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.