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Tuesday, July 22, 2014

Why my healthy baby sometimes makes me sad

Piper, 5 months


Being a parent comes with a lot of unexpected twists and turns. Truth be told, I don't think there is any possible way to anticipate what it is going to be like to be a parent, no matter how many kids you already have or how much experience you have working with kids. There is no way to know how you will handle situations that arise or how you will feel when certain things happen because you have no idea what your child's life will be like. No matter how much you think you know about raising children, you have no idea what it's like to raise any one particular child until you're doing it. My experiences with each of my children have been similar in many ways, but also vastly different because of their different personalities, temperaments, preferences, and health. I didn't know what it was like to be able to give a baby table food until kid #2 came along, because kid #1 didn't get her first tooth until she was 14 months old. I assumed all kids would be terribly messy eaters because #1 and #2 were pretty messy, but then #3 came along and was such a neat, tidy eater that we rarely even used bibs with her. Kid #1 was an amazing sleeper, but kid #2 kept me feeling like a zombie for months and STILL gets up between 5 and 6 every morning. You get my drift. They are all so different.

Within the last month or two, I have finally been able to exhale a bit. By that, I mean that some of my early concerns about Piper have subsided. I haven't talked much about it, but there were some things she was doing early on that scared me. She may not have been hospitalized by the age of 2 months or had a feeding tube placed, but things were not peaches & cream with her for the first several weeks. Even so, it was not like Raya's first few weeks. Although there were similarities in that I had concerns about both girls early on, I could see that they were vastly different and I knew that my experiences with Raya were casting an ominous shadow on any and every little concern that I had about Piper and making them seem worse than they probably were. I had anticipated that. I knew before I was even pregnant with Piper that pregnancy and having another baby was going to be emotionally and mentally taxing in a way that none of my others had been, simply because of the way that having a medically complex child and many friends who have much more complex children than Raya has changed me. Simply put, I know too much about what can happen to ever be as calm and oblivious as I was during all of my other pregnancies.

One thing that I did not anticipate though, was that there would be times when I would look at my healthy, typically-developing baby, feel a wave of overwhelming sadness, and burst into tears. It seems crazy, I know. Who could be sad with this sweet little creature around??

I can't even remember now exactly what was going on when that happened last week, but it was not the first time and probably won't be the last. It was last Monday, when she turned 5 months old. I had been holding Piper and snuggling with her, and was suddenly hit with a wave of emotion that felt like a ton of bricks. I looked at her sweet, calm, happy face and had sort of a flashback of Raya at 5 months old that broke my heart all over again.

When Raya was 5 months old, we were on our 3rd month of tube feeding. This was taken the day after she turned 5 months old:


She had just had her first experience with anesthesia a few days before, when she had her first MRI:


At 5 months and 2 days old, she had her last bottle and then went NPO ('nil per os', i.e. nothing by mouth). That was also when she went on 20 hour a day continuous feeds. I'm sure that if I had known it would be her last bottle, I would have taken pictures of her drinking it. She was a pro at pulling out her NG tube, and we couldn't put socks over her hands anymore because it was holding her back developmentally.

We were working hard to try and correct her torticollis (crooked neck due to tight muscles on one side, from her position in utero and made worse by her cerebral palsy that we didn't yet know about). That meant being conscious of her positioning in the car seat, while we held her, and during naps so that her neck & spine were being stretched the right way:

A week or so after her 5 month birthday, she was fitted for her plagiocephaly helmet, which (contrary to really irritating websites that call it 'baby flat head syndrome') was also a result of her position in utero and exacerbated by torticollis and CP. I really want to kick whoever started calling it baby flat head syndrome. That is the stupidest name ever, and is misleading because not every baby that needs a helmet needs it because their head is flat from always laying on their back. (*steps off soapbox*)

So last Monday evening as I sat looking at my sweet, healthy, and (so far) typically developing 5 month old baby, I was struck hard by how different her life is (and consequently mine) than Raya's was at 5 months. Or ever. I couldn't stop the tears from flowing as I thought about the contrast between the two girls. I suppose in a way, they were tears of grief over the acknowledgement that Raya's life has never been normal or easy. As hard as we have tried to make things as normal as possible for her, there is no way to erase the pain and suffering she has been through. I don't remember ever being able to look at her when she was 5 months old and just be at peace because she was so happy, content, comfortable, etc. like Piper is. Raya was not any of those things at 5 months. The reason she had her first MRI at 5 months was because she was so tense all of the time and never, ever relaxed. Her GI doctor had started to suspect that her demeanor had more to it than just gastrointestinal discomfort and referred her to a neurologist to start more testing. She vomited a lot, and when there was nothing left to vomit, she dry heaved. I had never ever seen a baby vomit and retch like Raya did, and she did it all the time.

As happy as I am that Piper's life is not even a shadow of what Raya's was like, seeing her doing so well serves as a painful reminder that Raya did not have that experience as a baby. She was happy despite the miserable times:


 but she spent more time feeling awful than any baby should ever have to spend.


