We've been home for two weeks tomorrow.  It seems so much longer than that though.  We are starting to get the hang of what our days and meals will be like for quite some time.  Naomi still doesn't like drinking and she is getting more creative with her stalling and avoidance techniques.  Her newest being a return of the "I'm going to throw up" tactic and the all new "I have a brain freeze" tactic.  The throw up one is the best by far because what parent wants to clean up vomit but seeing as she hasn't yet, I'm not buying it until she is pale and clammy.  Her tactics do make for some interesting looks though.  Nothing like a little girl announcing she is going to vomit and the parent not even acknowledging it, then telling the child to eat to get you a few stares.  We are learning that this is a long slow process.  Although the program at CHOC jump started Naomi's eating, it will be quite some time before she is eating like her peers.  She went to two birthday parties this weekend and at both parties she ate the frosting off her cake, even though both were at mealtimes and served food.  I did learn my lesson after the first one.  I had figured after an hour and a half of jumping that she might eat half a piece of pizza or at least be thirsty.  Nope about an ounce of Coke and she might have licked the pizza before the extremely efficient teens whisked it away to serve cake.  I ended up taking her to In N Out Burger (the one place she has always willingly ate at) afterwards for her meat patty with cheese and a chocolate milkshake.  So the next day when we had another birthday party I was much better prepared.  I had her drink a Pediasure before we went in and brought some preferred foods with us to give her while the other kids ate pizza.  She wasn't big on the Pediasure until I informed her we would sit in the car in front of Chucky Cheese until is was gone.  It is amazing how fast she drank once properly motivated.

School is a challenge with getting food into her.  Last week she had a low for lunch of 1/4 slice of bread and 2 ounces of chocolate milk and a high of 1/4 peanut butter and honey sandwich, 3 ounces of chocolate milk and a few bites of diced pears.  I was very stressed about it until she went into her pediatrician on Friday for a weight check and she hasn't lost so we will keep trying and check her weight again in two weeks.  I'm still concerned but not nearly as stressed as I was.  We are considering sending her with a Pediasure, the pros are it is 250 calories, adequate fluid and balanced.  The cons, it isn't really food and ideally we don't want her dependent on it.  Sometimes you have to take the lesser of two evils though.

I have been making her lots of smoothies and am having fun with it.  I think we've gone through a dozen avocados in the last two weeks.  We might need to invest in an orchard.  I've also been mixing flax seed meal, coconut oil and lots of other good fats into them and so far she is liking them.

She is still taking the appetite stimulant, periactin, and you can see an obvious change on the days she cycles off of it.  I have started looking into other natural ways to stimulate the appetite though most of them involve drinking eight ounces of various herbal teas before meals, I don't see that working well for a girl who doesn't really want to drink in the first place but in the meantime I'll keep reading and bring whatever I find to the attention of her doctors and see what they think.

We are excitedly planning a "Bye Bye Tubie Celebration" in a few weeks.

That is one beautiful belly!

Home Again, Home Again!

Naomi and I returned home last night.  Our last day in Orange County was a great one.  It started with a wonderful surprise at breakfast.  Disneyland Resort had come to make breakfast at the Ronald McDonald House.  Most weekday mornings breakfast isn't provided so we weren't expecting anything so I was pleasantly surprised when someone called our room and asked if we wanted to come down to breakfast as some people from Disneyland had made it and they had "hats and stuff for the kids."  The hats I conjured in my mind were something along the lines of a Burger King crown but with a Mickey face on it and the stuff was a sticker or something.  We came down to the dining room and it was truly magical.  Each seat at the table had a Mouse Ears hat with the ears that glow and light up in different colors, with the ten hats at each table it was like a mini light show at each table in the dining room.  Then there were lovely baskets of pastries on the tables and the beautiful butter pats molded into flowers.  Once we got over taking in all the tables and just being amazed, we were lead by the Disney volunteers to the buffet that was teaming with beautiful and tasty food, there were yogurt parfaits, beautifully cut fruit, eggs, potatoes, bacon, sausage, Mickey Mouse waffles, Mickey Mouse coffee cakes and I am sure there was more but it was so much to take in.  They even had Mickey Mouse plates for the kids.  The volunteers were eager to feed us and for the first time since starting the feeding program Naomi was REALLY eager to eat.  After we sat they brought us drinks.  Naomi got a really cool Disney cup and I got juice in a fancy plastic cup, a square clear one, not the red Solo cups I had grown used to.  One of the other moms and I kept saying it feels almost like Christmas, it was just so special and so totally unexpected.

