Well, it was bound to happen at some point. Zoe's central line developed a leak on Friday night and she wasn't recieving her flolan as she should.  So after a call to 911, we were off in an ambulance to Seattle Childrens ER.  They admitted her last night around 9PM and we tried to get as much sleep as possible (not very much).  Zoe was so tired and hungry, they wouldn't let us feed her since she could have potentially had surgery at 7 AM.  SHe finally went into surgery to have the line replaced at 4 PM.  It all went well and and she is now recovering.  We are spending one more night in the PICU and will hopefully be home tomorrow AM.  More later, send lots of prayers Zoe's way for a quick recovery!!

Zoe enjoying her evening chocolate feast

Zoe EATING her birthday cake ( and grilled cheese sandwich)

the Birthday Girl with Nana and Bapa 

Zoe has been eating for a month!!!!!  It's till unbelievable to watch her, it still makes me cry sometimes.  She is tring more and more things these days,  The other day she ate 1/4 of an eggroll and a piece of shrimp when Jason and I had pho for dinner.  She is now eating bananas, quesadillas, string cheese, chicken nuggets, tater tots, bagels, basically anything on a carb product is A-OK with her.  She is just enjoying it so much, it's so fun to watch.  The other day Zoe and I were out running errands and I swung past a Taco Time for lunch and ordered her a quesadilla off the menu and she ate it and some tater tots.  It was an amazing moment to know I could order food for Zoe off a regular menu and know she would eat it. It feels so free to not travel with bottles of blenderized food and tubes.  It all happened so quick, sometimes I think it hasn't sunk in yet.  She is still getting about 300 mls (10 ounces) of water through the tube during the day and 7-8 ounces of blenderized food via the tube at night, but hopefully we will be able to stop the night feed after her 2 year birthday and weight check.

She is getting back to her old self now too,  not quite as clingy and weepy as she was for several weeks there.  She is stsrtign to play with her toys again, crawl around, cruise around the furniture and talking again.  SHe is cutting 6 teeth right,  yep, that's right- 6!!  All 4 eye teeth and two of her 2 year molars, needless to say, we've gone through lots of tylenol in the past few weeks.  

It' hard to believe she will be two in a few weeks, time has flown by and she has made such huge leaps and bounds the last few months,  Life is starting to feel almost normal.  Thanks for all the prayers and support for Zoe through this whole process,  once again she has proved how amazing she is and how lucky Jason and I are to have her in our lives!

I know it's been forever since I've posted and so much has happened!  Zoe started eating on Day 12 of our rapid wean and hasn't looked back since.  She started with cheerios and has moved on to bigger and better things.  The first few days when she started eating she was still sort of hesitiant and cautious when putting food in her mouth and then about three days in she figured it out.  She discovered SUNFLOWER SEED BUTTER!!!  She eats it by the tablespoon-  we have gone through 3 jars in the past 2 weeks!!  Luckily for us it is the perfect food, it is packed with protein, fat, and fiber- couldn't be a better food to be obsessed with.  She is now eating graham crackers slatherted in nutella, pop tarts, goldfish crackers, fig newtons, the occasional bite of cheese and some bananas.  She tries about everything, One night for dinner she ate some tortillas with beans and guacamole and another night she ate some pho noodles and a bite of eggroll.  We have a ways to go to get a balanced diet, but what 2 year old do you know that eats a balanced meal?

Zoe's weight dropped from 25 pounds pre wean to her lowest weight of 22 pounds 9 ounces about 10 days into the wean.  Once she started eating, weight just seems to be pouring back on.  She gained 2 ounces in 2 days, then 5 ounces in 5 days and today she went in for a weight check and she weighs 23 pounds 10 ounces, up 10 ounces in 10 days!!!  We are still giving her 250 mls of blenderized food at night and abotu 300 mls (10 ounces) of water over the day to keep her hydrated.  She is still not drinking much by mouth, but I think it will get there.  A lot of OT's and SLP's say that children who are learning to eat for the first time, tend to do one or the other at first until they get confident enough to try the other.  

It is an amazing, crazy thing to have a child that eats!  Every day Jason and I are in awe watching her shovel food in and smile while she does it.  It is almost as if she doesn't remember not eating-  she loves it!!  To make things even better, Zoe no longer vomits at all! We haven't had to catch any food in a bottle in over a month,  It feels like freedom - for both Zoe and us.  I can't even imagine how much better she feels, not having to throw up at least once a day and not to have these terrible hacks every morning.  Hopefully she never remembers any of this.

Other big news,  Zoe is now on a IV med (flolan) that doesn't require ice!!  This means she doesn't have to haul ice packs around in her backpack and it means we don't have to haul a gazillion icepacks with us wherever we go.  WoooHooo!!!!

