Sunday, May 29, 2011

Sadie's hospital admission

A week ago today, we got called and told that there was an open bed at Phoenix Children's Hospital (PCH) for Sadie to come get her feeding tube. (I know, I should have updated before now, but it's been a CRAZY week!!) It's just an NG tube (meaning it goes in her nose down into her tummy), and putting it in literally takes 90 seconds, and we could even do it at home. But when first getting one, PCH likes to admit the child for 2-3 days in order to make sure they get on a good feeding plan, that parents are comfortable with re-insertion and care, and so any additional tests can be done. For example, Sadie was going to have X-rays taken to watch food travel into her tummy to make sure there was nothing blocking it, and another X-ray taken to watch her swallow to see if she is aspirating liquid. They can schedule these as outpatient procedures, but the dr. told us that if we're there anyway, it's easier to just do them.

Last Sunday I did a crazy amount of stuff around the house before leaving for the hospital. I made blackberry jam, paid bills, made 2 loaves of bread, and wrote a letter to the insurance company about Sadie's chillout chair (that's another story for another time), and we got to the hospital around 3:30 in the afternoon. We were told to go through the emergency room, because it was a Sunday, but just tell them we were a direct admit and already were scheduled. We did that and got to our room without much hassle.

Immediate we were seen by doctors and nurses and admit people asking us a million questions, that I tried my best to answer, even though Sadie was screaming. I was by myself with her because Brian knew he'd have to bring us dinner, so instead of coming and going and coming and going, he just stayed home and came once at dinner time. The doctor who saw us didn't really understand why we were there, and told me so. I felt foolish after talking to him and I started second guessing myself. Should we have come? Is this the right thing to do? Is this going to make our lives much more complicated? Are we even supposed to be here? But we finally got it straightened out, and Sadie finally fell asleep, and they finally brought us a bed we could both sleep in together (instead of a crib), and it got better. A little.

The worst part of the whole thing was that we had a roommate. Those rooms are so small as it is, but then they stick two patients in there, and it's miserable. And Sadie tends to scream/cry for the majority of the day, so I felt like I needed to apologize in advance. The other patient was also a baby, but she was only 8 mos old. Her name was Rhyan and she also was having trouble eating and gaining weight. She was on the same medications as Sadie, and got her tube inserted that afternoon soon after we got there. The only difference was that Rhyan was completely normal in every other way. They had been going through the whole ordeal while in the hospital for the last week, while we'd been doing most of it at home over the last couple of months. Rhyan's mom was too cheery and too nice and wanted to give me advice and tell me about her experience more than I wanted. It's hard to be in the hospital, and my baby doesn't sleep enough as it is. So, as you can imagine, I turn into mommy-grumpy-pants and I don't want to be friends with anyone, which is the complete opposite of Rhyan's mom.

Sadie got her tube about 6:30 that evening, and that night she started her first night feed. It was like we had to learn a new language. We do everything in ounces at home, but at the hospital they do it in mLs. So, we had to learn that 30mLs is an ounce, and there's a lot of math involved as well in setting up the machine that delivers her feed because we have to figure out how long we want it to take and multiple and divide by the amount we're giving her (in mLs) and then adjust the settings accordingly. Who says you don't use math in real life?

That first night was a little tough, more on me than Sadie. We have a policy at home that once Sadie's asleep you DON'T wake her up. She doesn't get a diaper change in the middle of the night or anything. I tried to explain that to the nurses, but they insisted on coming in every 4 hours to take her temperature. Sadie didn't fall asleep until 11:30, then her machine kept having an error and beeping, then the lady would come in and play with stuff or take her temperature, and I was so afraid of her waking up...but she never did. At 5:30, though, there was light coming in through the window, so when the nurse lifted the blanket off her head to check her temperature, Sadie saw the light and thought it was time to wake up. I had had a HORRIBLE night's sleep because of all the beeping and worrying she was going to wake up everytime she stirred, so I was not ready to be up at 5:30. It took me a half hour to get her back to sleep, and I was hoping I'd get at least another hour of sleep out of it. But the nurse came in at 6:15ish and told me that when babies are admitted for poor weight gain, or failure to thrive (I hate that label) that they're supposed to be weighed every morning at 6:00am on the same scale. I told her if they want her to thrive, they need to let her sleep and if we wake her up right now, strip her down, and stick her on a scale, there is no way she's going to go back to sleep. And I probably wasn't real nice about it, so she backed off. When Sadie woke up around 7:30, they weighed her then and it was fine.

