Saturday, February 23, 2008

Mooma or Bust (no pun intended)

Alternate titles for this post are also:
  • There Are No Magic Ni*pples
  • Why We Don't Leave the House
  • No, You Can't Watch Us Feed E
  • Down's Trumps Everything
  • Just Because You've Had One Doesn't Mean You Know Anything About Babies
Disclaimer: Ni*pples is spelled with the asterisk in order to avoid those searching for enhancements to their adult entertainment to reach this site. Also note, this will be a lengthy post about breastfeeding and will talk about breasts, ni*pples, etc. If this makes you squeamish, please come back another day. Also, there are numerous rants and opinions expressed. I'm not looking for debates about breastfeeding vs bottle feeding or breast milk vs. formula. I'm only telling my story and experience with E.

Mooma is our word for breast milk, the magical elixir produced by Mama in her guise as a cow (moo). When I was learning to nurse with M, I told my sister that it was hard being the cow. From there, the word mooma emerged. This is my account of how we're moving from bottle feeding to breast feeding.
Let's begin with what we know:

When we left the NICU, we were bottle feeding E every three hours or so and she was taking about 2 oz. (60 mL) per feeding. We'd worked really hard to get her to that point after learning from the neonatalogist that eating for E is like running a marathon every time, and with the hypotonia (e.g. low muscle tone of DS babies) and jaundice exhaustion, learning to eat was really a struggle.

We also learned some techniques from a physical therapist, such as leaving the bottle in (not burping her every X oz) because it wastes energy, holding your middle finger under her chin for support, keeping the bottle straight in (not letting E move it to the side) and keeping it steady, don't worry about the dribbles, and holding her close to us to give her body support, etc. The PT also gave us some suggestions for when E fell asleep and stopped eating.

And this is where it gets difficult and very counter to everything you read about feeding babies. Babies are supposed to feed on demand, not on a schedule; babies stop eating when they're full; babies will wake when they're hungry, etc.

Hating the feeling that we were force feeding E, we went home and fed E on demand (which we'd done in the hospital), but I know I didn't use some of what I considered forcing activities to ensure E drank X amount. When we went to our first well check 5 d
ays after coming home, E hadn't gained weight, which is not good for a newborn. Our pediatrician told us that 1 oz per day is what the expectation for babies. A new strategy was needed. T and I returned to the "forcing" activities and resumed our vigilance on how E feeds.

Let me tell you. It wasn't pretty. Here's how a typical feeding would go:
  1. Put E out on leg holding her by the back of the head/neck/shoulders. Unfortunately for us, putting E into a cradle hold for feeding invites immediate sleeping, especially if I was feeding her
  2. E. begins to wiggle. And flail. And writhe. And contort. And thrash herself into a different position.
  3. Tuck burp/wash cloth under her neck (this usually excited her so she started flailing even more).
  4. Insert bottle in mouth.
  5. Balance squirming child in one hand while holding bottle steady with thumb and forefinger of other hand. Use middle finger of bottle hand to hold pointy part of chin. Watch milk dribble out face and down chin into washcloth.
  6. Watch as E paces her self through feeding. When extra sleepy or falling asleep, pull out Parental Dirty Trick Bag to entice her to stay awake. Such tricks include:
    1. Unclothing her, especially her feet
    2. Tickling her back or feet
    3. Feathering dry washcloth over her face
    4. Using wipes on face or feet
    5. Rubbing head, cheeks, face, etc
    6. Changing her diaper
  7. When E indicated she was done (which she really does), wipe her up and discard sopping under chin(s) cloth and burp her.
T and I returned to these procedures and lo and behold - Success! E began to gain again at more than an ounce a day.

So, while we were perfecting these techniques, I have been having my ongoing relationship with George.
Every 2 - 3 hours, George and I would meet. Fortunately, I kept up with the demand, although we used formula to fortify my breast milk to 24 calories (usually it's 20 calorie) and for the occasional bottle when I hadn't pumped enough.

I should note, that since her birth, E has been very interested in breast feeding. Each time I'd try, she'd indicate interest (panting, more eager flailing, etc.) but she wasn't able to latch on. She was thrusting my ni*pple out of her mouth. The first lactation consulted suggested on our second visit that if I could just stand the pain of forcing my ni*pple into her mouth and waiting, that E would draw it in far enough to get milk. For those of you reading who have never breastfed or who don't have the equipment for it, the latch (e.g. how E is position at the breast for the drawing in of the ni*pple) is EVERYTHING. Bad latch = painful ni*pples = very unhappy mamma = very unhappy everyone.

Needless to say, our second lactation consultant gave us some more useful advice. Additionally, we saw a speech therapist to make sure that E was feeding productively. By the time we saw her, E was doing great. Sure, she still dribbled, but overall, her feeding was as good as other babies. The therapist didn't have any additional suggestions for improving her bottle feeding. Neither did she have any suggestions for how to get E to breastfeed. I won't go into a huge rant about that, but suffice it to say that it floored me that when there's a known delay in speech capacity (DS) that breast feeding can help with and you have a mother whose main concern is to breastfeed and shown such commitment through her ongoing relationship with George, then perhaps it's time for some new training. Talk to lactation people, talk to special ed people, attend a conference, something. Don't take out a binder and read to me stuff that I downloaded off the internet. Expand your professional horizons so that you can be of the best assistance to your patient. [end rant, also disclaimer that I'm sure some therapists do have a wider knowledge base and may have been able to help me. I'm not bashing speech therapists, just frustrated at the one we saw who seemed to have no knowledge to provide but who also didn't have any desire to help or expand her knowledge.]

