The Age of Equipment

When I last posted, Keira had just had her G-tube placed. She was a very good patient. Was particularly happy with a little morphine that first day.

Her first piercing.

Doctor said the surgery went well. However, during the surgery he noted that her sphincter at the top of her stomach is very "low tone," or loose, which probably explains why Keira doesn't eat more than a couple of ounces at a time. The sphincter doesn't close up tight, like most of ours do, when she's getting full, so she starts to throw up. Yuck.

The G-tube hasn't been the easy answer we had hoped for. The goal was to continue feeding Keira by mouth during the day, then feed her about 15 oz by slow drip through her tube overnight. Unfortunately, it doesn't seem to matter how slow the drip is, K starts to throw up after about 7 ounces most nights.

So, we've been continuing to problem solve this with the doctor. We tried a different formula. We did a barium study, just in case (it looked fine). Currently we're giving her a low dose of antibiotic at mealtimes (which has been shown to help motility). There may be another surgery in order.

All in all, K is pretty happy. In total, her daily food intake is about right where it was when we started the whole tube business a few months back. However, somehow, she was up to 17lbs when we weighed her today! She looks pretty well. Not too scrawny. At just about 19 months, she is the weight of the average 6-9 month old and the height of the average 10 month old. But then again, she's not your average girl.

So K isn't particularly heavy, but it is almost easier for me to carry Ronin, who weighs three times as much. That's because he perches on my hip and holds his body upright. K is getting longer and longer. It's really hard to carry her with one arm now and I often find myself knocking her legs or her head into things unintentionally. Bad mom! Which leads me to...

...the age of equipment. I've decided that this must be a developmental stage for children with disabilities. She isn't meeting the typical milestones, but she has reached a milestone of growth that seems to have invited an onslaught of new equipment!

1. The carseat. Keira was too long for the infant carseat and too floppy headed and underweight for the toddler carseat. I was relieved to actually find a carseat for her at Babies R Us that works great for her. It may have been the most expensive one in the store, but it is far and away cheaper than any carseat that is deemed "special needs" or "adaptive."

2. The wheelchair stroller. Similar issues with her head control and length have led to difficulty using a typical stroller. We got a great deal on this one and it works pretty well. K seems to be tickled to be "sitting up" and has even gone running with me a couple of times.

3. The bean bag. Far lighter than the stroller, I've bought three of these to provide an easy place to situate Keira when she can't be held. One for home. One for the dance studio. One for the church nursery.

4. The swing. Keira needs a lot of input and stimulation to do her best (ironic, really, since she can also get overwhelmed and shut down with too much). So, we've found that a lot of bouncing, vibrating, etc, helps with therapy. So, she's been using therapy swing more often and we've installed one, a hammock, downstairs in the living room.

This is Keira in her own mini ball pit ON TOP of a platform swing in therapy. Ours at home will be a hammock.

5.  The trampoline. Ronin got one for his 6th birthday. However, the OT is so excited to use it with Keira.

6. Prone stander. This is up next. This device will help Keira with head and neck control, and also put weight on her feet to help with overall, strength, growth, and digestion.

Not K. 

7. Theratogs. Also coming soon. These look like a large bandage and are kind of like baby Spanx. She'll wear them under her clothes and hopefully, with a more consistent feeling of upper-body support, she will venture to use her head and neck more.

Not Keira (she's cuter). 

8. Upsee. This, hopefully in the next year or so. This product is just being released this week. Isn't it awesome? Created by a mom in Europe somewhere (which, apparently, is where most of the coolest new innovative special needs equipment comes from). I can't wait!

http://www.fireflyfriends.com/upsee



It's all slightly overwhelming, yes. Especially given that this isn't all. We still have the hand splints, the hip brace, the food pump, and the chest vest. But mostly, it's encouraging to have stuff to try. It's hope.

