Wednesday, September 21, 2011


Home almost 4 weeks.

Yesterday was our first appointment with the orthopedic surgeon to check out Kaia's hip dysplasia since she has been home.

It did not go well.

I don't think I've mentioned it on here, but the Pavlik harness that Kaia wears to keep her hip in the proper position is a piece of GARBAGE. It is held on by Velcro that DOES NOT WORK. The 'hook' portion of the Velcro is fine, but the 'fuzz' that it's suppose to stick to doesn't hold. You know that sound that really good Velcro makes when it is ripped open? A loud RIIPPPPPP sound? Well the Velcro on Kaia's harness makes a soft 'piff' sound when being opened.

In an attempt to fix this, about two weeks ago Brian decided to take matters into his own hands. To reinforce the harness he went to the fabric store, bought some of the 'fuzz' that Velcro tabs stick to and sewed it to the harness in order to get it to stay on and not 'pop open' every time she moved. It seemed to be working and the harness was at least staying put.

Which would have been great, except that Kaia's hip has NOT been in the correct position and therefore for the last SIX WEEKS that she has been wearing the damn thing it's been doing exactly NOTHING!!!!

That's right folks. My kid's hip is still dislocated and the harness which was supposed to be 'holding it in position' so that the socket could grow around the ball joint of her leg was set up improperly and was literally holding her hip OUT of position this entire time.

The worst part was when the surgeon popped her hip back into place yesterday Kaia seemed to jerk her whole body and then started to SCREAM. And screamed. And cried. For over an HOUR afterwards. Then she was whimpering and crying out every time she would move and wouldn't let us put her down all afternoon. Both Brian and I cried. It was awful. We felt terrible for her and were so afraid she was in a lot of pain. I gave her Tylenol yesterday and over night and thankfully today she seems much better. I hope I NEVER have to see that again. I wanted to kill him after he did it yesterday. It looked so painful and I was angry that he did it without any sort of pain meds or warning to us that it might hurt her.

What is also crazy is that her legs are in a completely different position now that she is in the harness 'properly'. I can't believe we (and all the medical people who have seen her the last 6 weeks) didn't clue into this.

To say we were upset yesterday both watching our child in pain and to hear how badly this whole "Pavlik harness" thing has been screwed up was an understatement. The problem was that when the orthopedic surgeon set her up in the harness initially he told us it would be fine to take her out for baths and to change her clothes. So we did. Lots. We treated her like a normal baby, who just needed to wear a brace over her outfits. No biggie. However, her hip is SO unstable likely the first time we took her out of the harness all those weeks ago her hip dislocated again and was never put back in place. Yesterday he mentioned "oh, well you might want to keep her in the harness at all times for awhile now".


I am very upset that this doctor never came back to check on her in the NICU after applying the harness. That was 6 weeks ago. You think they might have wanted to check it before now. Also now that I understand how unstable her hip is, it's appalling that the orthopedic surgeon never thought to tell us it might be best if she wore the harness 24/7. In this way we'd have to treat her as though she is wearing a cast, not a brace. Braces come off to wash. Casts do not. Kaia's pediatrician was no help either. She's seen Kaia a few times since her discharge from the hospital and could obviously feel that her hip was out of joint. Why she didn't think that was a problem, when the harness is supposed to be holding her hip in joint so it can grow properly is beyond me.

So, I am now pushing for a referral to the children's hospital where I work. Once we get there I hope we will be fitted for a new harness that has working Velcro (although this harness's Velcro might be just fine now that we won't be opening and closing the tabs so often since we won't be taking if off). I also hope that I'll get more clues as to how to care for a kid who is wearing a body harness instead of the absolutely nothing I've been told so far.

Such as: What clothes are best to dress her in? It's going to get cold here soon and she can't really wear pants. Are there any positions she can't lay in? For example, I've been trying to breastfeed her in the cross-cradle hold...but that puts pressure on her hips and legs, so maybe that's not the best idea? In that case, how should I hold her when I (am still attempting) to breastfeed her? Are there any parts of the harness I can remove in order to bathe her? What if she pukes or poops on it? Do I spot clean? With what? How do I monitor her skin integrity under the booties? Are there any worrying symptoms I should be on the look out for? I read on the Internet that you have to watch to make sure she can still move her leg, otherwise this can indicate nerve damage...but her doctor's never told me about this and I'm not sure if it is an issue I need to concern myself with.

I could go on with my list of questions, but I won't. You get the idea. Basically in hospital they put Kaia in the harness and didn't tell me anything else. When I asked if she could come out for baths they said yes. If I can't take her out of the harness EVER then a whole new set of concerns comes up. Which you think an orthopedic surgeon who has been doing this since 1987 would realize...but I guess not.

It's also sad that in addition to all the problems we've had breastfeeding, we've now lost bath time. And cute outfits. And snuggles without a harness in the way.

Kaia, maybe this will one day all seem like a funny memory of 'when you were a baby'...but right now it's really hard. And sad. And stressful. I just want things to be easy for you. Or at least not so hard.

