4 Weeks Home! Update!

 We have been home from CHOC for a month now! Whitney is doing fabulous! Although she has gotten sick last this week. Nothing serious, but her coughing and mucous have definitely had a negative affect on her eating habits.  Who want to eat when they are always coughing and don't feel good anyways!?  I have been tempted to tube feed her liquids during the day but refrained.  I decided to give her little breaks and just let her try to be a typical eater to see what she would do.  A few meals a day though I would still try to push her to drink her pediasure as long as she was looking and feeling okay.  Whitney has throw up a few times while she was sick.  It's a lot of hard work getting her to keep down her calories.  Whitney is still so happy and has lots of energy!  Here are some photos of the past couple of weeks!

I took the kids to the mall and got Auntie Anne's Pretzels and frozen lemonade.  I love that Whitney tried them and enjoyed it!

 

Cameron & Whitney matching!

 

This photo shows Whitney's huge bites from eating her PB&J sandwich! She's not consistent but this was amazing and all her! Whitney also loves apples.

Whitney starting her in home co op preschool! So fun!  Her first day she didn't eat much, maybe a goldfish cracker.  Her second day there she ate a lot crasins! Whitney loves going to preschool with her friends and it's working out very well.  I just ask the parent who is teaching that day to try to track how much Whitney ate during snack time.  I don't expect them to sit down and coach her or anything.  I love that Whitney is willing to snack with her friends and socialize better.

 

 Whitney spills her milk a lot.  It's always an accident but it happens about once day.  This time she accidentally spilled it on her plate then says, "Sometimes I like to dip my sandwich in my milk and eat it." Then she takes a bite and says, "Sometimes, I like to dip my chip in my milk and eat it." She takes a bite of that and then says, "Sometimes, I like to dip my cheese in my milk and eat it."  And picks it up and takes of bite of her soaked cheese.  She really didn't like it that way, haha, and put everything wet on a separate plate. 

 We went to Disneyland!  So fun! Our family had a blast of course. Even Daddy was able to come with us.  We went on lots of rides and watched the parades and fireworks.  Whitney did pretty well with drinking her BKE and eating a little pre-packaged snacks and fruits while in her stroller.  She was not interested in our big meals like noddle soups.  She did enjoy the ice creams we got.  No vomit, no tube feedings, and no formula messes!

Whitney had her Lung Perfusion Scan done this month.  Basically, it sucked.  Whitney was crying the whole time, had to get an IV in her foot, and laid under a huge machine (camera) for an hour.  But I am glad we got it done and got fairly normal results.  Whitney's right lung is small and gets less blood flow than the left lung which also doesn't get a perfect amount because her her narrowed left pulmonary artery.  Her right lung is small because that is the side the hernia was on.  But as long as she is "keeping up" with others her age she is good.  They can't fix it but are keeping a close eye on her heart and lung development.

 

Cameron happy to see me after staying with the babysitter for a few hours.

 

Whitney is getting some time to play outside in between meals!  She loves the park, going for walks, and playing with her family.

Movie Night! They picked A Bug's Life! CUTIES!

String cheese!

 

 Got my BKE's along with all our other feeding tube supplies!

Last but not least, we celebrated Thanksgiving. We had a wonderful time with just our small family.  We tried to not have it revolve around the food, but it was delicious.  Kids watched the parade on tv, played outside, napped, colored and crafted, ate, and took a bath.  Whitney did eat some turkey though so that was amazing! She took a few bites of the small cut up pieces.  We are so thankful for our family and friends and everything in our lives that we have been blessed with.

 

2 Weeks Home! Update!

We have been home for two weeks now!  And are still so grateful that we were able to attend CHOC's inpatient intensive multidisciplinary feeding program! Whitney's skills are keeping up and she is doing pretty good at reaching her liquid calorie goals most days.  We are doing our best to keep up with the eating schedule and applying all the techniques we learned at CHOC.


Our first Saturday and Sunday home from the hospital, we pretty much just stayed home to stick to the routine! On Monday, Whitney had feeding therapy with Emily, the OT.  We basically just went over what we did at CHOC and watched Whitney eat.  The we went to the park! So fun! 