We are getting close to Piper starting solid food. It will be another month or two, maybe more, but it's coming. In the last month or two, she has really started to get excited about her bottles. Because of her feeding difficulties, I am still pumping and feeding her breastmilk from a bottle, which has been a very healing act for me. It was devastating to me when I was told that I had to stop giving Raya breastmilk, but I could see that it was making her sick and she wasn't growing, and I knew it had to be done. Finding a sweet little adopted baby to donate the 3 gallons of breastmilk I had in my freezer to was a step in healing that hurt, but seeing Piper grow and thrive on breastmilk has been amazing for me. It has helped me regain some of the confidence in myself as a mother that was taken away when I couldn't keep Raya alive without medical intervention anymore.

I don't know what it will be like for me when Piper starts eating. So far, the way she has reacted to being given licks of popsicles and tastes of lemon water has inspired confidence that it will go well when we do start feeding her. I've never seen a baby her age get so excited about a popsicle, but she loves them. It will be hard for me to not micromanage every calorie that goes into her mouth. I imagine there will be some tender moments when I remember how frustrating and painful it was to try and get Raya to eat solid food. And messy. It was very messy.

 But it will also be sweet and beautiful and amazing, no matter how messy it gets. It has been 9 years since I fed a baby that grew at a healthy rate and didn't have issues with food, so the prospect of Piper being happy about eating is something that I am cautiously optimistic about and trying to look forward to.

It's hard to put into words why a healthy baby makes me sad, but I think this is what it boils down to. Piper has never seen the inside of the children's hospital. She has never slept in a metal crib with safety rails. She has never had vial after vial of blood taken from an IV in her head, has never had an x-ray or upper GI, has never been pinned down over and over again while her mother ran a tube through her nose and into her stomach, has never tasted formula, has never vomited so violently that she passed out after the retching stopped, has never tasted barium, has never had 7 medical appointments in one week, has only ever seen one doctor since she came home from the hospital, and has never been poked over and over and over again by nurses who are trying their best to get a needle into tiny dehydrated veins. The fact that I am acutely aware of all the experiences she has not had means that Raya HAS done all of those things, and I was right there with her during all of it. That is why I can simultaneously be happy and mourn when I watch Piper experience babyhood at its most normal. I am happy that Piper is doing so well and has never experienced any of those things, but I am sad for Raya that babyhood was so hard for her and that the relationship she and I had included so many unpleasantries, like the 62 times that I pinned her down and put her NG tube back in or all the times I held her down while she got labs drawn or IVs placed. Most of the time, the sadness sits on a shelf and I am aware that it's there, but it stays out of my way. There are moments though, where it comes out of nowhere and all I can do is allow myself to let it be what it is.

All that said, I am so very grateful to not be going through what we went through with Raya all over again. It is a beautiful blessing to have Piper in our family, and she has been a source of peace and healing to all of us.

Monday, July 21, 2014

Slowly moving forward

We are coming up on 2 weeks of Raya having her GJ tube, and she is definitely making progress in some areas. First and foremost, she is back to her normal sleep schedule, meaning she is responding appropriately to her sleep meds again. HUGE sigh of relief there. I am happy/comfortable with the med we've been using and really didn't want to make any changes there, so I'm relieved that we don't have to now.

She is making some progress with her GI issues too. She seems to be more comfortable overall. It's kind of hard to explain how I know that, but I'll try. Raya does not express pain or discomfort verbally most of the time. It is rare for her to do that unless she's really feeling awful and I ask her several times and rephrase the question multiple ways. During the day, if she isn't feeling well, she gets more and more alert and hyperactive. Her highs are really high and she has a lot of ups & downs in her activity level and mood. She is unable to hold still for more than a couple of seconds (no exaggeration) and you can tell her mind is going a hundred miles a minute. You can ask her to do 2 or 3 things in sequence and she will get distracted, sometimes before she even does the first thing, and will forget everything else she was asked to do. In the weeks leading up to when we changed her to the GJ, all of this got worse and worse. The times when we were having trouble with her feeding pump not running as fast as it was programmed to run (especially the day it ran for 7 hours with the tube clamped & didn't feed her at all), she was noticeably calmer and happier. It has always been that way for her, which is why I don't believe that a hunger-based tube wean will ever work for her. You can go for an entire day without feeding her at all and she couldn't care less.

If we tried to increase her feed rate above 75, it seemed like it was going okay at first and then we would realize that her body was overwhelmed by the increase and the only way she was able to express that was through her restlessness, increased activity level, and moodiness. I think a good way to describe it is like having ants in her pants. She was constantly moving because if she slowed down, she could feel the discomfort in her gut. When I was pregnant with Piper, there were nights when I could not sleep because my digestive tract felt tickly. If I held still, it tickled. The only way I could stop feeling the tickly feeling was to move. I imagine it is a similar feeling to restless leg syndrome, but in your gut instead of your legs. It was aggravating, to say the least. I imagine that might be why she is the way she is when she's not feeling well.