Most of that day we sat around waiting. Sadie's swallow study was scheduled for 3:00, and I wasn't allowed to give her food after noon. One of my worries was that if she had been "eating" all night, she wouldn't be hungry in the morning, and breakfast was always the one meal I could count on her eating plenty. But she ate breakfast okay and that made me feel better. I didn't think it was a good idea to starve her after noon, but I was told I didn't have a choice. They needed her tummy to empty to do the upper G.I. study (where they watched her eat and it go down into her stomach). My dad came to visit us for a few hours, and actually played with Sadie for a little while so I could sleep for a half hour or so. I was so tired I had a headache...which wasn't helping my grumpiness.

Luckily, they came to get us for the tests at 2:15. And Sadie loved the stroller ride through the hospital! She actually stopped crying for a little bit. They did the first test and saw that everything was going down just fine. But she was so upset about us holding her down and squirting stuff down her throat that the speech therapist and I had to blanket swing her to get her calmed down for the swallow test. After doing that, she was eager to swallow anything we put in her mouth, which was encouraging, because I wasn't sure if she understood hunger and associated it with eating/drinking. But she obviously does. They had her swallow different consistencies, starting with thin (like water), then nectar consistency (think whole milk), and finally honey (more like snot). Then they had me feed her what they called "double honey" on a spoon. We learned that she aspirates thin consistency and nectar consistency (this means some of the liquid is going into her airway instead of it all going down to her tummy), and she might aspirate honey consistency if she is given too much and she gets tired (just like when we do something hard and our muscles get tired, we don't do it as well after a while, that's how it is for Sadie swallowing, after a while her muscles get tired and she doesn't swallow as well). She made it very clear that we were not to give Sadie anything thinner than honey consistency. I asked the speech therapist why this was such a big deal since Sadie had never had fluid in her lungs or pneumonia or anything. She told me that Sadie's lungs were probably absorbing the trace amounts that she was aspirating, but over time this could cause her to develop lung disease. (yikes) After that we went back to our room and hooked Sadie up to the feeding machine and within 10 minutes she was much calmer. I even got her to fall asleep...for like 5 minutes until baby Rhyan started screaming (she was also teething).

That night Brian came and stayed with Sadie. I had an all day inservice for work and needed to go home, shower, and have a good night's sleep. He said she never fell asleep all night. 1. He's not Mommy, 2. she was in a strange place. The next day, he pushed the hospital to let them go home. Sadie needed to sleep, we needed to sleep, it was important that we all got back to normal. I was happy to hear when I was done for the day that I needed to go home, not back to the hospital.

Brian met with the speech therapist and was given a feeding plan for Sadie. We are only allowed to give her an ounce of food or drink (thickened to honey consistency) at a time to help her practice swallowing, but not get her too tired so that she ends up aspirating. The rest of her nutrition comes through the tube over the course of the day, then a slow drip all night. It kind of feels like we're going backward, but I understand that it's important to enforce good eating where everything works together and goes where it's supposed to. And hopefully as she gets stronger and more coordinated, she'll be able to take more at one time. The prediction is that this might take 2-3 years...which would lead us to a more permanent G-tube in her tummy sometime soon.

That night after they got home, our house was full of crap. Brian brought home a bag of stuff that included the pump, extra bags and formula, tubes and random stuff that comes with all that. Then we had 2 deliveries to our door of more stuff. We have over 300 packets of thickener, we have 4 cases of pediasure, we got an ENTIRE box of feeding bags that attach to the pump. We felt like Sadie all of the sudden became high maintenance... because she really did.

