Thursday, February 28, 2008

Snow Birthday Cakes

What M does when helping Big Daddy shovel snow.

Mine is the green one!

Wednesday, February 27, 2008

Fat Lip

Meredith had her first cavity filled today. The dentist told her that the numb juice (Novocaine) would make her lip feel fat. The entire way home, I heard about how her lip hurt (from the numbness), between talking about the tractor trailer that was overturned and what movie we would watch when we arrived home. Then, the following exchanges happened:

M: Will daddy see my fat lip?

Me: Oh no honey, it only feels fat because it's sleeping like your tooth. It's not actually fat. It looks just the same.


M: It hurts and it feels like it's gonna have surgery.

Me: Your lip hurts and it feels like it's gonna have surgery?

M: [crying] Yes.

Me: I'm sorry to hear that.


M: Mom, what's surgery?

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. :-)

Tuesday, February 19, 2008

Miss Six Weeks 2008

  • Height - 22" (75%)
  • Weight - 9 lb 4 oz (60%)
  • Head Circumference - 36 cm (14 in; 60%)
  • Being held while sleeping
  • Classical music
  • Baby massage
  • My Big Sister
  • Car seat
  • Being tightly swaddled
  • Cow based dairy products
  • Being held upright against mom and dad's shoulder
  • Scaring mom & dad with my burps
  • Trying to head butt mom and dad when being held upright against their shoulder (see Dislikes)
  • Smiling at mom

Ready for Dance Class

Saturday, February 16, 2008

Some Recent Conversations

[not exactly verbatim, but very close]
M: You know those guys who catch horses?
Me: You mean cowboys?
M: No the horseriders with the ropes to catch horses
Me: Yes
M: They have a long rope with a circle at the end
Me: [thinking to myself You mean a lasso?] Do you know what that's called?
M: A horse catcher
Me: It sure is.


M: You know when we toot from our butts [pass gas] it's not like when you toot on a whistle.
Me: Nope it's not.


Giving oral gas drops to E one night via dropper:

M: How do you get them in her butt?


Thursday, February 14, 2008

Our Sweethearts

One Hurdle Crossed (Sort of)

Yesterday, we took E to have a BAER test. We were prescribed the test because Little Peeps failed her newborn hearing screen. Because Down Syndrome kids have a high rate of auditory problems (among other things), they went with the BAER test.

We suspected there was some hearing loss, but were pretty sure that she could hear something.

They hooked electrode thingys (I'm sure that's the technical name) to her head and behind her ears. Then they placed little earphones into her ears. The audiologist then made a series of clicks in her ears at variable decibel levels.

The results are that she hears normally in her right ear. In her left ear, she showed a moderate hearing loss (scale is mild, moderate, severe, profound). Further testing showed that she has fluid in her ear (common in kids, especially those with DS) which is probably causing the hearing loss. We'll be going back for a retest in a few weeks to see if they can measure her hearing levels in the left. The audiologist said that it would be very unlikely that her hearing loss is due to any nerve damage.

So, we'll see what happens at the next BAER test, but until then, it's business as usual at Chez Bubela.

Tuesday, February 5, 2008

Taking One for the Team

After learning about E's diagnosis, we read widely about raising a child with Down Syndrome. The more I read, the more I thought about how well positioned we were to do this. T and I work hard at parenting and living so our values and lifestyle are consistent. It hasn't been easy and it does come with personal and financial sacrifices. It's these things, though, that are at the heart of our family, and which made me believe that raising a special needs child something that we could be good at.

I also think that the universe must achieve a balance of some sort. Within the wider family, most of the nieces and cousins have been born to those of us of "advanced maternal age," e.g., I think the youngest woman of my generation to have a child was 34. We've all been hugely blessed with beautiful, healthy, wonderful girls. Given the statistics and how much we've loved being parents to M, I thought about how lucky we all were and how - even though no one would have ever asked it of us - that it was okay that we were the ones for whom the odds ran out. It's the universe in balance.

Being on this team, though, means that others have been selected for teams that would have felled me. The couple in the NICU whose genetically normal daughter had a congenital heart defect and are facing numerous surgeries and no guarantee of success. (It's hard not to overhear in the NICU). My beautiful 36 year old sister who had open heart surgery two weeks ago and was the small percent of patients with complications, none of which were life threatening, that take their toll. We've been lucky with E's heart. Given the statistics for which heart problems occur in Down Syndrome children, E's heart is great. There's a small murmur, which should close up, and a structural configuration which will prevent her from becoming a deep sea diver, but nothing life threating or that will require major surgery later on (knock wood). For this, I'm profoundly grateful that we've not been asked to be on this team and even more to those who are dealing with (or will deal with) heart problems.