Some meals, Whitney doesn't want to come to the table and others she willingly and happy comes and eats.  She still needs a lot of coaching and motivating during meal times.   I like to give her 'free' time during a few meals a day to just let her pick and choose what to eat, but I do try to get her to drink enough pediasure.  Whitney is still learning how to eat properly, she swallows a lot of air when drinking.  I pretty much have to burp her like a baby after every couple of ounces of drinking.  That way she doesn't 'spit up' aka vomit.  She still occasionally vomits her pediasure.  She sometimes gags on it when drinking or just has a sick look on her face and says she needs to barf.  It's so sad but she is still working on it and still likes to drink the pediasure.

We are only needing to tube feed Whitney at night.  Eight ounces (240mls) of formula plus 6oz (180mls) of water.  Pump Rate is 125, Dose is 400. I know it doesn't quit add up but remember that we need to prime the tubing (about 10mls) and there also needs to be a little extra at the end so that the pump doesn't beep in error with a 'No Flow In' so that's what the other 10mls is for. We start it around 9pm, when she is fast asleep.  Whitney also gets her meds at this time.  It's so cool and interesting to not tube feed her during the day!  Such a weird feeling, and one that I will come to love!

The first week home she kept her up weight really well!  On Friday the 7th she weighed in at 15.1kgs! She will have another weight check next month.  Our second week home Whitney got a little sick and is coughing a lot.  So far she hasn't throw up yet and is doing okay now with her fluid intake.  Praying she gets better quickly and that we can keep up on her feeding skills and continue to progress with her oral intake and meal time behaviors and sensory issues! Thanks all for reading!!

Whitney's yearly check up cardiologist appointment and echo cardiogram.

Whitney's first happy meal ever!  She only ate one apple and that's okay!  She enjoyed the experience! 

Some things Whitney likes to eat/nibble on sometimes are cheese quesadillas, bacon, apples, waffles, noodles (ramen), bananas, tortilla chips and salsa, smoothies, broccoli, chicken nuggets, strawberries, pizza, cereal, teddy grahams, cheese, pretzels, celery, sprinkles, sausage... It's not much and it's not a lot of volume but I think it's great to have a little variety (from most food groups) in her diet.  Definitely still working on it but I usually offer her preferred foods at all meals and only a non preferred foods 1 or 2 times a day.  She does eat more volume and with better bites than before the program but still a very minimal amount is consumed.

We had the opportunity to go to Legoland (thanks to the RMH)!! We had a blast and Whitney drank 3 cartons of Boost Kids Essentials, and snacked on apples and veggie straws! No tube feedings!

We made it to church on Sunday! It was so cool actually being able to feed Whitney via mouth instead of tubie while at church.  Unfortunately she did vomit though! I was so sad! I think it was just from a 'forced burp' and some Boost Kid's Essential came up with it.  She was okay afterwards and not sick.  She still drank some more and had a great time at church!

Oh, and this cool dude turned TWO!!  Happy Birthday Lil Bro!

Thanks again for reading our blog and keeping up on our family!  We really appreciate the support and prayers! We are so proud of our daughter Whitney and love her so much!

Home Again!

I think we are all so happy to be back home! Saturday was a bite hectic with trying to unpack, clean, and stick to the schedule but we did it! Whitney impressed us all at breakfast and did well for snack too. Gramma took the kids for a walk in the wet weather. 

Then we had lunch and after that I had to take Gramma to the airport. Daddy stayed home with the kids. Cameron took a nap and Whitney watched Daddy play mine craft. We are both so grateful for all my mom has done for us these past three weeks and beyond! 

