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!

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

July 20, 2015 – 18 Weeks (7 Weeks Corrected)

 I feel a bit like a broken record, but I seriously don’t feel like I can get on top of my life right now.  (Nora is happy in her swing right now, but I feel guilty not interacting with her, not talking to her while I type this…)  The women who works for our builder is still constantly hounding me to make decisions, all last-minute, I need to start organizing and throwing junk out before the movers come, Nora is obviously a full-time job, and Eric left this morning for two days of orientation for his new job.  And that’s just the start of my to do list!  Case in point, Lowes called this morning, ten minutes before they were to arrive at our new house with appliances to install.  Um, the email confirmation I received said they would call 24 hours before to arrange.  Ugh.  I’m not even in the same city yet!  And our current house is a complete disaster, as I’ve given up on cleaning…  And poor Kona is not getting nearly enough attention.  She needs her nails clipped so badly I searched online yesterday for someone to come to the house, but came up with no options.  Apparently that isn’t a thing here.

In my quest to find more time in my days I’m still trying to focus more on nursing rather than pumping and bottle feeding.  Nora weighed 8 lbs 9 oz last week at her high risk appointment, therefore they recommended cutting back on some bottles with the fortifier and seeing if she continues to gain appropriately.  She is still only at 11% for weight on the preemie chart, but she’s sticking with her curve, so perhaps she is just going to be a petite girl.  Nursing continues to be a struggle though.  I have been trying more though, we can usually get in one feeding by breast, and then I try the next, but halfway through the second she is usually quite frustrated.  Maybe she just isn’t used to it and needs to practice more.  Or maybe it really is an upper lip tie issue.  Regardless, I made an appointment this coming Wednesday evening with a lactation consultant to see what help they can offer.  The nurse practitioner at her high risk appointment last week really discouraged me though, stating that if Nora hasn’t gotten it yet, she might never, and that lots of preemies never catch on.  This whole pumping and feeding thing is getting old though!  For the feedings I nurse her I’ve been skipping pumping, but that doesn’t seem to be working either, as then I’m way too full later, as I make way more milk than she drinks.  Will I always have to pump after feeding her?  If that’s the case what’s the point of focusing on nursing?

Besides the discouragement in regards to nursing, Nora’s high risk appointment was a success.  We’ll have these every few months for several years, and so far so good.  They basically ‘played’ with her, showed her toys to see if she would follow them with her eyes, made sounds to see if she would look in the correct direction, attempted to make her smile at them, checked her balance and head control, and about 100 other things.  She’s right on track for her corrected age which makes me feel great.  So far so good.  I know there is still a lot of risks for her development due to her meningitis, but for the time being I’m going to try to relax.

I have noticed that Nora is making more sounds, cooing I guess is what they call it.  And just a few days ago it seems she found her hands, as they are constantly in her mouth now.  Do babies put their hands in their mouths all the time, or is this a sign she is hungry?

Speaking of appointments, last week we also had Nora’s hip ultrasound, required since she was born breech.  Before we left that appointment the pediatric radiologist chatted with me regarding the results.  Apparently Nora’s hips are immature for her age, even for her corrected age, and are showing early signs of dysplasia.  His recommendation was to double diaper in an effort to hold her hips open and repeat the ultrasound in two months.  I wasn’t too concerned until her pediatrician called to follow-up and tell me that she wants us to see a pediatric orthopedic surgeon.  Ugh, like haven’t we already seen enough specialists???  Our appointment is this Wednesday and they want to rule out her needing a harness, which looks annoying, but not painful, from this video.  I realize we are so very very lucky with Nora so far.  She has been through so much and is doing amazing.  And I shouldn’t even think to complain, compared to what some preemies endure, but regardless, I so hope she doesn’t need this harness…

So my plan for the next two days until Eric gets home…  Chill at home with Nora, work on breastfeeding, and make a really good attempt at organizing for the movers.  Wish me luck!

37w0d – Day of Life 56

Why does it feel like every time I let my guard down, have a little faith, and think positive, the world rains on my parade?

I know I said my Mother’s Day was nice, and it was, until I walked out of the hospital.  Eric needed to run to his office, and we drove separately, so I walked out alone.  And as I walked through the parking ramp I felt the tears coming.  There was just something about leaving my daughter at the hospital on Mother’s Day, my first Mother’s Day.  It wasn’t how it was supposed to be…  But it wasn’t just that.  It was the fear building inside of me that needed an outlet.  I constantly feel like I’m carrying around this huge burden.  Like if I worry enough God will know I truly love Nora and he’ll make her well.  It’s exhausting, this constant fear and worry.  I have these flashbacks of the two mornings when Nora was found really sick, her pale, limp body just lying there, unresponsive, struggling to breathe.  No one deserves to see their child like that, and for the life of me, I can’t get those images out of my mind.  Anytime there is even a slight hint of something wrong, I automatically assume the worst, even when logic tells me it could be nothing.  As I was driving home yesterday, crying, I told God I was mad at him for allowing me to meet Nora, to see her, to love her, if I wasn’t able to keep her.  There is still so much a part of me that fears something will happen to her, another infection, the doctors will find something…  Something that will end this dream I have of a happy life with her and Eric.  I’m sitting on the floor in her room typing this, in the mist of her clothing, which I’m supposed to be sorting and washing, but instead I’m wondering what becomes of all her ‘stuff’ if she doesn’t end up here with us.