Keira in the hip brace

 As always, even with all the "stuff," we want to try to be as "normal" as possible. So, here we are on a recent hike:

Enjoying Liam's fiddle lesson:

 Letting Ronin dress her up and pick out her "jewelry":

 Sliding in the park:

I'm hanging in there. The slumps that I have in which I feel too tired and overwhelmed to keep up with everything happen more often than I would like, but overall I think I'm managing okay. I have lots of help and lots of encouragement. One of my favorite bits of encouragement recently was this article: http://parenting.blogs.nytimes.com/2014/03/13/dragon-mother-emily-rapp-a-new-baby-doesnt-and-shouldnt-replace-whats-lost/?action=click&contentCollection Thanks, Andrea. I appreciate the sentiment that I'm not particularly brave or triumphant, but that I love no matter what, and I do what I have to do. A "dragon parent." The thing is, if I'm extraordinarily brave, or whatever, then I'm not normal. And if I'm so special, then that means that if "this" happened to you, I couldn't expect you to muddle through as well as I have. But you could, that's the thing. Few people think they are cut out for this, but when it happens, they rise to the occasion. Your kid is your kid and you love them the best you know how.

As I think about it, I really want two things to happen as a result of sharing my journey with Keira. First, I want you, whoever you are, to feel a little more comfortable with the idea of "special needs." I hope that you'll know a little more about what daily life can look like and how to love someone who doesn't have the same possibilities as you. That way, maybe when you see my daughter, you'll smile and say, "hi." I hope you won't be nervous and avoid us or be afraid of her because she makes snorting noises or crosses her eyes. Second, I want you to feel encouraged. Everybody has their own stuff, their own difficulties that they face and it is all so relative. What one person thinks is a piece of cake may be devastating to another. I know that having a child with severe disabilities is one of those things people fear and believe to be terrible and maybe impossible (because I have/do!). I hope that you look at our lives and see that, even though it's tough, we're getting along okay. And if this can be okay, maybe you can be okay, too.

Just a little surgery

I've not done so well at keeping you updated lately. Keira's progress, to me, has been somewhat tedious and thus seemed wearisome to write about. Tube in, tube out, tube in, cold, ER, tube out, tube in... 

Here are some highlights from the past few weeks:

Keira often cried and was uncomfortable when we did the gravity feeds. She couldn't seem to handle more than about 18 ounces in a day without throwing up. We transitioned to a feeding pump overnight. That is, we fed her what she would take from the bottle during the day and at night, gave her the rest through a slow drip. This worked somewhat better, but K would still throw up if she had more than 10 oz per night. Also, she dropped off her bottle feeding to nearly nothing. My guess is that the NG tube was really uncomfortable and for a kid who already struggles to breath a little because she blocks her airway with her tongue, the NG made the whole suck-swallow-breath  thing nearly impossible. So that's how we've come to the decision to go ahead with the G-tube. She quickly displays more activity and energy when she has more food but this doesn't translate in to her taking more food on her own. And the NG seems to further impair her eating on her own. 

K's got a hip brace. She's to wear it as much as possible indefinitely. This is in the hopes of preventing surgery and maximizing the opportunity for healthy bone growth and perhaps walking. The brace is a bit cumbersome, but not too bad as we can still cuddle pretty well while she's wearing it. She doesn't seem to mind it too much, but is very clear when she wants it OFF! 

K seems to be making more and more intentional sounds, which is pretty fun. It was drawn to my attention recently that Keira is progressing much better in terms of social interaction than in any other domain including cognitive, physical, etc. 

I think that that realization helped me to be a little more observant and give K the benefit if the doubt that some if the sounds and movements she makes are intentional efforts at communication. That very night, we went out to eat with my in-laws. Dave fed her caramel sauce and Janie brought her lime sherbet. Keira made it abundantly clear that she enjoyed both and would raise her arm and/or coo when she wanted more. When she was done, she'd purse her lips or turn her head away. It was a hoot...sort of like your typical baby "firsts." 

We continue to expand our network of families who have kids with disabilities. Though I'm uncomfortable developing relationships based on that lone commonality, it puts me at ease to remember that when Keira is 5, 15, 25 years old, these families will still be in the same boat. We're never in this alone. 

Earlier this week, we purchased Keira's first wheelchair, used, from a family in Boise. It was interesting walking into their home and feeling part of a club. We spoke the same language, all medical terms, doctors names, Medicaid lingo. A couple of weeks back I had a long phone conversation with Janelle, founder and president of Stop CMV. As a result, as a psychologist and CMV parent, I may well be speaking at a CMV policy conference in the fall. 