In the last few days since she started sleeping again, she is just more calm overall. We have slowly been increasing her feed rate, and she is already up to 90ml/hour with no ill effects from it. That has decreased her time on the pump from almost 17 hours a day to just under 14 hours. 3 hours may not seem like all that much but it's HUGE for a very busy 4 year old who likes to do somersaults and dance without a backpack weighing her down. It's hard to describe the change in her demeanor, but it is a positive change and I am confident that switching her back to a GJ tube was a good thing for her. As her respite provider put it today, her highs are not as high and she's just more even-keeled. She's not as up and down as she had been before. It's more like 5-5:30 in the evening when I find myself subconsciously counting down until bedtime instead of 4:00. (ha ha) She is still a very busy girl with a very, very short attention span, but I just feel like she is more comfortable now and is feeling better in general.

Based on Raya's first experience with switching to a GJ, I assumed that it would take her body some time to adjust to being fed so differently. Instead of entering her digestive tract at her stomach, her formula is now entering somewhere in the neighborhood of 30-45cm below her stomach in her jejunum. That takes some adjusting, for sure. I also assumed that she would need some time and some help in recognizing the difference between bad stomach pain and the feelings of intense hunger. Sometimes I have trouble distinguishing between those feelings, so I can only try to imagine how confusing and difficult it would be for a 4 year old child who has never in her life had much normalcy in the way of eating/food/digestion to try and understand. It is going to take us some time to work with her and teach her to figure out what her body is trying to tell her. It will be another mountain for her to climb but I think she is going to do well with it. IF her stomach cooperates. That's the big "if". Gastroparesis/dysmotility really stinks.

I had hoped that she'd be eating more food by now, but like I said, she has a lot to learn still about how eating food helps the pain of intense hunger go away. She is asking for food again, and she has been eating a pretty decent amount of refried beans at a time (as much as 3-4 tablespoons) but she usually just takes a bite or two and then doesn't want anymore. She tells me that it's hard to swallow things, and after a couple of bites, she says her stomach is starting to feel full. It's hard for me to know how to interpret all of what she's telling me, but we're working on it. For now, we're just focusing on the positives, like the fact that when school starts in a couple weeks, she'll be able to go to school without her backpack on. I am SO excited about that and I'm sure that her teacher & the health aide will be too. I think it will be a lot less stressful for them that way.

On another note, so far, I really like the AMT G-Jet. We had the MIC-KEY GJ for about 10 months, and there is a lot that I prefer about the G-Jet so far. That is another post for another day though. :)

So there's the first post-GJ update on how things are going since the switch. Hopefully things will continue to move in the right direction for us.

Friday, July 18, 2014

Who needs sleep anyway??

Apparently not Raya. At least her brain doesn't seem to think so. It hasn't for about 2 1/2 years now. This will be one of those posts that's a little uncomfortable for me to share, but I feel like it's an opportunity to help people understand what it's like to have a child who has significant sleep difficulties. We're not just talking about a kid that fights bedtime. All kids at some point protest having to go to bed, and yes, that is difficult to deal with too. This is not at all what we're dealing with though, so hopefully this post will help explain the difference.

I don't remember exactly when Raya's sleep problems started. She had started sleeping through the night pretty early on. In the beginning, we actually had to wake her up every couple of hours overnight to try (usually not very successfully) to get her to eat. One of the best parts of having the NG tube was that I could just let her sleep and feed her through the tube instead of waking her up and trying to get her to drink a bottle that I knew she wouldn't drink. When her vomiting got worse, she became like clockwork. She always ALWAYS woke up between 10 and 11 at night to vomit. If her stomach happened to be empty (which was rare), she would still wake up and retch (dry heave) for a few minutes. She also always woke up between 5:30 and 7 in the morning to vomit. I started calling her my little vomiting alarm clock because that was what I woke up to every single morning. You think alarm clocks get your heart pumping? Try waking up to the sound of your child vomiting every single morning.

Aside from that, she slept pretty well. Even after the vomiting stopped though, she still continued to wake up between 10 and midnight most nights. As she passed the age of 2, it gradually got more difficult to get her to go to sleep at night. We started trying things like melatonin, lavender, getting her transitioned off of night feeds, and a couple of different sensory routines that her OT developed for us. The melatonin never did anything for her at all. What most people don't understand about melatonin is that if your body is not deficient in its natural production of melatonin, taking more melatonin will not help you sleep. All it does is help to regulate your body's sleep-wake cycle, so if you already have enough melatonin in your body, more will not do anything for you. That was the case for Raya. The lavender and sensory routines helped for a while but gradually stopped doing anything for her.