That night Sadie slept 13.5 hours. I had to wake her to go to therapy in the morning, otherwise who knows how long she would have slept. She was so tired. The nice thing about the tube is that she didn't even have to wake up to get medicine and to eat...although I didn't really realize that that first morning. We let her sleep as long as she needed to the next couple of nights to catch her up from the hospital, and to catch ourselves up as well. She seems to not be bothered by the tube. We've already had to re-insert it twice (once she threw it up, once it got clogged). She seems to be calmer throughout the day, and we now know that when she's having trouble sleeping it's definitely because her teeth hurt (another molar came through last night). I'm hoping that this will finally be "the thing" that she needs to be happy. It's possible that it hurt to drink and that's why she didn't want to do it. Even though it feels a little like we've taken a step backward, I hope that we are able at this point to start building a strong foundation physically and emotionally for eating so that eventually the tube is completely unnecessary. But for now, we will see it as a blessing and not a hindrance, because it is helping Sadie and all we want is what's best for her.

Saturday, May 14, 2011

Sadie's visit at Ryan House

I was so excited about going to Ryan House with Sadie when we got home from Seattle. When we toured it looked like the perfect place with a quiet room, games, sensory toys, a pool, and a bathtub with jets!! But what was even more appealing was that someone else would be taking care of my baby and I would be able to take a break. Especially with Brian gone for 4 more days, this was a big deal.

When we got there, it was a little harder to release control than I thought it'd be. It was important that Sadie got a certain amount of food and liquid each day, and this had to be administered a certain way and at a certain time, or the chance would be gone. It was also important that Sadie got a certain amount of sleep each day, and if it didn't happen, everyone was bound to pay the price. People don't understand that...even people who are USED to working with special needs children. Sadie is a ticking time bomb, ready to explode at any moment if: something smells funny, she wakes up too early, she stays asleep too long, she doesn't eat right when she wakes up, she doesn't get her nap RIGHT when she's tired, you make her work too hard, you overstimulate her, it's too loud while she sleeps, or if her mouth hurts. So, I felt like I needed to be constantly looking over their shoulders reminding them that "it's time for..." or "you should take the opportunity to...right now."

We got there in the afternoon, and on into the evening everything went well. They ask that a parent stays the night that first 24 hours just to oversee and make sure everything goes well. So, Sadie took a nap right when we got there. She woke up and we fed her dinner. There was "drinking" and a bath and jammies and putting her to bed was relatively easy. The night nurses encouraged me to go down the hall to my "parent suite" and relax, they had everything take care of. I graded some papers and went to sleep early. But at 3:00, someone came and knocked on my door. Sadie had been awake for 3 hours and they couldn't get her back to sleep, can I come help? She just needed Mama (and the Tylenol they had given her just before they came to get me), and within 10 minutes I had her asleep and I was headed back down to my room. I wasn't frustrated or angry that they came to get me, it was actually a little relieving! I'm so used to doing that every night that it felt weird not to!

The next day went pretty well. I was able to mostly be independent, but check on her frequently. She had one tiredness meltdown where I couldn't even get her to sleep, so I walked away and asked the nurses to take care of it. I mean, I wasn't going to get all stressed out when this was supposed to be a break for me, and I had all that help just standing around (Sadie was the only kid staying at Ryan House that day). They finally got her to go doing what I told them they should do. Unfortunately, the night staff wasn't there for that.

Sadie had a great day after her 3 hour nap though! (yes, she was THAT tired) She played in the sensory room looking at the bubble lights and the mirror, she bounced on the ball and listened to some music, and she even went swimming! I went to run an errand, and when I got back they were just getting ready to be done swimming and take a bath. And again, bedtime was easy! She had had a stimulating afternoon and she was pretty tired. As soon as she was asleep, I packed up and went home for the night.

It was a little weird to be home all by myself. No Brian. No Sadie. It felt indulgent, and I liked it. I went to bed early after eating breakfast for dinner (something I never get when Brian's home!) and I was sound asleep when my phone rang at 1:00 in the morning. The night nurses (the same ones who had been there the night before) were calling to tell me that Sadie had been awake since about 8:30 and they were really sorry to bother me, but they just didn't know what else to do. They wanted to know if I had any suggestions. I told them her teeth probably hurt and they needed to wrap her like a burrito and rock her. But when I hung up the phone, I couldn't go back to sleep. I didn't know if I should go down there and put Sadie back to sleep, I didn't know if I should bring her home, I felt guilty for leaving her there in the first place when she obviously wasn't ready to be away from me all night. Brian was in Seattle, but I texted him because I needed some support. I finally decided to call Ryan House back at 2:00am and see if she was still awake. If she was, I was going to get in the car, if she was asleep, I was just going to leave her. But I had decided that instead of her staying another night there, I should just bring her home. Even though Brian would be gone another night, it would be less stressful to just have Sadie at home, than worry about her somewhere else.

