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Wednesday, March 26, 2014

Weight check woes

Raya had a weight check yesterday due to the fact that she had lost a couple ounces between GI appointments when we saw her doctor a month ago. My optimism about this weight check went out the window a week & a half ago when she got a runny nose and her motility suddenly tanked and we couldn't feed her the usual amount of formula for about 4 days but I didn't think it would be quite as bad as it was.

Well, if you ask Raya, it was the best appointment ever. She loves going there because everybody knows her and they all talk to her so she feels like a little celebrity. Heck, I usually feel like I'm just part of her entourage when we go there. :) They spoil her rotten at that clinic too. Last time she got to pick 2 toys from the secret toy closet. Yesterday when we were checking in, we ran into her GI doctor and Raya chatted with her about what food she had eaten at feeding therapy. I love seeing Raya interact so happily with her GI. She is a really sweet woman and she loves Raya, and Raya loves her too! Right after that, the GI doctor's nurse came walking out and started talking to Raya. While I was checking in, she said, "Raya, come with me. I have something for you!" They went back where the surgery clinic is and came out a minute or two later and Raya had the cutest little stuffed animal. It looks like a cupcake and when you pull on the top of it, a cute puppy pops out of the little cupcake wrapper-looking thing. Super cute. Then her preschool teacher from last year just happened to be walking through the waiting room and came over to say hello to Raya. After that, one of our favorite medical assistants came out to get us for the weight check. That was the not so good part. :/

At her last GI appointment, she weighed 15.2 kg. That was down from 15.3 kg at the appointment before. At her neurology appointment 2 weeks ago, she was weighed fully clothed and the scale said 14.3 kg. I laughed it off thinking something was wrong with their scale but apparently it wasn't. Yesterday's weight (sans clothing) was 14.7 kg. Since she was 14.3 fully clothed 2 weeks ago, goodness knows how low she actually got but the bottom line is that she lost at least 22 ounces and maybe more. That's the most she's EVER lost (that I can remember anyway), let alone in just a month and I cringe to think how long it might take us to get that much weight back on her. The nurse told me not to stress about it because she was sick and a kid like Raya can easily lose 2 pounds from an illness. On the bright side, she grew 2 cm in the last month and is up to 101 cm now. She's looking long & lean these days!
Balancing at OT yesterday

While I was getting Raya dressed, her nurse came in and brought her a very nice, handmade quilt that had been donated by a local group. She said they had donated 20 quilts and she picked out one with purple monkeys on it because she thought it fit Raya's personality. :)
After that we had planned on going to a friend's house but that ended up not working out, plus I was pretty stinkin' tired from having been up with Piper at night and taking Raya to OT and feeding therapy, so we went home and I let Raya snuggle on the couch with her new things and watch a movie. I was rather proud of myself last night because even though all I wanted to do at that point was take a nap, I got Piper taken care of and she stayed happy long enough for me to cook a really good dinner for the first time in probably 2 months. Food has been a hard thing for me the past few months. We had pork chops, asparagus, and red potatoes and the kids wolfed it down. Even Kaida had 3 helpings of pork chops. That means I did awesome because she usually doesn't eat much. Donny went back to work Monday after having 4 glorious weeks off, and yesterday was a late shift so I was on my own for the whole after school through bed time hours. We all survived and I only yelled once. I'd be lying if I said I wasn't patting myself on the back by the time the kids went to bed. Today was another very busy but productive day and I would also be lying if I said that I wasn't excited about not having any appointments tomorrow!

Today I took Raya to school and then came home, fed Piper & pumped (since she's still not able to nurse), and then it was time to go to the big kids' school to see Ashtyn in her battle of the books competition. As soon as that was over, it was time to pick Raya up from school. On the way home, I remembered that today was park day for church and since Raya's respite provider had canceled on us again (this time with 48 hours' notice, so better than 15 minutes' notice) we didn't have to rush home to meet her. Unfortunately, they moved park days from 10:00 on Wednesday to 9:00 because it's getting warmer, so everybody else was pretty much done playing when we got there. It's a bummer that they do it on Wednesdays because there's really no chance of us ever getting to go to it on time but oh well. She got to play for about 20 minutes and that worked out perfectly. She had lost the little card that came with the "pupcake" (stuffed puppy) from the doctor's office when she was at school and had been crying about that when I picked her up, so the park helped her forget about it and cheered her up. After we came home, she took a shower. I went to get her a towel and when I came back, she showed me that her horses were getting drinks:

It's a little hard to see but the horses are drinking out of lids from cans of shaving cream. It struck me as funny. She has a good imagination.

