Myla Learns to Eat: Weaning Day 6

I don't have the mental energy or brain power to do a thorough update tonight, but after a lot of though, we pulled Myla's tube this morning. The video was cut short because it was a very emotional morning for us (me). Her intake did not improve today but she continues to explore. I know that I am a psychologist and I have studied human behavior for a while now; however, it has been fascinating to watch the inner struggle of Myla learning to eat. She is both stubborn and open-minded at the exact same time. She only took one nap today and did a lot of her drinking in the bathtub. She also enjoyed some tomato bisque for dinner. No this was not some Gerber concoction. It was Progresso Tomato bisque. She may be on her way to being a vegetarian like her father because she really enjoyed her morningstar crumbles and chose them over her Gerber Turkey and Rice. She enjoys cantaloupe very much. That's all for tonight. Thank you again to Dr. Markus Wilken who not only normalizes Myla's experience but in such a light-hearted and caring way normalizes mommy and daddy's anxiety.

Myla Learns to Eat: Weaning Day 5

Is "green shoots" the term they use in the very beginning stage of an economic recovery? If it is, then we may have seen some green shoots today. Myla's feedings are down to 50% total at this point in time. This alone is very scary. Today, she definitely showed signs of hunger and definitely let us know about it. She was not very much into breakfast. We feel the constant struggle of trying to feed her a meal at "meal time" and following her lead. We should know by now that feeding her a meal just because its time, does not work as well. Following a poor showing at breakfast time by MJ, I sat her on the couch next to me as I finished my cream of wheat. She showed some interest in what I was eating, so I let her have some of my breakfast which she took willingly from my spoon. Then she took another and then another spoon full and she swallowed it. As the day went on, Myla got fussy and Lindsey and I are trying to relearn the difference between her sleepy fussiness and her hungry fussiness. We haven't really seen her hungry fussiness since Lindsey was breastfeeding. As soon as we were told we needed to ensure that Myla received 24 ounces in 24 hours and to offer her a bottle every 2 hours, there went any chance of following her cues. She was fussy because she was tired. She napped. Following her nap, we did a play picnic. This time, we were wise enough to let Myla play in just her diaper. She played with and ate rice crispies, ketchup, mustard, yogurt, ranch dressing, apple slices, cantaloupe, and probably other foods that I am not remembering. She did great and had fun. The highlight of this play picnic was when she offered me her hand that was covered in a combination of rice crispies and ketchup. I had to model appropriate eating behavior, and now that taste will never leave my palette.

Following this, we bathed her and sat her down for her first tube feeding of the day. I sat next to her and ate my sandwich next to her. She reached for my sandwich, so I pulled off small pieces of bread and fed them to her. She then reached for my Cheetos (a bit embarrassed that I eat Cheetos) and she loved them. She loves crunchy food and she loves food that she can feed herself. She's an independent lady. We also discovered that Myla can drink from a straw! It takes a lot of time and work, but she can do it. I would estimate that she took close 4 ounces from a straw today. Thats huge for us.

Tonight we had another Skype session with Dr. Markus Wilken. He thinks we should pull the tube as soon as possible. I initially proposed that we would pull the tube this weekend, because I would be home with her all day. Dr. Wilken said that to avoid a bigger weight loss, we should pull the tube sooner, because our starting point will be a higher rather than waiting another 4 days of gradual weight loss and then taking the tube out. All of this is incredibly nerve racking and terrifying, but we believe in our Bean. She can do this. She will lose weight, but that is short term and in return we can have an autonomous eater. Pray for us and our baby. Pray for hunger and pray for Myla to discover the answer for that hunger.

I am going to take the day from work tomorrow, but we are hoping for visitors during the day on Wednesday, so let us know if you can spend time with Lindsey. Thanks.

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