Fave-O-Lit Friday: Oz Squad

Dear friends & family;

With the recent onslaught of media coverage surrounding the word retard. Sarah Palin has unwittingly become the Momma Bear defender of all children with Down syndrome. It is important to our families that she be educated in disability history and why it is important that she not politicize THIS particular issue. It is important that she use her public platform to defend people disabilities and help others who will listen to her undrestand that the word retard hurts all of us deeply. That it doesn’t matter who you are, please do not use this word and please understand that it hurts our precious children when you do.

I belong to an advocacy group that works to educate people about Down syndrome. We are sending an open letter to Mrs. Palin- a non-partisan one…- to help her understand how important it is that NO ONE be allowed to use the word & that when she speaks, she represents all of our families and and our children that have Down syndrome regardless of politics because she is such a public figure. Please come join us in reaching out to her by signing our letter.

Thanks so much for your help!


Fave-O-Lit Friday


Dear Mrs. Palin, It’s not ok for anybody to use the R word. Your dear friend Rush included. I know you know this. Please don’t let politics affect your ability to defend your dear little one. Spread the word to end the word Mrs. Palin. Use your power for good. Sincerely, This Momma

PS: I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities

Momma Monday: No neh-neh

So the Quail and I are definitely done with our nursing relationship. It’s been a while since we tried and this weekend I thought I would give it one last try. I hate to think in ultimatums. And I did hold out one last bit of hope that as her imitations skills grew perhaps seeing her sister nurse would inspire her. A few weeks ago we were in declutter mode at home and Lovey asked if I was done with the bottle nipples I was using in nursing practice. I really hadn’t thought about it in a few weeks and it gave me a small pang to admit I was done. But I told him to go ahead and pack them up. Then a few hours later still ruminating on it I went and got one out to keep in my bedside stand just in case. I guess there is still a part of me that sees it as defeat and doesn’t like that.

But life goes on and I need to as well I guess. I need to have some peace about it. I think I mentioned my conversation earlier with Bad Mama about nursing and how she talked me through the fact that yes, the Quail did not no how to nurse, did not have the physical stamina to nurse, had sensory issues related to nursing and we did work through all of those. So yes, she did technically learn to nurse. Now she makes an active choice not to nurse. I know plenty of babies end up weaning early on for one reason or another. For me the fact that my 3 year old is still so devoted to the breast, it makes it hard for me to see that another baby of mine is not so devoted. But I’m sure this is just the first in a long line of life lessons in recognizing family resemblances but allowing for individual differences. The Quail definitely has a will of her own. I can probably credit her sturdy neck tone to all of her fighting  and shoving away from me in nursing practices.

So I’m working on not being sad about this. Or taking it as a personal failure. It’s funny because when I talk to other mom’s about nursing difficulties I would never think to blame them for it not working out, or tell them that they just didn’t apply themselves enough. So why I’m being so rough on myself I have no idea. I’m the first one to emphasize how hard nursing is to a new mom. The Quail did nurse. Our last most successful nursing that happily stands out in my head was during a therapy session after weeks of no luck. She latched on, settled in and nursed with the assistance of a bottle nipple and swaddle but little struggle otherwise. Kathy passed me a note quietly during it exclaiming, “Beautiful!” And it was. When we weighed her afterwards she had taken in a full 4 oz. A full feed, in 20 minutes from a little girl that months earlier struggled to extract a half ounce from me. That is success. It was sweet, it was natural, it was a triumph for both of us. Shortly after that we began 3 months of her being ill, stuffed up and the nursing strikes. We won’t be continuing to nurse but we did nurse. Yes we did.

My goal is two-fold now. First and foremost to focus on a snuggly bond with the Quail. Lovey hesitantly brought up our bond a few days ago. He said he wasn’t sure how I would react so he hadn’t wanted to point it out so blatantly before. But he felt like things had improved with my relationship with the Quail since we had given up our struggling nursing sessions. She responds more brightly, more openly and trustingly to my entering a room. She snuggles is when I pick her up and seems to feel confident in her home on my hip. She pats my cheek and gnaws on my chin. In the morning when I nurse Zuzu before work we have taken to snuggling up together as a threesome on the bed, Zuzu to one side and the Quail on my lap while we read a couple of quick stories. I still get to breathe in the scent of my heartsongs before I have to go out in the world. It gives me peace. It centers me and gives me strength. I’m no longer mentally focused on how to get everyone to be quiet and sit still in a house that is notoriously lively and full of energy just to reach one small part of a self-imposed goal. I’m no longer snapping at Zuzu or asking her to go to another room so that I can nurse her sister. That part of how things had become had always bothered me and hurt my heart as well as Zuzus. The thing I was most proud of when the Quail came home was the kindness with which Zuzu had welcomed her into our little nursing circle. To shove her out was not kind or natural. So ironically the upside of letting go of nursing the Quail is a stronger bond between all of us. And isn’t that bond one of the main reasons we nurse our babies in the first place?

The second part of the goal is the breastmilk itself. I hope to supply it in full to the Quail, first through her first birthday next month. Then hopefully through this cold and flu season that has been so hard on her little immune system. And this summer we’ll begin the transition to whole milk.

I feel good about these goals. They feel manageable.