All I wanted to do when I got home was go shopping at Target! So my husband let me and he feed Whitney at 3pm her snack! I felt much better haha! The rest of the meals went okay but it seems like there are challenges at some point during every meal for Whitney. I made cheese quesadillas and turkey bacon for dinner. Giving Whitney preferred foods the first few days back home helps make the transition a little easier. So if you want numbers, Whitney is a about 65% to 75% tube weaned. When we started CHOC's multidisciplinary inpatient intensive feeding program she was 99% g-tube dependent! Now that doesn't mean that she will be weaned this week or even the next. But we are well on our way.  I plan on still updating this blog every so often so be sure to check up on us at least once a month or more!  And like I said almost every meal is still challenging. There are so many complex components to oral eating. She may even regress a bit before she progresses more! It's all part of the learning process. Whitney is getting 8oz of complete pediatric formula & 6 oz of water via tubie every night. I still love my tubie girl and am so proud of her! 

Day 19: Last Day!

Today is day 19! And that means it's the last day of our inpatient stay! It was a good day but I had mixed feelings about going home. But overall I'm so happy to be home.

The day started off with a challenging breakfast with just me and Whitney in the therapy room. The therapist was there too but she sat back away from the table. She only ate a little bit of watermelon and some chocolate Boost Kids Essentials. We're doing good with working through her behaviors and sensory issues but it's still hard to get her to take a consistent volume at every meal. It's something that she needs to do to progress. 

Then for the morning snack with me, Whitney only drank 2 ounces of her BKE and ate two Teddy grahams. She was actually way too excited to do much. Because she was going to dress up as Tinkerbell and go trick-or-treating! So we were both excited for our family to come and get dressed up and go trick-or-treating.  I also started cleaning up the room while we waited.  My husband had taken half of our stuff back to our apartment last night and stayed the night, then he took a test in the morning and drove back to camp CHOC. 

As soon as daddy, gramma, and Cameron came we went downstairs for the big trick-or-treating event. It was huge and very exciting. A little over whelming but still fun.

I'm Mr. Smee! 

Our white board! 

Apparently Halloween is a big deal here! They had costumes available in the playroom, but we brought our own because we knew he would be here for Halloween. Here's Tinkerbell and Peter Pan!

I took a ton of pictures so I decided to just put them in a few collages! There were so many people handing out candy and toys, and even some gift cards and coupons! It took us about an hour to go through the whole thing and there were a lot of other patients there too!

We had one more feeding therapy session before we were discharged! So at 12 PM Thomas and Whitney got to have a meal alone for once! Thomas had the "bug in his ear" and the therapist was telling him that he did a great job and giving him some points. My mom and I left to pack up the room some more. But I came back in for the last 15 minutes to watch the session. I thought Thomas did a great job and Whitney seemed very happy too. I know that Whitney ate a bunch of string cheese but I'm not sure what else she ate. And I also know that she drank 8 ounces of her strawberry BKE! We were so excited to end our last meal on such a good note!

Shortly after that we had our big team meeting and this time Thomas got to come too. It was very informative and productive. We went through all of Whitney's goals and she met some of them and is still progressing with most of them. We also went over our goals for the "fourth week" which is at home where we will be trying to keep to the schedule and making sure Whitney gets the nutrition she needs. We have a lot of follow-up appointment with G.I. doctor, pediatrician, and feeding therapy. Also this week we're going to just stay home and focus on Whitney's eating skills... so one more week without church and preschool for now but next week will go back to normal and try to integrate that into Whitney's feeding schedule.

I love this group photo! Seriously, these people were like my best friends for the past 3 weeks! This amazing multidisciplinary feeding team is like a family. From top to bottom left to right we have Amanda, Tessa, Jessica, Sarah, Robyn, Dr. Katz, Cindy, Whitney, Jen, Erin, and Audrey! Missing is Alyce (one of the dietitians) and Amber (the "conductor").

