Happy Halloween!!  I didn't quite get Zoe's costume all done, but at least she made it into her pumpkin butt onesie.  She was going to be the million dollar baby, but maybe next year.  Today was a long day.  Zoe had her last meal at 8:00 this morning and then didn't get another meal until 7:00 tonight.  Her cardiac cath was scheduled for 1:00 but didn't get going until about 2:30.  Zoe spent the morning resting comfortably which was reassuring to the two of us.  I though we were pretty pulled together about going through this procedure but as soon as they started to roll her away we both got totally teary.  It's so hard to think about her doing so well and then going into this procedure that could set her back.  The surgeon warned us that she might have to end up back in the ICU and still on a vent.   Jason and I spent a long few hours pacing our room and then got a call saying that she was all done and to come meet the surgeon.  He said Zoe did great, no complications.  It took them a few attempts to get the catheter in an artery, but it worked.  They found basically what they expected, high pressures like the ECHO said.  They tried 100% oxygen, room air, and nitric oxide  to see how Zoe's lungs responded.  We still don't have much of an update on how that all went, lots of calculations have to be done still.  The surgeon said Zoe did respond some, we're just not sure how much and probably won't until tomorrow.  Zoe recovered great, she is back in her roon and on the same exact amount of oxygen she was on pre-surgery- YEAH!!  SHe is resting comfortably right now and finally got a meal.  Now we just have to get her back on schedule.  We won't be abe to pick her up for a few hours because they don't want any pressure on the insicion site since it is an artery.

As of this morning the doctors were still talking about us going home possibly this weekend, we'll see what happens tomorrow after everyone has processed the cath results.  The home medical company is coming by tomorrow to train Jason and I how to use the oxygen tanks and feeding pumps- I still can't believe we're almost there.  I will write more about what the long term plan is for Zoe tomorrow when we have some answers.  Thanks for all the prayers and happy thoughts!!

Well, tomorrow is the big day- the cardiac catheter.  Zoe had her VQ scan yesterday which tests for blood clots in the lungs and she didn't have any. They didn't necessarily think she did but it's one of the good things to check off the list.  The poor kid had to have an IV put in to run the chemicals in and it took 5 attempts to get it in- she was not happy!!  Other than that we have started training to learn what we are going to have to do when we get home. Today I learned how to check placement on Zoe's feeding tube and how to flush it at the end of a feed. 

Zoe's Cardiac Cath is tomorrow at 1:30.  They will be measuring the pressres in her lungs and trying a few different vaso-dialtors like nitric, oxygen and room air.  As of right now, the plan is to start Zoe on a drug called Bosentan which can be given with her feeds.  this is fantastic because it wouldn't require a stay in a hospital, just check ups once  month.  If this all falls into place we could potentially be home in a few days!!  I'm trying not to get too excited, but how amazing would that be?   You can read more information about pulmonary hypertension and the drugs to treat it at www.phassociation.org  

We'll keep you all posted as to how things go tomorrow and when we might be home.  Zoe's doing great right now, still working on feeds and resting lots. 

We met with our cardiologist today and are going to have Zoe's cardiac catheter done on Friday.  She will also have a scan done ahead of that which will check for clots in the lungs- that should be tomorow or Thursday.  Right now Zoe's doing great and been sleeping alot.  We got transfered to our own room yesterday and that seems to have helped Zoe get back on track.  The poor kid just couldn't fall asleep for so long, it was starting to scare me, I didn't want her to have the cardiac cath and not be rested.  We will also be starting to talk to the surgeons about putting in Zoe's G-Tube, which will be her feeding tube for the next several months.

The cardiologist today was talking about trying a drug called Bosenten for Zoe's Hypertension, It woudl be a drug that would be administered with her feedings not a continual IV.  This would mean we could potentially be home in a few weeks!!  I'm trying not to get too excited about a departure date, but it's nice to know that there is an end in sight (hopefully). 

Jason's aunt Linda and Uncle Pete stopped in yesterday to see Zoe and luckily she was wide awake to entertain for them. 

Just getting setttled in bit by bit.  We've had lots of company already starting with three of Zoe's nurses from Emanuel: Dona, Steph, and Leanna.  I swear Zoe remembered them all.  It was such fun to see them so quickly after leaving, we miss them already.  Zoe had her echo on Friday morning and basically it showed the same info that was found in Portland, so the next step is a cardiac catheter.  We don't have one scheduled yet but it will probably be early this week.  We have a meeting with a cardiologist who specializes in PPHN on Monday morning and she will be the one who schedules it.  We are a little nervous about the procedure because it requires Zoe going back on a ventilator but at least we should have direction to go afterwards.  I also met with the pulmonalogist  who seems very hopeful about finding an answer.  He was very  impressed with how expanded Zoe's lungs seem to be, now we just need to get rid of ther PPHN.   