The next morning I called and spoke with the head nurse. I told her of my decision to bring Sadie home that afternoon (I was too behind on work to get her in the morning) and she was very supportive. She agreed that maybe Sadie is just too young to stay away from me. Plus she understood that she has specific needs that I know best, and how to take care of best. She reminded me that this was a good experience for us and that they are available if there ever comes a time when we HAVE to leave Sadie. She told me their goal is respite care for the family and if neither I nor Sadie was getting a relaxing, restful break, then it wasn't worth it for us to stay.

They are so nice there, and they have such a nice place that I wish we could have stayed longer and I wish it had worked out better. But it's okay, we tried something new. It was a pretty safe way to learn that Sadie really does need either Brian or me to sleep at night, and she's really not ready to be away from us for a long period of time. I have no regrets about our experience there. We have a HIGH MAINTENANCE baby and she is a lot of work! But she does best at home with me and somehow we figure it out everyday how to get things done and still have time to enjoy ourselves.

Friday, May 13, 2011

To school or not to school? Wait...

I guess it's that time of year...when parents start thinking about school. Weird that we think of it in the spring and not the fall, but best to plan ahead! I've been seeing a lot of my friends post questions on facebook about if they should homeschool, or public school, or private school, or church school. And then what about kids with special needs? Where do we put them?

Having worked in the Arizona public school system for a number of years, I decided I don't want my kids going to public school, at least not in this state! Originally, I thought homeschool would be a great idea! I figured, I'm a teacher, how hard can it be? Brian and I had ideas about traveling to great historical sites or even other countries and doing science projects in the garden and all sorts of fun stuff. Then Sadie came along, and now I'm back in the undecided camp.

There are a lot of different opinions about how to school kids with special needs. Should you integrate them into mainstream classes in public schools? I think the advantage of this is that other kids are exposed to people with disabilities and learn how to treat them and act around them. Should you put special needs kids in special needs schools? There can be great advantages to this because the teachers and aids that work in these facilities usually have big hearts and lots of patience and know how to deal with special kids. Or do you keep them at home and school them yourself? This can also be advantageous, because you can stick to your routine and be in your own comfortable environment...but it can also deprive a child of that socialization that he/she needs to develop and grow.

I'm curious about your opinion. I know a lot of people who have special needs children read this blog. I also know that even more people who have kids who aren't special needs read it. I'm curious to hear from both sides of the spectrum.

I know Sadie is still a few years off from school, but there is a special needs preschool that will enroll kids as young as 18 months, and I'm considering taking Sadie in the fall to see how she does. She likes other kids so much, and she might just blossom developmentally if someone other than Mama (who DOESN'T have a special education degree or even a degree in early childhood development) works with her on a regular basis. It's free, as long as their grant comes through, and it might give us good insight into what to do when Sadie turns 3 and we start thinking about school.

It's never too early to start planning, I'd like to hear your experiences with this, so that I can start thinking ahead.

Tuesday, May 10, 2011

We really are blessed

Listening to K-Love (Christian radio station) always reminds me of how blessed I am. They are constantly sharing people's stories of how God has blessed them. One of these days I will call in or write and tell them about Sadie. I have this desire to share her story with the world...and I realized tonight that it's because she is a HUGE blessing. So what if she's almost 16 months old and she can't sit independently or talk or actually reach her mouth with her hands? She can do so much more: She can light up a room with her smile. She can make women everywhere jealous of her eyelashes (even perfect strangers comment on how long they are). She can inspire hope like I've never felt before. She can make my heart feel like it's going to burst when I see her sleeping. She can do SO MUCH MORE than anyone ever thought!

This week we're trying out Ryan House for the first time. I stayed there the first 24 hours and tried REALLY hard (mostly unsuccessfully) to let the nurses and volunteers take care of her. But I found myself talking so much about her and telling anyone who would listen our story. It still brings me to tears thinking of that day we prepared ourselves to say goodbye. And I never get over how amazing it is that she's made it so far.

