Myla Learns to Eat: Weaning Day 4

Difficult. Stressful. Impatient. I guess these words partially capture our day today. Myla recieved her 300 mLs overnight which ends at 3am. She did not get anything in her tube again until 1pm. That was 10 hours or so without a substantial feeding. She was a little fussy but not as bad as yesterday; however. her eating only mildly improved if improved at all. We had a Skype session this morning with Dr. Marcus Wilken, who is a world renowned expert in this field. He has been nice enough to do skype consultations with us free of charge as needed. He is from Germany but doing a tube weaning in Washington, DC, this week. He suggested that after tomorrow, we pull Myla's completely. This will let her feel hunger without the discomfort of having the NG tube in. This suggestion really made us nervous (even though we could re drop the tube at any time).

Lindsey and I are holding up okay. There are moments of great stress. Today was the first day that tears made their appearance. Myla is very interested in food but isn't doing much swallowing. She had a play picnic with mom mom and pop today, which they loved. She also got a lot of loving from the same. We started to get a bit concerned about dehydration today; however, MJ came through at the end of the day with 4 piddle diapers (probably more, but with the overnight diaper its is really hard to tell) and 1 nasty.

Luckily the night end on somewhat of a positive night with Myla taking a good amount of water from her cup and really enjoying it. We are beginning to think that she just hates the taste of her formula (I don't blame her). We hope to get some results from her allergy testing tomorrow so we could see if we could start using a milk based formula rather than the hypoallergenic grossness that she gets now. I would say she probably took about 3 ounces of water by mouth today and 1 ounce of formula and a minimal amount of purees. She ate some puffs, some fruit loops, some vegetable puffs and some bits of mom moms apple. I guess we need to measure success in bites.

Lindsey and I killed about bottle of wine. My guess is that there is an inverse relationship between the amount Myla eats and the amount her mommy and daddy drink.

Myla Learns to Eat: Weaning Day 3

Its official. Myla feels hunger. We know this because we took away 30% of her feedings today and she was not a happy camper from about 10:00am to 2:30. She had not received anything substantial through her tube since 3am the previous night. Myla was very clingy, fussy, and even though she was sleepy, she skipped her morning nap because she wouldn't stop crying. We have read that it takes anywhere from 3 days on for little ones to start making the connection between their hunger and how to get rid of it. We hope this comes sooner rather than later. Today she ate some fruit loops, banana puffs, vanilla baby cereal puree, bites of my apples, sips of water and sips of formula. The highlight of my day today was our daddy-daughter play picnic. Mommy went out to lunch with her friends so daddy picnicked with Myla. During this picnic, we took turns feeding each other fruit loops. Myla doesn't really swallow them, but accepts them in her mouth, crunches them, and then typically spits most of them out. Tomorrow we cut another 10% of her feedings..down to 60%...we prepare for more fussiness, but we believe this is how Myla is grappling with her world turning upside down. It is a necessary step in the process and we are here to love her, hold her, play with her, and ensure that she knows that mommy and daddy will not let anything hurt her. For those who are counting, she had 5 wet diapers and two nasties today. Plenty hydrated.

Myla Learns to Eat: Weaning Day 2

Myla enjoys her junk cereal; mainly fruit loops. When I was a kid, I loved sleeping over friends' houses because their parents allowed them to eat sugary cereals. The rule in our house was that if we ate Frosted Flakes, they would have to mixed with Corn Flakes. If we at cocoa crispies, they were to be mixed with rice crispies...you get it. We are promoting the eating of junky cereals, and I love it. Today, she actually crunched one of them and swallowed it. Most of them she spit out, but she did swallow one as well. We were so proud. Not much else was new in terms of her eat, just a lot of exploring, playing, tasting, etc. Her feeds were cut by 20% today. She was a little more fussy, a little more clingy, which makes us think, she was a little more hungry. We are expecting a couple "rock bottom" days before we have a breakthrough.