About 6 weeks before her 3rd birthday, we moved. It was only about 6 miles, but it completely threw her body for a loop. Her motility tanked, her sensory issues went through the roof, and she was just a mess. None of that helped her sleep difficulties. Right after she turned 3, she started preschool, aka a petrie dish in the form of a classroom full of 3-5 year olds, during cold & flu season. Within the first couple weeks, she caught her first of many, many preschool colds. The increasing lack of sleep that she was experiencing made it difficult for her immune system to fight off all the germs that are in a preschool classroom, and we started to get concerned about the possibility of severe GI complications that could result from the illnesses she was picking up at school. A couple weeks after she turned 3, we went to a developmental pediatrician who helped me to realize that much of what we were seeing with her was the result of anxiety. She suggested asking Raya's care team about letting us try a medication called atarax to help her relax in the evening and hopefully be able to fall asleep.

A week later, she had surgery. In pre-op, she was given a dose of oral versed through her G tube to help chill her out while they got her into the OR and put her under. She had what is called a paradoxical reaction, meaning that instead of making her calm and relaxed, she became combative and agitated. She was like a 30 pound angry wet noodle. I don't know what happened once they went through the doors to the OR, but when the anesthesiologist came to talk to me, he told me that she should not ever have versed again. Like, ever. Because of her reaction and because of her history of waking up from anesthesia like an angry wild animal, he gave her a med called clonidine to help her come out of it more calmly. It worked BEAUTIFULLY. She slept peacefully for 2 hours in PACU and woke up calmly and as sweet as ever.

A few days later, she had a follow-up with her neurologist. After discussing everything that was going on, she decided that rather than try atarax, we would just try clonidine since it had helped after her surgery. Since the first dose, clonidine has been a miracle and a godsend for her/us. I remember sitting on the couch with her the night we gave her the first dose and just watching in amazement as she peacefully drifted off to sleep less than an hour after we gave it to her. I may have actually done a happy dance.

Although she is able to go to sleep with the clonidine, she does not always STAY asleep all night. Most nights, she still wakes up about 4 hours after she gets the dose. Incidentally, it usually happens between 10 and 11 pm. Last time we saw neuro, she said clonidine only works for about 4 hours so we now are able to do a smaller second dose if we need to later on at night.

Last Wednesday for her GJ tube placement, we used a dose of clonidine to help her relax for the procedure since I am not allowed into the radiology suite while they place the tube. It did its job and put her to sleep, but she woke up as soon as they put her on the table and tried to touch her G tube. We ended up opting to do anesthesia so that we could get the tube in without traumatizing her. For whatever reason, when I gave her the clonidine that night at the normal time, it did not make her go to sleep. It didn't work the next night either. Or the next night. By Monday night, I was starting to panic a little. She was waking up groggy and exhausted in the morning, falling asleep in the afternoons, and then couldn't go to sleep at night. On Tuesday, I decided that I would not give it to her that night, thinking that maybe it would reset her body and allow her to start responding to it the way she was supposed to again. I figured we didn't have anything to lose by trying it and decided that if it didn't work, I would call her neurologist and see what else we could do.

Tuesday was a busy day. Again, she woke up groggy and was telling me all morning how tired she was. We got in the car and went to OT and feeding therapy, and then had 90 minutes to kill before her GI appointment. We drove home, and both girls fell asleep. I threw together a quick sandwich and got back in the car to drive back to the same part of town for the GI appointment. Raya woke up enough to walk into the clinic, but since we were pretty early, we sat in the waiting room for a while and she fell asleep.

The nurse came out and chatted with me for a while until the medical assistant came to take us back to a room. I carried Raya and the nurse pushed Piper in the stroller. I love going to that office. :) For GI appointments, the weight checks are done with nothing on but a hospital gown so it was super fun convincing a half-awake kid to let me change her clothes. She was SO sleepy!

The GI visit went fine. Nothing exciting to report since we were still too close to the GJ change to be able to tell if we were seeing positive changes or not. She hasn't gained an ounce in 6 or 8 weeks again, so we're going back for another weight check next week and if she hasn't gained, we'll up her calories again. Hopefully we won't have to because that would set us back on increasing her feed rate to decrease her time on the pump, but if we must, we must.

After GI, we went home and did all the usual evening stuff. I sent all the kids to bed around the usual time, and at first it seemed like she was going to fall asleep, but just a little later than normal. Ha ha. It was wishful thinking. Bedtime at our house is 7:00 during the school year and between 7 and 8 during the summer. Here's Raya at 9:15:
And let's pause for a moment to appreciate the irony of the minion card she's holding. Ever since we saw Despicable Me 2 at the summer movies a few weeks ago, the feeding pump sounds like minions to me. "BEE-dow, BEE-dow, BEE-dow..." It's slightly less obnoxious when you think of it that way.

I kept waiting for her to at least show signs of slowing down but it never happened. Then Piper woke up, which is rare, so she joined us in the living room. And puked all over my pillow while I was holding her after she drank her bottle. Thanks, kid.