That brings us to today. K is in surgery, getting her G-tube placed, as I type. She should be out soon and, if all goes well, we'll be home tomorrow. 

Mommy Knows Best

In the past few weeks, I've not been acutely fatigued or depressed or discouraged. I have observed my own tendency, though, to skip my makeup or my socks or even my shower because it was just a little too much effort. So I guess I don't feel exactly peachy, but I'm hanging in there. 

A few things have been brought to my attention lately that have taken some wind from my sails. 

Pregnant friends. I've had several friends become pregnant recently and subsequently consulted me about CMV. (How do I protect myself? Do I need to get tested? What should I ask my doctor?) I'm happy to be a source of information and support. However, I've found it upsetting how little OBs (it wasn't just mine) know about CMV. This frustrated me more than I anticipated, seeing that I was already well aware that physicians are under informed about this. I guess the kicker, though, was that one doctor actually suggested that the friend not see me anymore until after the baby is born since I'm obviously a carrier of CMV. This came too close to home. Now it's personal. It's discriminatory. Most of all, it's incorrect! This person is more likely to contract CMV from her own children than from me. Ugh! 

Tons of appointments. Between this and that, K has had 4-6 appointments per week recently. On top of that, since she's had a cold and whatnot, she's been refusing to be put down for the most part. I'm able to do what I need to do for her, but it's a little knife in my gut every time I tell Ro that I can't play catch right now or Liam that he can't have a friend over today. This is not to mention that work is often slipping in terms of the ranks of priority. It seems that just when I'm feeling energized and caught up, K opens another chapter of more intensive needs. Jeff and I have considered the idea of me stopping work altogether, but I don't know that I'm ready to give that up yet. 

Mommy knows best. We've all heard that phrase before. In recent weeks, the reality of this statement has rung so true. 

However, rather than being empowering, it canotes a feeling of isolation, as if the safety net beneath me has some holes in it. I guess I would like to think that if K is in trouble, I could hand her over to a doctor and he/she would fix it. And though I surely don't have the medical training of a doctor or nurse. I do, however, know how to read my daughter's signals (they all think she's sleeping), and am aware of all of her conditions, in order of what is most concerning, along with her treatments and complicating factors. Her bedroom has it's fair share of medical supplies and equipment and I'm not squeamish about using it. We've spent enough time in doctors offices and hospitals that I think I'm more or less aware of the limits of what can be done. Much of what they do, I can do at home, and I'm much more equipped than your average nurse that walks in, to know how K is doing at first glance. When you're a healthy person, it seems that medicine has an infinite number of options, should you get sick. It's a little disparaging, I suppose, to enter into the place where that just isn't true. I had one experience recently, that really drive home the Ida that Mommy knows best and had me feeling a little let down. Keira had her NG tube in and she got a cold. As it goes, she struggled to breath, so we had an ER visit. Two days later we visited her pediatrician. That afternoon, as Keira was snorting and coughing, I wondered if we should just take the tube out until she was better to help her breath. So I called the GI, who replied, "Absolutely! That's a great idea!" And so, I removed the tube and she had much less obstruction. "Why," I wondered,  "did that have to be my idea? We saw two doctors in the past three days! Why didn't they suggest it?" Put simply, I know best. 

Compulsive coping. I stand here alone with Keira in the recovery room. It's nobody's fault but my own that I'm here by myself. After waiting two days for the GI doc to call, I spoke with him on Wednesday and when he offered a Friday surgery, I snatched up the opportunity. Jeff had a couple of appointments he could not reschedule. I really should have just scheduled it for next week. The G tube is necessary, but not an emergency. I'm seeing that when things are going on that make me feel out of control, I lunge for things I feel like I can do. Generally, this happens in things associated with K...if something can be done, let's do it NOW. The subtext is so I can feel like a good mom. This would explain why last night, I agreed to do a promotional event for the business and was scurrying to pull together items for the Moppett Toggs consignment sale. So not important in the grand scheme of things, but I accomplished something! Sigh. Keeping busy isn't always a bad way to cope, but it is when I'm busy at the expense of more important things. 