After we learned two weeks ago that our GI doctor was "on board" with our weaning plan, she barraged my lovely wife today with questions and concerned about the wean. She was concerned about Myla's hydration levels during the wean, stating that she needed 700 mLs of fluid per day. This number essential takes her weight in Kg and multiplies it by 100 mLs and there you have it. There are other methods to measure hydration. There is a different chart that I found that indicates she needs about 400 mLs and still others, including many doctors, are more concerned with output rather than input. If she is having wet diapers, tears in her, saliva, etc, then she is hydrated. According to our GI doc, we cut to 650 mLs today, she wasn't hydrated. She was plenty hydrated. I digress.

My assumption is that tomorrow will be even more difficult for Myla. We are cutting 30% tomorrow, but the good thing is that we will both be home at certain parts of the day. I can't wait to watch Myla explore her new world of tastes, textures, smells, etc. What an exciting and scary time for us.

Myla Learns to Eat: Weaning Day 1

Today our family took a leap of faith. Our leap begins with a belief in science, Darwin, and MJ. We began the process of weaning Myla from dependence on her NG tube. Today, we cut Myla's feeding through her tube by 10%, which is about 2.5 ounces today. We didn't expect to see a big difference in her eating behavior today, and we didn't. I think that the biggest change is going to come with Lindsey and I. We have been so focused on calorie counting...calories in and calories out (yes, there have been times when I have caught her vomit in Tupperware and measured how much she lost...gross). We have been weighing the amount of baby food she takes by spoon, and Lindsey has been keeping notebooks of data to try to help us find out patterns in her vomiting. The only patterns that we have found is that we are consistently tired, stressed, angry, and irritable. The emotions are strongly correlated with the numbers of vomits per day. Today, the measuring, at least to the extent that we have been, ends. Today, we introduce Myla to food in an environment with little stress to do anything but enjoy the feel, smell, texture, and hopefully taste of foods. We don't think this is going to be easy; however, if we stick to the plan, we feel that Myla will learn to eat.

Myla did great today. She and her mommy had a play picnic. She explored sweet potatoes, banana yogurt, Ella's kitchen's "the Red one," cheerios, fruit loops, rice crispies, and a variety of spoons, cups, bowls, and plates. Some of it ended up in her mouth, but most of it ended up on her and the floor. This is completely expected based on our reading. We are so happy that Myla is so comfortable exploring food in the manner. We have read horror stories of little ones with such food aversions that watching a cartoon on television with a character eating makes them vomit. Myla made a big mess and and I am so proud of Lindsey for not intervening (Lindsey likes things clean...real clean). She also took about 20 mLs of formula by mouth from a sippy cup. We are very proud of her because that Nutramigen is awful. Tomorrow we cut another 10% from her feedings and continue to attempt to read her cues. She will get hungry, which means that she will get fussy. She will have access to food and the goal is for her to reconnect that feeling of hunger with the joy of eating.

I hope to be able to update the blog each day of this new endeavor. Wish MJ (and Lindsey and I) luck. Myla's drive to hunger will kick in.

A Proposal...

Dear Friends and Family:

As many of you already know, Myla’s recovery from open-heart surgery on December 22^nd has been quite remarkable. Our little Bean has more resilience than her mother and I combined! Many of you also know that the remaining battle that the Roth’s have to fight involves feeding. At this point, Myla has been seen by 3 different feeding therapists and has had 4 different feeding evaluations. Recently, her intake has gone up modestly (she was taking about ½ Tablespoons of baby food per day, and now she takes about 3 Tablespoons per day); however, we feel that we have hit a plateau. Myla continues to struggle to tolerate her tube feedings consistently. She vomits about two times a day. Words cannot explain how emotionally deflating this is. We are now exploring other methods to encourage Myla to become an autonomous eater.