Monday, September 12, 2011

In which I relax about the boob juice

Thanks for all your supportive comments on my last post.

I know I'm doing the best I can. Both Brian and I are. It's just hard when I feel like neither my pregnancy, birth or breastfeeding experience has been the way I envisioned. Breastfeeding was the one biological thing I felt I could 'control' or 'work on'. I couldn't control that my water broke WAY too early. I couldn't control the endless leaking of amniotic fluid. I couldn't control that Kaia was breech and thus I needed a C-section. I couldn't control that she was premature and needed to be in the NICU for 50 days. I can't control that Kaia has hip dysplasia and will be her in harness for months, and may need surgery and casting at some point. I thought breastfeeding was one of those things I could 'decide' on: ie "I've 'decided' to breastfeed". I didn't know Kaia would have a say in it!

On Monday we went back to the lactation consultant. She basically reiterated what we discussed last week: Kaia's latch is fine. She sucks well. She should be able to breastfeed. We should quit finger feeding her. End of story.

However, I continue to feel that Kaia does not get enough milk breastfeeding alone. My evidence is that her diapers aren't as heavy. She doesn't gain weight as well. She doesn't go 3 hours between feeds. She's just irritable from one feed to the next and doesn't sleep well. She doesn't look like her perky self. I'm her mom. I know her.

We were a bit upset and frustrated when we got home from the LC appointment. Lactation consultants are so militant! They are SO gung-ho about breastfeeding that they forget to be practical. While I'm completely on board about breastfeeding and the benefits of breast milk, I couldn't help feel a bit pissed off when I was reading a sign in the LC's office that RANKS the 'best ways' to feed your baby, with exclusively breastfeeding at the top, breast milk in a bottle as second, donated breast milk as third (and where the heck does one get this? Certainly can't pick it up at the corner store!), cow's milk formula as 4th and soy based formulas a distant 5th. How shitty would that make you feel if couldn't (or didn't want to?!) breastfeed and your kid was allergic to cow's milk. Sorry are being fed in the 'worst' way possible. Nice.

The basic truth is that I can't feed Kaia 24-7. Kaia can't breastfeed 24-7. I can't do supplemental feeding at with a tube taped to my boob she doesn't latch well with the tube in the way. Finger feeding is not practical for use on the go (and we have to be on the go a lot as Kaia has a lot of doctor's appointments the next little while). We shouldn't be made to feel like we're failing for feeding our child in a way that makes her happy!

We got home from the lactation consultant appointment and decided that while we are committed to Kaia getting breast milk, we are NOT going to sacrifice her happiness, our sleep, and my stress levels anymore.

So we went and bought a bunch of bottles, a bottle warmer and a microwave steam sterilizer.

I continue to pump, so Kaia continues to get nothing but breast milk, and at each feed that is practical (which is any that are at home) I attempt to breastfeed her first, before giving her a bottle. She seems to suck on the boob for about 15-20 minutes before getting tired and then she gets a bottle of however much she wants afterwards.

And you know what? I'm okay with this. In fact, it's been working quite well. It helped that I checked out the preemie page on babycenter and many moms found that their preemie took a lot longer to learn to breastfeed (if ever), and needed a bottle for longer because they got too tired breastfeeding (exactly what I feel is happening for Kaia!) Because Kaia is now full term baby size (almost 7 lbs!) and is over 'term', it's easy to assume that she should act and be able to do the same things that a full term baby can do. What I have to keep reminding myself is that in gestational weeks 32-40, when normally babies are just relaxing in the womb, chillin' and not having to do much of anything, Kaia had to learn to breathe, learn to eat, keep herself warm, was separated from us, and has had to deal with being in a harness to fix her dislocated hip! That's a lot for one baby. It's amazing that she's doing as well with breastfeeding as she is.

The last two weeks I've felt like such a failure as a mom, and frustrated with Kaia that she won't act like a 'normal' baby. I kept comparing myself to my friend who breastfed her daughter exclusively, and have listened to endless stories from my mother and mother-in-law about the wonderful time they remember having breastfed both their kids. But you know what? None of them are Kaia's mom. They fed full term babies. I have to do what is best for us and for Kaia. As much as it's a lot having to feed her twice (once with the boob, once with the bottle) AND pump, it's worth it to ensure she's A) getting breast milk and all the benefits that entails, and B) that's she happy, healthy and growing well.

We've also started to enjoy one of the perks of non-exclusive breastfeeding. Which is that we BOTH get to feed her. I knew before Aidan or Kaia was born that Brian would be a great dad, but even I'm impressed at how helpful he's been and how great he's been through all our feeding challenges. I don't know that any of the women I'm comparing myself to had the support that I've had. Because they exclusively breastfed they HAD to be the one to feed the baby, and because their babies fed well, they only needed one person. Since Kaia's presented a little more of a challenge, she has involved BOTH her parents in her care, and I refuse to see that as a bad thing. It will be more difficult in a week and a half when Brian goes back to work, but I'll deal with that as it comes. I'm off work for a year, so really...what else to I have to do but feed my kid!