K's out of surgery. Sleeping peacefully. We're waiting to go up to her room. Probably be here until Sunday. 

Love to all of you!

Hippy

We did, in fact make it home last night by about 6 PM. Unfortunately, prior to discharge, we received a call from the G.I. informing us that Keira's hip x-rays did not look good. At first I shrugged it off, thinking this is one of the many things that comes with the territory. Besides, she hasn't been in pain and she's not trying to walk on it, so no emergencies, at least.

After Keira yanked her tube out, they reinforced the tubing with extra tape. Surprisingly, they told us that if she pulls it out again we should come back to the hospital. This was slightly annoying to me, as the NICU had actually trained us to reinsert the tube. Oh well. Guess we'll cross that bridge when we come to it.

The plan is to follow up with the G.I. in 2 weeks. We are hoping with the increased intake in calories, Keira will be more energetic, seem to feel better, and gain a little weight. It could be that the few weeks with extra food could jumpstart her energy and she will feed better on her own. Another possibility is that she will need to continue to have her food supplemented via a tube. In that case, Keira would undergo surgery to have a permanent G tube placed directly into her belly.

I went to bed stressed out last night. I made the mistake of googling hip dysplasia and what I found was discouraging: a couple of months in a highly restrictive brace or a couple of months in a cast following surgery. This poor baby! Are all of these intrusive interventions really helpful in the long run? Or should we just leave her alone?

Jeff rigged up a cool little gadget for holding the gavage. He anticipated that at his assigned midnight feeding he may well fall asleep and inevitably spill the chocolate mess all over his daughter. Worked like a charm!

This morning has been hard. Keira is fussy and I'm concerned/paranoid now that she's in pain. Nurse Hannah stopped by and graciously helped me replace K's tape on her face so that it is slightly less horrible. She even stayed long enough so that I could take a shower! I feel somewhat like I have a newborn again this morning. Or a very sick child. However, this time I have not prepared myself by sweeping away all of the other responsibilities in my life. I am really stressed that I am behind at work and have people waiting on me for reports. K has a lot of upcoming appointments and the boys need help with various things and Jeff is feeling really overworked as well. I suppose it's time for me to rally the troops again, at least for a while. I needed to post again today, as I found myself spending lots of time returning everybody's lovely messages. What can you help with? Keep making yourselves available. You are all so wonderful at that. In the next week or two, I may need people to help me with transporting the boys, helping with their homework, errands, dinner, laundry, etc. I know I need to keep from feeling too bogged down.

Right now, Keira and I are enjoying a peaceful moment sitting in the sunshine in the living room while I dictate this. We appreciate you! 

Gone Tubing

I woke up this morning, eager for this to happen. Keira has been increasingly sleepy and lethargic so, needless to say, I've been worried about her. 

We set out with a chorus of encouragement via Facebook and text. Little K has an impressive cheering squad waiting in the wings. We arrived at the hospital 30 minutes late due to unexpected weather, only to find that Keira was not on the admissions list. A ball was dropped paperwork-wise, but they got to scurrying and we were in a room by 9:30. Then the tube was in by 10. 

She screamed and was so mad when they were putting it in, which Jeff and I figure is better than her not caring. We got her calmed down and she seems fine, albeit a little irritated by the tube in her throat. She's experimented a bit with not swallowing...just letting the drool come down, but it's getting better as the day wears on. 

At 10:30 they xrayed her belly to make sure the tube was placed correctly. At 11 we visited with the doc. At noon we fed her a bottle, of which she only took an ounce. We gave her the rest via "gravity feed" or gavage (which, in French, literally means "to stuff or cram"). here!

We essentially hook a syringe full of food up to the end of her NG tube and hold it above her head until it's drained. K seemed happy and milk drunk in no time. 

At 12:30 Keira took a nap. At 1:00 we wondered how a day sitting around in a hospital room can be so exhausting. At 1:30 we thought it seemed strange that we needed a hospital admission for this procedure at all. At 2, K had more X-rays. The doc had been slightly concerned about the look of her hips in the first xray...just a precaution. At 2:15 we borrowed a vibrating bouncy seat from the unit and K was happy to just hang out. 