And here she is shortly after 11:

Piper fell asleep on a blanket on the floor so I let her stay there. The last I remember looking at the clock, it was about 11:45. I woke up briefly at 1:00 and couldn't believe she was still awake, but she was finally playing quietly so I just went back to sleep. At 3:30, I woke up because she turned on another episode of "Deadliest Catch" on Netflix. At that point, I needed to get up and pump anyway (yeah, still doing that) so I put Piper in bed and got everything I needed. Raya sat next to me on the couch (more like bounced around on the couch) while I pumped and we watched Deadliest Catch. She was chattering away about fishing and boats and the toys she was playing with, etc. and still showed no signs of slowing down. At 3:45 am, I finally caved and decided that for better or for worse, it was time to give her the clonidine. This is the picture I took of her at 3:45 am:

See what I mean? This is not the same as a kid that just throws a fit about going to bed. Her body and mind just could not slow down enough for her to be able to go to sleep. If it was something that melatonin, essential oils, and sensory routines could fix, we would do those things. We HAVE done them. Unfortunately, they just don't do enough for her, and there is nothing normal or okay about a child who can literally stay awake all night long. This is why the prospect of her clonidine suddenly not working for her anymore was enough to send me into a bit of a panic.

At 4:30am, we were both still awake. I couldn't keep my eyes open anymore though, so I laid back down on the couch and went back to sleep. I don't know what time she went to sleep but I think it was shortly after I did. I woke up again at 7:30 to take care of Piper and make sure everybody was eating breakfast & doing their morning tasks. Raya was awake again at 8:20, but then fell asleep again for another hour until it was time to start getting ready to go swimming.

I wore her out on Wednesday the best I could, and didn't let her nap. We didn't go anywhere in the car because I knew that would have put her to sleep in a heartbeat. On the advice of the GI doctor, we gave her the dose of clonidine an hour earlier than normal that night and crossed our fingers. It took about 2 1/2 hours, but she finally fell asleep and slept more than she had in a week. (still came in our room and was awake for probably an hour or so in the middle of the night but better than the rest of the week) She woke up yesterday morning feeling refreshed and happy instead of groggy and tired.

Last night, we gave her dose at the normal time and she fell asleep within the normal time frame. I am breathing a huge sigh of relief and crossing my fingers that this is just a fluke and we won't have this problem every time she has to do anesthesia.
She is beautiful when she's awake, but she's a whole other kind of beautiful when she's peacefully sleeping. Especially after seeing how run down and exhausted she got after a week of having her sleep so thrown off. I hate that she needs medicine to help her sleep, but I am so very thankful that we have that option, for her sake and for my sanity's sake.



Monday, July 14, 2014

Advocating for my child

I mentioned a couple weeks ago that, for many reasons, we had decided to switch Raya's G tube out for a GJ tube. We had come up with a good plan and I felt good about Raya having a GJ tube again. Then after I hung up the phone from talking to the radiology scheduler, a wave of anxiety washed over me as I thought about the actual process of placing the tube. Even though I knew that trying the GJ was what we needed to do, I was completely overwhelmed by dread and anxiety just thinking about putting Raya through that process.

Rewind with me for a moment, back to September 2010. Our first experience with getting a GJ tube (or rather TRYING to get a GJ tube) happened when Raya was 9 1/2 months old. She'd gotten her Bard button about 5 weeks earlier, and had started vomiting brown blood, meaning that she had a slow, chronic bleed somewhere in her stomach. Her GI decided to do a scope and found that a large lump of tissue had formed adjacent to the bumper that held the tube in her stomach. She and I had talked prior to the scope and had decided that it was time to try doing a GJ tube to see if that helped with her vomiting, so the plan was to take out the Bard button during the scope and have interventional radiology (IR) put in a GJ tube while she was still under anesthesia. Unfortunately, the right hand wasn't talking to the left hand that day and it did not end up happening that way. Instead, they stuck a Foley catheter in her stoma and we had to wait for IR to have time for us, which meant that Raya was fully awake and was a mess from the anesthesia. That was the first time she really had a hard time coming out of it nicely and was like a wild animal. With narcolepsy. Really. She would wake up screaming, crying, and thrashing around, and then just pass out again. It wasn't funny but I laughed about it so that I wouldn't cry.

Finally IR was ready for us. This was the point at which I learned that parents are not allowed into the IR department at our hospital during procedures. I wasn't happy about that and Raya wasn't either. I was also told that they would not be using any sedation. After 20 minutes, the radiologist came out carrying Raya, who was beet red and sweaty, and crying that sad, pathetic, hoarse cry that happens after a child has been screaming for a long time. She was the embodiment of the term "hot mess". As the radiologist handed her over to me, she said, "Well, if you want a GJ tube, her surgeon is going to have to revise her G tube site because there's no way I can get one in there with the way they put her G tube in. It's anatomically impossible. I put a MIC-KEY button in for now until the surgeon decides what he wants to do." I was taken off guard and rather stunned by that result.