Piper had a pretty good afternoon too compared to the last couple of weeks. We have not been able to get her to sleep without being held, whether it was during the day or at night, and just this week she's starting to sleep independently a little bit. She had a nice nap on the couch this afternoon and it gave me a chance to vacuum the living room floor and get a couple other small things done.
(and yes, she's napping on her stomach. No judgment. I was right there the whole time and it was a good stretch for her neck muscles since she has torticollis like Raya did.)

She sleeps really well when she's in the wrap. I had to take her with me Monday afternoon to the part of town that I would never go to after dark to get her birth certificate. I carried her in the wrap and she slept the whole time except for when she drank her bottle. It worked great! I love snuggling her in it.

I think that's about it so far this week. It's been a busy week but I guess that's a good thing because I haven't had time to sit around and be depressed about Donny going back to work. It was really great having him home for a month. I have a couple of things I need to get done tomorrow but after that, I plan on not doing much the rest of the day. There is more to recovering from childbirth than getting your figure back, and although I'm feeling MUCH better than I was a couple weeks ago, my body still reminds me after days like the last 3 that I'm not there yet.

Sunday, March 16, 2014


We're doing a lot of juggling around here these days. (hence a blog post that I started writing 6 days ago and am now attempting to finish...) Juggling kids, juggling household chores, juggling taking care of an increasingly fussy baby, and trying to make sure everybody feels loved and is happy. It's a big job and I'm SO thankful to have a husband who is as dedicated to our family as I am and who loves being home as much as we love having him home. I would have been a disaster these past couple of weeks without him here and I'm dreading when he goes back to work already!

Monday was Ashtyn's 11th birthday. She is our oldest. The original puker. :) If you're new to the blog, all 4 of our girls (yes, new baby included) have been refluxy, pukey babies. Ashtyn got off to kind of a rough start because she had some feeding difficulties and pretty much half of everything that we could actually get into her came right back out. Aside from having to cover everything with towels, blankets, and burp rags for the first 18 months of her life, she was always a really happy, easygoing girl and eventually grew out of her reflux problems. She is just as sweet as they come and is the BEST big sister the other kids could have ever asked for. She is an amazing kid and I'm so grateful for her and for how helpful she is. I remember her kindergarten teacher telling me at parent-teacher conferences once that Ashtyn had an old soul, and I think that's a perfect description. She's always been very aware of other people's feelings and has a special place in her heart for people with special needs. She's a great kid and I love her to pieces!
We did all the things Ashtyn wanted to do for her birthday. (except for me getting my teeth cleaned, that was scheduled before I realized her bday was on Spring Break) I took her to get her nails done and then we went to her favorite restaurant for lunch, where she accidentally learned that some sushi has raw fish on it. :) After that, we stopped by DQ to pick up an ice cream cake and then went home so I could snuggle my baby. It's crazy how much a mama can miss her baby after an hour or two away!

 After we got home, Raya's respite provider came and Donny took the 3 older kids to see a movie. It turned out to be a pretty peaceful afternoon for me.

Tuesday ended up being a pretty low-key day. We ended up canceling Raya's therapy appointments for the day because she had puked all over the living room carpet Monday night and we were still trying to figure out if it was a motility problem or a stomach bug. Turns out that it was a motility problem caused by "just a cold". This is why we stress about her catching "just a cold" or anything at all. Her stomach pretty much shut down and instead of tolerating 4 bolus feeds of 2 hours each, she is now having to be fed continuously at half that rate, so she's on the pump for about 16 hours a day.