Zoe's last ECHO went great,  her lungs seem to be functioning better and better and her heart is showing no signs of strain.  So for now, we are leaving the two holes in her heart as is and they will be repaired at a later date.

It's feels like we have turned a huge corner in our lives and like a huge weight has been lifted.  Zoe couldn't be more amazing,  she continues to stun us every day with her strength and perseverence.  It has all happened so fast, I don't think it has quite sunk in yet.  We are one month away from Zoe turning 2 years old-  Unbelievable!  I remember when two days seemed like a huge deal.  Miracles happen- Zoe's proof.

Jason and I are waiting to see what Zoe's next favorite food will be, and whatever it is we will love it!

Zoe having nutella party with Nana- Hilarious!

In a happy sunflower butter induced coma after a trip to the aquarium

Zoe's first homemade blackberry pie- just for her from Nana and Bapa-  she is a Strom, she like pie!!

Zoe loves Nutella and she loves eating!!!

Hunger Strike: Day 12

She did it!!  After days of her sucking on veggie stix and cheerios and the spitting them out, she chomped down and swallowed cheerio after cheerio.  For about 2 hours this afternoon Zoe ate cheerios by the handful along with graham crackers, ritz crackers and even some mashed potatos.  It was unbelievable to watch her.  it was like a dam broke and she couldn't enough or fast enough.  Hopefully she will continue tomorrow with more food and loving it.  

I'll write more later, but I'm too exhausted after today.  What a rollercoaster ride for the three of us.  Zoe was so tired at the end of today that she screamed her lungs our for about 90 minutes.  A first for us, never before has she cried for more than 5 minutes and that wasn't even real crying.  I think it was due to the exhaustion and concentration and anxiety she has put into these last few weeks.  She's so amazing.

Happy Father's Day to all the wonderful dads put there.  I have the most incredible dad, so supportive and always there when I need him.  I am thankful every day.  Zoe also has an amazing dad who is always there for the two of us.  I'm very blessed.  I love you Jason.

Hunger strike: Day 7

 Huge leaps and bounds today.  At lunch Zoe grabbed a piece of pizza I was eating, looked at it intently, opened my mouth, grabbed the half chewed pizza, looked atthe two of them and put the chewed pizza back in my mouth.  It was like she was totally processing what happen sonce food goes into the mouth.  For snack time we went over to SIndy Piehl's and she got to have snacks with her grandaughter, Lily.  Zo eplayed with food and put a couple tings to her mouth, but mostly she just watched Lily eat.  On the car ride home, she licked chocolate ice cream off a spoon over and over.  At dinner tonight she was really tired and I wasn't expecting much, but she played with her food as usual.  All of a sudden, she grabbed Jason's fork, stabbed at some stuff on his plate and put it directly into her mouth.  She then kept stabbing at food adn lickign the ranch dressing and guacamole off her lips over and over. You could tell she was totally relishing every moment of it. Jaosn and I were both tryign not to break out crying.  Never before has Zoe relished licking anything off her lips.  She also sucked on a tortilla chip and took a bite of one, she coughed a bit on that one, but dealt with it OK.  What's funny about all of this is that the last two days she has been rather fussy (for Zoe) and her skin has been kind of blotchy all day, she has seemed tired and not herself (understandably).  As soon as she started licking the ranch dressing and loving it, she seemed fine, the rash disappeared and she was totally happy the rest of the evening. She fell asleep easily for the first time in days.  My mom was sayign that it was proably a poad of stress that disappeared.  We'll see what happen tomorrow, but for right now this is the most exciting thing we've ever seen when it comes to Zoe eating.  We are heading over to Seattle tomorrow for another play picnic with a little boy who just did a rapid wean and is now almost entirely an oral eater- can't wait to see what she does!  Thanks for all the prayers and well wishes.

Day 3 of Zoe's rapid wean:   So far so good, she is getting half the calories and volume she usually gets per day.  i heard her tummy growl for the first time ever yesterday!  She is sitting in her high chair 4 times a day for 30 minutes each time and playing/ touching food.  She loves playing with whipped cream and nutella.  She likes squishing avocados and blackbeans with her fingers.  She isn't eating anything yet, but she is willign to have food on her lips and has swallowed a tiny bit of avocado.  She does, however, think that black olives on her fingers is hysterical!!  Wish us luck this weekend while we roadtrip to Portland for a NICU reunion and to meet up with some of Zoe's nurses.  We might have a very cranky, hungry baby on our hands!

