The Allusiveness of Normalcy

                                          "I climb things now" - (Roth, M.J., 2012)
                                                        

"I maintained that psychiatry, in the broadest sense, is a dialogue between the sick psyche and the psyche of the doctor, which is presumed to be 'normal.' It is a coming to terms between the sick personality and that of the therapist, both in principle equally subjective.”  - Carl Jung

Jung's quote highlights a widely accepted tenet in my field of work.  That is that therapy often occurs within the intersubjectivity of client and therapist.  When it comes to subjectivity, Lindsey and I often struggle to differentiate between the normal ups and downs that Myla experiences and clinical symptoms.  This occurs primarily because of her history but it also has come about because her healthcare providers often view Myla through the lens of pathology.  This recently came to light with our changing our pediatrician who often only saw Myla through the lens of congenital heart defects, naso-gastric tube feedings, and failure to thrive.  Lindsey often left our "weigh in" appointments feeling beaten up because Myla didn't gain enough weight through the doctor's eyes, and though she never said it, we think she would have been more comfortable if Myla was still a non-eater with a feeding tube. I think Lindsey and I are resigned to the fact that Myla just has insane metabolism.  She eats normal people foods at sometimes bigger than normal people portions. 

She rarely highlighted Myla's strength and resilience as evidenced by her normal development in the face of multiple medical obstacles.  She just saw Myla as failing to ever get past the infinitely present hurdle of substantial weight gain.  Lindsey and I fell into that trap too, but as time has gone by, and we have seen Myla crawl, lift herself up, walk, call her for "momma," "dadda," and "puh puh puh puh (Pearl)."  We have really tried to see Myla for the wonderful, dynamic, hilarious, and yes, small person that she is.  Still though, it is hard to not think about every aberration as a symptom.  A symptom of what, who knows?  Was it that she has been waking up in the night crying? Was it that she wants to be held more?  Was it that she didn't really want dinner for two nights in a row?  Are these symptoms of a larger syndrome that we have missed?  Is she regressing with her feeding?  Perhaps she has reflux again.  We need to take her to her doctor....oh wait...she's getting two teeth in.

Getting teeth is normal.  It hurting is normal. Being fussy is normal.  Waking up crying is normal, and yes, not eating well while teething is normal.  This all leads us to the conclusion that......Myla is normal.  Lindsey and I must repeat that mantra to ourselves daily.  Our new pediatrician does not want to see us weekly for weigh-ins.  Yes, he wants her to gain weight, and so do we (by the way...she is, and has been), but the fact is that he doesn't have the history with Myla that our former pediatrician has.  Though he knows of her history, it is not the lens that he sees her through. 

My Baby's Momma

This year has been an experiment in divide and conquer.  When times were bad and Myla was undiagnosed, not eating, and we had no answers, Lindsey and I would rotate who had strength and who was vulnerable.  We both had our bouts with uncontrollable emotionality.  During these, work, which was usually my stress, turned into my solace and Lindsey lived and breathed the stress of Myla’s illness, in the moment, ever day, all day.  I would feel guilt when I left every morning, but even with the horror of tube feeding and vomit, Lindsey heroically cared for Myla and cared for our family.  I joke and call her my superhero, but it’s really no joke.  Between tube feedings and cleaning up vomit, Lindsey kept our house beautiful, paid the bills, balanced our check book, did laundry, made our social plans, planned our weeks, and did every other thing that I don’t recognize and figured just got done.  Yes, she would break down every once in a while, but so does every good hero….Spiderman, superman, even ironman had his rough days.   When I get home on most nights, I am truly exhausted from work, but I know I have about an hour or so of Myla time before bed time.  My wife, my daughter’s mother, has a true sense of what I need when I get home.  She can sense if I need to sit down and rest, if I need to hold my daughter, or if I need a hug.  Her love and her patience for me is easily tested but always triumphs. 

As a mother, her strength has no equal.  Any moment of solace she has she deserves and then some.  This Mother’s Day has such a special meaning for me, as I am sure all will.  I wrote in the beginning of this blog that I can’t wait to tell Myla her own story of her first year of life, which is quickly coming to an end.  Her mommy’s strength, resilience, and tangible/guttural love will be co-starring in that story.  Lindsey Rae, happy first Mother’s day.  You have been and will continue to be my perfect complement. 

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.