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!