Momma Monday: Let’s think about the word special

Stop me If I’ve told you this already. When I was in grad school getting a masters degree in social work my focus was on working with people with developmental disabilities. There was one class I had to take that the special education majors also took. I couldn’t even tell you the name of the class anymore. I’d have to find a transcript to label it. What I remember from that class was a girl who was working very hard to get the point of inclusion and that we are all the same in that we all have unique needs. I know now she really was trying, she was working hard. And now I appreciate that. At the time, I didn’t. During one class, she raised her hand and boldly joined in the conversation, proud of her epiphany, ” We all are disabled.” Hands shot up all around her and I couldn’t help my self. “No, We all have abilities.”

See the difference? While both are intended to be a step further towards enlightenment and understanding and acceptance of all people. Her version still had a negative implication. And as minor or politically correct as you may think it is- the difference matters. And let me stop right here first and say, yes- I do get that at least she got one part of the equation that a vast majority don’t. She got that we are all have the chance to fall into that category, that label, that stereotype. That just because you weren’t born and diagnosed with a disability, doesn’t mean you get a free pass at some so-called “perfect life” free from all hardship. Genetically something could be hiding. Is there anyone in your family that has had cancer, heart disease, a stroke, a mental illness or diabetes? Then yes- you too might be genetically predisposed to one of these diseases. And yes- you may cost the medical community time and money down the road. Maybe you’ll be able to manage it and it won’t have severe consequences and maybe you won’t. That’s yet to be seen. I could go on a tangent here about the diagnosing and eliminating prenatally of Down syndrome and where ethically we draw the line. Is it with people who show genetic markers for cancer, for multiple sclerosis, for diabetes, for blond hair, for a lack of math prowess, for someone who will take up smoking, someone who has a chemical imbalance and is prone to depression,  someone who will sponge off their parents and not make their own way in this world? That list could go on and on. If you think you have a right to life but someone with Down syndrome doesn’t, you best think closely about your loved ones and which of them fall into these other possibly identifiable categories. Now we can see the gene for breast cancer- so do they get to live? Aren’t they are going to cost the medical community a bundle as well?  Mind you- I’m saying this isn’t a good thing- this ability to start euthanizing at such an early notice and making so-called “socially perfect people”. Because trust me- human nature will find another line to draw between those that remain.

But I digress, hugely from todays point I want to make. The Special Education major. Obviously her heart was in the right place. She wants to help people. But to me there was still a thin line of work for her to cross over. She still was looking at people needing assistance at a certain level of any kind as different and negative. The word special, in spite of its definition, in terms of Special Education, is viewed as identification of challenges and how to we work around that. When people refer to a special needs child- they usually aren’t referring to the child who shows an astuteness in math, or violin, or art, or writing. But according to the definition of special- those children would have special needs as well. But with the actual definition of special- and here is where I’m getting to my point of the day; according to the actual definition of special- those children have special needs as well. They have a quality, an inclination, a natural talent, that is readily distinguishable from the larger population. They have an area that their parents believe, if given the proper attention, their child will find great joy in, will flourish in, will do like the natural they are. And so their parents send them to math camp, to private violin lessons, to the Governor’s School for Art, to the Iowa Writer’s workshop, they agree to have their child participate in the schools gifted and talented program so that their little Einstein can have his abilities challenged.  And guess what happens- they do well. They flourish. They learn so much about that area. They do it beautifully and naturally. But wait- it wasn’t just natural- it was a gift that was honed and refined. With the gifted and talented program our tax dollars went to fund because we believe it’s a good thing to help children get ahead. That’s special isn’t it?

And then there are the run of the mill “special areas”. Have you ever found yourself discussing any of the following topics with your other mommy friends either on-line or in person? Little Tommy isn’t sleeping well- anyone know of a good book on sleep? Little Timmy only says 6 words out loud but we are looking up information on signing- they do that at daycare and the kids love it! Little Betty is tantruming- I need to read some discipline books- or anyone have any ideas about what works best? Little Mary is such a picky eater- I make her separate food every night. Do you make your own baby food? Do you make a point to only buy organic? How do you potty train your child? Do you have a child that is allergic to peanuts? What crafts can I teach Bobby to do? How can I teach Molly to site-read? I’m going to home-school- I want to be sure I know what my child is learning- and I want to be the one to teach them. When you go to the restroom in Target does your potty-training 2-year-old start hollering, “Poopy diaper, Mommy has a poopy diaper!”  When you go to a restaurant, do you spend time teaching your child the basics of good manners- not to scream, run, throw food, use their inside voice?”

My point here- is that we all have versions of what we want to teach our child. Often modern-day, information-gathering, read-a-holic mommies and daddies, devour the latest philosophy and trends in the best approach to teaching our children. I do that. With my oldest- Zuzu- who is a newly minted 3-year-old, I have spent the equivalent of a PhD program’s research requirement in learning about her and her development and needs. I have an arsenal of parenting books- from a set of sleep books, emotional development, feeding and nutrition, discipline, health needs, attachment parenting, esteem building, raising a girl and learning to sign and communicate. What are the best toys- developmentally should we just use Waldorf style- imagination focuses, or bright lights and music stimulating toys?  Prior to that when I was pregnant I bought an arsenal of pregnancy books- pregnancy week by week, month by month, natural and high-risk care. Then came the birthing books- natural child-birth, hypnobirthing and c-section preparation. Then came the breastfeeding books, the pumping books- The Nursing Mother’s Companion, The Working and Nursing Mother, The Tandem Nursing books. Then after a few positive pregnancy tests (yes I mean a few- cause of course as you POAS-a-holics understand- if one test says you are pregnant, you best take 5 more just to be sure) along came the sibling relation books and how to help your first child adapt to her new role and know she is still loved and accept and bond with her sister. And of course along with all of these different topics and the technical knowledge I wanted personal stories. So on-line I went to hear what others were going through, what other’s were doing in their pregnancies- the birth forums, the blogs, the essay collections and a little fiction when I could find the time.  I also had 2 miscarriages before Zuzu- so more reading, more learning about how to make an egg stick and grow into fruition.  What caused my miscarriages, what tests did I need to ask for.

