This isn't how it was supposed to be

[annekh23]

We just weighed Grace today, 8lb2oz, she's 6 weeks old on Sunday and was 7lb4oz at birth, she gained really well last week, then this week has only gained an ounce.

She's receiving only breastmilk, either direct from me, or via tube and syringe. We really thought she was doing better this week, she seemed to be satisfied after I fed her, so we didn't offer supplements. She doesn't have a pacifier, so all her suck needs are met by feeding.

I have plenty of milk for her, even pumping only 2-3 times a day I'm getting well over 20oz, plenty for her supplements and rapidly filling the freezer with the excess.

We've spent so much money on this, our insurance covers the lactation consultant and occupational therapy, but we're paying pump rental, bought pump parts, saw a cranial osteopath etc. and the costs are going to continue, we have to renew the breastpump rental and we've been advised to rent a scale so we can keep a closer eye on the amount she gets per feed.

She had a tongue tie snipped, but we're wondering if it was done as well as it could be. We know the way she sucks is far from the most efficient, but we don't seem to have made much progress in training her not to suck that way.

Even though rationally the problem is with her, not me, I've successfully breastfed 2 children already, it's hard not to feel inadequate when things aren't working out and wondering how much of that is down to an early c-section delivery and NICU stay.

[myfairbabies]

Know just how you feel. Paid tons of money for pump rental, lactation consultant, donor breastmilk to be shipped here when dd lost 2 lbs and i wasn't pumping enough (from my sister across the country), tongue tie snipped, CST, wash bottles (used to store milk) and pump and syringes and nipple shields and sns. It shouldn't be this hard. She's 3 weeks and we still supplement for every feed (at the breast).

[ihugtrees]

I'm so sorry things aren't working out the way you'd hoped.

[maxwill129]

[Mama Khi]

I totally understand how you feel. MW freaked us out into supplementing with formula when DD was 3 days old then we had to feed her formula and my pumped milk with the syringe. I have finally gotten her to breastfeed with a nipple shield but everyone says to get her off it ASAP. I'm just glad she is off formula! She has a very slight tongue tie that the MW says isn't hurting her feeding, so I haven't had it snipped, but I wonder if I should. I don't want to cause her pain if it isn't necessary. And all the HCP keep obsessing over how fast (or slow) she is gaining weight.

So, you aren't alone in this. There are others of us out here. And I never imagined it would be this hard.

[mbravebird]

, everybody. So glad you took her to craniosacral. That helped my first son with nursing/latch so much. Different practitioners have different skill levels -- maybe try another one?

But aside from that, I'm so sorry it's been so hard. Feeding issues are beyond stressful.

[annekh23]

I also feel completely inadequate as if it's all my fault, when logically that isn't the case at all. I'm feeling pretty lost as to where to turn next.

[phrogger]

Originally Posted by annekh23

I also feel completely inadequate as if it's all my fault, when logically that isn't the case at all. I'm feeling pretty lost as to where to turn next.

I am so sorry. This was my biggest fear with the NICU stay. It is NOT your fault. Babies need to be able to learn to nurse and that seperation makes it so hard. You are doing your best. I don't know what the next step is, but I hope and pray this gets easier for you.

[musiclady]

Originally Posted by phrogger

I am so sorry. This was my biggest fear with the NICU stay. It is NOT your fault. Babies need to be able to learn to nurse and that seperation makes it so hard. You are doing your best. I don't know what the next step is, but I hope and pray this gets easier for you.

it is still possible to establish a decent BF relationship after the NICU. We still supplement with added formula and protein to the BM, but she does get to nurse. it just took us a lot of time, and a lot of non-nutritive sucking.

best of luck. and don't be down on yourself.

[2boyzmama]

I'm DDC crashing from September

I'm not familiar with your story, but I wanted to throw a few things out there that might not have been checked yet.

I had a horrible time breastfeeding my second son, and it took us a long time to figure out why. It was a long drawn out process, but in the end, here's what his hurdles were:

--Upper lip tie, he had 5 labial frenulums attaching his upper lip to his gumline. No dr had ever seen it before (not even Dr Palmer, he has information on his webpage about a single upper lip tie, but not multiple).

--An extremely high, narrow, arched hard palate. When you look at my son's hard palate (the roof of his mouth) it goes on and on and on. So high, narrow, and arched that it took a while to rule out a cleft. That prevented him from forming proper suction, he made a "clicking" sound when he nursed ebcause he kept breaking suction.

--A cleft of his soft palate (called submucous cleft). His cleft is not obvious, it's called an "occult submucous cleft" which is very hard to diagnose.

--A small, receeded lower jaw, the combination of the jaw and palate issues is what's called Pierre Robin Sequence, and the diagnosis of PRS can be difficult since there are varying degrees of severity

--A swallowing disorder causing him to aspirate fluids into his lungs, but also a sensory problem called dysphagia which made it so he didn't choke/gag as much as expected for the amount of aspiration he did.

--An airway malformation which made breathing laborious, and sucking very difficult (ready for this? The name of his airway malformation is laryngotracheobronchomalacia) The laryngomalacia was diagnosed pretty quickly, the tracheo and broncho malacia took longer to diagnose.

SO...all this combined and honestly it's a wonder he survived!!! He had other medical issues and we eventually put all the pieces together and discovered he has a chromosomal deletion. Obviously his case is rather extreme, most infant feeding issues aren't caused by something like this, but any of the things I mentioned above can be found in "normal" babies and aren't always very apparent. For example the lip, most drs and lactation consultants know to look for tongue tie, but not lip tie. Sometimes freeing up that upper lip makes sucking that much more efficient. The high narrow palate is a toughy, and also not one looked for often. Or it's noted, but thought to be an orthodontic problem, not a cause of feeding problems.

I *know* the pain and frustration you're going through, I've been there! We were able to keep Connor on exclusive breastmilk with no artificial supplementation, but it was a HUGE fight. I tried every bottle under the sun to find something that was easier for him to suck as we worked on getting each of his issues diagnosed and treated. We're still working on getting his issues treated (still left is his palate repair). He did eventually learn how to breastfeed at the breast, to the amazement of all his drs.