A little reminiscing...

Hold your breath, knock on wood, do whatever you do to not jinx this moment, but Myla has been puke free for essentially a month (well, she did a tiny throw up last week when she had a 104 temperature and we were admitted to Capital Health System for 4 days, but enough about that. Myla is fine). Tonight, Lindsey and I were thinking about all the reasons or explanations we would come up to rationalize why she was vomiting over the passed 10 months. When you are a parent in crisis, your brain will do some funny things to try to rationalize the insanity that you are facing. This is a non-exhaustive list of the reasons Myla used to puke.

Myla used to puke because.....

1. She had delayed gastric emptying (Gastroparesis)
2. She had a milk protein intolerance
3. She had a milk protein allergy
4. She would feel full too quickly because of her heart.
5. Her NG tube made her gag easily
6. Her NG tube moved when she coughed causing her to gag.
7. Her NG moved when she sneezed causing her to gag.
8. She's constipated so the food has nowhere to go but out.
9. She pushed too hard when she was trying to poop.
10. She pushed too hard when was trying to fart.
11. Pearl barked, woke her up, so she puked.
12. The food went through the tube to fast.
13. The bolus (what we feed her from) was up too high causing the food to go in to fast causing her to puke.
14. The digoxin (heart meds) made her feel nauseous.
15. She laid down too quickly after she ate.
16. She stood up too quickly after she ate.
17. She moved around too much after she ate.
18. She needs to move around more so the food digests quicker.
19. She ate 7 grams of baby food (not even half a teaspoon) right before her tube feeding.
20. The formula was too thick.
21. The formula was too calorically dense.
22. She has an allergy to something else in the formula.
23. She's too cold.
24. She's too hot.
25. She's in her car seat, so she is hunched over.
26. She has reflux.
27. She burped.
28. She may be sick.
29. She has post nasal drip.
30. She's teething.
31. She has a cold.
32. Her prilosec is an antacid. Your stomach requires acid to digest food. Without stomach acid, it takes her stomach a longer time to digest.
33. Her feedings were too close together.
34. Her clothes were too tight.
35. She never truly got to feel hunger because we were instructed by doctors to feed her too much food that was too calorically dense, too often. Imagine always being full and being force fed a full meal. That's how Myla felt all time. She was not able to regulate her intake at all. We are pretty sure this is why she puked. She is still being tube fed for about 30% of daily intake because we are still working on drinking. Tonight she ate a portion of pesto pasta, a full portion of apple sauce from a pouch, and 75% of a snackpack vanilla pudding for dessert (not to mention her favorite banana puffs)

I am so happy that we can make light of this now because while we were living it, it was 24 hour a day hell. The smell of vomitted formula permeated our home, our clothes, and our cars. Now, our house smells like food. I want to give a special thank you to Dr. Markus Wilken and all the other amazing parents on the tubefedkids website that offered advice, support, and at times challenged our thinking. We aren't completely there yet, but each day we feel closer and closer. The fact that we survived a 4 day hospital stay without increasing tube feeds or losing weight was amazing!

Myla Learns to Eat: Weaning Day 11

I haven't kept up the blow by blow because of a healthy mixture of exhaustion and being busy, which was actually Markus Wilken's advice the day that we put the tube back in. He noticed the exhaustion on my face, the stress, and probably the fact that I hadn't shaved in a while. He told me to only do a play picnic with Myla if we wanted to, but go outside, enjoy the weather and enjoy my family. That we did. We had my best friend Marty and his lovely fiance Anne here on Saturday. They saw Myla enjoy a play picnic, and then thanks to Pop Pop Glen, the four of us enjoyed some delicious food at Tortugas in Lambertville. On Saturday, we spent the day with Preston fam, including Elias (3 y/o) and Thalia (14 monthsish). On Sunday, Myla ate. She ate eggs and toast for breakfast, bites of my sub, jelly sandwich, puffs, potato chips, veggie burger, pretzels, roasted vegetables,2/3rds of a Ellas Kitchen (which MomMom and Pop Pop Ken got to see) squeezeable puree and bread. Today, she ate a full frozen yogurt push-up deal, 2 chicken nuggets, graham crackers, 1/3 squeezable puree, pasta with meatsauce and veggie crumbles, many puffs, some vanilla frozen yogurt, and I am sure some stuff that I am not remembering. We are so proud. She continues to develop the oral motor skills in an autonomous way that months of feeding therapy could not do. She is constantly reaching for and crying for food (mainly the puffs or the gerber graduate crunchies), but she is chewing and swallowing and just wanting more. We are hovering her tube feeds to 50% (actually probably less, because they aren't high calorie formula feeds, straight regular formula.

This evening, while doing her tube feeding, Myla was eating some strawberry flavored puffs and reaching and whining for more. The inner teacher in my lovely wife, instead of bowing to her desire, used it as a teachable moment, and taught her the universal sign for "more." After a few "trials," she got it. Having the intrinsic motivation to eat has also opened up a whole new cognitive experience for Myla. She makes cause and effect connections that have opened up her world. Its amazing to watch.

We are still struggling with the drinking, especially with anything but water. If she is thirsty or interested, she will drink some water from a glass, but thats pretty much it. Also, last night was a terrible night of crying and waking up, which led to a rough day at work today. But enough of that negativity, we are so thrilled with her progress. We are going to stay at the 50% mark of tube feedings and hope her weight has stabilized with all of the eating that she has been doing. We will have a weight check on Wednesday. I guess that's enough for tonight. Thanks for reading and all of your well wishes.

Myla Learns to Eat: Weaning Day 8

Not much to say today. The tube is back in because I noticed signs of dehydration tonight. We are feeling very upset, let down, pessimistic. Our goal is/was to have her be able to eat her birthday cake on May 19th, and we fear that it may not be a real optimistic goal. I find myself fuming with anger at the doctors that put in the tube, the doctors that told us that she wasn't getting enough calories when she was 2 months old, and the doctors that told us to stop breastfeeding.

For at least the short-term, its back to tube feeding, vomiting, stained carpets, etc. Perhaps we will give it a go once again she puts some weight back on.

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.