her healthy now.  Thank you so much for all the prayers and support.

I came across the following story on a care-site I follow for another littl egirl with Pulmonary Hypertension.  Jason and I have bee so blessed to have all of Zoe's medical bills covered by insurance, I can't imagine what would happen if we were told that the medical procedure that could save her life wasn't covered by insurance as these parentys were.  Please take a moment to read this little boys story and pass it on to whoever else you think might be interested.  Thank you and Happy Holidays to everyone!!  I have copied the following directly from the other care page.

We follow many children on carepage, we gain support and knowledge into the disease our children have and these children become part of our lives. One little boy is going to die because of the insurance company. I would like to say this is rare, but it is not. I hear this over and over. Someone came up with an idea to save this boys life. I posted it in hope that everyon on my list will send a dollar. Thanks you guys, don't let an insurance company play doctor.

The Address:
Paul and Maria VanNocker
115 East Franklin Avenue
Edgewater Park, New Jersey 08010

A VERY Important Request...

Please read as I copied and pasted this message from another child's page, please read it as it has a very simple yet huge request, which could possibly save Kyler's life...

PLEASE HELP ARMS WIDE OPEN SAVE KYLER’S LIFE

Dear Friends,
This morning as I rolled over to hit the snooze button on my alarm clock, I noticed the red light flashing on my Blackberry. Groggy and bleary-eyed, I reached over to see what messages awaited my response. There were two. The first was inspirational, about how every action we take, no matter how seemingly small, matters because, good or bad, our thoughts and our actions are like “stones dropped into still waters, causing ripples to spread and expand as they move outward,” and how just one of those ripples, negative or positive, could become a tidal wave. I pondered this thought for a moment, the idea that individually we all have the capacity to make a huge impact, but if we combine our efforts, collectively, we can change the world. Then I opened the second email. This was the stone.
The Stone:
My friend Jennifer emailed me an article about the VanNocker family that was written by Ronnie Polaneczky for the Philadelphia Daily News entitled “The Insurance Company vs. Kyler’s Life.” http://www.philly.com/dailynews/top_story/20091202_Ronnie_Polaneczky__The_insurance_company_vs__Kyler_s_life.html Five-year-old Kyler VanNocker was diagnosed with Neuroblastoma at the age of two-and-a-half. After enduring a year of treatment at St. Christopher’s Hospital for Children and Children’s Hospital of Philadelphia that included a seven-month stay inpatient and complications that resulted in kidney failure as well as heart, lung and liver disease, Kyler finally went into remission in September 2008 and was able to experience “normal” childhood once more. Neuroblastoma is a very aggressive type of cancer, however, and ten weeks ago, follow-up tests revealed Kyler’s cancer had returned. Part of what makes this particular cancer so relentless is that recurrent Neuroblastoma involves a different type of treatment protocol than an initial diagnosis, and Kyler’s oncologist determined that the only effective treatment option for Kyler is MIBG Therapy. MIBG Therapy is a clinical trial, much like the 3F8 treatment that Baby Billy is currently receiving. But please keep in mind that because there is no cure for Neuroblastoma, these clinical trials are the standard of care and the only chance these children have for survival. Kyler’s insurance carrier, HealthAmerica, does not seem to understand that, however, and despite the doctors’ recommendations, has denied coverage for the therapy because it is experimental and investigational in nature and is not yet approved by the Food and Drug Administration. Out-of-pocket expenses have left the VanNockers bankrupt. Without this procedure, Kyler’s only option is to receive Hospice Care and he will be sent home to die a slow and agonizing death.
The Ripple:
I immediately called Dena Sherwood, a good friend of mine and the mother of two-year-old Baby Billy who was diagnosed with Stage IV Neuroblastoma in July 2008, who, along with her husband Billy Sr., founded the non-profit organization Arms Wide Open Childhood Cancer Foundation, Inc. www.awoccf.org
For those of you privileged enough to know The Sherwoods, you will not be surprised when I tell you Dena has a plan to help.
The Plan:
Dena’s plan was triggered by the story of Noah Biorkman, a five-year-old who was diagnosed with Neuroblastoma in 2007 at the age of three, who went into remission, but then relapsed in September of 2008, the very same month that Kyler VanNocker went into remission. http://www.mlive.com/news/detroit/index.ssf/2009/11/diana_biorkman_mother_of_5-yea.html
When Noah’s mother, Diana Biorkman, posted an article on a CarePage site asking people to send Christmas cards to Noah so they could celebrate the holiday early due to Noah’s declining health, what followed was a FaceBook page, a television crew, and an outpouring of love – and Christmas cards arriving in their Michigan home. One day they received 64 cards. The next day, they received 80,000. Sadly, after a long battle with Neuroblastoma, Noah passed away on November 23rd, but not before receiving 1,000,000 Christmas cards!
The Tidal Wave:
Because this endeavor was so successful, Arms Wide Open is asking you for a repeat performance – but with a twist. Instead of sending a $2.99 Christmas card to Kyler, we are asking for each of you to donate $1.00. That’s it. It is amazing how connected this world has become because of the internet, and if you contribute $1.00 and pass on this email to everyone in your address book and they contribute $1.00, collectively, we can buy the VanNockers time and send them enough money to pay for Kyler’s next MIBG treatment. Changes need to be made to the healthcare system in the United States, and it is an atrocity when an insurance company puts a dollar amount on a child’s life, but this change with insurance companies and legislation and lawmakers is a slow process and, unfortunately, time is not a friend to any of these children battling Neuroblastoma. We know times are tough, but $1.00 is not a lot to ask for and when you add that to the other dollars, IT WILL SAVE A LIFE. Please look under your couch cushions, under the floor mats in your car, the bottom of your pocketbooks, and please tell everyone you know to do that as well, because every dime counts, every second counts, and every single one of you count. If this was your child, would Hospice be acceptable?
We didn’t think so. Give the gift of life this holiday season.
The Address:
Paul and Maria VanNocker
115 East Franklin Avenue
Edgewater Park, New Jersey 08010
With Hope,
Tracy Neilson,
Vice President, Arms Wide Open Childhood Cancer Foundation, Inc.