Saturday Zoe decided not to sleep for some reason. She woke up around 5 am and did not fall asleep until about 9pm.  She would take these little 10 minute cat naps and then promtply wake up and want to play again.  She was so funny about it, she didn't get fussy at all, she just wasn't tired. Naomi, JP and their daughter Eva stopped by on saturday for a bit, someday hopefully Eva and Zoe will be inseperable cousins. 

Sunday brought lots of company, Jason's Aunt Cappy stopped by and got to hold ZOe for a while and then Jason's mom and Sister stopped by to play with Zoe.  She has gotten so much stronger just in the last few days.  I put her on her tummy on the boppy pillow  and she sat there for about 20 minutes holding her head perfectly upright, a far cry from last week when her head would just flop forward.  I'm so proud of how  strong and tough she is- a true Strom-Henry. 

I really like our doctors and specialists we've met, they all seem personally invested in Zoe and really hopeful for a good prognosis.  I'm still staying at the hospital at night, I just don't feel comfortable leaving Zoe quite yet- although I have to say she is going to be truly spoiled when she gets home because every time she starts fussing int he middle of the night I get up to check on her and end up holding her for a while.  Apparently it's true- we are wrapped around her cute litttle finger!!

P.S.  to all the folks at Legacy Emanuel- Zoe's hair bows are a total hit up here and how they are held in place is cracking everyone up, I think they are planning on telling the NICU nurses up here about it.

Well, wer're here in Seattle!!  After a crazy few days of packing like mad and trying to get Zoe to eat, we  (and my sister) left Portland at 8:00 this morning.  It's been an emotional few days for me, it was really tough to leave all the the friends we've made at the hospital in Portland, they have all done so much for Zoe and us.  Zoe did a great job on the trip up here in the ambulence- they packed her into this little baby isolette and she only puked twice before we gon the road (not her fault- she was given her whole feeding an hour early and then packed right in).  Jason got to ride in the ambulance with her to help keep her a bit calmer and definetly keep me calmer, I would have freaked out if she got upset and I couldn't help her.  We got to Seattle Childrens around 12:00 PM and got Zoe settled into her room.  We are sharing a double room with another little baby boy, but it's a fantastic room, we have a bed that we can use overnight, our own TV and a little closet, and best of all- we have a huge wall of windows!!  Today all that was done was Zoe's general assesment and few lung x-rays and some blood work.  She has been a bit out of sorts today because her feeding and medication schedule got totally off and kind of caught up with her in the afternoon. We're working on getting her caught up.  Tomorrow there will be another ECHO done and I'll meet the pulmonalogist and Cardiologist and we'll start to figure out what the plan for Zoe is.  I'll write more details tomorrow and post some pictures but for tonight I just wanted to let everyone know that we are here and all settled in and ready for our next Zoe adventure.  I'm spending the night at the hospital with Zoe just till she gets back on track and now I'm off to get some sleep!!  Thanks for all the happy thoughts sent our way!

Big days for the three of us.  We had our meeting with the pulmonlalogist, the neo natologist, and the case worker yesterday.  basically what was decided was that Zoe's case of Pulmonary Hypertension is severe and that something needs to be done , whether here or at Children's in Seattle.  The pulmonologist sent a letter to the insurance company stating why it is medically necessary to have Zoe transferted up and the case worker followed up with phone calls.  Nothing was decided yesterday as we were waiting for the insurance companies answers.  She needs to a cardiac catheter test done, which is when they insert a catheter into her heart to check the pressures there.  It is the only true way of telliing how severe things are.  The ECHO is really good at estimating, but this is the only for sure way.  When they do the cardiac catheter they can test different elements such as oxygen and nitric to see if when they are applied, Zoe's pressures drop.  This will help determine what the next step is.  If she has to go back on Nitric she would have to stay in the hospital, but if she only needs oxygen and the viagra she could likely go home within a few weeks. 

Soooo... today the insurance company said they would cover the transport, so we are heading up to Seattle Children's at 8:00 AM thursday via ambulance (Jason gets to ride along- he's very excied).  We don't really know much more info than this right now.  They are hoping to get the cardiac catheter done on thursday or friday so a plan can start to be formed, but it all depends on how her check in goes.  She will be on of the regular medical floors at childrens, not in the NICU or the PICU, so possibly we might be able to have a few more visitors but we'll  keep you posted (get your flu shots, wash your hands and don't be remotely sick!!)  I'm excited to be going back closer to home but it's been a really emotional day for me.  I've gotten very attatched to the nurses and doctors down here, they have helped us get through some really tough times and I've become really attatched- it's a bit of a security blanket.  The thought of doing this all over again is a bit daunting.  It will be great to be hooked up with all the doctors and specialists Zoe will need to see over the next few years and this is the easiest way to do it.  It's still so scary to think about how far Zoe has come and yet we still have this huge hurdle to get over, but the hope is that the specialists at Children's will have some great ideas to try.  Jason and my sister, Naomi, are coming down tomorrow to help pack and clean and then we'll all head up north around 8:00 on Thursday. 