Either way, she wouldn't have felt up to doing anything at therapy anyway so it was just as well that we canceled. The kids pulled some weeds in the back yard and everybody just kind of did whatever all day. It was great! Except for the part where this little princess cried ALL DAY LONG. She would cry for half an hour or more, then fall asleep and sleep for 20-30 minutes and then wake up and cry some more. It wasn't fun.

Wednesday was busy. I had scheduled Raya's first appointment with her new neurologist back in December when we found out that her previous one had left (SO SAD!!). I knew I'd have a baby that was approximately a month old and that we'd be pushing it to get downtown to the hospital before midday so the appointment was scheduled for 11:00. Then they emailed me this week and said we needed to come at 10:30 to fill out paperwork since it was our first visit with this doc and first visit in 6 months. Then another mom from the other side of town needed some supplies from somebody on our side of town (which is about 2 hours apart, depending on traffic) so I agreed to meet her in the parking garage at 10:15 for another covert medical supply drop. :) Even just saying, "Hey, let's meet on the 4th floor by the elevator at 10:15." makes me laugh. I was rather excited and proud of myself for making it there 5 minutes early, even though I had to stop for gas on the way. Maybe I'll survive this mom-of-5 thing after all...

Raya was still feeling a little bit blah and had taken a nap on the drive to the hospital. Piper was asleep too so I waited as long as I possibly could before I got them out of the car. It's always such a shame to wake sleeping children!

On the drive there before she fell asleep, Raya asked me at least 3 times if she would be getting pokes. I told her no every time and then said a silent prayer that there wouldn't end up being any reason to draw blood that day. She was a little crabby when I got her out of the car and into the stroller, but it was mostly anxiety-driven. She's no dummy and she knew exactly where we were, even though we weren't in the main parking garage or the main building that time. Once she sat down in that stroller, she didn't budge from it except when she got her weight & height and vitals taken. The only reason we got her to get out of the stroller for that is because we had the pleasant surprise of seeing one of our favorite medical assistants from the other clinic that we didn't know was working downtown. Raya knew her so she was willing to reluctantly do what she asked her to.

Unfortunately, that was not the case for the new doctor. I had a bit of anxiety about this appointment myself because we'd had such a good relationship with our previous neuro, and it's always scary having to start over with someone new. Thankfully, she was as wonderful as everyone told me she'd be so I breathed a HUGE sigh of relief after our appointment. She scored major brownie points with me by having actually read through the main highlights of Raya's chart & medical history before coming in to talk with us. She was already aware of the main things as well as some of the smaller neuro-related things, so I didn't have to start from the beginning and explain Raya's entire life to her. She looked over Raya's previous MRIs and we discussed the things she saw on them. We talked about Raya's sleep difficulties and her autonomic quirks and we made an adjustment to the one med that we get from neuro. Then she tried to examine Raya and just got a lot of this:
It's kind of sad but also really interesting to watch Raya in situations like this. I was having a very friendly conversation with the doctor, who was extremely personable and likeable, and made efforts to engage with Raya. At times, Raya would speak up and try to interject something into the conversation, but then as soon as our attention turned to her, she'd curl back up into the stroller. It was this huge internal conflict between knowing logically that if Mommy was friendly with this doctor, it was probably okay for her to be friendly with her too, and the anxiety she was clearly feeling. She was as cooperative as a kid can be for a neuro exam when they're curled up in a stroller, but she refused to get out of the stroller and walk so the doctor could watch her. To the doctor's credit, she was very sweet to Raya and didn't force the issue once we had asked her a few times to stand up and walk. I appreciated that she knew when to draw the line and give Raya her space, and I think that next time we see her, Raya will be more likely to cooperate because of that.

In the waiting room, there had been some volunteers handing out coloring books and paper brain hats for Brain Awareness Week. Raya wasn't at all interested in the hat while we were in the waiting room but she put it on when we got home. :) It's backwards, but whatever. :)

Wednesday afternoon kind of turned into a mess. Donny had a PT appointment, which was why he couldn't keep the baby at home for me during Raya's appointment. There was a bit of a...misunderstanding...or something like that, with Raya's respite provider and instead of coming at 1:30 like we had agreed on, she texted me a few minutes before that to let me know that she was babysitting for someone at church that was in the hospital and wouldn't be here until 2:30. She was doing it to help out someone in need, but it was still frustrating for me, especially since we had agreed on her coming from 1:30-3:30 and it was already her scheduled day to come watch Raya. Not to mention that I was tired & crabby by that point in the afternoon thanks to being up a couple times with the baby and taking both little girls to Raya's neuro appointment.