Lunch: Day 3

We've had a busy few weeks lately.  I came across a link on one of the feeding groups I'm in to how tube weaning is done in Germany and Austria.  there is a clinic in Germany run by a Dr. Markus Wilken where they do a two week intensive wean program, kickstarted by over the course of a week cutting out all caloric intake and thereby making the cild hungry.  Zoe has never been hungry in here entire life, she has no idea what hunger is and therfore no incentive to eat.  There was also a link to a blog of a mom in Seattle who did a home weanign program with Markus and within 2 weeks, her 15 month old son went from 100% tube fed to 100% orally fed with the exception of a few ounces of fluids at night.  AMAZING!!!  Markus actually came over from Germany and spent his vaction with this family and a few other kids working  on tube weaning.  A big part of his practice is what he calls play picnics, where a few tube fed children sit around and play with all sorts of textures and tastes of food with no pressure to eat at all.  Food is just there to play with and if it gets eaten even better, but there is absolutley no "spoon to mouth" action.  He also did a lecture at Seattle Children's which jason and I watched one night, which is incredible.  i immediatley called Zoe's OT at Children's and set up an appointment to go in a talk to her about doing some sort of home based rapid wean program.  We go in tomorrow.  I also got in touch with the mom whose child just weaned and we had a play picnin last Friday with her son and a few other tube fed children.  ZOe had a great time.  Zoe got the OK from her cardiologist, pediactrician, her SLP,and her OT to try something like this, so hopefully tomorrow we can set up a plan and give this a go.  She also starts a once a week feeding group today that I think will  be really helpfult o her.  I have also been talking to some Bainbridge moms about setting up a time once a week or so where some toddlers with feeding issues can get together an have play picnics. 

The following is the link to MArkus' lecture at Seattle Children's.  (heads up: it's 2 hours)

mms://seattlechildrens.wm.internapcdn.net/seattlechildrens_vitalstream_com/Rehab_5-27-10.wmv

The following is another Seattle Mom's interpretation of her impressions on how tube weaning is done is Austria and Germany and a few websites that have more good info. It is all copied directly from her blog.

I spent the first two weeks of May in Europe (by myself!! thanks to my parents' flier miles and total support). In addition to hanging out with my best friend, I visited Markus Wilken's hospital-based clinic in Darmstadt for two days, and then spent 2.5 hours with Professor MDS in Graz. Both places do rapid weans, in which tube-fed calories are reduced over the course of a week down to 50% intake (and plan is adjusted further based on what happens). Their success rate (for increasing oral intake and for weaning kdis) is very high. And they have published research.

A crucial thing to keep in mind is that the healthcare system there is fundamentally different from the one in the US, although it did take work for the government insurance to be fine with paying for intensive treatments.

Darmstadt
Their approach/philosophy:
1. Perform diagnostics to see if a wean is possible (typically this is 5 days inpatient). If yes, work with the family to assess the psych profile and limits of where they are; families usually return for a 2- to 4-week inpatient wean.

2. Choose techniques from their vast toolbox that are appropriate for the given child and family.

3. Work as a team (2 psychologists, a GI, 2 SLPs, and social work) that meets daily/constantly.

4. Goal is to teach the family how to feed their kid/how to be with their child around food. This might mean a total wean, or it might mean tube feeding management – whatever is possible for *that* child to do.

5. Weight gain over time IS important; weaning at all costs is not the goal.

6. You don’t see a feeding disorder until tube feeding is stopped: tube feeding, by keeping the child full and not needing food, covers up the issue. (I had to let that one roll around my head for a bit… but it makes perfect sense!)

7. A family with a tube-fed child has been through medical trauma of one kind or another – acknowledge and treat.

8. Hunger = stress. Decide how far to go with letting child be hungry, so that stress does not overwhelm progress.

9. There must be a team approach so that everyone is aware of and treating (if necessary) medical, psychological, and functional (oral-motor) issues at the same time. (For example: you can’t do feeding therapy if the child has untreated reflux and screams in pain at food.)

My observations:
1. Markus does his therapy/evaluations by getting down on the floor and truly playing with the child. This is not “faking it” play, but a true fun time (although he is taking detailed mental notes the whole time). He also engages the parents (usually mother) and gives guidance on how to relax around the whole eating situation.

2.  Approach is completely, completely individualized to the child and the parents. From the therapy sessions I was privileged to observe, no two were the same.

Graz
Here I was lucky to spend time chatting with MDS in a café. Here are some quotes from Professor Dunitz-Scheer, as they best illustrate her fierce (!!!) commitment to children and their dignity. It’s a much more dogmatic, to me, approach than what Germany does, but it has worked for many hundreds of kids:

1. Overuse of tubes is medical child abuse, plain and simple. (Try an NG on yourself – the irritation/pain never goes away.)

2. The earlier a wean can happen, the better for the child. [no age limits!]

3. Nothing is done by force. Nothing.

4. Watch the feeding *before* you do any further testing. Nothing happens without detailed observation first.

5. 90% of kids who vomit are overfed by volume by at least 30% [!!! Holy crap!!!]. It is amazing how little kids actually need.