So that's that folks. We're back to Kaia's pediatrician on Friday for a weigh in and I'm actually looking forward to it! My baby's thriving and it's no one's business but ours how that happens.

So there.

Did your breastfeeding experience go the way you planned it? If it didn't how did it make you feel? How did you resolve the issue?

Saturday, September 10, 2011

The opposite of easy

2 months old! Kaia was due on September 1st, 3rd or 5th considering who you asked (OB, me or Neonatology), but any which way you count it Kaia is finally considered full term!

Just to round out my completely abnormal pregnancy, birth and lactation experience, because nothing could be problem free, we are STILL finger feeding. Kaia has decided that while latching on to the boob is fun and all, the nipple should dispense milk like a pop machine, no effort required. Thus she DOES NOT SUCK for any longer than a few minutes at a time. We have had a couple of weight checks and when Brian and I were finger feeding her almost exclusively last week, she gained 135 grams in 4 days, but as we tried to cut that out more this week and let her get 'hungry for the boob', she only gained 50 grams in 6 days. Not enough, considering they want her to gain between 20-40 grams per day.


We have seen two lactation consultants, but as one would expect from those who have to only 'show' rather than 'do', their solutions are less than perfect. The first one was the one who turned us on to finger feeding on Kaia's last day in the hospital. Her rational was to do finger feeding for a little while and get Kaia home, as studies show that finger feeders transition better to the boob than bottle feeders.

The next lactation consultant we went to see said that we should 'move away' from finger feeding and that babies should feed at the breast and that babies respond to 'flow'. Therefore I likely have slow flow at the nipple and that I should be pumping more (!!!) and should set Kaia up with a lactation aid at the breast (look it up if you don't know what this is). Setting up the lactation aid is all fine and dandy when you are in a nice comfy office, well rested with multiple people to help you...but at 4 in the morning when you've had NO sleep and your kid is screaming and has just peed all over, the LAST thing you want to fiddle with is tape and small tubes and trying to get said crying child to latch on to not only your nipple but the small tube as well.

So while my father in law didn't mean to be philosophical when it said it, I have liked his recent pronouncement on child rearing: First you do what is right, and then you do what works.

Right now, a lactation aid at the breast doesn't work for Kaia or for us. It's too finicky and time consuming, although I understand the principle behind it (breast=milk). So, in ordnance with the above stated philosophy, to feed our child we are doing this: At each feed start with breastfeeding. Continue until she isn't sucking, seems overly fussy, or appears full (this last one hasn't happened yet). Then I pass her to Brian who finger feeds her while I pump. Then wash all pumping and finger feeding supplies and repeat in 3 hours. She is getting nothing but breast milk, which I'm pleased about and my supply seems to be doing okay, so we are going to stick with it. Hopefully (soonish??!) she will take more at the breast and less of the supplemental finger feeding, and will continue to gain weight.

I'm worried about the soonish part, because while this works while Brian is around to help me, in two weeks he has to go back to work and then I'm on my own for all feeds except those that fall between the hours of 5pm and 10pm. And the routine of feeding Kaia can take about an hour at this point, so it will be even longer if I have to do it on my own. I REALLY REALLY don't want to transition to bottles...but I might have to in order to get some time to sleep in there.

All of this of course brings up feelings of failure, disappointment and inadequacy in me. I realize I'm doing the best I can, but it would be so lovely for just something to go SMOOTHLY. It wasn't getting pregnant, it wasn't staying pregnant, it wasn't giving birth, it wasn't the NICU stay, it wasn't the home coming or breastfeeding.

Maybe it will be the transition to solids? Here's hoping.

Monday, September 5, 2011

How would you say it?

A week and a bit at home.

Kaia is doing well. She is starting to breastfeed a little better and Brian and I are sleeping in shifts so we don't die of exhaustion. For the time that I'm sleeping he finger feeds Kaia. This makes me feel a little better as we can at least monitor how much she is taking during those two feeds and I'm happy to report it's no more than what she 'should' be taking for her weight, about 2 oz. I figure if she wasn't getting enough via the boob, she would likely be STARVING during those feeds and demand to eat a lot more. So this makes me happy.

I do need your help though.

I am planning to send out a birth announcement card for Kaia, but would like to acknowledge Aidan on it. My question is how should I go about doing that? Should I say something like "remembered and missed at this special time, big brother Aidan"? or more subtle and put at the beginning of the card "we joyfully introduce our second child, Kaia"

I don't want the card to be ABOUT Aidan, as this is Kaia's moment to shine...but I would like it to acknowledge him as part of our family. Someone recently posted a rainbow baby birth birth announcement that they saw in the paper that acknowledged a dead child and I thought that announcement did a pretty good job, but now I can't find it. If that was you, please let me know what it said.

Also, if you have any ideas can you reply soon as the site that I want to order my announcements from has a sale that ends tomorrow!

Kaia is waking up so I must go and leave you with a picture!!!

That's all for now!