For another month, we dealt with Raya vomiting blood. Looking back on it, that was a horrible month. As positive as I tried to be, and as hard as I tried to take care of my baby, I felt like things were spiraling out of control. On a Monday morning in the middle of October, the vomiting had reached the peak of its violence. By that, I mean that her vomiting and retching episodes were getting more and more violent. It was horrible to watch. That morning, I had decided it was time to tear apart the pack & play that she was sleeping in and scrub it the best I could to try to get the Neocate vomit smell out of it. While I had it upside down in the kitchen and covered with soapy water, Raya took a nap in the temporary little "corral" I had made for her with the baby gate in the corner of my room. In the absence of a mattress, I had put down a waterproof pad and some blankets for her to lay on. I don't remember all the details now but I must have heard her vomiting at some point. When I went to clean up and check on her, I saw that she had vomited chunks of blood. They were small, but there were a lot of them. I emailed the picture to our nurse and asked her what to do with my poor kid. Soon after I sent the email, she called me to let me know that the GI doctor was admitting us and she would call me to let me know when there was a bed available for Raya at the hospital.

After a couple days of gut rest, it was time to try another GJ placement. This time, since there was an IV in place, they were merciful enough to give Raya some Versed to help calm her down for the procedure. It worked beautifully, and within about 10 minutes, they brought her back to me with a brand new GJ button. Apparently it was NOT anatomically impossible after all. The next 2 weeks proved to be the exact opposite of what I had expected post-GJ placement life to be. Instead of stopping her vomiting, it just changed it. Rather than vomiting formula, she vomited bile. If you've never smelled bile, the best way I can describe that odor is a combination of poop plus the WORST bad breath you can imagine, x10. It is horrid. I felt horrible for her. I've thrown up on an empty stomach before and it was gross, but I never vomited 8+ ounces of bile before like she was doing. It took us 2 weeks in the hospital to get things calmed down enough to go home. The GJ was a godsend for Raya in many ways, but getting to the point of being able to see the benefits in it took much longer than I had anticipated, and the whole process was difficult.


Having that background information should make it easier to understand why I felt so much trepidation about putting her through the process of getting the GJ tube put in. Beyond our previous experiences with IR (none of which had been pleasant, by the way), Raya's last 2 hospital stays had a lot of traumatic experiences. I felt very strongly that we could not put her through a GJ placement and let it be as traumatic as her previous GJ placements had been, so I reached out to a friend who is heavily involved in parent advocacy at our hospital. She had recently done a lunch presentation for the radiology department where she went over some common difficulties that parents had reported dealing with and ways that those things could be improved. She was able to connect me with the radiology manager, who had the radiologist that would be doing Raya's placement call me to discuss our options.

Last Tuesday morning, I talked to the radiologist and we decided that I would give Raya a full nighttime dose of her sleep medicine as soon as we got to the hospital. It takes it 45-50 minutes to kick in, so the timing would be perfect that way, and we felt like that might be enough to keep her calm for the tube placement. Plan B was that if the sleep meds didn't work, we would do something stronger, like an IV sedative. I got off the phone feeling like a huge weight had been lifted off of me and my anxiety almost completely went away. I really wanted to reach through the phone and hug that doctor. (it was not the same one we used to deal with in IR)

There's really no prep required for a GJ tube placement. The scheduler had just told me to not feed her for about an hour beforehand. That made me chuckle a little because if she actually WAS getting fed before that, it would take more than an hour to clear her stomach. Since we were scheduled for a 9:30 check-in and 10:00 appointment, I decided that I would just wait to start her feeds until after the tube was placed since I normally start her at 8:00. Wednesday morning, I got up early and showered, made sure everybody had what they needed, dropped the other 4 kids off at various friends' houses, and Raya and I headed for the hospital.

We got there early so we killed time by sitting in the car in the parking garage and taking selfies.

When it was time, I gave her the medicine and we went inside and got checked in. The only little issue we had was that the lady in admitting sent us to the wrong waiting area. Instead of the one I thought we needed to go to, she sent us to the surgery waiting area. The volunteer had gotten up and left her desk right when we got there so I couldn't check in with her right away and we sat there for about 15 minutes before she finally came back. Raya was starting to get groggy so I asked her if we were where we needed to be and she called IR to find out. Even though I assured her that I knew where I needed to go next, she insisted on walking me there. They took us right back to a room and while we waited for everybody to be ready for her, she fell asleep in the stroller. We thought we were in great shape because she was sleeping pretty hard at that point. They took her into the radiology suite and I went back to the waiting room. About 2 minutes later, they came back and got me and said she had woken up as soon as they put her on the table, and that she wouldn't let them touch her tube. The radiologist said, "I'm not going to force this on her, so we need to go to plan B. We can either place an IV and use a heavier sedative, or we can call anesthesia and see if they have anybody available. If they don't, we'll probably just have to reschedule for another day unless you want to try getting and IV placed." I told her that I'd rather not do the IV option because they are always difficult to place, and ALWAYS traumatic for her. She said she'd call anesthesia and we'd go from there.