6. 50% of swallow studies done overseas can be thrown out, since they are performed by radiologists who don’t know how to work with kids. We do our own.

7. Germany, Austria and Switzerland recognize tube dependency. Mitch Katz, MD, is an adopter of the Graz method. He is at the Children’s Hospital of Orange County. http://www.choc.org/chocdocs/profile.cfm?pid=59

8. Oral intake does not happen in a predictable curve up once you stop/reduce tube weaning. [In other words, it’s not  100% tube, 0% oral, then 50% tube and 50% oral, then 25% tube 75% oral until 100% oral, but there is a long period where the child takes in just a little bit… until the true hunger kicks in and the oral levels SHOOT up. Expecting oral intake to immediately match what has been taken away from the tube intake is completely unrealistic).

And from both Germany and Graz...
-- Watch, Wait, and Wonder [Wonderful!].
-- Use of the Play Picnic/Baby Picnic, where kids get to interact with food in a fun setting with NO goal that they eat. It is just playing with food (if they try something, great, but there is no clapping or encouraging or coaxing. Parents chat and play, kids play, food gets thrown, etc.).
-- No age requirement!

Here are some key differences between those approaches and ours:

1. Again, with a few possible exceptions, the programs in the US are *behavioral* based, and as such they have age requirements that the child be at least 18 or 24 months old.

2. No one (we know of) in the US espouses principles of “self-regulation” (where the child decides what, when, where, and how much they eat).

3. The US does not have programs where kids get to interact with each other.

4. No one in the US has weaned hundreds of kids and has published research about it (check for both Graz and Germany)

5. This is an obvious one: how many hospitals do a 5-day diagnostic work-up? And what insurance would cover it? Sigh.

6. The one-hour-a-week (“spoon in the face” as my friend calls it) therapy does nothing for most kids, and sets some back.

7. No recognition of trauma as a symptom for kids and parents.

8. No use of force or coercion, EVER (as opposed to Kennedy Krieger).

9. In general, people in the US are completely freaked out by the idea of significant calorie reduction. Also, the focus here is on the magical numbers of mL a child is reqired to be getting. In Europe during a wean, attention is paid more to a child's output, demeanor, and other signs. The kids are very closely monitored (daily pediatrician evaluations) but there is not this clinging to a "must have" number of ounces.

This is not quite as organized as I’d hoped, but maybe it can be a starting point. looking back on Markus' lecture in Seattle, and just from reading people's stories, I did not struggle with oral aversion as so many of you do. What amazed me was the deep understanding that Markus has of the issues of aversion and fear and other "bizarre eating behavior" -- he comes to them by looking at things through that child's eyes, and bases his treatment on that.

Other online places:
www.notube.at: the Graz program

www.ippec.org: Markus Wilken and Martina Jotzo’s page

www.thecrunchyandthesmooth.com : blog of a 13 month-old who was treated at home by Markus (and who is now *eating*!!! Yay Heath!). Includes links to research and resources.

www.franklyfrankie.com: amazing story of a family who did an intense wean on their own, at home, with love and courage. This was a two-year-old who had never eaten/drunk a thing before.

www.lifeandtimesofstella.com : blog of a mom who weaned her daughter via the Graz online “netcoaching” method at 4 months old. Links to additional resources.

And on a completely different note.  We went to Spokane this weekend to visit some friends of ours that also have a CDH baby, Maddie.  It was our longest road trip yet, but Zoe did great.  Maddie is 7 months old and has overcome the most incredible difficulties, but she is the most mellow happy child.  her smile is amazing!  It was great to catch up with everyone and just let  the kids play together for a while.  We are heading to Portland next weekend for a NICU reunion and to catch up with some of Zoe's nurses.

Chasity, maddie, Zoe and I

At Molbak' snursery with Margi(Mimi) a few weeks ago.

Jason, Zoe, Ashley and Ethan on Tee lake at my parent's cabin a few weeks ago

Eating pancakes at the cabin

Making forts with cousin Ethan at he cabin.

Just a few pics from the previous weeks I haven't had time to post.  Zoe's had lots of adventures lately.  Zoo trips with her friends  (another CDH baby, his brother and the son of one of Jason's childhood friends).  Trips to the park with Eva and Naomi.  And goofy time in the car on the way to her friend Lily's 2nd birthday party.  Boy, does Zoe love to ham it up for the camera

seeing elephants for the first time

Checking out the leopards

in love/awe with the walrusses

At Battle point park

Frog Rock and ladybug at Battle Point Park

Playing Peek-a-Boo with the Sunday Paper

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!!!!