Thursday was another blissfully low-key day, aside from Piper's pediatrician appointment. Even that was pretty low-key except for the part where she blew out the front of her cute little outfit. How do babies even do that? They manage to shoot the poop out of the diaper all over their clothes and barely get any of it IN the diaper. I'm also starting to think that she hates her "Mommy Loves Me" shirt because she's managed to poop on it every time she's worn it.

It is very strange for me to go to a ped appointment and only hear positive things, leave in under an hour, not have to come back in a week or two for weight checks, not have referrals to specialists, and have the numbers on the scale actually go UP! This is not to say that everything is totally peachy with her, but we're off to a much better start than we were with the last 2. There are still some questions about her feeding issues and why she has them, (i.e. I'm still not 100% convinced that she doesn't have some degree of tongue & maybe lip tie that interferes with her sucking patterns) but for now I'm content with the fact that she's gaining weight at a good rate on just breastmilk. Having prepared myself mentally for much worse things and knowing that they're still possible, I'm just living in the moment and being happy with how everything is right now. I've been told that's pessimistic of me but I don't believe that. I think it's just living with my eyes open.

She has gained just over a pound since birth and since she started out a pound heavier than Raya & Kaida, she weighs more now than they both did at 2 months old. They both stayed in newborn size diapers & clothes until about 2 months, but we ran out of newborn diapers at 3 weeks with Piper so she switched to size 1 already. She's kind of in between the newborn & 0-3 month clothes right now. I have to consciously not allow myself to get sad about her growing out of the newborn clothes, but I'm happy that she's doing well. She's long & lean like the other kiddos. We talked about reflux meds but agreed that there are some other things I can try first before we go down that road. Believe it or not, I'm not a fan of giving medications to my kids if we don't absolutely have to, and I like to try other options first. Anyway, I'm making some dietary changes and we're trying a couple of other remedies, as well as trying some different bottles since she's still not nursing, and hopefully that will be enough to avoid the meds. Heck, I even agreed to start with Zantac rather than just jumping straight to Prevacid. Anyone that's familiar with reflux meds should understand that that means I'm being really conservative with treatment. :)

I think we're making progress already. As bad of a day as she had on Tuesday, that's how good her day was on Thursday. She slept a LOT more and seemed more comfortable overall.
She hardly ever lays in her bed. With 6 other people in the house, somebody is always holding her. The 3 big kids have learned how delightful it is to lay on the couch with a snuggly little baby on their chests so I catch them all doing that every time they get to hold her. She is very, very loved and most definitely belongs in our family.

Friday was Piper's 1 month birthday. Rather than allow myself to be sad about how quickly the last month has gone by, I finally felt good enough physically to get out all my gear and do a proper photo session with her. The weather was gorgeous that day so I set up on the front porch. Unfortunately, she did not feel like cooperating. She was being a pill. About half of the pictures look like this:
 I did finally get her to go to sleep though and she took a lovely little nap on the front porch while I ever-so-carefully took pictures of her. The neighbor girls riding by on their bikes thought I was slightly crazy.

I really didn't care though. I've done newborn pictures for SO many other people and really wasn't feeling good enough to do them when she was teeny tiny, so I really wanted to get some good ones before she doesn't look like a newborn at all anymore. Since she was having such a hard time being happy & sleeping for me, I didn't get to do all the things I had planned in my head but I did get some nice shots of her. I haven't edited very many yet but here are a couple of my favorites so far:


I also managed to pull off a halfway decent selfie with my big fat camera the other day. It's not perfect but I will treasure this picture. :)

And this one, just because it's so typical of our girls and it makes me laugh:

Saturday was a very sad day in our local community. An 11 year old boy with Down syndrome found a way out of his very well-fenced yard and passed away after falling in a canal. We knew his family around the time he and our oldest daughter were born and they are just flat out wonderful people. We've been blessed to be a part of many of the local events for those with Down syndrome and have gotten to know and love a lot of these families, and it is heartbreaking. Of course it's devastating for the family who lost their sweet boy, but it is also heartbreaking for all of their friends who love him so much, and whose kids have grown up together. It is terrifying to know that even parents who do everything right can still have tragedy befall them.

