Feeding Therapy Evaluation

I feel like I live at the Pediatric Therapy Clinic. We (I had to take Nadia too) went this morning to Nora’s feeding evaluation. I had no idea what to expect, but they asked me to bring three foods she will eat, and three she won’t. The first half hour or so was just information gathering, we discussed Nora’s premature birth, acid reflux as an infant, her breastfeeding issues in the NICU, her posterior tongue tie and upper lip tie, how even after correction she still took forever to finish a bottle… I gave a list of what Nora will eat, how we still rely a lot on Pediasure and toddler formula, the how she spits out a lot, even before she’s really had a chance to taste.

The therapist really wants to see Nora twice a week, but we’re already there once a week for Nadia’s physical therapy, once a week for Nadia’s speech therapy, and now once a week for Nora’s feeding therapy. Adding three appointments a week to our schedule is enough for me, I can’t do four. I feel bad, but I can’t, not now anyway. Maybe in a month when I get a new sitter hired and we’re into a routine.

I was able to see a little bit of the actual therapy today…  The therapist started with one of the foods that Nora likes, sour cream and onion goldfish crackers. A few were put on a plate for Nora, and the therapist put a few on her plate at well before going on to talk to Nora about how crunchy the crackers were when chewed. She made a big display of it, and of course Nora thought it was hilarious and then wanted to crunch them as well. Next they moved on to a food Nora doesn’t like, pumpkin banana snack bars from Plum Organics. Again the therapist took a bit of the bar as well, talked to Nora about how it was soft, didn’t make noise when she ate it, could be smashed with her fingers, etc. She asked Nora to first touch the bar, then kiss it, etc. until finally asking her to ‘send it down to her tummy’. Apparently they aren’t supposed to always or even often use the word ‘eat’… This process went on with the other foods I’d brought, almonds, fruit snacks, yogurt, and bits of actual fruit.

The therapist seemed to focus a lot of Nora’s acid reflux as an infant, suggesting perhaps Nora has learned that eating is actually painful and thus she has somehow learned what she can eat, a very limited variety of foods, that won’t cause her reflux. I’m not sure I believe this theory…

One of the questions I was asked was whether or not Nora is overly concerned with her hands being messy. I’m not sure on this one. She does ask me to wipe them off if she gets a lot of food on them, but she certainly doesn’t freak out about it. Looking back though, I never really let Nora eat with her fingers… You know that spaghetti picture everyone has of their child? We never did that, rather tried to teach Nora from a young age to use silverware. I more blame giving up on the idea of baby food so soon for the issues we’re having now. Nora spit out a lot of baby food at first, and being a first time mom I figured she didn’t like it and quickly moved onto baby led weaning. Having seen Nadia spit the baby food out a few times before liking it and figuring out how to eat it, I now think maybe I just didn’t give Nora enough time. Who knows… Can’t go back now I guess.

Our next feeding therapy session with Nora is this Friday, so rather soon. We were given a few instructions to work on at home in the meantime:

  • continue our usual routine, sticking with the Pediasure and toddler formula for the time being
  • during family meals prepare for Nora foods we know she likes and will eat, even if that means mac and cheese and fruit snacks for every meal; the goal for now is just to make sure she is eating with us
  • during family meals talk a lot to Nora about what we are eating, meaning about the foods we want her to eat; for example if I’m eating a green bean tell her how it’s soft and green, doesn’t make a sound when chewed, can be cut into smaller pieces, how yummy it is, etc.
  • plan time for one-on-one therapy meals with Nora, perhaps when Nadia is napping (ha); during these ‘meals’ introduce Nora to new foods but also incorporate familiar items she likes while completing this feeding log Screen Shot 2017-07-25 at 3.02.28 PM
  • the idea with the log is to start at the top and attempt to move down the list by encouraging her, playing with the food, doing these things myself with the food, etc.; if she won’t move down the list, go back to the top and start over

So… this all sounds great and wonderful, but ah, finding the time, and preparing new foods to try is already a bit overwhelming to me, not to mention also finding foods to take to the actual therapy sessions, oh, and going to the therapy sessions. I know, this is just one more thing I’ll look back on and think, oh, remember that? But still, right now it feels like a lot for me. Especially since my specialty is accounting, not playing with kids and their food!