Sounds like I considered Zuzu pretty special don’t you think? She had needs, yes. And she is special. I spent an inordinate amount of time reading and researching what the best method for every little inkling in her small world would be. But that’s my personal style. I know lots of well-meaning, loving parents don’t spend all their free time with a nose in a book. And that’s ok too. But that isn’t me. Then along came baby number 2. And guess what- she is special too. And so I read about Down syndrome- about what to expect, about what will come and what it might behoove us to focus on at different stages of development. So I don’t get to be lazy this second time around. But knowing me and my preference for books and learning- it really isn’t any different. Both my children are pretty special. And my guess is if you are still reading this you find your child pretty special too. So aren’t we all more alike than different? Can you see that now?

Some people say having a “special needs child” (in the traditional sense of the word) is so hard and challenging. Well I would speculate that in the glass houses theory of how we are all prone to view others- someone is saying the same thing about your world. Someone is saying, “I wouldn’t go on to try to get pregnant after one miscarriage, after 2, after a failed adoption, after having one child, after it turned out you needed a c-section, after having grown up in an unhappy home, after my uncle had schizophrenia, after I only got a middle-income job, after I lost my job, after my partner was assigned to active duty, after I decided I would rather raise dogs, I couldn’t be a single parent; I would rather go to school, I can’t afford more than one child and staying home. I would rather spend my time doing what I want to do, after meeting my sister’s kids, after meeting my neighbors kids, after seeing your child flinging noodles at the restaurant last night, your child eating cat poop out of the sandbox at the park, after seeing your child eating non-organic mixed meat hotdogs, your child needs glasses, your child died, your child got sick, your child has x, y, or z. I couldn’t handle that. But hey- I can handle my own situation. I am grateful for my own life. Well that’s good. Be grateful- love your own life- but you don’t need to speculate about how you know you couldn’t handle my life. Because frankly- I probably couldn’t handle yours either. Or maybe I could- if it was my life and I was invested in it.

I say all of this because families of children with traditionally defined special-needs children aren’t to be pitied. They don’t want anyones pity. Maybe one day they are having their own private pity party and choose to share it- but don’t you have days that you have a pity party as well? I won’t take the time to conjure up another round of ordinary situations that might be construed as frustrating given the right circumstances here. I’m guessing if you have now read this far along you get the point.

The point is the perspective. The attitude, we become our thoughts. If we think negatively about a particular circumstance in life- then yes it becomes negative. I guarantee you somewhere in this vast world or at some point in time there is someone else in the same technical circumstances but the difference is they rose to what you perceived as a challenge and learned, and went on in life. So we don’t all have disabilities. We all have abilities. It’s how we look at it, approach it, think about it and define it that is the difference between you and me. Or maybe not. Maybe you see it the same now too. Maybe we are more alike then different.

** for a more articulate version of my point in relation specifically to Down syndrome- pop over and visit Miriam and read what she has to say.

Quail Day: Food and Love Week continues


First for the love- of now and of health and small ones. For those of you asking for an update; the Quail was taken to the ER this past Saturday after finding a temperature of 103.2. Her chest and ears were clear, her fever dropped and her flu test negative; but we were told if her temperature were to go above 101 again to start Tamiflu as that would most likely be the culprit. It did, we did and by Monday her fever abated but her breathing was a bit ragged. Another trip to her doctor and they could hear a few wet spots on her lungs now so an antibiotic, a steroid and a breathing treatment were added to the regimen. Yesterday we went back again and indeed it is pneumonia and there are still crackles and wheezes. We are to return tomorrow and if she still sounds wet we will change her regimen. She’s been home with Lovey and I for the week, therapy cancelled, happily snuggled in. Most likely this will repeat next week. Thankfully the rest of us seem to have been spared to date. Please think warm-chicken-soup healing thoughts for our dear bird.

When we last left off with nursing and the Quail on Monday’s post I was mentioning our transition from a SLP to Kathy, an OT at Pediatrics Unlimited. When I called her to ask for a second opinion and told her what the SLP had said, her response was that, “Teaching babies to breastfeed is what I get paid to do, when can you come in?”. When I showed her my collection of goodies that I’d been trying to use on my own for the past five and a half months one of her first comments was that a Z-vibe is a last resort and there are a number of things/exercises/activities/positions/etc that we should really look at first. While we had been working with the first SLP I had been googling and reading other families experiences with trying to learn to nurse a baby with hypotonia, or muscle weakness which is a hallmark in Down syndrome. There are a number of oral-motor development tools that can easily be purchased by lay people. One which you hear people in this community refer to frequently is a Z-vibe. I had gotten one and along with a Nuk brush  and began to try to use them in a simplistic manner to stimulate the muscles in the Quails mouth. When I had asked the SLP about these tools, since she would be familiar with them by trade she had indicated it wouldn’t hurt to try but offered no guidance in terms of appropriate or inappropriate usage, frequency, position, or possible ill-effects. So I had gone merrily along just inserting them into the Quail’s mouth before nursing thinking I was stimulating her muscles and that would help “waken them” and she would nurse better.