Anyway, with the failed speech therapist, I turned to another lactation consultant for help (on 2/4). She suggested trying to finger feed (having E suck on a very clean finger that has a feeding tube (see E's nose for reference) inserted along side it into E's mouth. The sucking necessary to get food from the tube is similar to the tongue motion/position needed to get milk from a breast. [Aside sucking from a bottle ni*pple is not at all the same as sucking from a human ni*pple]. The lactation consultant also suggested more skin-to-skin contact time, which would help both of us. E would become more organized for feeding while I would produce the good hormones (prolactin I think) that helps make milk.

So, E and I went home and tried these suggestions. E did great with the finger feeding. As we had to feed her anyway, it was easy to change how we did it. Skin to skin time, though, was more challenging. See, it's not as if we've been loafing around eating bon bons. With everyone home, one parent was wrangling M while the other was in charge of E. In between, meals were made, clothes were washed, and the house given cursory cleaning. On days when M went to school or her grandparent's, T and I were busy with doctor appointments and catching up. Not to mention the everlasting need for me to pump breast milk. Still, T and I did what we could. Without a few days to really concentrate on nursing, though, it didn't feel like we were making much progress.

Finally the weekend of 2/9, I'd had enough. We were scheduled to go see my sister, but was waved off when our niece came down with strep throat. Happy to dodge that bullet, but sad not to see my sister, I made the decision to just nurse. The original PT from the NICU made a great statement that there were no magic ni*pples and that we would spend a lot of time and money trying various bottle systems to help E eat. She suggested that we just pick one and stick to it. It seemed to me that this is true for my ni*pples as well. I don't have magic ni*pples either and E would have to learn to eat from them just like she did with our bottles. What better way to learn than through doing.

Through the weekend, I nursed, gave a bottle, and pumped. Then, I decided that we just nurse, no bottle. By the next Monday (2/11), E hadn't gained since the Friday before (we know this because she was being weighed at least weekly). The lactation consultant made some suggestions, evaluated our technique [because both E and I have a learning curve], and sent us on our way. By that Wednesday (2/13), still no gain. Our pediatrician put us back on bottle supplements.

For me and my personal beliefs, breastfeeding is the only way to go. In the news earlier this month, researchers have found stem cells in breast milk and speculate that there are developmental markers in breast milk. Formula (to me) is only equal in terms of nutritional value. Formula doesn't have the untold benefits because researchers and companies can't duplicate, not to mention just the bonding time that comes with nursing. For E, with the Down Syndrome, breastfeeding is especially important because of the physical development that is necessary for nursing that will help with her future oral development.

When our pediatrician told us to go back to bottle feeding after nursing
I had a little melt down.

I'd been patient. I didn't push breast feeding in the NICU because we just wanted to get home; we used formula when necessary, but I worked really hard to have breastmilk for E; I went through two useless (to what my goals were) "experts" thinking that surely they would have some help; T and M were forced to put up with the bottle making, pumping, feeding routine which is a HUGE time suck; we'd juggled appointments and life with T shouldering the bulk of the non-E activities so that I could traipse around in my bathrobe (for easy skin-to-skin access to E) with E attached or nursing; and my Mama instinct said that it was time to nurse and that E would get it just like M did and that it would just take time.

I felt horrible and stupid and like the biggest failure. Here I am (the Mama) forgetting the Feeding 101 Lesson that we received in the NICU. Going to 100% nursing exhausted E. On the good side, she nursed enough to maintain her weight for 5 days or so, but she doesn't have the skills necessary to breast feed enough to gain. The difference in how to suck means that we're retraining E for a marathon.

So, here we are, back to nursing, feeding, and pumping. We feed about every 4 hours, which isn't too bad of a scheduled, except that I have to pump about every 2 to increase my supply (which had dropped during the great Exhaust E Experiment) and to have it in place when E moves to all nursing. I'm hopeful this will happen in the next couple weeks. Additionally, last week, I learned to give the formula/breast milk supplement via the feeding tube while nursing (it runs alongside my ni*pple). Unfortunately, E doesn't like it very well, although she did fine when it was alongside my finger.

The feeding of E consumes me and the rest of us at Chez Bubela. I'm really grateful that T is as committed to E breastfeeding as I am because otherwise, I think we would have given up weeks ago. We think, though, that it will be best and once achieved, it will be such a relief and free up time for all of us. So, until then, if I owe you and email, call, or visit, I'm working my way through them as time permits. I'm figuring out how to wear a wrap so that I can carry E around and, perhaps, free up time and hands so that I can make pennants (
Mooma or Bust!) that you can waive to show your support. :-)

2 comments:

Leah said...

HANG IN THERE!!!! I know exactly how frustrated you are! The memories I have of trying to get Angela (now 11) to nurse making me exhausted just thinking of them. Angela never did catch on, partly because we later found out she didn't have a safe swallow (she was aspirating liquids) but nobody picked up on that. Your best bet is to get in touch with other MOMS who've successfully breastfed to find out any techniques you might not have tried yet. (I'm sure you've probably done this, but thought I'd throw it out there just in case!) I post on a site called downsyn.com (go there and scroll down to the "forums" button.) there are lots of moms on there, and I would venture to say at least 50% or more successfully breast fed. There is one mom who has 11 children, her little guy with DS being her youngest. I bet she'd be a GREAT resource! Don't forget to take care of you. Get a 10 minute walk around the block in or something so you can catch your breath. ((((((((hugs))))))))))

Katy said...

J, I can't full appreciate what you are going through, but know that you are a terrific Mom and an inspiration to us all. While this may not make you feel better during these frustrating and trying times for Chez Bubela, if you need an ear to listen, I am here. (I can also sympathize with your medical expert stories...now that is something I have some experience with :-)