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!

Can you believe it's been a year tomorrow, the 3rd, since we left Seattle Children's  Hospital with Zoe.  It has been one of the longest/ quickest/ trying/ rewarding years of our lives and we wouldn't change a thing.  To look at pictures of Zoe when we left the hospital and to watch her scoot around on her behind and laugh and smile like crazy is unbelievable.  Yes she still has a few things to work on developmentally, but to think that this same smiling happy, happy kid is the same kid that couldn't move or breathe on her own just a year or so ago is awe inspiring.  What keeps us going every day is that Zoe is one of the most with it, alert, engaging children I've ever known and she doesn't know there is anything wrong with her- she's just happy to be here and happy to play and snuggle with mama and papa.  She now weighs 21 lbs. 1 oz and is 30.5 " tall.

Now back to this past month.  Zoe's had a rough time with eating and vomitting  these last few weeks.  We have tried just about everything trying to get her food to stay down better.  We switched her from soy formula to a hypoallegenic formula which seemed to make a bit if a difference for a few weeks and then back to vomitting.  We then tried goat's milk which worked great for a while and then vomitting started again.  We then tried a perscription only formula called Elecare, which is supposedly the most non-allergenic formula on the markety, but it made her vomit more than anyrthing else- between 7-10 times a day.  She was then allergy tested and it came back positive for dairy and peanut, not that she has ever had peanuts.  I also think she has a corn allergy even though it came back negative.  So after all of this I started doing a lot more reseach and decided to try and blend my own real food formulas for Zoe.  Right now she is getting via her g-tube: rice milk, carrots, peas, rice cereal, turkey, agave syrup and canola oil.  We have been meeting with a nutritionist at Children's to come up with a plan that gets her all the nutrients she needs.  She is still vomiting some, but it does seem to be helping.  She is much more energetic even while eating.  Her skin looks a bit better, not in hives all the time anymore.  It is definetly still a work in progress, but hopefully we're getting somewhere.  Besides, it's rather rewarding to be making and be in control of what goes into Zoe.  She has so many chemicals in her, it;s nice to give her some organic food for once.

Zoe had her first pulmonology appointment in three months last friday and they were thrilled.  They thought she looked great, lungs sounded great, developing great, putting on weight at the right speed so they don't need to see her for 6 months.  She will still be getting RSV shots this winter to help keep her healthy.  Zoe, Jason and I have all had our flu shots and H1N1 shots so hopefully we are off to a good start this winter.

We have tried to do some normal family things this past month, go to the aquarium where Zoe tried to lick all the fish, go to her cousin Eva's second b-day party, go to storytime at the library, take Zoe to her first Halloween party (last Halloween she had surgery- a cardiac catheter).  It's been fun, but a really tiring month with all the eating issues, hopefully thst will all turn around these next few weeks.  Keep sending happy thoughts and prayers our way for some good GI vibes for Zoe.  If Zoe has a good day, then we have a good day..... 

Zoe- a year ago today!!  Ready to leave the hospital for the 1st time!!

Zoe at the aquarium, loving the fishies!

Zoe as the Million Dollar Baby  "MDB" for Halloween

Back view, not to shabby for a 20 minute costume!

Can you believe it's been a year tomorrow, the 3rd, since we left Seattle Children's  Hospital with Zoe.  It has been one of the longest/ quickest/ trying/ rewarding years of our lives and we wouldn't change a thing.  To look at pictures of Zoe when we left the hospital and to watch her scoot around on her behind and laugh and smile like crazy is unbelievable.  Yes she still has a few things to work on developmentally, but to think that this same smiling happy, happy kid is the same kid that couldn't move or breathe on her own just a year or so ago is awe inspiring.  What keeps us going every day is that Zoe is one of the most with it, alert, engaging children I've ever known and she doesn't know there is anything wrong with her- she's just happy to be here and happy to play and snuggle with mama and papa.

Now back to this past month.  Zoe's had a rough time with eating and vomitting  these last few weeks.  We have tried just about everything trying to get her food to stay down better.  We switched her from soy formula to a hypoallegenic formula which seemed to make a bit if a difference for a few weeks and then back to vomitting.  We then tried goat's milk which worked great for a while and then vomitting started again.  We then tried a perscription only formula called Elecare, which is supposedly the most non-allergenic formula on the markety, but it made her vomit more than anyrthing else- between 7-10 times a day.  She was then allergy tested and it came back positive for dairy and peanut, not that she has ever had peanuts.  I also think she has a corn allergy even though it came back negative.  So after all of this I started doing a lot more reseach and decided to try and blend my own real food formulas for Zoe.  Right now she is getting via her g-tube: rice milk, carrots, peas, rice cereal, turkey, agave syrup and canola oil.  We have been meeting with a nutritionist at Children's to come up with a plan that gets her all the nutrients she needs.  She is still vomiting some, but it does seem to be helping.  She is much more energetic even while eating.  Her skin looks a bit better, not in hives all the time anymore.  It is definetly still a work in progress, but hopefully we're getting somewhere.  Besides, it's rather rewarding to be making and be in control of what goes into Zoe.  She has so many chemicals in her, it;s nice to give her some organic food for once.

Zoe had her first pulmonology appointment in three months last friday and they were thrilled.  They thought she looked great, lungs sounded great, developing great, putting on weight at the right speed so they don't need to see her for 6 months.  She will still be getting RSV shots this winter to help keep her healthy.  Zoe, Jason and I have all had our flu shots and H1N1 shots so hopefully we are off to a good start this winter.

We have tried to do some normal family things this past month, go to the aquarium where Zoe tried to lick all the fish, go to her cousin Eva's second b-day party, go to storytime at the library, take Zoe to her first Halloween party (last Halloween she had surgery- a cardiac catheter).  It's been fun, but a really tiring month with all the eating issues, hopefully thst will all turn around these next few weeks.  Keep sending happy thoughts and prayers our way for some good GI vibes for Zoe.  If Zoe has a good day, then we have a good day.....