The Trouble With Feeding

Tonight, I jumped in a conversation on Twitter. The topic was about colic. Someone jokingly asked if there was colic in the NICU.

And, I remembered.

Charlie was fussy after she was transitioned off of donor milk to 24 cal/oz preemie formula. She didn’t cry, at first, but was incredibly gassy. The excess gas was explained by the removal of the replogle. I was reassured that it would get better.

It didn’t.

The last week Charlie was in the NICU, she finally took the majority of her feeds from a bottle. She sometimes cried after I fed her. I asked the nurses and the doctors if it was normal. I was told it was. This time, the high calorie content was cited for the digestive disturbance.

Things escalated.

About a month or so after discharge, Charlie screamed relentlessly after every feeding. I was told that it was probably colic. Then, the vomiting began.

Because she had reflux (formula had to be suctioned out of her nose if she laid flat), the vomiting was initially attributed to it. Finally, Charlie vomited while we were at the pediatrician’s office. I wiped it up with the many spit rags I carried and tucked it away. As disturbing as that sounds, that was our normal at the time.

The visit wasn’t with our usual pediatrician (she was out of town) and the doctor was ready to send us home. Before we left, she told me what to watch out for in the vomit. When she finished listing off colors and textures, I pulled the soiled spit rag out, showed it to her, and asked, “You mean like this?”

Charlie was readmitted that afternoon.

Pyloric stenosis was ruled out. Her formula was changed to a fully hydrolyzed formula (24cal/oz). She improved. But, she continued and continues to have issues.

Her stomach emptied slowly. She has a feeding disorder due to a combination of oral aversion and possible apraxia. Charlie is still (fully hydrolyzed whey protein) formula dependent.

I constantly tell myself that I’m over it. It is what it is. Other kids and parents have to deal with so much more. After everything we’ve been through, this is such a little hurdle.

However, that is only partially true.

The few tweets I sent out tonight revealed to me (and probably weirded out the other people) how strangely emotional this part of the journey has been.

For starters, I feel guilty that I didn’t push harder in the beginning when my gut was telling me that it was more than colic and reflux. I remember the helplessness and desperation I felt to get it figured out.

Now, after two straight years in feeding therapy, I feel a similar sort of desperation to get Charlie to adequately consume food. I dread meal times. I loathe feeding therapy. I detest the way that feeding and caloric intake is always in the back of my mind. Weight checks are heart breaking and demoralizing.

My hope is that Charlie’s evaluation for the intensive feeding program goes well this month. I hope she is a suitable candidate for the program. If she is, she will attend the program in May.

Nevertheless, I’ve learned, by now, to have a plan B. Plan B is to discuss alternatives with the developmental pediatrician in case Charlie is not a good fit for the program. I have accepted that Charlie needs more help with feeding that I can provide. Now, my job, as her mommy, is to find the appropriate help (and, possibly, fight insurance to pay for it).

Charlie is a very happy toddler when not presented with food.

A Day In The Park

Charlie cut her first tooth last night!

After a crazy night, we visited James River State Park. It was our thirteenth Virginia State Park. Charlie was busy playing most of the morning and early afternoon. Because she and I were alone, I did not get to take many pictures.

These are the pictures that I took…

There was a kids’ exploration area. Charlie practiced her standing (as suggested by the PT yesterday) in the stump garden. She also played with the drums, climbed on the logs, and played in the sand pit that was in the kids’ area.

She had her first fudgesicle and impromptu feeding therapy.

We wrapped things up by playing by the river.

Weird Baby

I’ve noticed that it is either feast of famine when it comes to progress with Charlie’s therapy. Yesterday, it was feast.

Charlie had a very successful OT and feeding therapy session yesterday. Last session, the therapist and I noticed that she liked licking textured things despite gagging on anything that passes the threshold of her lips into her mouth. This knowledge allowed the OT to come up with ideas as she rummaged through her arsenal of items at home.

The OT brought these items yesterday.

I presented them to Charlie. I held each item individually in front of her lips. As predicted, she stuck out her tongue and licked those items.

The therapist was a little more adventurous and worked them past Charlie’s lips into the very front of her mouth. Charlie grimaced. The stress caused her to tremble. However, she did not gag. I tried with the same result.

I retreated for a moment to give Charlie a second to “reorganize”.

Charlie whimpered.

Could she actually want to try more? I handed her the green item and placed it in front of her mouth. She tried to stick it in her mouth. She grimaced and pulled it out quickly. The odd thing is that she tried it again. She tried a number of times. Each time she would grimace and sometimes she would gag. But, she kept trying.

The OT and I looked at each other. I think we were both wondering what this baby was thinking. I laughed and said, “This is one weird baby.”

After the session, Charlie and I worked with the pacifier looking tool after each time Charlie ate. By evening, Charlie was able to hold it in her mouth for a few seconds.

This is a very big deal. It is one more step towards Charlie actually being able to feast.