The rest of the day was spent cleaning our room and then travelling to the airport, flying to San Francisco and then driving home.  My mom picked us up from the air port and we needed to stop for dinner on the way home.  We let Naomi choose the restaurant and she chose Burger King (and got her paper crown).  It wasn't until hours later when I was home in bed I realized that, that was a momentous occasion.  It was the first time we had bought a kid's meal for Naomi and thrown away less than she had eaten.  I actually cried when I realized that.

Today was our first full day back at home and it was right back into the swing of things....kind of.  Sam has the stomach flu, thankfully he got over most of it before I got back.  I am very grateful to Nana and James for dealing with that.  So only three had to be off to school on time.  I took the big two to school and then went to meet with the principal to talk about Naomi returning to school while Nana took Mary to preschool and Naomi out to breakfast before returning home.  I had a great meeting with the principal and by 10:30 Nana was gone and the house, the kids and all of Naomi's feeding was completely my responsibility.  Full of assurance it would be a great day, I planned lunch and then called Naomi to set out to get Mary at preschool.  Naomi didn't want to go, she didn't want to put on shoes, she didn't want to get in the car and she really didn't want to get into her car seat.  I don't believe she was buckled in the most conventional manner as she had two feet on her window but I did manage to get all the straps latched and she certainly wasn't going anywhere.  The whole way to Mary's school she yelled "NOOO" over and over again.  I was desperately trying to figure out where this day had gone terribly wrong when she wailed. "I just want to go to school.  I want to play with my friends."  To this I could relate.  I miss my friends too.  We had a few minutes to hug before we had to walk across the parking lot and pick up Mary, Naomi refused to talk to her old teachers but I didn't push it.  I prayed the whole way home that lunch would go okay.  It wasn't awful, I've definitely seen worse but most of the praise was for sitting in her chair.  Enough food and beverage was consumed and we ended on a good note (and I might have even made some progress on Mary's mealtime silliness) so all in all it was a good meal.  Afternoon snack went great especially since it was all preferred foods, but I can give myself a break sometimes.  Dinner was pretty good as well, however tomorrow we get to deal with the disappointment of not going to school again.  She will return to school on Monday which allows us enough time to get the at home meals figured out and hopefully tomorrow or Friday I can figure out a short play date or two which will help with her missing her friends so much.

It is weird being at home and seeing all the remnants of tube feeding and knowing that is a thing of the past.  There are syringes on the kitchen counter, an extension that was hung to dry above the kitchen sink, button buddies on the dryer, closets full of supplies, an IV pole in her bedroom, and a mountain of formula in the laundry room.  I need to deal with it all, to send it on to new homes but that is a task for another day.  I am tempted to put Naomi on our bathroom scale but I am trying not to be too obsessed with weight and she sees her pediatrician on Friday so we shall see then how she is fairing weight-wise.  I'm a little nervous about that, I look forward to that milestone when I am no longer concerned about what Naomi's weight is and I can no longer give an exact weight in kilograms and pounds.

Coming home makes it all real.  I have a little girl who EATS and eats enough to grow and thrive.  I don't think I can say that enough.  NAOMI EATS!!!!

