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Awkward

So, here's the deal:

Under what circumstances do we tell people outside our intimate circle of friends and family about E's Down Syndrome? These would be co-workers, casual acquaintances, in other words, people we may not know well (or with whom we're reconnecting) but who would touch our lives in some way.

Here's why I ask:

1. We don't (and wouldn't ) introduce family members or describe them with an, "Oh, that's my wife, she limps." (I don't, but you get the idea). Why should E's diagnosis merit preemptive mentioning?
   
2. There will be enough preconceived notions about what a child with DS will (not) be able to do, why trigger these in someone who won't really have any personal interaction with her or us? The DS is just one part of who she is and what she will be able to do.
   
3. When we tell people, we have to deal with their baggage about it, not just their preconceptions about Down Syndrome and what it means. Mostly, telling has been a positive experience with people sharing stories about people they know with DS and so on. We have, though, had some reactions from within the intimate circle where we ended up defending and justifying our decision. We know that we will have to educate people about the realities of DS, but we expected support and understanding. When we didn't receive it from those closest to us, it's made us a little defensive about telling others who don't know us. Why take on someone else's baggage about the decision when we have our own?
4. If we don't tell up front and the person later finds out, will we ruin an opportunity to connect with someone as I did when I told M's dance teacher? In telling, I found out that the studio's owners have been thinking about offering a dance class for kids with special needs. Yay!
5. If we don't tell up front, will the person feel like we're hiding it or are ashamed of E? I tend to err on the side of telling people up front so that if they see us, there's no question or awkwardness as they try to figure out if she has something wrong* with her. She has obvious physical characteristics of Down Syndrome, but without stating it clearly, people may wonder.
   *not that there is anything wrong, just that she's not genetically perfect. She's perfect to us just the way she is.
6. Even though we don't want to make a big deal about it, at the same time, it is a factor in our lives and in controlling who is told and how allows us to control the message, as it were.
   

For me, I think the situation will have to determine how/if the person is told.

Family Newsletter: February 2008

Editor's note: I've opted to change to monthly vs age by month (e.g. 2 mo for E and 57 mo for M) title because it's too hard to keep track. Ergo, this is the February recap. I'll also be trying to post the newsletter at the end of the month.

My Beautiful Girls,

This has been a very busy month for all of us, but especially you E. You've spent a lot of time in the car as we follow-up the outstanding items from your time in the NICU and general preventive medical issues. Your hearing is normal (we think), your hips are fine, and you continue to gain weight well.

All our time hasn't been spent in the car, though. Your personality continues to emerge with every alert period (usually the 45 minutes after eating) when you like to wiggle and look around you. We have a musical light that you enjoy gazing upon as well as various other brightly colored or contrasting objects. You wave feet and hands vigorously and are especially drawn by things that are red.

You've begun "talking" to us. You have a number of sounds you make including one frantic little laugh when facing the bottle and a funny coo when you want to talk. You also smiled at me one day, then at dad a few days later. You have a beautiful smile and you gave me such a big one for your first time. I was half convinced that it was just an involuntary one (which you do when you're sleeping), but then dad came into your room with you a few days later and told me that you smiled for him!

Other firsts this month were that you're beginning to find your hand and I'm convinced that you will suck your thumb like your sister does; you've had your first baby massage (good for weight gain and general well-being); and you've had your first cold. We also had our first assessment with Early Intervention and so far, you're developing as you should, which was good to hear because you are so strong and curious that it's hard to see where you have developmental delays.

You're very determined to be in the position that you prefer. If awake, you prefer to be held cradle style so that you can see what is happening. When I am nursing you, if I've put you on my shoulder or laid you on my chest for burping, you will start bobbing your head towards my breast if you're still hungry. It looks like those birth videos where they put the baby on the mom's stomach and the baby begins working its way towards the breast. You totally do the same thing. When you're awake, but quiet, you'll maneuver yourself into a position so that you can gaze up at me. You look at me as if I were a rock star, while I gaze upon you and think how beautiful you are and how much I love you. When we're having our Mutual Admiration Society meetings, I am reassured that I will be okay as your mom.