Raya and I went back into the room we had been waiting in before. She was scared and sad but she was also being very brave and handled it very maturely.

And then she fell asleep again.

In what I know was an answer to prayer, anesthesia happened to have someone available within the next 5-10 minutes to come and put Raya under. It was also a huge blessing that I had not given her anything to eat or drink that morning because if I had, we would have had to wait until it had been a few hours since her last food or drink. They took her back in and put her under with the mask. She woke up again when they got her in the room, but they didn't have too difficult a time getting the mask on her. It wasn't long before they sent me to the surgery waiting room to wait for her to get to PACU. The only unexpected surprise I had was that they didn't have the correct French size in stock so they downsized her from a 16fr to a 14fr, but I don't think it will be a problem.

In PACU, it took her a long time to wake up because she'd had her full dose of sleep medicine. This is a good thing because it always helps her wake up nicely, but she sleeps for a long time after anesthesia when she has it. Because of Piper's nursing difficulties, I am still very close buddies with my breast pump, which was in the car because I hadn't anticipated being there as long as we ended up being there. If it hadn't been for that, I would have let her sleep it off longer, but I needed her to wake up so we could leave. It's always a shame to wake a sleeping beauty!

The great thing about having a kid that is tube fed is that when you are in PACU, you don't have to wait for the kid to eat or drink anything before they'll let you leave. I had the feeding pump all set up with Pedialyte so after the nurse and I woke her up and I felt confident that she was ready to go, I plugged her in and got her pump running, and away we went.

Here is her fancy new GJ tube (AMT G-Jet):

We headed out the door and I got her settled into her carseat so that I could finally pump before we started the drive home. She fell asleep pretty much as soon as I got her in the carseat.


I picked up the rest of the kids and they all waited on Raya hand and foot for the rest of the afternoon. It's really sweet the way they rally around and take care of her on days like that.

So far, the J feeds are going well and we have not had the major problems we had when she got a GJ before. We've been slowly increasing the feed rate and she seems to be doing fine with that so far. The only things that have concerned me a little are that she still has very little interest in eating much and she seems to get full really quickly, and that even 5 days afterward, she is still having effects from anesthesia. Her sleep schedule has been completely out of whack since Wednesday, as evidenced by this accidental afternoon nap on Saturday:

Her sleep medicine is not making her go to sleep this week. I'm still holding out hope that it's because of the anesthesia but I will cry if it really doesn't work for her anymore. On a positive note, she has been much more calm than usual and I have seen an increase in her attention span already. I know the great session she had at OT Friday helped with that, but it's still exciting for me to see a big and fast improvement like that.

Overall, the experience could not possibly have gone any more smoothly considering the anesthesia, and I'm very happy with how it all went. Contacting the IR department ahead of time was definitely the right move because they were very willing to help out however they could. I will most definitely do that again in the future if/when I have concerns about a procedure.

Saturday, July 5, 2014

A lovely 4th of July

In the history of Independence Days in the nearly 13 years that I've lived in Arizona, this one was definitely one of the most pleasant. The weather was AMAZING. The day started out with a bang when the kids went outside at 6:00 and found out the hard way that we have an ant problem in the back yard. I was rudely awakened (as was half the neighborhood) by the sound of Raya screaming as if she was being chased by an axe murderer. I ran outside to see what was going on and she was laying on the ground with her tipped over tricycle and the big kids were slapping her legs & feet as she screamed, "THERE'S ANTS ON ME!!" I was honestly surprised that nobody showed up outside with the way she was screaming. She got a few bites and a renewed fear of ants, but she's fine. I hadn't realized how many ant bites she had until I was cleaning her up a little while ago. She got about 20 bites. Good thing she's not allergic!


After that, we were all very much awake and we were able to make it out of the house at 7:45 to go to the flag raising ceremony and breakfast at the church, and the weather was gorgeous. It was about 80-85 degrees, overcast, and a cool breeze blowing. Totally unheard of for July in Arizona. The kids all wore their shirts they had made (thanks to Grandma in Idaho for sending the supplies & instructions!) and Piper wore Ashtyn's 4th of July outfit from 11 years ago. :)

They ate donuts and fruit, played games (gunny sack race, sunflower seed spitting contest, and water balloon toss), and rode with their friends in the bike/scooter parade.

Piper was ready for a nap by about 8:30

Donny and Ashtyn won the water balloon toss. She ended up getting soaked on the last throw but they were really far apart by the time they popped their balloon!


When we got home, Donny and the kids took advantage of the beautiful weather by trimming the tree in the front yard. It's been getting a little overgrown and there was a lot of dead stuff, and we're heading into monsoon season so it needed to be done before the storms hit. It was muggy and the temperature went up quite a bit by the time they were done, but the kids had a great time "helping".
Donny in the tree

Working hard piling up the branches

They named this branch and took turns riding it.