We've had the same nurse for 2 days now, and I found myself getting deeper and deeper into our story. I started telling her about our blog. And just vocalizing how many people love us, telling her about how quickly we raised $500 for Sadie to get an ipad (that check came in the mail today, by the way), explaining that people who are friends or relatives of people we don't even know pray for us, read our blog, send encouraging messages, really reminded me that we are blessed. I was remembering how much support we received right off the bat, how I finally came up with the idea to start the blog, and make a facebook page for it because everybody wanted to "friend" me and I had all these random people reading my posts about things that had NOTHING to do with Sadie! We've sure come a long way.

We are blessed. Sadie is beautiful. Sadie brings beauty to so many others. Sadie has taught me about love, about sacrifice, about hopes and dreams. I am not a supermom and I will never think that I am, but I am a lot stronger than I was before Sadie entered our lives. Every once in a while, I need K-Love to remind me that the reason this blog is called Beck Family Blessings is because it is about blessings. It's about thanking God for what He's blessed us with, and finding the good and the encouraging and the positive even in the hardest and most trying situations.

And so I leave you with a song by Chris Tomlin. I hope that it inspires you to think about your blessings and who is really responsible for them. To God be the glory.

Monday, May 9, 2011

Our vacation to Seattle

We finally got the courage to take our first vacation by ourselves. Up until now, the only place we've gone is to my mom's, where we have help, we don't stay in a hotel, we have a car, etc. So, we decided to go to Seattle. The reason we chose Seattle is because Brian had a meeting for work there starting Monday morning, he was going to have to leave Sunday night. Instead, we all left Thursday morning, Starbucks paid for his flight, and my flight was free from frequent flyer points, and we spent the weekend seeing the sights of Seattle.

It was a little tricky with Sadie, but it worked out okay. She was really good. She slept at night, she ate her food, she took naps when we needed to her...for the most part. We had an awesome hotel, with a really nice view, 2 blocks from the Space Needle. We had a mini-fridge and a giant bed, and a couch that was comfortable. And we brought the sound machine, that was our life-saver. The only thing our hotel didn't have was a bathtub, so we all had to get in the shower together to get Sadie clean. One person held her while the other soaped her up. It was an adventure!!

We saw the Experience Music Project, we went up the Space Needle twice (once during the day, once at night), I shopped at Whole Foods for the first time, we went to the Aquarium, we walked through the Pike's Place Market (which was a really bumpy street, so Sadie LOVED it in her stroller!), and we took a little cruise of the harbor and learned about the ships and the docks. We did a lot of walking up and down hills. We experienced rain and wind. We saw an IMAX movie at the science center. And we went to a (very cold) Mariners game.

Overall, it was a good trip. It was good to be in the Pacific Northwest. I loved the cool weather and the eclectic food. Going on vacation with Sadie is no longer as scary as it used to be.

Saturday, May 7, 2011

Warrior Women

Every Friday (well, ALMOST every Friday) I sit around a big table in a conference room with 5, 6, 8 moms who also have children with a visual impairment. Many of their children have multiple special needs, like Sadie. And every week, I leave empowered, humbled, encouraged, and renewed. It's like church...for special needs families.

We meet at The Foundation for Blind Children and we've unofficially been dubbed "warrior women." It's like we're all part of a club. It's not a club anyone WANTS to be in, but you find yourself a member whether you like it or not. And it makes you stronger, but it also brings out your vulnerable side.

It's a club that welcomes new members with open arms. We cry together when someone is going through something hard. We hug to show our support of one another. We talk about mickey buttons and seizure medications. And we rejoice with one another when one of our children does something seemingly small, because we understand just how big it is. And when somebody new joins us, we never judge, we never turn a cold shoulder, we do our best to wrap our arms around this new member and help them navigate their way through "the system."

We are Warrior Women not because we want to be, but because we have to be. We feed our families special diets. We administer medications once, twice, three times a day. We take our children to therapy multiple times during the week. We sacrifice our sleep, we sacrifice our personal time, we sacrifice our pride to do what's best for our children. Some of us even have other children that we care for in addition to our little one with special needs. Most of us have strong men who hold us up when we feel the strength is gone. We all do whatever we have to, whatever we can, whatever is best for our families.