Day 20: Leaving the Hospital

Today was pretty low key.  When we weighed Naomi this she has gained weight again, I'm guessing water weight today as she was on clear fluids all day yesterday and she did eat jello and Italian ice and drink juice and Gatorade but not enough to gain weight.  Naomi was released to eat at 8:30 a.m. and I let her pick what she wanted so she got bacon, cheese and crackers, lemonade and an Italian ice, not my first breakfast choices but I figured after a day of clear fluids I'd let her choose.  She ate all the bacon and come of everything else.  After that it was back to our regular eating schedule and mom in charge.  She had her last dose of antibiotics at noon and then was released from the hospital a little after 2.  We're staying at the Ronald McDonald House over the weekend so that we can do a couple outpatient feeding sessions on Monday with all the kids.  We didn't get the crash course in whole family eating yet, Naomi had all her meals through lunch at the hospital and then we were going to take everyone to see "Hotel Transylvania" but Naomi didn't want to go so she and I stayed at the RMH and she ended up having snack and most of dinner without the other kids.  Dinner was a challenge as the foods were mostly unfamiliar ones and there was the distraction of chatting with some friends we made at our last stay here back in May.  Naomi ate all her familiar foods that were offered and a bite of one new food and then all of her ice cream sundae that the volunteer cooks made to go with our dinners.

Day 20. 17.5 kg, not tubie and out of the hospital!

Bye Bye CHOC!

Snuggling with her sister at the Ronald McDonald House.

Day 19: Bye Bye Tubie!

Today was a great day!  Today was a really, really great day!  Naomi no longer has a tubie!  The only extras she has right now is an IV for a few more hours, a few sutures on her tummy and nail polish.  She had a pretty good day considering she spent time in the OR.  She got to play in the rehab gym with one of her therapists instead of having breakfast this morning.  She played hard and had a great time.  It wasn't too long after that we were pleasantly surprised that Naomi was going down to surgery earlier than we had thought.  Her wonderful Child Life specialist and her intern accompanied us down there and they showed Naomi what to expect and kept her happily entertained all the way into the OR.  Two hours later we were already heading back up to the floor and quickly went to our last team meeting.  Naomi watched a movie in her room with the intern from Child Life while James and I met with the feeding team.  The meeting was a very happy one.  Pretty much we all wore ear to ear grins while we discussed that Naomi is more than meeting her calorie goals and is meeting her fluid goals and her behaviors are much improved.  We have some goals to take home and work on, mainly keeping up what we've done here and working towards not needing so much reinforcement and rewards.  After the meeting when we went back to the room, Naomi gave us the best surprise of all.  She was hungry!  That is something she has hardly expressed and I realize she had not had anything to eat or drink in 15 hours but she has been on IV fluids only for three days and never expressed hunger before. The rest of the day was spent kicking back and relaxing and enjoying getting to see Sam, Beth, Elijah, Mary and Nana when they got here this evening.  Am I happy with the program?  Delighted.  Did it meet my expectations? It blew them away!  I look forward to many normal years where Naomi is special because of her fabulous performance of "Twinkle, Twinkle, Little Star," for scoring goals in soccer, for telling the funniest joke, or helping a friend in need, not because of how she eats or how many doctors she sees.  Thank you CHOC feeding team, you changed our whole families lives for the better.  I am grinning from ear to ear and crying big, fat tears of joy.

Tomorrow we get a crash course in meal time management with the whole family as Naomi leaves the hospital.  I hope it goes well but I know we have the tools to solve whatever issues arise, who knows maybe the other kids behavior will improve too!  Thank you all for supporting us through this and I hope to continue to update but not necessarily daily as I have been.

Day 19..  17.3kg and no more tubie!

Last picture with a tube!

Enjoying playing a Dora game on the iPad while waiting to go to the OR.

Ready to go!

Hot and tired in the recovery room.

Day 19..  17.3kg and no more tubie!

Day 18: It Takes a Village

I'm in a bit of shock that our three weeks are nearly done.  Today was Naomi's last day of feeding therapy sessions, tomorrow instead of the sessions she'll be having her g-tube removed and surgically closed.  I came here hoping to leave no longer using the g-tube but I never dreamed that we'd leave without it.  There has been a lot of smiling today.  I am so proud of Naomi and the hard work she has done and I'm proud of James and myself too, this program is amazing but it is HARD WORK.  I think James had a tougher day today than me as Naomi hasn't decided that he means business when it comes to meal time and she pulls all sorts of stalling techniques on him and he hasn't had as much time to perfect them but I do have faith that he will.  We still have work to do with Naomi to get her eating to ideal but it all seems so manageable now.