It's this realization that we're all taking one for some team or another, that makes me very grateful for the gifts that I have in my life. So, thanks to the universe (and my sister and the couple in the NICU with the daughter with heart problems) for making this team a little easier for me right now.

Saturday, February 2, 2008

Family Newsletter: Month One

My Beautiful Girls,
It's been one month since our family expanded and I've always loved the monthly recaps by Heather Armstrong for her daughter, and I thought I'd totally coopt it for us.

This month has been a huge change for all of us. M, when you were born, I fell more in love with Daddy as I watched him become a father. This month, I've fallen more in love with you as I've watched you become a big sister. You've adjusted well considering that mommy and daddy's attention has become divided and most of our time is spent trading Sissy back and forth and attending to her needs.

While you haven't had tantrums or any major outbursts regarding Sissy, you have become a little focused on writing the list of people to be invited to your birthday party (not until May). I don't know if that's in response to having missed a school friend's party earlier this month or that it's something over which you think you have power, but it's become a major focus for you. As is the keeping of lists and Mom and Dad spend a lot of time helping you sound out words or names or just spelling while you write. I think it's your way of being able to be with us while we attend to E.

Adjusting also meant that some of your baby dolls, especially those you've decided are just born have spent time in the NICU. I hope that this is a healthy way to process our first couple weeks of January and that, despite impossible circumstances, that daddy and I balanced everyone's needs to the best of our abilities. I think we must be doing something right because during one of our "shift" changes which we had to do at the hospital, I was walking out with you past a display of nursing and medical memorabilia. There was an old nursing doll that you pointed out to me. A woman walking behind us asked if you wanted to be a nurse. You answered, "No." She asked if you wanted to be a doctor or if you wanted to take care of people. You again answered, "No." When she asked what you wanted to be when you grew up, you answered, "A Mommy." I could have cried from pride because I know that all I want to do as I grow up is to be your and E's mommy.

You've been very helpful with Sissy and interested in all things about her: poop, why mommy has to make milk for Sissy, changing her outfit for the day, etc. We've talked a lot about various body functions and you've handled any jealously pretty well. In fact, when you see both mom and dad without Sissy or upon arriving home, your first question is, "Where's Sissy?" or "What's Sissy doing?"

Having E has made a big change in all our family activities and E, you could not have been more welcome. Mom and Dad have spent this month, holding you as much as possible and doing all that we can to ensure that we have the necessary tools to help you thrive. We've remarked to each other how it seems like you have been here forever. I think it's due to the fact that you've been in our hearts that long.

Daddy and I have loved getting to know you. Even before leaving me, you've proven to be a strong willed little girl (like your sister) when you denied the labor nurse any sort of reliable monitoring. We have the pictures of the scabs on your head where the internal monitor was attempted and after you arrived, you've continued to make your preferences known very clearly. One of the neonatalogists said that you would let us know when you were ready to eat, and that's held true for everything. We've learned your cues for eating, sleeping, gas (and there's a lot of it), and when you want to be alert and wiggling.

You've surprised me because you're not at all what I expected. With all the reading that Daddy and I did before you arrived, we had a picture of an entirely different baby. Once again, you've proven in this first month that the learning curve is just as steep for me as it will be for you, probably more so for me. You came out and were alert, wide-eyed, and ready to be engaged. You wiggle and wave your hands and feet and diapering is just an opportunity for you to bicycle your legs likes there's no tomorrow. While you don't protest in the same way that M did, your displeasure is expressed through what Daddy & I call the "spitting camel."

You're very expressive with your face, especially when you're sleeping. Since you were born, we've seen you smile (and show your dimples). I said to one of the NICU nurses that although I knew the smile was involuntary I liked to belive that it was intentional. She responded that she thought so too. You also sneer like Billy Idol (according to Daddy. I thought it was more an Elvis look), and have started to form the "O" mouth that M did for a short time.

I think all parents must wonder at how much they will love another child. M asked me this summer about it while we were on one of our Mommy & M trips to Mackinac Island. I told her that mommy's and daddy's hearts just get bigger, and it's true. When M was born, my heart grew from the love I have for her and from watching T become a father. When E was born, it was as if my heart, which I thought was at capacity from loving M, was -in reality -the two sizes too small black heart of the Grinch that grew three sizes larger from our new family.