The difference in evaluation between the SLP and our Kathy was night and day. The SLP never even looked in the Quail’s mouth or held her. She watched me feed her a bottle and watched the milk slip out of the right side of  the Quail’s mouth while she was hooked up to an oxygen saturation machine every other week for 3 months. I didn’t know that there was more to be done. I was asking for help breastfeeding but the SLP was focused on just getting her nutrition through a bottle even though I said we wanted to breastfeed. To be fair to her we had not even been able to get her to use a bottle the first few weeks- she was too tired and weak. We were using an SNS and a syringe.  And as Lovey has pointed out when people talked to me about the trouble with breastfeeding I was quick to say that I didn’t care if she ever breastfed. I really need to be careful to qualify that statement. What I mean is I won’t take it as a personal injury or insult to my ego if she doesn’t. I fully get the impact and help it can give her with her development and ensuring better, safer management of eating solids and speech development and clarity in the future. I get that it will exercise her mouth in a way that can’t be entirely replicated with other exercises. I want that for her, I want her to be able to safely, happily and normally enjoy the foods her family and friends do. I want her speech to be clear and understandable so it doesn’t stand in the way between her and what she needs and wants. So it isn’t one more thing that makes her feel awkward or shy or defeated like she shouldn’t even bother with people. I want her to feel and sound confident. And now is the time that we can give her the best start in that direction. Now with working on this we can have an impact that just ignoring the issue or deciding, “Well, she’s doing well enough- she drinks some from a bottle and is growing essentially ok”. It doesn’t mean I don’t accept who she is or any future limitation she might experience. It means talking and eating are essential to everyone I know- and whether we all realize it- these are learned behaviors and the Quail’s learning needs might be a little different then the average baby. But she can learn and that’s what we as her parents are here for. But most people when I talk about it think it is some mother-trip that spurs me on. And that is not it. It isn’t about me. 

One thing that hadn’t occurred to me and might be a useful tip for someone struggling with nursing. I had tried a breast shield back when the Quail was about 3 mos old at the recommendation of the LC. But that wasn’t enough sensation to encourage her to nurse. Kathy said it wasn’t meeting her sensory needs. She had us switch over to using our Dr. Brown’s bottle nipple over my nipple- that is the thing that has given us success in nursing. I haven’t been able to wean from it yet- but it’s what gets her able to latch on and keep my milk flowing (although here you have to be careful too because it could reduce your milk supply if it isn’t working or baby isn’t latching properly.). But without it we wouldn’t be nursing at all at this stage. Also we had heard that Dr. Brown’s bottles were the bee’s knees 3 years ago- not the case now and we have gone through a variety of bottle choices at different stages as the Quail’s ability to take a bottle has progressed. Initially the SNS, then the syringe, then the soothie, then Dr. Browns, then breastflow and now a ventaire with a comfort-latch nipple.

Since August 3rd, 2009 we’ve been seeing Kathy, weekly to work on feeding issues- I so wish I would have known that there was better help and support to be had and what to look for in an OT/SLP. I wish I had known the variability in the practice of different SLPs and OTs. Sara Rosenfeld Johnson and her oral-motor strengthening protocol has been essential for us. Kathy has her training and follows her protocol with oral-motor issues. In fact Sara comes through her office twice a year doing evaluations. Kathy was kind enough to introduce us when we were there for an OT session the last time she came through. The Quail is a bit young right now to handle an evaluation as it involves approximately 2 hours of hands on, or rather hands in her mouth. We are thinking maybe next spring she’ll be more up for it. In the meantime I’m showing the Quail pictures of her new “Auntie Sara” so she won’t be so shocked when this stranger wants to get up close and personal! Kathy routinely holds the Quail and evaluates her oral-motor anatomy, her neurological and sensory needs, her suck-swallow-breathe reflex, her oral motor strength, and has developed and follows a plan with the ability to back up when we had trouble and look to the next step when we were mastering one step. She was aware of what gross motor issues we were experiencing that were affecting the Quail’s ability to get adequate nutrition (an extremely weak abdomen that with strengthening has lessened her vomiting tremendously- now she ONLY throws up about one ounce with each feeding) and referred us to PT when she saw the need was beyond her scope. As well as routinely asking if we had asked to see a pediatric gastroenterologist repeatedly until we finally took the gentle nudge and scheduled the appointment for evaluation for the reflux. We had been working on gross motor development at home with our EI but had not even been aware that the abdomen muscle weakness might be contributing to how much she threw up routinely. The abdomen is one more example in a long list of them; of how you can’t know what you have no experience with. I knew I wanted to breastfeed and it wasn’t developing. I knew she threw up alot. I knew that milk leaked out the side of her mouth when she drank from a bottle. I knew that getting good nutrition was essential to her ability to not have to have open-heart surgery in the future and prevent FTT being caused by her VSD. I didn’t know when to not use those oral motor tools when something simpler like your finger could be useful and perhaps more appropriate to address sensory needs. Certain exercises encourage certain behaviors. For example we were using lip-tapping to encourage her to open her mouth and root initially. That was good for encouraging breastfeeding. But at the point in which we are focused on; say the Honey Bear, or a spoon with solids, we start to veer away from lip-tapping because we want to focus on lip closure. In all our work we have never come back to that Z-vibe. Although we have occasionally brought out the Nuk brush. Most recently we started adding the finger brush into our daily routine of oral-motor exercises.