Naomi and I both are very excited not only for her tube to come out tomorrow but to see Sam, Beth, Elijah and Mary.  Neither of us has seen them in three weeks and we miss them.  Last night Naomi was asking if the doctor's was open at night so they could take her tubie out and she could go home.  It's the first time since we've been here she's really expressed homesickness and it made me sad.

As we wind down and finish this program I am overcome with so many emotions.  Even just six months ago we began to falter in our belief if this day could ever come.  One thing I know for sure, we wouldn't be removing Naomi's tube tomorrow without so many people who helped us get here.  There are so many to thank.  First our families who have loved and supported us in so many ways, praying for and with us, watching the kids while Naomi attended her many medical appointments, moving into our home while Naomi was hospitalized, always believing in us, making difficult phone calls for us, paying for medical treatments we couldn't afford and accepting Naomi just the way she is but always believing she could be so much more.  Then there are the many medical professionals, her doctors from the family practice one who delivered her, to her pediatricians, and all the specialists we've consulted with over the years, the ER doctors, the nurses, the Child Life Specialists, the paramedics, the CNAs, the medical assistants, phlebotamists, x-ray techs.  Her therapists who probably spent more time with her than any other medical professional.  First, Paula, the OT at UCSF who helped with Naomi's first swallow study and opened my eyes to how much eating is a sensory experience and was our first feeding therapist, to Monica at CPMC's feeding clinic who told us that poor eating is usually a web of problems not one single thing and sent us down many yet unexplored paths, to Stephanie at CPMC who worked with Naomi for over a year and took a girl from calling a couple of licks of food amazing success to being 50% orally eating and finally here to the amazing team of therapists here at CHOC who have worked with Naomi, James and I so faithfully these last three weeks.  But it doesn't end there, I've been supported by a huge network of other parents who "get it," and have kids that also struggle to eat.  I love my monthly meetings with the moms (and rare dad) at the San Francisco Bay Area feeding tube support group.  Thank you especially to Liz and Judy who even though their children have weaned from the tube they continue to show up month after month and give us all that glimmer of hope that it can happen for us too.  Thank you also to the online support from the Feeding Tube Awareness Foundation, www.blenderizeddiet.net that opened my eyes to feeding Naomi real food through her tube and allowed me to meet Eric Aadhaar O'Gorman, a man who despite his debilitating illness, did so much to make sure everyone with a feeding tube had as much information available to them.  He told me what my toddler couldn't what it felt like to be tube fed and how it felt to be overfed and how different foods really could feel different.  I only with that you could be here Eric to cheer with us in this.  And Jamie Kruiznenga and the Pediatric Feeding Disorders Forum on Facebook.  I am quite sure that is where I learned about the program here at CHOC and that is where my most enthusiastic cheer leading has come from.  Our church family and MOPS group who has prayed, and prayed and prayed for us, even when I doubted God, they never did.  They've loved us beyond human possibility, made meals. given hugs, sent cards, cried with me, lifted me up and read the words of mind that my lips never spoke.  The many schools and all in them that have loved all my children and comforted them through the crazy times that have made up the last five years.  All the friends who have been cheer leaders, baby sitters, dinner cookers, patient listeners, booty kickers (when I got lazy), role models and most of all unconditional in there friendship and support.  Two friends I have never thanked properly for propping me up through the lowest of lows.  Nancy Goble, I could never have survived that year when Naomi was one without you.  I doubt Sam and Beth would have ever been on time to school without you and they might have accidentally been left there afterwards if it hadn't been for your faithful rides.  Your friendly smile and your willingness to give while receiving so little in return is something I treasure.  Tasha King, I am at a loss of words to express exactly how much your friendship has meant to me.  You listened to my tears again and again.  You helped carry me through some of the worst weeks of my life.  You pulled me out of my house when I just wanted to hide, you are as faithful a friend as I have ever had.

