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.