We finished packing up our car and we all piled in and left the building! Unfortunately it was right during rush hour so what usually takes us an hour or less took us over three hours to get back home. Whitney ate a lot of some kind of fruit stick in the car because she was hungry! So fun! Both kids took a nap and eventually we made it back home! Our apartment is covered in our luggage and all the fun extra things we brought home. Whitney did pretty good that night... we asked her if she wanted chicken nuggets or pizza and she chose pizza! So daddy went and picked it up! She did a good job eating the pieces I cut up for her and she also ate an apple and drank a lot of BKE. She also ate a little piece of a candy necklace later. It's so nice to be home and to be free to do what we want! It will definitely take some time to get used to the schedule but it will actually be a little bit easier then tube feeding her five times a day! And I'll use that time to prepare her more meals!  Please pray that our family can keep up the skills and progress at home that we learned at camp choc. And that Whitney will eat and drink more

Weight: 15.0kg

Day 18: Going Good

I can't believe we are going home tomorrow. It's been a really long journey and it's not over yet! But it's going good today and I'm so happy for Whitney and her accomplishments. I'm excited to go back home and figure out our own routine and help Whitney to learn more. Excited to be with my family and make meals and snacks for us to eat. The therapists have been telling me to think about how things are going to be at home and try to have a game plan for the next week. I am just so grateful to have been able to have this opportunity to be here at camp CHOC and to help Whitney learn how to eat. I'm grateful for my family and my friends who have helped us so much along the way. We really appreciate all the hard work that Whitney's therapist throughout her life have put into her well-being. We are so grateful for the doctors and nurses with their knowledge and skills to also help us. And of course we acknowledge Heavenly Father's hand and all the good around us. 

For breakfast, the therapist took Whitney and I to a cafeteria in the St Joes hospital across the street in the basement. We went in a quiet room that was still part of the cafeteria, kinda like restaurant table seating. Whitney had fun and did well. She tried Raisin Bran Cereal for the first time and loved it. We did a sticker chart again to help motivate her. 

Then she painted a picture and we got ready for her little party. She had spilled a lot of chocolate milk on her outfit during breakfast so I changed it.

I had asked Icing Smiles if they could help us out with some cup cakes! They asked Shauna at Curious Cupcakes to do it for us! The cupcakes were beautiful and delicious! Only 4 of the team members came though. And Whitney only licked the frosting a few times. 

"We Believe In Whitney"

Little brother Cameron devoured his frosting. Best part I guess.

I love my collage with Whitney and Shauna surrounded by the cupcakes! 

For lunch we had Daddy and Cameron in with us. I started out leading the meal while daddy took care of Cameron. It was a little bit overwhelming again for Whitney but she did her best. After about 15 minutes Cameron was finished eating so we excused him from the table and left to go play with Gramma. Then I let daddy take over the lead of the meal and I gave him the "bug in the ear" so he could listen to the therapist. He did really good and I'm glad he got the opportunity to do that. We did the sticker chart again for Whitney and she really seems to like that. We tried to get her to take bites on her side teeth and not just small nibbles with her front teeth.

Then we went to turtle talk one last time. It was fun and we're going to miss it. Then Whitney watched Peter Pan because she's really excited to be Tinkerbell for Halloween tomorrow. Daddy took Cameron home this time while Gramma stayed to be in on the snack session.

Snack time was interesting. I lead the meal and therapist was there to help and Gramma was there to cheer Whitney on and be a good model. Started out with Whitney refusing to even lick a piece of broccoli. Which is not a new food and she is actually ate it a little bit a few times before, so my request was not unreasonable. But she did good drinking and really wanted to eat her goldfish. In the end it went really well and we got to teach Whitney some new things. Gramma also learned a lot too and she did really good during the meal being a good motivator and example. 

Later Thomas picked my Mom up and then went back to the hotel. Thomas has to go back home and has to go to school in the morning to take a test and he will come back to pick us up tomorrow.

When our dinner tray came Whitney was happy to sit down and get started. We ate some sun chips, watermelon, juice and a new food… A hotdog! At first she was just eating the bun and then I asked her to try the hot dog and she said she loved it and then she took a lot more bites of it and kept going when I didn't even ask her to do anything. It was really fun watching her enjoy it.

After dinner, we watched Wreck it Ralph, so we had her snack on her bed. She did good eating a couple Ritz bits sandwich crackers, couple apples, and some drinks of her chocolate BKE.

Photos of the Day: throwback Thursday Halloween on the right is the year 2012 right before Cameron was born and on the left is the year 2013!

Weight: 15.0kg