What a wonderful way to help!

So after about 4 days in the hospital we got to go home last Friday.  There had been some complications with Zoe's Flolan central line and so ther cardiologist decided that she would be better off at home with us and we would be fine weening her off oxygen.  Due to her tubing being changed so often and by people other than Jason and I, her line got a blood clot in it  and leaked Flolan so Zoe didn't get the correct abmount of flolan for about 9 hours.  It is hard for all the hospital staff to know as much about the flolan as Jason and I do, due to them only having one or so patients a year on it.  They are fantastic there, but it requires a different set up than we use at home.  It diesn't seem to have bothered Zoe at all in the long term, so we are thankful for that.  It could have happened to a child who really depended on Flolan for survival and could have been devastating.  Zoe's cardiology nurse is going to do some training with hospital staff so hopefully this doesn't happen again.  Jason and I also know what to look for next time and what to reinforce to the nurses so it was a learning experience for all.  Her fever has been gone for a week or so it seemed it was just a matter of oxygen needs. It has been lovely to be back in our space,  Zoe is acting like everything is the same as always, she's such a trooper. Nothing ever phases her.

We've been home about a week and a half now and Zoe is doing great with her energy, feeds, etc.  She is still on oxygen and her cardiologist wants her to stay on .5 litre for another week or so just to rest her lungs.  Last Wednesday we had Zoe down to 1/8 of a litre and she was doing great but the next day she was requiring a bit more oxygen and so we took her into the pediatrician and they took an x-ray.  the cardiologist at childrens thought she might have a bit of a type of walking pneumonia so she was started on another atibiotic. It seems to be helping some,  she isn't as rattly in her lungs any more and except for the oxygen attatched to her nose, you'de never know anything was wrong.  She is crawling like crazy.  standing up, sitting down, moving like a mad woman-  can you just see the cord untangling we have been doing lately!!  Yesterday I decided that I needed to figure out a way to have Zoe wear her flolan pump so she can move more than 3 feet without the cord being stretched.  I was going to make a vest thing with a pouch on it and my sister mentioned those little "harness buddy" backpacks you see parents pulling their kids around with.  So today I went to target and got a monkey one- I took out the stuffing, put in some water proof padding and stuck the pump and icepacks in it and put it on Zoe's back.  It didn't seem to slow her down much.  She did get a bit stuck when she ended up on her back and couldn't roll over because of the weight of the pack-  we'll work on it.  But once she is off oxygen, this should give her total mobility!!  More as it happens.  Thanks for the love and Happy thanksgiving to everyone.  Jason and I sure have much to be thankful for this year!