Finally I want to thank Samuel, Bethany, Elijah and Mary.  You each have given up so much so your sister could have what she needed.  You gave up time with your parents, you've given up space in your closets, you've given up having friends over for playdates for months at a time, you've been the only child whose parent isn't at a school event, you've given up vacations and the best seat in the car.  Mary you've given up that special time when as the baby you are the center of your families universe.  Those things I can never give back to you but I can say you are the most beautiful, compassionate children I have ever known and I am grateful to be your mom and for your love for your sister.  Each one you, Naomi included, has done great things and you will go on to do many more great things because you are amazing people.

We have so much more than a village, we have multiple villages and thanks to all of them we are here and the view of the future is amazing.

Day 18. 17.3kg and nothing through the tube!

Loving some macaroni and cheese with peas.

Her last day with tubie.

Staying up late watching movies.

Day 17: Speeding it Up!

Today was another great day!  Naomi ate like a rock start and daddy is having a steep learning curve in dealing with her mealtime behaviors, she is still an expert in stalling but she is eating and drinking completely normal portions for kids her age.  She still needs lots of coaching but I am hopeful that she will before too terribly long be eating with direction that is typical to what her peers need.

This afternoon the surgical nurse practitioner came by to chat with us about Naomi's g-tube removal and we've changed plans again.  A really good change, instead of next Friday, Naomi's tube will come out this Friday, in two days, before she leaves the hospital!  This means she'll miss her last day of feeding therapy but everyone agreed she doesn't need it.  At this point the only help, feeding wise, they might be able offer is in helping with meals with the whole family and possibly some tips on getting her to eat again after surgery when she isn't feeling so hot.  I am a little anxious but mostly just excited.

I spent a little bit of time today taking a trip down memory lane.  I was reading some of my old posts on Naomi's Caring Bridge site.  I read one post about an old GI doctor telling us that she would have her tube until she was at least seven or eight and going home and crying since my baby was only two, I couldn't imagine seven or eight, I still can't.  I read a post from two and half years ago about Naomi going to feeding therapy and us working with blueberries and how excited I got because she didn't freak out that they were on the table in front of her and for the first time she willingly let them touch her face, she squished them in her hair, and some of the juice ended up in her mouth and a blueberry did too, she didn't eat a thing and I was elated!  What a long way she has come!  Just 17 months ago I wrote a post about being excited that she drank half an ounce in one sitting, today she drank at least 7 ounces at every meal.

I shed tears again today, that seems to be my theme this week and they were very happy tears.

Naomi and I were looking at old pictures of her on my Facebook today.  She really got a kick out of us sharing the story of how she got here, her story.  At the end I told her about the one doctor telling us she would have her tube until she was even or eight years and she smiled covered her mouth and giggled and said "We really tricked her."  Yes we did, my dear.

Day 17  17.1 kg...nothing through the tube!

Playing her favorite game, Candyland!

Day 16: Some Plans Change

Another day that went pretty darn well.  I shed a few tears last night about our GI doctor leaving Oakland Children's and the thought of starting over and then something dawned on me.  Why is Naomi still being followed by GI?  She has no reflux, she has some constipation but pediatricians all over the world deal with that without GI consult, her weight is good, it is only the g-tube that keeps her with GI.  If we don't have a g-tube we don't need GI and Naomi is proving that she no longer needs one, so I asked the nurse practitioner to come see me today.  She and I talked and she agreed that Naomi doesn't need to keep being followed by GI and she totally understood my desire to not start over again, we talked about taking Naomi's tube out and she agreed that it could be done here.  We discussed the two ways to do it.  One is we simply pull the tube out, just like I would at home when I change it and we then cover it with a pressure dressing and allow it to close on it's own.  The positives it involves no surgery, no anesthesia and is very quick and easy.  The negatives, it leaves a bigger scar similar to a second belly button, it can take awhile to close and it occasionally reopens later and for some it never closes.  The other option is to have a surgeon cut out the stoma and stitch the skin closed.  The positives it leaves a very small scar, it doesn't reopen, it is fully closed right away.  The negatives it involves general anesthesia and all the risks that come with it.  After all this discussion I decided that unless James disagreed that we would go with the surgical route.  It allows us to be done the quickest and with all the granulation tissue that Naomi has at first it wouldn't shock me if we would have to go this route eventually.  The Nurse Practitioner was going to call the surgeons office here to see if there was any way that they could do it next week and I called our pediatrician to see how quickly it might be able to be done at home and we would talk again later.  The Nurse Practitioner called and said the only time the surgeons here could do it was next Friday.  As of right now we intend to stay until early next week and that would mean extending out stay but Naomi and I have nothing going on all of next week as we had cleared out schedules depending on how long the outpatient portion might last.  After a long, very good, conversation with our pediatrician we decided we are going to stay and have it removed!  She basically said, get that thing out!  Naomi is doing great and doesn't need it, and it would be a lengthy process to get in with a surgeon there and let's remove it and move on.  So in the morning I get to tell the nurse practitioner It's a go!  We will go home without a feeding tube!  Oh and I did discuss with my husband too, for those of you wondering and he was part of the decision made!