So why am I so worried…

  • Yesterday when I was feeding her she choked and her heart rate dropped.  I sat her on my lap and patted her back and within a few seconds all was well, but it scared me.  No, terrified me.  I saw the heart rate turn to red and blink and ding on the monitor and the nurse came running in…  When I told her I thought we were okay, that Nora just chocked a little, the nurse said, oh that happens and that if we were at home without the monitors it wouldn’t have even phased me.  Okay, maybe so, but when Nora was so sick her heart rate was dropping a lot, the nurses kept running into the room to stimulate her, reminding her to breathe.
  • Nora had a harder time holding her temperature the past few days.  Okay, it’s been 36.4 C and they want it to be at least 36.5 C, so barely low, but still.  Yesterday we added another layer to her, a onesie under her sleeper and then her temperature was just fine.  But I still worry as I know not holding her temperature is a sign she is struggling.
  • The past two days Nora has lost weight, 20 grams and then 25 grams.  The doctor today told me we’ll just watch her, but I’m terrified.  In my head I know the reason could be that I am breastfeeding her more, and thus more of her feeds are straight breast milk rather than my milk with calories added, but still.  And maybe this is completely normal…  I’m wondering if they will want me to stop breastfeeding for a bit so we can give her more fortified bottles.  Not the end of the world if we do, but…  We had a great day breastfeeding.  I decided to try without the nipple shield and she took her entire feeding without it, 20 minutes!  And maybe it was my imagination, but she seemed to suck more continuously than she does with the shield, not falling asleep and stopping throughout the feeding as much as she does with the shield.

So yes, these all could be nothing, and maybe I just need to realize that Nora is still a preemie, we will still have small setbacks, but with discharge so soon, I don’t need something like weight or temperature keeping us there!  Things we never had issues with in the past!  Or maybe I’m just panicking because discharge is approaching, and it terrifies me.  Never in my wildest dreams did I ever think that fear and motherhood would be so closely linked in my brain.  I had hoped Nora’s birth would bring me joy and peace, but sadly, those moments are few and far between.

Tomorrow is another day, day 57 in the NICU…  I’m praying for some sign that Nora is well.

 

34w2d – Day of Life 37

This post is a bit random, so I apologize 😉

First, the facts:

  • Weight: 2,065 grams (4 lbs. 9 oz.)
  • Tube Feedings: 56cc every 4 hours over 30 mins (1.9 oz. every 4 hours)
  • Breastfeeding: Nora nursed for 7-8 mins this morning with a nipple shield and therefore only had to take half her 10AM feeding through her tube!  While we’re on this topic, can I just complain for a minute?  They want me to estimate how long she nurses, as in, how long she is actually sucking/taking in milk.  How is that possible??  I’m new to this so obviously have a lot to focus on while feeding her, and counting just the time she is sucking doesn’t seem to be high on my priority list.  I mean, what baby sucks continuously?
  • Meningitis Status: Culture came back negative/no growth!  Antibiotics are complete and PICC line was removed Monday!
  • Respiratory: Room air, no oxygen support
  • Temperature: Nora’s bed is still set to 29.2 C.  I asked the nurse about this again today, wondering why she still isn’t in a crib.  The nurse said there is no reason why she can’t be in a crib now, but they don’t really see the point in making her use calories to keep her temp up when instead she can use them to grow and gain weight.  I guess I see their point…
  • Location: This morning in rounds I was told there should be a room available tomorrow (Thursday) for us in Bay 4!!!  It’s my understanding Bay 4 and 5 are similar, just in different locations in the hospital.  I asked for a tour of Bay 4 to get an idea of what to expect…  There are just 6 rooms which form a U around the nurses station.  The rooms are what you would expect of a typical hospital room, bed, TV, private bathroom…  Like a hotel I guess.  But way more expensive!  I’m really hoping we actually get moved tomorrow, now that they got me all excited!

Remember coworker N?  Yeah, ran into him the other day…  Can you believe he had the nerve to tell me that his wife is ‘just so totally over being pregnant and would do anything to be induced right now’…?  Yeah, she is due May 1st.  He obviously doesn’t have any idea what I would give to have made it to my due date…  And if that wasn’t bad enough, he wanted to know the lactation consultant’s names and if they gave me any tips.  What a freak.

And in other news, my boss just up and quit a few weeks ago and it now looks like N might end up a manager.  Dear God, help us.  He is in no way qualified for such work.  I thank the Lord that this coming Friday is my last official day.  I’ll be cleaning out my desk in the morning… hopefully just a few hours of work 🙂  I will sincerely miss a few lovely ladies, but I’ll do my darndest to keep in touch with them!

Since Nora got her PICC line out Monday she was allowed her first tub bath Tuesday!  And let me just say, I’m truly touched Eric wants to take part in all her ‘firsts’.  I mean, he really has surprised me.  He didn’t want to miss her first tub bath so we paged him when we were ready and he somehow snuck out of surgery.  Check out the cute pictures below.  And those are yawns in the pictures.

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Well, I’m fairly certain I have much more to share, but look at that, it’s time to pump again!  So for now, I’ll leave you with a picture of my view from the rocker in Nora’s room in Bay 3.  Hopefully this is the last day of this view!

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