August 10, 2015 – 21 Weeks (10 Weeks Corrected)

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OMG, I’m busy and feeling very overwhelmed.  Closing is Friday afternoon, the movers come Friday morning to pack.  I’ve been busy with last-minute details…  Eric called last night and said, there shouldn’t be anything for you to do since they are packing and unpacking us.  Oh men are so clueless.  He also didn’t know we had to set up utilities, and move the Dish, and set up an internet install…  All the things I do that he just assumes happen.  As of last night we didn’t have a hotel room for Friday night, as the movers aren’t unpacking us until Saturday.  It was the one thing I asked him to do.  Please tell me all men are this clueless.

Oh, and my contact with the builder is still annoying the crap out of me.  Yesterday she asked me where I wanted the switch for the garbage disposal.  Why did I think that isn’t something that goes in three days before closing?  And apparently the house can’t pass final inspection without a range hood… It was delivered last Friday, when my contact assured me someone would be at the property to take delivery.  Well, no one was there, and now it can’t be re-delivered until next week.  I’m not sure how we overcome this…  It’s more than I want to think about right now.

Oh top of moving I feel like I’ve been traveling, not far, but still, a lot with Nora, and always alone with her.  A week ago was her lip and tongue tie correction, 90 miles each way, which is finally healing I think.  Nora was SUPER fussy all weekend, which is very unlike her.  Saturday her and I went to see Eric, another 90 miles each way, and it felt like it was way more work than it was worth since she cried most of the day.  Then Monday I took Nora to meet my dad and grandmother, another 90 miles each way.  It just seems like so much for me since I take all my pumping stuff, and bottles for her, and find the time to pump on top of feeding her.  And breastfeeding is accepted in public, pumping, not so much, so I tend to have to find private places, which is a hassle.  I’m actually quite annoyed my dad and grandma couldn’t drive here to meet Nora… but such is life.  There are many reasons why I’m not close with that side of the family…  Below are pictures I got for her baby book though.  I did want Nora to meet them, even if I’m not extremely close to them, just felt like something that needed to happen.  (Again, I find myself doing what I think I should, and not what I truly want.)

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Today is my last day here to do nothing…  Feels really strange to think I won’t live here in a few days.  I took Nora for a walk yesterday and I was kind of sad to think we’ll be walking somewhere else soon.  Exciting yes, but a little sad too.

Tomorrow afternoon Nora has an appointment for craniosacral therapy, a recommendation from both the pediatric dentist who performed her tie corrections, and the lactation consultants who have been helping me the past few weeks.  If you’re not familiar, check this link to learn more, it’s the woman’s website with whom I was referred.  My very limited knowledge of it is…  light touch, like massage, that helps infants release tension.  Apparently it’s believed that Nora has a lot, since she was using the muscles in her face/mouth/neck/etc. to suck incorrectly for the past several months.  I’m very skeptical.  I always am when insurance doesn’t cover something, makes me think it’s bogus.  I don’t even believe in chiropractors, although I’m told this is nothing close to the adjustments they perform.  Eric doesn’t even know we have this appointment, as I’m sure he would think I’m crazy for even considering it. I guess if it truly is light touching, what harm could there be, other than my time and money…  Anyone have experience with this??

Sorry, no time to proof read, so I assume there are tons of errors…  I’ll leave you with a few more pictures of Nora I thought were cute!

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What do I want…?