Daddy got to be in the driver's seat at most of the meals today.  Breakfast was amusing as Naomi pulled some great stalling stunts.  She showed daddy how well she can count.....a lot.  She would have gone on and on had he not finally caught on to her creative stalling techniques.  Not to worry when he figured out that one, she pulled another and another but we still go the meal done and she ate great!  Other than the white milk, that is and will for awhile be a work in progress.  I ditched daddy for morning snack and he and Naomi did it alone in the room.  I didn't give him much choice but knew they needed some time to figure out meals themselves and hey the therapists did that to me the first day, all's fair when your kids have feeding challenges.  At lunch daddy was dealing with car troubles so it was Naomi and I and one of the therapists.  One thing I've been wanting to know is how is this going to work when Naomi transitions back home and to school so I ordered a meal that would closely resemble what I might send to school for lunch with all preferred foods and we went to the busy cafeteria and sat down with my lunch too.  I portioned the food out onto her plate, sat it in front of her and said "Here's your lunch," and then gave no prompting after that to see what she would do.  Well she proved what I already knew.  Naomi can eat great but right now only with one on one prompting.  She was done after eating a handful of Goldfish crackers and some diced peaches and hadn't drank a sip.  She needs much more than that for lunch so I coached her through the rest of lunch and put talking to the school on my list of things to do.  Afternoon snack was daddy and the therapist while I was off talking to the nurse practitioner.  I think they did great and hopefully daddy is feeling more confident with coaching Naomi through meals.

The highlight of Naomi's day was in the afternoon in the playroom when Donald Duck and Caroline Sunshine (Tinka from Shake it Up) came to visit.  Naomi was very excited to share her Shake it Up bunny from Build a Bear that she got for her Birthday with Caroline.  Naomi also got to hang with the CHOC radio folks again this evening and her request this week was "the Itsy Bitsy Spider."  I'll take spider's any day over a fighting 5 year old.  I cannot believe that I haven't had food thrown at me or been hit, other than a missed high five, in four days.

A little aside for all you who have ever had your kid hospitalized, pay attention to the medications your child is given, Naomi gets periactin every night right before dinner.  Tonight when they brought it they scanned her arm band and the med like they always do then handed me the med like I ask them to, so I could give it to her.  I was just about to giver it to her when it struck me that the medicine was light blue.  That wouldn't be alarming except that the periactin has been a yellow color every night that we've been here.  I looked at the syringe the label from the pharmacy had her name on it and said periactin but I told the nurse she wouldn't take it without checking it out.  The nurse called down to the pharmacy and the periactin the pharmacy has is yellow.  They sent up a new dose and are looking into what was sent up instead.  Mistakes happen so vigilance is key.

Day 16  17kg and nothing through the g-tube.

Naomi with Donald Duck.

  

Naomi with Caroline Sunshine.  Naomi loved her and they even shared a game of Candyland.

Mail Call!  Thank you Drohans, Carrascos, Gards and Bradleys!