While you've been experiencing all sorts of firsts, your sister has become The Authority on all things about you. In fact, yesterday when asked who was in charge of you, M answered, "You, Me, and Daddy." When I asked again who was in charge of you, M answered the same. I told her that she was, in fact, not in charge of you; that it was just Daddy and me. M also likes to expound on why you have to stay in your car seat (for safety and it doesn't matter if you like it or not) and other manners of your care (e.g., burping, dressing, etc). Anything we share with M gets incorporated into her Big Sister responsibilities as far as she's concerned.

M, your first this month was the cavity you had filled. Needless to say, it was traumatic for all of us, not only because a cavity just sucks, but because our dentist wasn't the most patient with your fears. We'll be looking for a pediatric dentist for your future visits and will not expose you to his insensitivity. It's not that he is a bad dentist, but I think that because of your poise and maturity, that it's easy to forget that you're not quite five. Four does not have the skills to understand that postponing a tantrum will help get the job done faster. Regardless, this was one situation where I felt like I failed you for not protecting you and being a stronger advocate for what I knew you needed versus what he was providing. For that, I'm sorry honey.

You continue to be fascinated by lists and forms. Thank goodness for the people who bring scrap paper to schools because their outdated purchase orders, with their tables of numbers and products, are like manna to you. You pretend they are your homework and you complete them by lining through each item in various colors which indicate who will/will not be attending your birthday party. There have been a couple times where my presence was in question until I informed you that as Daddy & I will be paying for said party, we'd definitely be in attendance.

You also write page after page of names. In fact, one morning you and Daddy filled a half dozen or so of 5 x 7 cards with lists of things such as: Names People M Doesn't Know; Names of People M Does Know; Foods M will Eat, etc. Since the beginning of the month, though, you've progressed from asking us to spell out names of our family members and your school friends to being able to spell many of them by yourself. You find these lists to be treasures and it's been difficult to dissuade you when you've wanted to gift them to your school teachers or a favored dance teacher. Luckily, we've made the policy that we only give pictures and not lists which seems to have stopped you for now, but I'm sure you'll come up with some exception that will tax my brain to find a counter argument for.

You continue to process the changes in our family through various play scenarios. A few days ago, all Barbie Island Princess Mommy was nursing one of the babies. Then, this morning, as I was nursing E, you informed me you were going to feed your baby from your boobs. You then went in your room, returned to E's room with Sarah (one of the Fisher Price dolls), sat down on the floor, lifted your shirt and fed Sarah. I have to say, you had good technique, especially when you burped her.

There are some bittersweet moments with you as you make plans for you and E when you are big. One night, you said to me that you had a secret to tell E. Then you whispered in her ear (which I could totally hear), "I'll love you forever." You also told me one night that you'll probably get married first because you're the biggest. It's hard, sometimes, realizing that we've made a decision that will impact you, but Daddy and I hope that your compassionate and loving nature will continue and that you'll see how empty our lives would be without each other in it.

Lastly, this has been a big month because Daddy went back to work about midway through. While in one sense it was nice to resume our lives and learn what changes come from having two kids. In the other sense, though, there are holes in my day when Daddy is at work and M is at school. I look forward to the best time of day when we're all home together.

Love,
Mommy

Snow Birthday Cakes

What M does when helping Big Daddy shovel snow.













Mine is the green one!

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.

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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.

[Pause]

M: Mom, what's surgery?

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 days 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. :-)

Miss Six Weeks 2008

Measurements:

• Height - 22" (75%)
• Weight - 9 lb 4 oz (60%)
• Head Circumference - 36 cm (14 in; 60%)

Likes

• Being held while sleeping
• Classical music
• Baby massage
• My Big Sister
  

Dislikes

• Car seat
• Being tightly swaddled
• Cow based dairy products
• Being held upright against mom and dad's shoulder
  

Accomplishments

• 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

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.

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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.

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Giving oral gas drops to E one night via dropper:

M: How do you get them in her butt?

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