Today has been another relatively quiet day. We had planned on letting the kids camp out in the back yard last night but the wind kicked up right around dinner time so we couldn't put the tent up. I started to get a scratchy throat last night and sure enough, this morning I woke up feeling like crap from the shoulders up. And my back & legs ache. Hopefully whatever it is will pass quickly because I don't have the energy to be sick AND take care of everyone and everything. The girls have been swooning over Piper all day and then she snuggled up with Daddy to take a long afternoon nap, and I've been grateful to have other people to help with her today.

I did make Raya some pancakes of sorts today. I tell you what, cooking with primarily coconut ingredients and no eggs really stinks. She wanted pancakes. I've made many, many batches and used a tedious process of trial and error to find a decent recipe that she could eat. Then we had to stop feeding her eggs and that just blew it all to heck. After a failed attempt at cooking pancakes in the frying pan like normal, I ended up putting batter on parchment paper and baking them in the oven.
After about 10 minutes, they looked great. Until I peeled one off and realized it was still raw on the bottom, so I flipped them over and cooked them for another 10 minutes. Raya must have been REALLY looking forward to her pancakes because she was surprisingly patient through the whole process. They did actually turn out edible, which was really the only requirement at that point. With enough butter & syrup, they passed the Raya test. She ate 5 and asked for more!

Now it's time to figure out what to eat for dinner. That's hard to do when you don't feel like eating. I've kind of lost my appetite since Piper was born but hopefully it will come back soon, along with the energy to actually cook food.

Friday, March 7, 2014

Um, excuse me, you're on my tube...

Raya cracks me up. Even more so when she's not trying to be funny. This afternoon, she asked if she could feed her baby sister a little bit of her bottle. She got all settled in on the couch, I put the baby on her lap, and handed her the bottle. She said, ”Um, Mommy, she's sitting on my tube.” I moved the tube out from under the baby. Raya gave a sigh of relief, smiled, and said, ” Ahhhhh, that's better. NOW I can feed her a little.” I wish I could remember every little funny thing the kids say and do. That's the stuff that makes it easier to swallow the less pleasant things. Like vomit. I had to run a quick errand this afternoon. When I got back, Donny and three baby were taking a little nap on the couch and Raya was playing on the floor next to the couch. Donny mumbled something about Raya saying she had puke in her mouth (which she says often). Raya corrected him and said she had puked but that she cleaned it up. I didn't really believe her until I got close enough to her that I could smell that formula + stomach smell that is forever burned into my memory thanks to her first year and a half of life. She had a little bit of formula puke on her shirt so we went in her room to change her clothes. After I had changed her pull-up, she said she thought she was going to puke again so I rushed her to the bathroom and opened the toilet lid just in the nick of time. That time she threw up a lot but bless her little heart, she got it all in the toilet. She's such a sweetheart and puking didn't even faze her. After she puked I asked her if her stomach felt better and she said it was still full so I plugged in a catheter bag to drain it. Even after vomiting twice, she drained 160+ ml of formula out of her stomach within a minute or two. That meant that her entire 2 hour feed that had just barely finished running was not leaving her stomach like it should have been. Every time Raya throws up I feel torn between hoping that her stomach is just having a bad motility day because that means it's not contagious and feeling bad for wishing dysmotility on her for the sake of the rest of us. The jury is still out add to whether she has a stomach bug or is just having a bad stomach day but it's not the first day this week that she's shown signs of decreased motility. Of course viruses can cause a decrease in motility so it COULD be a virus. (Do we see why this is so difficult?) I emailed her teacher and asked if anybody in her class has been out with stomach bugs this week but she said nobody has. Now we just give her pedialyte for the night and wait to see how she is tomorrow. She doesn't have a fever and has still been eating and drinking water today so that's a good sign. Speaking of good signs, it turns out that babies actually CAN grow on breastmilk alone. So far, she's about a pound more than her birth weight after 3 weeks and in spite of spitting up and choking on her bottle every time she eats. She has a well check next Thursday so the ped and I will be discussing that for sure. Hopefully he will have some ideas for us.