At 2:30, I looked up at K and saw that her nose was empty! Such coordination! She pulled it out without a peep! Back in it went. It's now 3 o'clock. K is asleep on her daddy. The plan is to feed her again at 4 and if all goes well, we're outta 
here!

Thanks, everyone, for your encouragement. It's been a tough week for me, but I am optimistic that Keira will be more lively again soon. 

She smells like Skittles!

...Yea. It's time. We went and saw the GI specialist this week. Her weight is still hovering right at 16 lbs. Even though, since getting her flavored formula, Keira's eaten a few bigger bottles than usual, she's still averaging her usual 15 ounces per day. Her height to weight ratio still isn't too bad. So the tube isn't an emergency, but Jeff and I are now wondering if Keira might have a little more energy with more calories in her. For the past couple of weeks, she's seemed less energetic, more fussy, and less willing to show off her more advanced skills.

Bottle with a vibrating toy in it: one of the many ways we've tried to get Keira to eat more. 

The doctor suggests an NG for a 3 week trial period. We'll experiment with giving K more food through the tube. If she tolerates it well and thrives, we'll schedule a more permanent G tube to be inserted through her abdomen.

Initially, after Jeff and I decided to go ahead with this, I felt relief. I've felt relief each time we've come across a big decision with her...ER visits, hospitalization, etc. I used to wonder if that made me pathological, that I almost even looked forward to these things. But now I realize it's not that I want her to be really sick or impaired, it's that these interventions seem inevitable and the ambiguous times of not knowing whether they are necessary are stressful.

So, like I said, initially I was relieved. Hopefully Keira will be more lively and alert and we won't have to worry anymore about whether she's getting enough. But in the few days since we made that decision, I've been WIPED. OUT. I've had some weird migraine  symptoms, slept a ton, and have recognized some old "stress patterns" in myself like wanting to eat a lot of junk food and spending hours browsing for clothes online.

I sort of feel like, in parenting Keira, I've been walking this tightrope of hope and acceptance. I've been getting pretty good at it. But the tube-feeding issue has come to a head and I've been knocked down. I'm not hurt cause I've been caught in this great net. I plan to get up again, but right now I'm resting safely in this place, wondering how I'm going to get back up there.

The tube, I suppose, is a big, fat, obvious, tangible piece of evidence that really, Keira isn't thriving. She's not progressing. After a wonderful holiday full of family time and plenty of laughter, we had a rhythm going, feeling some real normalcy. We've been thrilled that she's been healthy, even when flu and strep throat have been through our home. This kind of took the wind out of me. Because it isn't just the tube feeding, it's the reminder that Keira's brain is so underdeveloped. Her muscles are so underdeveloped. And though she may continue to grow and develop, little by little, she may also continue to deteriorate and decline, little by little. Her lack of core body strength puts her at risk for so many other problems and complications that, at any given time, could steamroll downhill. It's still a possibility that she won't live a long life. It's a possibility that we've already seen her at her happiest.

On a lighter note, the nursery personnel at church took the liberty of giving Keira her first ponytails last week! It hadn't occurred to me that her hair was even long enough. Actually, her hair has grown a ton in the past few weeks. She has these amazing ringlets when her hair is wet and when it's dry, it's a cute-crazy mess.

Like my pigtails?

I know he's back there!

Love the "Smothers Brothers." 

Watching TV! This is progress!

I'll bite your nose, bro!

Strawberry is one of K's favorite formula flavors, it seems. Cynthia pointed out the other day that it makes Keira's breath smell like Skittles. I thought that was so cute. Plus, I needed something happy to title this post!!

Jeff, Keira, and I will be at St. Luke's downtown all day on Wednesday for her NG tube. We shouldn't have to stay overnight. Mostly, we just need to be there through a few feedings to make sure everything is working properly. I'll keep you posted!