I think I am so caught up in what I should do, or what others think I should do, or what I think others think I should do, that I forget to consider what I want to do…

The past few days have been rough.  Nora was in a great mood after her tongue and lip tie correction, until that afternoon.  She was extremely fussy.  I gave her Tylenol around the clock, and that helped a lot, but she was still upset and visibly in pain while eating.  Immediately following the procedure I gave Nora a bottle, rather than attempting to nurse her.  The dentist and I decided that since she is more used to a bottle, that would be more comforting to her.  When we go home I attempted to nurse her, but she acted as though she had no idea why I was trying to stuff my nipple into her mouth…  I laid off on trying to force her and instead her and I cuddled most of the afternoon and evening, using bottles for all her feedings in between naps.

Yesterday she was much happier!  So I tried nursing her, and folks, it still hurt like hell!  I know, I know, the dentist and LC told me not to expect great things right away, as Nora has to relearn how to use her muscles and such.  I guess I still expected something to be different though, but it wasn’t.  We did two feedings in a row, but then I was left in pain, with milk stuck in my ducts again, and she was fussy, I assume not satisfied.  So back to bottles we went yesterday afternoon, evening, and overnight.

We have a follow-up appointment this afternoon with the LC.  I guess I’m not sure what to expect of their help…  I assume they will just tell me to keep up with the stretches (to make sure her ties don’t grow back together) and suck training (to help her learn to use her tongue and mouth correctly).  Successfully nursing Nora doesn’t even seem possible to me anymore, I just can’t picture us ever getting there.  I mean, we’ve been struggling for FOUR months now.  It feels like forever.  There is such a huge part of me that wants to give up and accept that I will continue pumping until I have enough breast milk in the freezer to last Nora until she is at least a year old.  I could go back to pumping more often so I can freeze more faster and be completely finished pumping sooner…  Would suck for the time being, but oh, think of the freedom of not pumping!  I can’t even imagine!

But then there is that part of me that thinks I should get her to breastfeed successfully.  Like it’s become some challenge I must overcome, must somehow prove to everyone we can do it.  But do I even want to?  I hate pumping, I do, but I have this down to a science now.  Would it actually be less stressful to just give in and accept this is our reality?  And if I do give in, am I still allowed to complain and bitch and moan that pumping and bottle feeding sucks?  Or must I give that up since this would be my decision?

Ultimately these things are important to me:

  • Nora gets my milk – perhaps how shouldn’t matter
  • Nora learns to use her tongue and mouth correctly – even if we don’t continue breastfeeding, I know correcting her ties will be beneficial to lifelong eating, talking, and so much more

August 3, 2015 – 20 Weeks (9 Weeks Corrected)

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I can’t believe it’s been 20 weeks since Nora’s birth.  And yet somehow she is still only around 10 pounds!  I’m a little biased, but I think she gets cuter every week!  She wouldn’t sit still for this week’s photo, notice the slight blur 🙂

I continue to wonder what the heck I’m supposed to do with Nora all day everyday.  Eric left Saturday for Cedar Falls as he started his ‘it gets better’ job, as it’s often referred to… the first job out of residency that is.  We’re tentatively scheduled to move Friday, August 14th, which means I’m here alone with Nora and Kona until then.  AHHHH!  So far so good, but it’s only been a few days.