I could go on and on and I’m happy to talk to anyone that wants to go on at length about oral-motor issues/therapy. It’s definitely been the most structured and detailed of our therapies. And honestly after the first couple of months with the Quail I think most people would probably just have stopped trying to nurse and not considered her taking the bottle and a little dripping out as something that needs attention.  Our pediatrician certainly wasn’t concerned because she has been able to maintain her growth between  25%-44% on the standard growth charts. Same with our cardiologist and same with our EI. And maybe that is the case from some perspectives. I just know after getting no-where with the first SLP and having my idolized lactation consultants turning me away with little to no information other than a vague recommendation to find an OT or SLP that specializes in feeding that I wish I could go back and start the Quail with Kathy back when she was born. It would have saved me a lot of heartache and struggle and I have no doubt we would be consistently nursing now. We’re still working on it at 8 mos. 2 steps forward and 1 step back. But at least we’re still steppin!

We are wavering around another transition now. The Quail’s reflex to nurse is long gone. We had a period a couple of weeks ago where it seemed fairly evident that our attempts to nurse were coming to an end. But nothing is ever clear cut. Just as I was wrapping my brain around the notion of stopping altogether we stepped back from the edge of weaning and are continuing down a less dramatic but equally breathtaking path. It’s bittersweet to try to understand what the Quail needs. It’s hard to know when to let go of a goal, when to make a new goal, when to know you ‘ve done your best. Sometimes all it really is, is a matter of perspective.  A dear friend was listening to me was on about nursing the Quail and commented that I have taught her to nurse- which was the goal all along. It was not how I saw it- and yet when she said it I could see it as true. But more about that and the bittersweetness of it all on Monday.

Zuzu Day- Food and Love week continued

IMG_1812October  4th, 3pm, the phone rings and a secretary from Greenville Memorial Hospital, tells me that they are cancelling my induction for tonight. The moon is full, the beds are all occupied and basically there is no room in the inn. I’m paraphrasing of course. I was instructed to wait for a call from my doctor for further instructions. Dr. Bradley, the one obstetrician in the practice I hadn’t met face to face and who’s ego preceded him called 4 hours later saying there is room at St. Francis Women’s and Family Hospital on the Eastside of Greenville if my bag is packed and I want to change locations. It is, I do and we stop for a snap of the last moment of my heart residing within me in the door frame and head out the door. I arrive, get settled in with an Ambien, a turkey sandwich, a kiss and wish for good rest from Lovey and a carefully placed cervidil. We drift off to the sound of my and Zuzu’s heartbeats entwined and amplified through their monitors. The next day she made her grand entrance at 1pm. I spent the next 9 hours attempting to nurse her. At 10 pm that night the angel of a lactation consultant arrives and starts arranging pillows, hands and the baby. By that point I already had severely traumatized myself and was in tears and tears. So a pump was brought in to try to harvest the colostrum and give me a little relief. The next morning, Carrie the LC came back to us to check on our progress. She commented that nowadays it seems to be mostly the teenage mothers that instinctively know how to nurse without instruction. That the rest of us, ahem, slightly older, more mature mommies  tend to need more help, positioning and training. Over thinking it perhaps?

We went home from the hospital 48 hours afer the birth with a feeding plan reminiscent of the one mentioned yesterday. A big challenge was keeping our little snuggled bundle awake. I remember crying through the failed attempts at latching, the pain of engorgement, the fear and paranoia of the hourly pee/poop/nurse/supplement checklists. I called the warmline at STF  Lactation Center at all hours far more than my pediatrician during those first weeks. Although we spent our fair share of time there as well. Along with new nursing came thrush, then reflux, then a dawning realization that Zuzu did not want to be set, let alone laid down to sleep. Part of that was the reflux- it physically pained her to lay flat and she would jerk and arch her small back away from the bottle or my breast as often as she would take it.

Part of  that was new parent jitters, hormones and frayed nerves. She’s crying, why is she crying, when will she stop, how do we make her stop? I remember distinctly fretting each and every time I walked in the room where the baby was. If she was laying down I fussed about why no one would hold her. If someone was holding her, I fussed about how she would never learn to put herself to sleep. I am blessed to have ever patient grandparents for the girls on both sides as well as an extremely connected, patient and accepting husband. They all watched my postpartum hormone shifts with just the right amount of disconnect to tolerate being with me and enough responsiveness to save me and Zuzu from them.

At the time I worried I wasn’t bonding enough and my new- mother-wings were leaving me flapping alone in midair with only a crash landing in my sight when I finally tired of treading air. I was shakey, sad, unable to lay down myself or hold Zuzu on my chest for any length of time. I needed sleep desperately but could not contain the onslaught of hormones enough to feel an ouce of mellowness necessary to snooze. After 3 calls to my OB over the next week and a half indicating I wasn’t doing well hormonally I was prescribed a low dose of Lexapro and assured it would help me relax and not harm Zuzu. It was sweet relief to hear the sound of help on its way and validation that once the hormone levels settled things would ease up and we would settle int a comfortable and caring routine. That this is not uncommon or foreshadowing of terrible inept parenting on my part to come. 