Thanks for all your prayers and support and hopefully we can see some of you soon in Seattle!!  Zoe's been doing amazing latley.  She has been able to drink up to 45 ml at some feedings and is now up to 10lbs 9 oz and 23.5 inches.  She gets more beautiful and interactive each day.

A fun weekend with Zoe  and family.  Jason's Mom, sister, brother-in-law, and nephew Ethan were down to visit.  Margi hadn't seen Zoe since right after she came off ECMO so the difference was amazing and Ashley and Josh hadn't seen her at all yet.  Everyone got a chance to hold her for a bit before it was time to work on feedings. 

Zoe's doing better with feedings, she now has the suck thing so figures out that she can drink over an once from a bottle in under 10 minutes, of course then she yacks it all up because she gets too much air, so now we have to work on pacing her a bit more. She is still doing good with breast feeding but we have a long way to go to get to oor 95 ml.  She is now up to 10lbs, 6 oz. 

Jason and I have our big meeting tomorrow with the pulmonologist and the neonatologist, so hopefully we will soon have a few more answers as to what the next step is for the three of us. 

The picture below is Jason's nephew, Ethan, in front of the sunflower my dad made for the children's garden here at Emmanual Legacy Hospital.  It has a leaf on it that is inscribed with "thanks to the doctors and staff at Emmanuel"  It also has Zoe's name and birthdate on it.  It looks beautiful in the garden with all the other art work and the flowers and is a great reminder of all they have done for us.

Another fun day with Zoe.  We worked on her stretches and loosening up her muscles with OTPT for a while today.  She did great this time and didn't fight it as much as last time. I've been working with her every day tryng to get her to bring her shoulders down a bit and I think we are finally getting somewhere.  She did great with feedings today and was able to take some at each feeding instead of needing to rest at some of them.  She is also smiling a lot more.  When you kisss her cheeks repeatedly, her eyes get really wide and she smiles-- it's so cute. 

We had a "family portrait" taken today by Denise, one of the Respiratory Technicians who is also on the transport team.  She is using the photo for a presentation she is making on NICU success stories.  We are the grand finale.  Jason and I realized today that this is the first picture taken of the three of us since the ECMO days so long ago. 

Another emotional roller coaster day.  Zoe is doing fantastic with her feedings.  She has taken some food either by bottle or breast at each feeding today, anywhere from 20-40 ml-  still not too close to the 90 ml we need to get, but she's working on.  She seems to have figured out the suck/swallow thing, she just needs to build her stamina and not fall asleep soo soon.

Now for the not so good news,  the pulmonalogist came in today and said he had talked to the cardiologist and that Zo'es pulmonary hypertension is worse than he had thought.  He is reccomending that she be transferred to Seattle Children's Hospital where she can see experts that deal with newborn pulmonary hypertension.  He doesn't think it is safe for Zoe to go home at all until more tests are done.  The pulmonary specialists in Seattle will want to run their own tests and might have different ways of combating her issues and so therefore it is better for her to go up there than to start treatment here.  The problem is transportation to Seattle Childrens, we can't drive her there because of her health issues and sometimes insurance companies won't cover transport since they have a pulmonary doctor here at Emmanual.  The Case worker and the doctors will be working on figuring this all out over the next week or so and seeing how to get Zoe to Seattle.  The other part of wanting her to go directly to Seattle Childrens is to keep her as an in-patient.  I guess it is easier to follow up as in-patient to in-patient than to be an out patient and then try and get in with the correct specialists.  Whatever the issue, it just makes us sad. We went from thinking Zoe would be going home in a few weeks and need lots of follow up care to looking at another stay in another hospital.  She still has a good shot at making it, but they deal with more of these heavy duty pulmonary hypertension cases in Seattle than her, so they want us to be in the right place for her.  At least we would be in Seattle, although I would miss the nurses and doctors that have taken such good care of Zoe here,  we've grown kind of attatched.  So we'll  see what happens in the next week or so.  We have the big meeting on Monday to figure out more details.

My Mom headed back  to Bainbridge today after spending the last few days snuggling wih Zoe (and taking an infant CPR class).  Jason will be down tomorrow and can't wait to see Zoe, she's been smiling up a storm lately.

More unknowns.  I met briefly with the pulmonalogist today and talked some about Zoe's future care but he had notyet had a chance to talk to the cardiologist so there aren't any real answers.  All anyone can say now is that it will take time.  It's so hard to see Zoe looking so much better physically and yet still know that there is this looming danger in the distance that no one can do much about right now. 

Mom and I spent the entire day just sitting and holding Zoe.  This time she spit up on me not on Mom.  She is doing great with her feedings when she's awake.  She got 40 ml on one bottle feeding today and and got about 25 ml from one breast feeding.

Jason and I have a big in depth meeting with the pulmonologist and the neonatologist on Monday to talk about what hapens next.