Thursday, March 6, 2014

frustrated mommy

I'm frustrated tonight so I'm going to take this opportunity to whine for a moment. It's currently 1:30 am and instead of being in my nice comfortable bed, I'm snuggling a little baby girl who started to get congested overnight last night because she doesn't feel good and can't lay on her back without choking on junk. I've sort of mentioned that Piper has some feeding difficulties, and anyone who has ever had a child get congested can tell you that kids with stuffy noses have a hard time eating. Suffice it to say that we have seen new shades of blue in her lips today while she was trying to drink her milk. It sucks to see your newborn baby catch germs when you've tried so hard to keep them safe. In all honesty she could have picked up something from an older sibling in spite of us making them wash their hands and put on clean clothes as soon as they walk in the door after school. We've limited their time holding her and a couple of them haven't gotten to hold her much because their allergies have been flared up this week. We've limited visitors and I can count on one hand the number of people outside our immediate family that have held her since we brought her home. Even so, she has been hit by something that's clogging her nose with thick, greenish-yellow snot. It's really friggin sad to watch a tiny newborn sneeze, cough, and forget to take breaths because there's crud in her upper airway. If that wasn't enough, I'm feeling frustrated by Raya's little stomach tonight. And her piece-o-crap feeding pump (ok, it's not really a piece of crap, I'm just annoyed with it tonight). Donny checked on her pump at about 11:30 before he went to bed and found out that it was clogged enough that it wasn't feeding her but it wasn't alarming. (on the list for tomorrow: call home health and get them to exchange it asap because I'm sick of it doing that) It had only had 750ml in the bag but said it had feed 945ml and counting, and when I pushed the prime button and held it over the sink, not a drop of anything came out. I had to literally take the pump bag tubing apart in order to unclog it. (PS tonight I hate that her formula starts to smell like rotten fish when it starts to spoil and I'm even feeling irritated thaI'm mixing formula for my 4 year old, although it doesn't usually bother me. Just extra irritable tonight I guess.) At the same time that he brought the pump out so I could fix it, we realized that she had not woken up yet like she always does that time of night. Want to know why? Because she'd only gotten a little over half of her formula for the day. Guess what happened after I gave her night meds and started the pump again. She woke up crying. I walked into her room and she was sitting on the floor trying to unplug the pump. I asked her if her stomach hurt and she didn't answer. I asked get if she needed the pump turned off and she shook her head yes. I asked again if her stomach was hurting her and she shook her head yes. Unfortunately I couldn't do that because she needed the formula. The only thing I could do was turn her rate way down so she'll get fed more slowly and hopefully be more comfortable. Luckily I was able to get her back in her bed and she went back to sleep instead of rolling around on the living room floor and crying for 45 minutes like last night. So yeah, it's been a frustrating evening. It sucks to see your babies suffering and not be able to fix it. After over 4 years of it, I'm tired. Most of the time I don't even think about things like that because it doesn't do anyone any good, but tonight with the combination of Raya feeling great until we fed her and Piper getting sick, my heart is a little heavy. On the bright side, I bought one of those Nose Frieda nasal aspirator things before Piper was born and that little bugger is awesome. It works great! Also on the bright side, nothing makes me feel more calm, relaxed, peaceful, and happy than my sweet little Piper sleeping on my chest. It's a good thing because she's sticking close by me until she's over the crud she caught.

Tuesday, March 4, 2014

excuse my absence

Life is rather busy these days. (it's a good busy though) I'm doing a lot of this: And a lot of this (especially in the evening hours when she's fussy): And THEY have been doing a lot of this: And in my spare time I'm spending a LOT of time attached to this: Because she hasn't quite figured things out yet and gulps a lot of air which results in this:
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