Fighting "The Tube"

Loooves Uncle Matt

Keira continues to do really well. She was a trooper (side note: Ronin said, "What kind of trooper? A storm trooper?") through all of the Christmas hullaballoo. She participated in even the major Christmas Eve Hall Family Gathering by keeping her eyes and hands open. Of course, she didn't really follow all the gift-giving, but I think her favorites were: 1) the caramel coffee syrup that Aunt Tami gave her to help spruce up her sludge, 2) the vibrating pillow from Uncle Matt, and 3) the stuffed giraffe that Liam helped Grandma Sharyn make. I particularly liked her new striped baby legs and her funny 2-pronged, molar-reaching pacifier, not that I picked those out myself or anything.

Grandpa Ron and Uncle Matt accompanied Keira and me to the GI doctor a couple of days after Christmas. The doctor felt like he was eating his words a bit (last time he said that Keira seemed to be growing just fine at her own pace and taking in as much food as she needed) in that Keira had grown 2 inches and lost an ounce or two. So, of course, the growth chart shows a dip in progress and the next step, if she doesn't pick it up soon, is a G-tube. The doctor admitted that Keira is the only patient he has ever had that has actually eaten the sludge by mouth. "So," he said, "let's just do a trial of some more flavorful stuff and see if she does any better. " Lo and behold, with an assortment including chocolate, strawberry, vanilla, and banana cream, K has been eating an average of 2 more ounces a day, which is significant if your grand total for the day is usually no more than 15!

Keira seems to take two steps forward and one step back. During our week away in McCall, it was interesting how one day, she would be extremely vocal, holding up her head and upper body in ways we rarely see, and the next day she'd be super quiet and subdued. She actually spent several hours in her bouncy seat one day, listening to the football game perhaps. She did fine, though, particularly in light of last year, when we struggled to get her to regulate again for several days after we got home.

We get this view a lot...trying to encourage her to lift her upper body. 

On one of her really good days during our vacation, she really got the hang of sucking her own thumb. She even figured out that the thumb belongs to her, after drawing her own blood and an ear-piercing scream! On that day, I also noticed a lot of twitching in Keira's muscles. Tremor-like feelings in her legs and arms and sides. I've felt those before, but never so many. I, of course, wonder about seizures, as she is high-risk for those, but these particular twinges seemed to have more to do with her trying, ever so much, to get those muscles to work. It's a little sad, really, but I choose to think that on those good days, there is some volition there and one of these times, she'll figure it out.

Keira has not been sick since we got the vest. We've sure gotten a kick out of this thing. Jeff articulated right away that the process sounds like goats parachuting from a helicopter. K has to do this 20 minutes twice a day and she'd loved it every time. Not only has it served to keep her lungs clear, so far, it seems to stimulate her muscles and brain in a way we've been unable to do otherwise. Within the first 2 days, we noticed Keira sleeping better, eating better, being more content overall, and making more sounds. The OT noticed increased muscle tone in her whole body after one week! I had even thought it might help dislodge all of the gunk clogging her ear tubes, but that was unsuccessful. That stuff isn't going anywhere! All in all, it seems to be a worthwhile gadget. Note: Do not be alarmed if you are at our house and you hear me ask Jeff to "go shake the baby."

Besides the vest, K's also got her RSV-preventing Synergist injections and a couple of other PRN medications. Here's hoping we can stay hospital-free this winter!

Progress continues to be very, very slow, but it's not too hard, I suppose, to take things in stride. She's happy, which makes everything so much easier, I think, than if she was an unhappy kid. Getting a squeal out of her takes no more than a little bounce or a tickle or tousling her hair, which makes her shrug her shoulders and squint her eyes. I spend a lot of hours holding her and it's not that uncommon for her to look up at me and just start laughing for no reason. Love it.

Keira loves her brothers to pieces, too. Both boys can distract her and make her laugh now. Liam and Ronin both have come to my rescue recently, watching over her for 10 or 15 minutes while I finished a project. The best part is that it makes them feel so helpful and successful, too.

Jeff and I both can't help but think about what Keira is going to need in the future. For me, this manifests in my propensity to introduce myself to parents in public places who are pushing their kids in wheelchairs. For Jeff, it's noticing a "really cool" wheelchair ramp or hoist attached to a car. "Write down 'Braunability,'" he told me recently, "We might need one of those."

Not feeling so well after FIVE shots, but definitely cute in her newest outfit ala the Nashville airport.