IMG_2060The grandmothers were so kind to each in turn extend their stays to help care for us, our home and this sweet baby. It was boot camp that first few weeks and fortunately for me everyone who came in tern to stay at the house was more than willing to step in for holding duty. Friends and family alike. Lovey, Zuzu and I are eternally grateful to you all. It really is a time like this that illustrates how you can’t and shouldn’t go through life alone. It is so very necessary to be able to reach out to those around you and let them care for you. It only serves to strengthen you and the bonds around you. Those first 3 weeks Lovey, Nana, Gramma and I took shifts at night with Zuzu using the SNS and later a bottle of pumped breastmilk during the night. I picture it now and everyone trying to stay up and hold Zuzu upright so she wouldn’t cry and can see the red flag  that she clearly needed reflux medications at the time when she slept propped upright against our softly snoring selves.

IMG_1995Around 3 weeks into our new lives I was still fretting over my new responsibilities. I remember dear Julie talking to me late at night and early in the morning and validating that if one bottle a day wouldn’t hurt Zuzu then do a second bottle so I can get some rest. Our pediatrician at the time, also a young nursing mother but miraculously full of energy and strength validated the same and also that if we needed to hold the baby or co-sleep we should do whatever works, safely, but whatever works. I struggled with the  decision to co-sleep and still do, but that’s another story entirely. My dear mother sat down with us; and as I write this with the wisdom and distance of 3 years of  having my own heart living outside of my body I can smile at her concern and desire to stop her own small one’s pain and struggle. She helped formulate a schedule of bottles versus nursing to try to ease some of the pressure off of a sobbing me. That is all it took a little hormone control, a little easing of the pressure, validation and caring from my own mother and suddenly it was fine. I didn’t need the schedule and I was fine nursing Zuzu night and day with just one feeding done by Lovey and a bottle. I still believe that was a large part of securing their strong bond. By this point I had physically healed some, the reflux medications started to ease off Zuzu’s pain and my own medication helped to start regulating my hormones so that I could see that life would go on one day at a time, not just one feeding to the next. Zuzu started to smile and respond to us and light up our worlds.

IMG_149618 months later she started to wake every 2 hours to nurse. At that point I hit my second wall and I did actively nightwean her. It took one night of telling her no and some perspective in my phrasing. We changed to an explanation that the neh-neh’s were sleeping and they would wake in the morning to nurse her. She cried that first night for an hour, the 2nd night she woke to ask if the neh-neh’s were sleeping, if the TV was sleeping and then settled back in between Lovey and I herself till morning. This went on for a week and then she ceased to wake during the night.

It was a few months later that the Quail was conceived and we struggled again with further weaning. At the beginning of the year when I told Dr. Bradley of our plans to conceive he had instructed me to wean first since there was a connection to miscarriage and nursing due to the contraction of the uterus it caused. I was in need of progesterone to sustain the pregnancy and he instructed me to call him back when Zuzu was weaned and we would go from there. I did the nightweaning but felt like I needed to try from there. In June that same year the Quail began to gestate within us. Lovey and I talked about weaning, both for the Quail’s sake and also unsure of what it would do to Zuzu to have to share her neh-neh’s and the responsibility, energy and effort it might take to tandem nurse. I started reading La Leche Leagues book on Tandem nursing and it calmed me and let me to the decision to not actively wean Zuzu. Midway through the pregnancy when the milk dried up I figured she would stop anyway. I remember those early summer nights lying in bed nursing Zuzu after we had transitioned her to her big girl bed and hearing the small cheaps and chirps of a family of wrens building their nest and expanding their own family in the nursery window.  I would read Zuzu three small stories of her choosing and then we would lie side by side listening to a collection of lullabies while she rubbed my belly and drifted off and I reread Catherine Newman’s, “Waiting for Birdy”.

Time passed, further weaning ceased to exist and the Quail’s arrival was upon us on that frosty February morning. My mother, after multiple rearrangements of her plans, due to my naive “planning” of the birth of the Quail arrived less than 24 hours before labor began and the next chapter of our lives opened up before us.

Momma Monday- Food and Love Week kicks off

IMG_1853A few of the families have been reminiscing or examining feeding with their baby that has Down syndrome. I had replied to couple of these posts but then realized it was time for me to put finger to keyboard and document our own experiences with this arena. The interesting thing about it for me is when I started to write about it, it was long, and tedious, and I think anyone who hasn’t been in this situation reading it would be put off by the amount of time, effort and struggle that has come along with it when the history is summarized here. But I’m as surprised as the next mom that there is so much to say about it. And yet I’m not. I think it is the examination of such a basic function in our lives that is long. We spend the majority of our day eating, planning to eat, thinking about eating. Especially when the scope of our thrills as a newborn involve how to become bigger. They eat, sleep and poop, God willing. Most of us are don’t need to examine how this eating and nourishment happens. It just does. Especially by the time we are rested and recovered enough from gestating and birthing our babies to actually reflect on it.

I came home from the hospital after giving birth to Zuzu with a feeding plan and a couple of extremely sore neh-nehs. It wasn’t easy then either. But now 3 years later, what I remember is what I see- a happy, healthy, bounding about faun of a girl. Not how we got here. Time often erases the intricacies and intimacies of our life before we are able to examine them too closely. For the most part that is good, it’s self-preservation. It enables us to go merrily on and think about re-creating again.  