I have been doing a great deal of research regarding a method that was developed at a children’s hospital in Graz, Austria specifically aimed a weaning infants and children off of their feeding tubes. This method involves gradually decreasing Myla’s tube feedings about 10% per day until she is receiving about 50% via her tube. While we are doing this, we are allowing Myla to explore the world of food and drink in a self-directed, non-threatening manner. As she learns the joys of eating, we will continue reduce to her tube feeds until she no longer requires them. Sounds rational, right? We hope to hone in the human instinct to eat and reconnect Myla with the peace and joy she received from eating early on in her life. Of course, there is some risk involved here. We do expect that Myla will lose weight in the short term. We also have to be on constant lookout for signs of dehydration.

Lindsey and I are reaching out to you for support. We have read the research and immersed ourselves in the stories of other children and families who have engaged in this type of wean. We feel that we are ready; however, we know it will not be easy. There will be times when we will be overcome with fear and anxiety. There will be moments of sadness and frustration, but we hope all of these negative emotions will be erased by Myla’s spirit and perseverance.

We will definitely be calling on you for emotional support during this time. If you have babies or toddlers, we may call on you and your children to spend sometime with us at one of our “play picnics,” where Myla and friends can touch, smell, play with, roll around in and hopefully eat some food (make sure you bring a change of clothes). If you don’t have babies or young children and have some time/energy to help out, there will be many dishes to be done, carpets to be cleaned, and laundry to be turned over. There will most likely also be a need for shoulders to cry on. If you are not local, perhaps you have some good ideas for fun food projects that could be edible for a 9 month old or perhaps you know a recipe for a tasty puree that Myla could handle. We are not focused on the nutritional value of the foods at this time.

If you have any desire to be a part Myla’s journey to becoming an eater, you can email me at scottrothpsyd@yahoo.com or Lindsey at lindseym523@yahoo.com.

Here is a great blog about another family that successfully weaned their little girl. http://www.franklyfrankie.com/

PS...below is the proposed plan.

1. Stress-free play picnics everyday. Myla can explore food with her hands, smell it, and taste it.

2. 4-5 feeding sessions where Myla is exposed to foods in a stress free way. She can refuse but when she accepts, verbal excitement and praise are given.

3. Can start offering food/drink on the first day of the wean or wait until day 3.

Indicators for Stopping Wean:

1. Weight loss of 10% initial body weight. We will do weight checks 1x per week.

2. Signs of dehydration

3. Parental Decompensation

Pre-Wean	Day 1	Day 2	Day 3	Day 4	Day 5
105	65	25	X	X	X
180	180	180	155	115	90
180	180	180	180	180	160
180	180	180	180	180	160
180	140	100	80	20	X

Amazing Things..

So here we are... one month and a few days post-op and we have seen some amazing things. Our Myla June is doing very well. Some cool developmental things that most parents find fascinating, we find to be incredulous. She pulled herself up a couple of times. When she is standing, she now holds onto things for support and shuffles herself around. She actually made it around our coffee table twice today...commence baby proofing. She is doing some great imitation of movement. She waves hello; however, she typically uses her full arm and most of her upper body. She can do clap hands once in a while, and with her favorite football team playing some great football, we are working on "touchdown" for the big game. Myla's main mode of transport these days is her rolling. She made it completely across our living room to the door or more importantly, to where her toys are.

Lindsey has single handedly transformed our basement to a baby friendly playroom fresh with toys, foam alphabet/number tiles (thanks mom mom and pop), and bins for storage. I mainly stayed on the couch in my pajamas when this happened and consulted. I am an excellent and lazy consultant.