We fight, because we are warriors. We fight doctors who say our children are "disabled." We fight diagnoses that dictate more medication that we don't feel is necessary. We fight insurance companies who try to refuse payment for necessary equipment or services. We fight the government for support through programs like Long Term Care and public healthcare. We fight for what's best for our children because we love them more than anything in the world.

We're not that different from every other mom on the planet.

On this Mother's Day say thankyou to your mom, to a mom you know who works hard, to the mother of your children, to yourself. God made us strong so that we can raise our children, whether they are normal and healthy or have special needs. All mothers fight for what's best for their families. All mothers sacrifice so that their children can have what they need. All mothers are Warrior Women.

Happy Mother's Day 2011.

Wednesday, May 4, 2011

Update on Gastroenterology

For those of you who follow me on Facebook, you know I've had a HUGE struggle this last week making a decision about Sadie having an NG tube placed. I went back and forth multiple times a day even about should we do it, should we fight it, what are the advantages, what are the consequences, etc.

I had a good talk with a mom at Foundation for Blind Children (FBC) last Friday. Her daughter has a G-tube, which is the kind where they surgically attach a tube into the lining of a child's stomach. She showed me her daughters and explained it all to me (this is actually her second child to have one) and it really made it much less scary.

Many moms via this blog and on Facebook have told me that even though they were scared at first, or even though they hate that their child relies on his/her tube, they are really thankful for it. These moms all say that having the tube as a backup helps with peace of mind in knowing that their child is getting what they need, even if he/she can't take it orally. And many of them have noted that it is also a big stress reliever.

I posted on the P.O.P.S.I.C.L.E. parent forum. (P.O.P.S.I.C.L.E. is a local organization that deals solely with families who have children with eating issues. I joined a long time ago in anticipation of these kinds of issues, and I'm glad I did because now I have this resource at my fingertips) and got a lot of good advice from both sides of the coin.

And I had a good, long talk with Sadie's feeding therapist (whom she hasn't seen for about a month because she's had a family emergency and needed to be out of town). I told her my biggest concern is creating a problem where we don't currently have one. I'm afraid that, for Sadie, having something constantly in the back of her throat might make her reluctant to eat. But Nancy told me that most kids adapt really well to having that tube there and that she is not worried about Sadie having problems with it. Plus, she mentioned that if after a couple of weeks, we're seeing it be more of a problem than a solution, we can just remove it. She told me she thought it'd be a good idea, if the doctor recommended it, to place the tube. She is more afraid of drinking being so stressful for Sadie that she creates an emotional aversion to the whole process of putting anything in her mouth...I guess I never thought of it that way.

So, we went back to GI yesterday. And we saw the Nurse Practitioner, not the doctor (I think he was on vacation or something), and the same Nutritionist/Dietician was there. They were both very impressed with Sadie's progress in 12 days. She has gained over a pound and is doing really well. But, they both told me that in order for her to grow, they'd still like to see her drink more. They told me we could keep doing what we're doing, but they'd recommend the tube just to ease some of the stress on us all. This is kind of what we knew and expected them to say.

I told her that we are prepared to place a tube, but we want to make sure that most of what she eats and drinks is still being taken orally. The nurse and the nutritionist both said that is the best way to do things, and both really felt like this would be a very temporary thing (we feel that way too). So, when the tube is placed, they'll give us a plan. We'll have a goal of something like 4 ounces of liquid in 20 minutes and whatever she can't drink in that time, will go in through the tube. That way we are always trying by mouth first. And who knows, maybe we will hardly use the tube at all during the day, and it'll just be used at night to make sure she actually gets enough.

Sadie has to be admitted and we will plan to stay one or two nights in the hospital in order for all of this to happen. This is so they can place the tube, then keep us to make sure she is okay with it and that we're trained in how to use it and replace it and maintain it. They want to also do a swallow study while we're there. We won't probably do this for a couple of weeks because we're leaving town this weekend, then next week Sadie and I will be staying at Ryan House while Brian is out of town still. Then I have graduation and the events that come along with that. We'll be admitted May 22nd at the earliest.

Thank you for all your prayers. Please continue to pray. We are going to really start working on Sadie's ability to drink. And hopefully in a couple of months the tube can come out and she can do it all on her own!