The Quail came out 8 lb 12 oz on a frosty Sunday morning in February. A little bit early, but not a little bit light.  She came out with a wail much like her sister and we began the long dance between mother and child of learning to nurse. I chose to have her at the same hospital that I had quite by accident ended up birthing Zuzu at. The Lactation Consultants there are amazing. I spent more time with them after Zuzu’s arrival then with her pediatrician. I was aware how utterly consuming and complicated nursing could be due to multiple warnings from mommas that had gone before me. I was fortunate enough to push past society’s conventions and nurse through my pregnancy with the Quail. Lovey and I questioned the notion of doing this and whether or not we should be actively weaning Zuzu many, many times. This wasn’t a decision we took lightly. Of course you can’t know what’s to come while you are planning for it. Zuzu’s continued perseverence and need for connection and comfort is strong. She loved to nurse and rub my swollen belly during those months. And after the Quail came home she immediately sank into a routine of nursing and reaching for her sister’s small hand to hold while she let down the milk for her. It is truly the greatest gift I could hope to witness.

In the hospital, after the Quail’s arrival, before her official diagnosis, the LC came to work with us frequently. Since I had difficulty with Zuzu, I just assumed it was a similar difficulty of getting her to latch and once we worked through positioning we would be set to go. I was armed and ready to adjust her latch as needed to prevent the trauma to the neh-neh’s this time. I was queued to the art of baby language analysis and ready to respond to her neh cries. I had the LC’s number on speed dial and wasn’t afraid to use it. I was prepped for the pain of engorgement  and had my little weekend warrior ready to nurse it to a comfortable fullness until the Quail could handle the supply on her own. I had my boppy, my Nursing Mother’s Companion, and my trusty Pump in Style Advanced. I was ready for Lovey to do the middle of the night feedings with a bottle and not afraid of nipple confusion. I had a couple sets of supplemental nursing systems and syringes ready in the event of a rough start. But you know what they say- every baby is different. Yes. The truest, purest, most inargueable statement. With all that preparation- both mental and practical, the Quail still had areas I hadn’t known to account for. Long before we received the Down syndrome diagnosis we received a hypotonia diagnosis.

Let me tell you what should have happened in a perfect world. In a perfect world, the pediatricians or lactation consultants that examined her- and there were a couple of each, should have explained hypotonia in lay terms and brought in their OT or SLP that is trained in oral-motor weakness to examine her and start either a referral to someone to work with us ongoing. They should have been weighing her after nursings to notice that she wasn’t pulling any colostrum out. But it’s normal for any baby to lose some weight after they are born and before the milk came in.

In hindsite I can say that should have been the plan. I guess, really, I wish that plan for mommas that come after me. In some respects there wasn’t an obvious problem. Except this. They did say hypotonia. The pediatrician’s that examined her couldn’t say definitely that she had Down syndrome until a karyotype could be completed. But the 3 things that led them to think she had Down syndrome were: 1. her hypotonia, 2. the difficulty she was exhibiting nursing 3. and the micro-expressions we would witness that bore some resemblance to classic portraits of a baby that has Down syndrome. The LC did print out an article about nursing a baby with Ds and the difficulties of it, an email address for a woman who she used to know that had nursed all of her children, including a baby that had Down syndrome a couple of decades ago and a vague suggestions to be sure to ask for an OT or SLP referral from my pediatrician. I went home thinking there might be problems ahead of us but not really understanding that indeed that was a definitive. Late in the afternoon, the day after we arrived, the LC had given a brief warning that if the baby wasn’t able to eat well then we would be extending our stay in the hospital but that it would be the pediatrician’s call when he examined her the next morning. We were given a stock of newborn bottle caps and extra syringes to work with. Fortunately I had a milk supply already established and my colostrum had already began the transformation. On that first day I was able to pump an ounce at a time and began the routine of pumping out what I could every three hours and trying to nurse the Quail according to a feeding plan that gave me a distinct sense of deja’ vu and a false sense of confidence.

It went like this:

1. Pump for 10-15 minutes to get the let down reflex activated and start to establish a good milk supply 

2. Set up a ‘just in case” bottle

3. Undress the Quail down to a diaper and start to wake her.

4. Begin brief oral-motor stimulation exercises such as rubbing the inside and outside of her cheeks,  gums and roof of her mouth for a minute or 2 to stimulate her suck-swallow-breathe reflex.

5. Bring her to the breast and attempt to nurse her for 5-10 minutes trying a variety of positions: cross-cradle, football, dancer’s hold

6. If at that point she has not successfully established a latch and began to draw out milk then move on to another method of feeding her so that she won’t be too worn down to eat. 

7. The choices are SNS or syringe with your finger inside her mouth to elicit the sucking reflex.

8. Repeat process every 2-3 hours.

9. If she doesn’t root, cry for milk prior to 3-4 hours, wake her and initiate the process on your own.

10. Document the number of wet and poopy diapers daily to ensure she is getting enough nutrition. She should have 6-8 wet diapers and 1-3 poopies each day. If you are not able to get that many call your doctor.

There’s alot of guesswork in those first few days of determining wet-newborn- nappies. We did our best estimations and 48 hours after the Quail’s arrival the pediatrician was comfortable with our level of understanding and dedication to feeding the Quail and agreed to send us home. Other then a few new vocabulary words this was not unlike our experience with Zuzu’s entrance into the world.