On to some frustrating and exciting news....We are strongly considering a full-time, intensive day treatment program to work on Myla's feeding. This is both exciting and scary. I wish we didn't have to "reteach" Myla how to eat, but now that her heart is fixed, there is no medical reason that she shouldn't be eating. She has good days and not so good days. A good day is when she takes about a tablespoon of baby food without a struggle. A bad day is when she is actively refusing to take anything, crying, pushing the spoon away, and turning away. As I have mentioned in many of my posts, the feeding tube continues to wear on me. As much as it was a means to an end to help our Beany grow and thrive, it really restricts our lives. We have to plan food shopping, driving, dinner, and doctors appointments around her feedings. Even though we have amazingly supportive family and friends (Faith Bass, you are amazing for taking on a crying Bean for an hour or so), we always hesitate to ask for babysitter volunteers because we know what hard work it is to care for her...and the tube is still a tube..It still sits in her tiny throat. It moves when she sneezes or coughs, sometimes causing her to gag and vomit. It bypasses the first stage of digestion, which is when saliva breaks down food initially. And finally, it opens....yes...as gross as it is, it can pop open. We typically discover this by a wet shirt, floor, couch with a nasty smell. Its kind of just like having a tiny hole that leaks stomach contents. Nasty.

Anyway, we have an appointment at the Feeding Clinic at St. Joseph's Children's Hospital in Pateron, NJ for February 1st for an evaluation. We hope to be admitted to their 4-6 week intensive day treatment program which is daily from 8:30-4:30. My next blog will be about the roadblocks that we are having with the insurance company when it comes to getting Myla into a different program. Thanks for reading.

Back to Work.....

I guess it was inevitable. A result of Myla June’s amazingly quick recovery was that I had to end my tenure as a stay at home dad and return back to work. My feelings on this issue were mixed, and by mixed I mean 90% sad and 10% excited. As much as I might complain about the frustrations of my job, I do enjoy certain things about it. I enjoy the steady paycheck (which was/is sorely missed over the past three weeks). I miss the challenge of working in a school. I enjoy the collegial/team atmosphere as well. I guess those three things are enough to add up to the 10% of excitement. I was sad to leave the comfort of my home. I was sad to not be able to spend time with my beautiful daughter and catch all of those little amazing things that she does throughout the day. I was sad that I would no longer have the ability give my wife some well-deserved time off, even if it means 30 minutes more sleep, 30 minutes to take a shower, or 30 more minutes to just relax.

My first day back was not nearly as stressful as I feared it would be. This is thanks to my colleagues, who though would not admit it, went out of their way to ensure that I did not have a pile of work on my desk upon my return. They took the brunt of kids in crisis, angry parents, and stacks of paperwork that we deal with on a daily basis. I also came back to an environment of care and concern. I was greeted with “welcome backs” and “I am so happy to hear things went so well.” This was nice.

Myla is almost three weeks post-op, and she continues to thrive. Her scab has completely fallen off of her incision leaving a 2 inch long pink scar. We have a doctor’s appointment (actually 2) on Thursday, and we hope to be able to start caring for her scar with mederma and start some of the scar stretching techniques that we were given at the hospital. We also have our first Gastro appointment. We hope that Myla has gained weight since her hospital stay. Lindsey brought Myla to see Nancy, our feeding therapist, on Monday. She was so impressed with Myla’s progress. She is eating more baby food. She is expressing excitement in eating and has now developed a love for pickles and pretzels. She took a little from a bottle with the feeding therapist and the therapist wants to speak with our GI doctor about beginning to wean Myla from the feeding tube. My expectation is that this will be another very difficult process. Though Myla has a newfound excitement for food, she still does not associate eating with satiation of hunger. She needs to feel hunger. My sense is that she needs to feel hunger multiple times per day and then eat enough to make that feeling go away. This could take a while. It also could mean less sleep back to the days of stressing about her eating and fearing the weigh in at the doctors office. The upside, however, clearly outweighs the downside. I can’t wait to see her beautiful face without “tubey” stuck to her chunky little cheek. I get overwhelmed when I think of the idea of Myla being an independent eater. It’s something so basic and so fundamental, but for Myla, it is also something that is terrifying. Eating used to hurt her so much. It will take time, but I know my little girl will be eating. Our goal is to have her eating birthday cake by May 19, 2012. One journey ends and another begins.