The days really are flying… everyone tells me they do with a baby since life seems to repeat every three hours when Nora needs to eat again.  Speaking of eating, I’m still pumping and feeding Nora my milk with bottles.  (Oh, did I mention I stopped fortifying my milk altogether?  Yeah, long story, but to make it short, since her doctors agreed we could cut back on her calories, and I was kind of fed up with her gas and upset stomach, I decided to try straight, plain breast milk for a few days.  And then I just never went back to adding in the fortifier.  She actually poops now!)  Anyway, I tried last Saturday to strictly nurse her all day to see how we’d manage, using a nipple shield of course.  Since I’ve been pumping less I was fairly confident that Nora could consume all the milk, or very close to all the milk, I’m making.  That said, after a few hours of nursing her she was crying and my breasts were uncomfortable.  I know she gets some milk, she seemed satisfied after the first feeding, but after the second and third feedings she was fussy, wouldn’t go to sleep, and I had hard, sore spots, which I assumed were ducts that Nora wasn’t able to empty.  Funny that I was so looking forward to pumping after that experience!  Still feeling frustrated though, I broke down and called the pediatric dentist I was referred to for her upper lip tie and posterior tongue tie…  Well, actually, her and I emailed back and forth a few times and then I finally called to make an appointment, which is tomorrow morning at 8am.  And it’s at least 90 minutes from where we live.  Okay, I know this doesn’t sound all that difficult, but I’m really wondering how I’m going to get there on-time.  I might be showering at 3am after feeding Nora!  There is a part of me that still would have preferred the ENT perform the correction, but a larger part of me didn’t want to wait another month and a half for that appointment.  And this pediatric dentist comes very highly recommended.  I am terrified though.  I think I have PTSD from our NICU experience.  I just keep picturing Nora in pain, all the procedures she endured, all the spinal taps, all the IVs, the literally hundreds of blood draws, intubations, the tortuous eye exams…  Ugh, even just thinking about those days in the NICU, all the times they would ask me to step out, and I’d go for a walk while I knew she was screaming…  So hard.  I’m told they will numb her mouth tomorrow, and that the procedure is really quick, but it still breaks me heart.  Please think of us tomorrow morning and pray for success and a quick recovery.  I’ll update and let you all know how it goes.

In other news, Nora and I had a fantastic lunch today with the ladies I used to work with at the hospital.  It seriously was so good to see them!  I miss them so much!  You know that feeling when you break up with someone and then you see them with someone new and it’s like you feel left out?  Yeah, totally had that feeling at lunch.  As much as I disliked my job, the actual work, I really, really enjoyed some of the people.  Not N of course, but several girls became close friends.  I so miss the chit-chat, catching up on each others lives, giving and getting advice, venting about the not so awesome people at work…  I keep telling myself I’m going to do a better job of staying in touch with those I truly care about, but then another week passes and I can’t figure out where the time went…  Is that just life?  I truly hope those wonderful ladies know how important they are to me, even if we aren’t able to see each other as much as I’d like.  And with me moving soon, I fear even more for our friendships.  Thankfully I won’t live too far and should be able to come back to meet for lunches from time to time!  I’ll look forward to those days!

Ortho and Lactation Consultations

Nora had two appointments yesterday, ortho in the morning, and last night we met with a lactation consultant for help with breastfeeding.

Dr. Morcuende is the pediatric orthopedic surgeon at the University.  He reviewed Nora’s hip ultrasound following an examination, and thankfully he doesn’t believe she needs any treatment at this time.  He did confirm her right hip is immature, even for her corrected age, but he’s confident it will mature without the use of a harness.  We are following up with another ultrasound and exam the beginning of September to make sure she’s growing properly.  I made sure to ask that if for some reason her hip isn’t mature in September, there would still be time to correct, and he assured me there would be.  So for now, we wait, and pray.

I’m not sure I can say we were given as awesome of news at the lactation consult last night…

First though, let me say, the two ladies I met with were fantastic and extremely helpful.  Jennifer Pitkin, BS, IBCLC, RLC, and Kimberly Hendricks, who I believe is in training to become a certified lactation consultant, both from Mother and Child Midwifery, met me after hours last night at their clinic in Iowa City.  The first half hour was a lot of talking, they wanted to know about my pregnancy, her birth, her stay in the NICU, and how she’s been feeding since discharge home.  They did an oral exam, evaluated her mouth and suck pattern, and then watch her nurse to evaluate further.  They found a few things concerning during their evaluation…  I pasted their comments below, as they explain much better than I, but the gist of it seems to be that she has both an upper lip tie, and a posterior tongue tie.  The upper lip tie doesn’t actually seem to be an issue.  She normally tucks in her upper lip when nursing or with a bottle, but she can flair her upper lip with some help from me.  What she can’t do is raise the posterior portion of her tongue, or move her tongue from side to side.  They explained how babies tongues should flow in a wave formation when nursing, but since she can’t raise the posterior portion she can only move the front of her tongue up and down, thus basically chomping on my nipples, the cause of all my pain and soreness.  Oh, did I forget to mention that I’ve really, really been focusing on breastfeeding?  In the past 48 hours Nora has only had two bottles 😉  I’m proud of her, and me, but really, really discouraged as well.

