Day 6 - Joy is Discharged from the Program!

Joy woke up crying at 5am.  Every parent dreads these "alarm clocks" that don't have snooze buttons.  I tried to take a quick peak to check on her but alas, she heard me and cried even louder.  Wonderful (add sarcasm here).  Thankfully, Selena already prepared the formula mixed with a little miralax and on her first gulp, she drank 1.5oz.  I offered her more but she wasn't interested. We also warmed up some of Selena's homemade sweet potatoes mixed with green beans.  She tasted it but didn't seem interested. Go figure.  I also offered her chicken and sweet potatoes but she didn't want to try.  I guess she wasn't in the mood for solids this morning.  I'm also curious to know whether we should be offering a new type of solid this early in the morning. We played around with mommy for a bit and then she drank some more.  In total, she drank 4oz of formula, which is the most she ever drank for her first meal.  Way to go Joy!

Playing with Mommy

While Joy was starting to dose off, Selena and I got into an argument.  I told her Joy drank 4oz but she didn't believe me even after visually inspecting the sippy cup.  She wanted to accurately measure how much Joy drank.  I have a problem with this because everyone, including the Spectrum feeding therapists, Dr. Weich, some of Selena's friends and I have been telling her to calm down with measuring how much she drinks.  She seems so driven for Joy to drink at least 15oz that it is increasing her anxiety and pressuring me to offer the sippy cup more.  I just hope she realizes that this is not the best way for a baby to re-learn how to drink/eat.  Joy is in the driver's seat and we need to stop pushing our goals on her.

After a 30 min nap, she awoke with smiles and giggles.  We let her explore on her tummy.  She really likes carpeted stairs.  Maybe it's because we don't give her enough exposure to carpet at home.  We have hardwood floors that are covered in foam mats.  But at Gabe/Erica's house, we let her roam the area without the mats.

One day she's going to try to climb stairs...but not today thankfully

And of course, today is also the day when Joy had her first fall on the hardwood floor.  While trying to transition from sitting to tummy, she fell flat on her face and started to cry.  Her wrist landed in an awkward position and I didn't realize it but she must have landed on her mouth because blood was dripping out onto my shirt.  Selena was visibly upset and called Jennifer.  She told us to calm down, inspect the wound, and if it looks bad, take her to urgent care.  She assured us that this would not affect the tube weaning process.  Joy was still crying but she finally did calm down about 20 min.  She took a few sips of water and I had to hold her for the next 30 min.

By then, she started to get fussy so we prepared her food.  She's very attentive when we are warming up her solids and mixing her formula.  Despite her fall, she drank 2oz of formula and 1oz of solids (chicken and sweet potatoes, carrots).  Comparatively, this wasn't a lot of food but times like these, I have to cite the 3 Marcus Wilken Rules on eating to remind myself that it is ok when Joy doesn't eat a lot:

1. A baby who is not hungry will not eat
2. A baby who is hungry will eat
3. A baby who is hungry but chooses not to eat...will eventually eat

After a new set of clothes, we gave Joy a cold teether toy (per Dr. Weich's suggestion) to help soothe her mouth and let her watch a youtube video of her favorite book, The Very Hungry Caterpillar.  As usual, she drifted off to sleep in her swing.

Jennifer came by while Joy was asleep.  As I predicted, she officially discharged Joy from the program!  She emphasized all the wonderful progress that happened this past week.  While she affirmed that Joy is an eater and will continue to do well, she also expressed her concerns about us over institutionalizing Joy with all the doctors and therapists. We agreed and plan to limit Joy's exposure to the medical professionals and let Joy develop and experience life as a normal baby. We will be in contact with her everyday for the next week, then weekly for a month, and then once a month for 3 months.  I really appreciate what Jennifer did for us.  She was tough and honest with us in the beginning (pushed us to get rid of one of Joy's feeding therapists) and supportive all along the way.  She's very knowledgable, an amazing therapist and I'm glad we had the opportunity to work with her.  So if you're reading this Jennifer, THANK YOU!

Jennifer Berry and Joy

Good Times!

After she left, Joy had another great meal.  She ate 3oz of chicken and sweet potatoes and 3oz of formula.  Her tummy looked full and I could hear the food swishing in there. Gotta love that feeling when your baby is full of food. She was happy and playful, and in return, we were happy and playful with her too!

Joy took another nap and I ran out to Target to get some cleaning supplies and baby food. I picked the wrong day to shop because the store had no AC.  I was sweating just from walking from one section to another.  Figuring that it had been a long, but successful week with Joy in the feeding program, I decided to treat myself to some ice cream.  Don't I deserve it??

Chocolate and Cherry Jubilee

I returned home around 4pm and found Selena feeding Joy. By now we determined that she eats every 3 to 3 1/2 hours.  She ate 2.5oz formula and 0.5oz of chicken and sweet potatoes.  We also introduced her to turkey and vegetable.  She only had a few spoons but we think she'll eventually like it.

Dan and Deborah Kim stopped by on their way back from Atlanta.  Solomon and Andrea Shin also came to visit too. We went out to dinner at Suldoga in Annandale, VA.  The food was ok but it was also another opportunity to feed Joy at a restaurant.  She wasn't hungry at the beginning but then after playing in her booster seat for a bit, she started to grunt.  I guess she communicates in barbaric when she's hungry. She ate 1.5oz of chicken and sweet potatoes and 1.5oz formula, DESPITE the distractions and being tired at the restaurant.  She is such a trooper.

In total for today, she drank 12.5oz of formula and 6oz of solids.  Another day, another step forward in her recovery.  Our plan is to take Sunday to clean up the house (sorry Gabe/Erica for the mess!) and to get ready to go home on Monday.  We'll have one more dinner outing on Sunday with Yoon and Jenn and then we'll transition to life back home.  Jennifer advised us to move things around at our house, including the high chair. We don't want Joy to remember any of the old negative associations with food. We also don't want to slip back to how we used to feed Joy with high anxiety and stress.

In the end, we are VERY thankful for everyone's support.  Not just the doctors and therapists, but also our family and friends who provided meals, visited, counseled, prayed, financially supported, etc.  I was sharing with Selena today that God really orchestrated everything perfectly and in His time.  Joy wasn't ready to be weaned when Spectrum had their last scheduled weaning in March.  We needed the months in between for Joy's medical issues to resolve, and for the feeding therapy to lay the groundwork for the Spectrum program.  And right when our insurance coverage ended for the traditional feeding therapy, the Spectrum program had an opening for Joy and we were able to raise the necessary funds to secure the spot. All things happen for a reason and I hope that our experiences can help encourage and support others who are going through similar problems.