It took a few weeks due to a computer upgrade and hospital documentation system changeover for us to get the results of the kareotype. Three weeks later after 4 follow up phone calls to the geneticist and our pediatrician’s office, Lovey and I were having dinner with his parents and we received an early evening phone call from our Pediatrician, Dr. Dean informing us that he finally received the Quail’s FISH analysis back and the good news was it was negative for Trisomy 13 and 18 but did show 50 out of 50 cells analyzed a f inding of Classic Trisomy 21. He started down a litany of expected medical concerns that may accompany the syndrome, hyperthyroidism, hearing and vision loss, the need for routine follow up with our newly established pediatric cardiologist for an early diagnosed small to moderate ventricular septal defect and possible pulmonary hypertension; potential delayed developmental milestones and the possiblity of mild to moderate cognitive functioning that can’t really be predicted this early on. Lovey and I sat on the phone quietly listening together and then I asked for a referral to Babynet to get started finding out what services would be available to guide us through the next 3 years. After we hung up, Lovey and I hugged and I did cry a few tears of anxiety. I tend to run towards the anxious side in general.  Lovey went back out to the kitchen to his parents and I called mine who had recently returned to their home in the middle of the country.  I distinctly remember a shift happening in my thought process earlier that afternoon as I waited for that phone call. I had been pressing the doctors to get a definitive diagnosis back to us and suddenly, probably about the same time the final fax was received in Dr. Dean’s office I saw the blessing of getting to know the Quail without a diagnosis attached to her. I had been able to spend a few hours actually grateful for not seeing her through the diagnostic light.

Babynet, our state’s Early Intervention service or Birth to Three provider; called back a few days later to schedule an intake, and a couple of weeks later Jodie came to meet us and the Quail. We told her of our main concern of how the first few weeks of feeding the Quail had gone and how we had not yet successfully established breastfeeding and when she drank from a bottle a fair bit dripped out the right side of her mouth. We related the struggle to get enough food in her the first couple of weeks. We had been spending approximately 45 minutes every 2-3 hours following the letter to the plan.  Our saving grace was that the Quail was an excellent sleeper. So after she ate, whether it was due to her exhaustion from the nursing session, regular newborn sleepiness or the breastmilk jaundice she had for the first month, she always went back to sleep easily.  When Zuzu was home her first week we had done a similar plan but she was mostly nursing and we were using the SNS for a couple of feedings with Lovey during the night so I could rest. During one call to the LC after the first week they pointed out that the SNS was really only for the first 5-7  day to get started. After that point the amount of milk needed with each feeding couldn’t be sustained with the SNS. It was about this point with the Quail as well that feedings were becoming too drawn out for us to continue our current plan. At the end of the first week she was staying latched on my breast and making a nursing motion long enough to look like a full feeding and acting contented mostly afterwards- well actually wiped out would be more accurate. After one day of just having her nurse she proceded to not poop for the next 36 hours. At that point I realized that although she was latching she wasn’t strong enough (the hypotonia at play) to draw the milk out. I panicked and got out my box of bottles from Zuzu’s early days. We started with a Dr. Browns which had previously been the bottle de’jour to coordinate with nursing. It was too difficult for her to get milk out of. After fumbling around briefly with a series of other bottles that were either too difficult or the milk leaked too eaily out of her mouth we settled on a Soothie. She still leaked milk but it was better then the alternatives. She gradually sped up her drinking in the next week and we were able to get 3-4 oz in about 20-40 minutes. I was still attempting to nurse but the frequency was dropping off as my success plummeted.

Jodie referred us to an agency that had a couple of SLPs who focused on feeding issues in newborns and they set us up to come in fairly quicky, still by this point we were 2 months into it. We met with the SLP and explained how long it was taking the Quail to drink, the milk leaking out while she did and the lack of success in nursing. She also by that time had begun throwing up frequently and in what looked like large amounts with almost every feeding. Both immediately after and throughout the following hours. Fortunately she wasn’t distressed or obviously pained by this. Unlike her sister who started reflux meds at 3 weeks due to her pained behavior, arching away from the bottle and tears (hers and mine)  with each feeding.

The SLP’s  first concern was if drinking from a bottle; which is easier then nursing, was causing the Quail any distress. It is common in babies that have heart conditions to have their oxygen saturation level  drop while drinking as well as their respiration rate increase. We started each session with the Quail drinking her bottle while hooked up to an oxygen saturation machine. Fortunately for the Quail she didn’t have trouble with this. The heart condition made the SLP pretty nervous and she consulted with the cardiologist who reassured her that there was no trouble with the Quail learning to nurse.  The other main concern with a lot of babies with heart conditions is their growth rate. And with the Quail throwing up so frequently as well this could have been a major factor. Fortunately her growth has always stayed consistently between the 25%- 50% average on the standard growth charts. For a baby that has Down syndrome and a heart condition and refluxing behavior, that is really phenomonal. We spent the next 3 months with every other week appointments with the SLP essentially doing the exact same thing. I would ask each week about learning to nurse and she felt we needed to get to the point where the Quail would clearly not need open heart surgery to repair her VSD before moving on to practicing that. I continued to ask and she continued to say the same thing. I finally asked outright for her to give me a list of exercises that would teach the Quail to nurse. She said that there weren’t any.

At that point we decided to take a break from the sessions for a couple of weeks and I started asking around to other mommies if they had suggestions for ways to help us learn how to nurse. More to come on that and how we spent the last 3 months  to come later this week.

Right now I have to go put up the night’s pumped milk, lay the baby down to bed and nurse the toddler.  And I feel so very blessed to be able to do just that.