So my pain…  Two pains actually.  I have been pumping between 30 and 35 ounces a day for the past 4+ months since Nora was born.  Nora doesn’t eat anywhere near that amount, so needless to say, just feeding her, and not pumping in between, well, its leaving me very full, and very uncomfortable.  As much as I hate pumping, I so want to pump to feel better.  But, several people have told me not to, or only pump for a few minutes, as my body needs to learn I don’t need to produce so much milk.  How long does it take for my body to adjust???

Than there is my nipple pain during feedings, and sharp shooting pains after feedings.  I don’t know how some people do this, with this much pain, for any length of time.  Its only been two days and I already want to go back to pumping.  I’ve been putting ointment on, but it doesn’t seem to be helping much.

At this point I’m very confused as to next steps.  The lactation consultant recommends a pediatric dentist in Dubuque, a girl I went to high school with…  Small world!  Problem though, we don’t have dental insurance again until August 1st when Eric starts work again.  Granted, that’s only a little over a week, but do I continue in pain for a week, knowing she is sucking wrong and damaging my breast tissue?  Or do I go back to pumping for now and try again after we talk to a specialist?  I feel like going back to pumping is undoing everything I’ve worked so hard at the past few days.  Eric also wondered if an Ear Nose and Throat specialist (ENT) would assist with lip and tongue ties… he emailed one he knows from the University, but I suspect they won’t use a laser like the pediatric dentist prefers.

I’m so confused.  How do you know who to trust to cut into your daughter’s mouth?  She’s already been through so much, breaks my heart to subject her to more.  But if we don’t correct her tongue, will she has issues with eating once we start on solids, or develop speech issues down the road?  Way too much to think about right now, when I’m supposed to be organizing this house for the movers!

Report:

Subjective/Relative History:
No abnormal breast history reported during pregnancy/lactation. Mother reported pain due to compressed nipples during nursing sessions.

Objective:
Mother: Normal breast anatomy. Sufficient supply due to previous pumping regimen. Worked with mother familiarize with correct positioning and latch techniques.
Infant: Inability to deeply latch. Infant showed symptoms of a class 3 maxillary frenulum (lip tie) which did NOT impact feeding when upper lip was manually flanged and III-IV anterior and posterior ankyloglossia (tongue tie). During infant oral evaluation, infant was able to extend tongue past alveolar ridge, had difficulty lateralizing tongue, was incapable of producing a moderate cup with finger, and frequently gagged. Infant utilized chomping motion rather than wavelike motion during oral evaluation.
At breast: Audible swallow. Tongue visible. Sliding down and chomping during nursing session.
Postfeed: n/a

Assessment:
Infant was incapable of initiating deep latch at breast due to inability to flange upper lip combined with an inability to produce adequate sucking motion at breast to deeply attach. Frequent sliding off of nipple and incorrect sucking pattern (chomping motion) have caused nipple tissue breakdown and compression stripes on mother’s nipples causing visible vasospasms.

Plan:
Mother will continue to nurse on demand, utilizing: exaggerated c-hold, manual flanging of upper lip, placing coconut oil directly on nipple to aid in healing. Mother has received instructions on suck training to reinforce correct wavelike sucking motion and will follow-up with progress by 7/27 with results. Mother is considering to have maxillary frenulum and posterior tongue tie revised by physician or dentist pending results of suck training progress, current care plan and physician’s recommendation. Mother was instructed to utilize tongue/lip tie stretches pre-feeding and suck training techniques after a nursing session to reduce compression of nipple and reinforcing wavelike motion to effectively drain the breast.

Follow up phone call will occur anytime mother has questions. In-person feeding consultation will be at mother’s request.