Everybody had to take turns posing for the camera :)

Raya is turning into such a big kid! *sniff sniff* Where did my baby go?!

At one point, they all came running into the house yelling for me to come out and see the awesome fort they had made out of tree branches. They were pretending that Kaida had a branch-breaking business and would bring branches to her area of the fort so she could break them. Everybody had their own spot in the fort, and they all had pretend jobs to do. I loved listening to them play. It reminded me of playing with my siblings on the farm when we were little. There was an old pile of dead trees that we used to play in just the same way they were playing. We also played in a junk pile and there were a couple of spots along the irrigation ditches that we liked to play. That was one of the best parts of growing up on the farm so hearing my kids play like we used to play made my heart happy.

The kids in their tree branch fort

Donny and the kids :)

Raya was sweating buckets and all splotchy-faced when they came in.

By the time everybody came in for lunch around 1, it was about 95 degrees and muggy. They were all sweaty, smelly, and covered in scrapes & scratches from climbing around the tree branches. They were hot and tired but also very happy. :)

Everybody ate lunch and then Cole & Ashtyn went back outside with Donny to help him cut & stack all the branches since we missed bulk trash pickup this month. The little girls took a shower to cool off and then got their 4th of July shirts back on.

We ate an early dinner. Indoors. Cooked indoors. What can I say. We have no grill and it was hot outside. :) We had delicious hamburgers, mixed veggies with our favorite seasoning, salad, Cheetos, and pop. As Cole was taking the last bite of his hamburger, he declared, "This is just like Christmas dinner!" Donny and I looked at each other with confusion and asked him how our 4th of July dinner was ANYTHING like Christmas dinner. He said it was because there was so much food on the table and we rarely ever have things like chips & pop. Silly boy.

We watched Honey, I Shrunk the Kids while I got dinner ready and then we ate. And by we, I mean everybody but Piper, who was napping in her rocker.
While I was cooking, she asked if she could have a hamburger too, so I cut up half of one of the patties and let her taste it. She liked it but she still has a hard time eating meat so she didn't eat much of it. She shocked all of us by eating about 3 tablespoons of mixed veggies though. She ate corn, peas, carrots, green beans, and lima beans. I had put a couple teaspoons on her plate and by the time dinner was over, she had asked for more about 5 times and was eating them out of the pan in front of her.

The older 2 kids are getting ready for a karate tournament next weekend so they've been putting in a lot of extra hours of practice this weekend. After dinner, Donny took them to the karate gym to get a little bit of practice in and the girls & I cleaned up dinner. I laid down on the couch and tried to no avail to take a short nap after being up 2 or 3 times the night before and having gotten up at 6. It's too hard to nap with 5pm Raya around. 5pm Raya has a LOT of energy and is rather noisy, and wanted to snuggle but could not hold a single part of her body still for even a second.

She kept wanting me to take pictures of her playing with Piper, so I obliged her. She loves making silly faces for pictures.


I was trying to take a picture of Piper with her tongue sticking out. When she was born, the nurse told us she looked tongue tied, and the feeding difficulties we've had pointed in that direction too. I have wondered if she was able to stick her tongue out at all, and thanks to the popsicle I let her lick the night before last, we now know that she can. :)
She really liked the popsicle, so I'm feeling optimistic about giving her food when she's ready for that. She was cracking me up licking the popsicle!



Anyway, ever since then, she's been licking her lips a lot and practicing sticking her tongue out now that she knows she can do it. Not sure what to make of the fact that it only goes to the right, but whatever.


One of Raya's favorite hobbies lately is making up songs for Piper when she's crying. The words to her songs are always amusing and the tunes are sometimes painful to listen to but the whole package is sweet and adorable. I love her creativity! She was feeding Piper her bottle and singing to her, and wanted me to take a picture.



When the big kids got home, we ate the dessert that Ashtyn and I had made. It was a fruit pizza with sugar cookie crust, dairy-free cheesecake-flavored pudding, blueberries, and strawberries. The pudding was just a Jell-O pudding mix that I made with 1 can of coconut milk instead of dairy milk since I'm not able to have dairy milk right now. I saved some of it so that Raya could eat some pudding for dessert too, and she loved that. It is a good feeling to find ways to include everybody in the food we eat.

It sure was tasty!

After dessert, we went down to the other end of the alley to light fireworks with the neighbors. The kids had SO much fun! It was only a couple years ago that fireworks became legal here so it's still new & exciting for our kiddos.
Throwing pop-its

This was about 30 seconds after I had told the kids to stop throwing pop-its at each other's feet. Dads are more fun than moms.









There were about 4 of these ridiculously bright strobe light ones. Notice Ashtyn's little distress signal. :)




When the fireworks were over, we ran around a little bit trying to see the big fireworks that we could hear going off. We sent the kids to bed at 9 and enjoyed a little peace and quiet before we fell asleep too. It was a great day!
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