Once we started giving Sadie enough to eat and drink she turned into a different baby. She went back to sleeping 10-12 hours at night. She started taking 2+ hour naps (in her bed). She was happy. And the medicine for reflux was working too and she was able to play on the floor by herself, she even started rolling over this week and being happy on her tummy!
And I started feeling guilty.
You know how you watch those documentaries about under-developed countries and they show you pictures of orphanages full of malnourished children? That's how I imagined my baby must have looked. Had she been crying all day lately and waking up at night because we're starving her?! Because she's so dehydrated that she HURTS?! What a horrible mother I am!
But then my dad reminded me that she couldn't HANDLE more than we were giving her. That first day after we saw the doctor we tried to give her the amount of calories and liquid he recommended before we started medicine, just to establish a baseline. Sadie had a really hard time with it. She puked twice, and would never take more than 2 ounces of liquid at one time. (which meant we had to give her that much like every hour AT LEAST to get to 24 ounces) She couldn't do it. The next day, when we started medicines, all of the sudden she could handle much more. Now, after just 5 days, she is taking 4-5 ounces each time (and even sucking some of it out of the sippy!) with no problem...which makes it MUCH easier to get to 24+ ounces a day.
We see the doctor again in 4 days. I am hopeful that we won't be getting a tube this time...but it'll always be hanging over our heads, I think. So, keep praying for Sadie. She needs to be able to drink on her own, and tolerate more and more in one sitting. I will give you an update on Tuesday!
PS. we weighed her nakey the other night and she was actually OVER 20 lbs!! At the doctor's office last week she was barely over 18. Mind you it's a different scale, but still...I can't wait to see what she weighs when we go in next week!!
Saturday, April 23, 2011
I've had dreams before about Sadie starting to crawl or walk, but last night was my first dream where Sadie spoke.
It was a strange dream where Sadie's behavior got out of control, and we were on some kind of island with an invisible bridge over crystal clear water. The local people thought she was possessed by a demon and had created stories of her making a transformation to a dragon. But we called in a midwife - a male midwife, he was apparently our superhero.
This male midwife bravely followed me over the invisible bridge as we ran as fast as we could to save my baby. He even sacrificed his iphone when it fell in the water...he refused to go after it because it would waste precious time (and it was probably dead anyway, or he'd never be able to locate it). When we got to Sadie, he took over and I was forced to wait in a room with my friends.
This waiting room was strange, there was nothing but a bathtub, where I sat and waited, while my closest friends (and my REAL midwife) all sat with me. The floor was made of dark wood, and so were the bare walls. The light was dim, like the fading daylight outside, but we could feel the breeze and hear the water as we sat and waited in anticipation. We didn't say much, we waited in silence.
Finally our hero came in to tell us that he saved the day. He handed me my baby (as a 15-month-old) and she was calmed down and normal. I grabbed her and hugged her and said, "I love you," and she said "I love you, Mama." I remember looking at my friends with tears in my eyes and saying, "that's the first time she's even spoken! You guys are my witnesses!"
Then the male midwife explained to us what happened. He said that he realized she needed a lasic procedure to unblock part of her brain that was effecting her vision. He showed us this video of how when Sadie's brain would try to send a signal somewhere it was blocked and basically spent the rest of it's energy ricocheting around in her brain and her eyes, making her scream and writhe in misery. In the video it looked like black smoke was filling her head, but by removing whatever was blocking this, the "smoke" was able to exit and she was able to process what she saw and felt normally.
And that's when I woke up.
Thursday, April 21, 2011
Today Sadie had an appointment with a doctor in Gastroenterology. The purpose was to find out how to get Sadie to eat more so that she can gain weight and maintain growth. We know right now that she's not getting enough to eat and drink, but we don't know why. Does she have reflux still? Has her past experience with reflux created an aversion to eating and drinking? Is she having trouble emptying her stomach, which is directly effecting her appetite because her tummy isn't empty? Or is it simply a mechanics problem where she just has such a hard time with the physical act of eating that she can't get enough in her to sustain growth?
We know it isn't the last one. Since Sadie has started feeding therapy, her eating has greatly improved! Just changing little things like oral stimulation before meals, leaving the spoon in her mouth longer so she has a chance to suck the food off herself, and thickening her foods have all helped SO MUCH! I no longer worry about screaming through meals or spitting everything out on me in disgust. She also seems to be making the connection between being hungry and eating to take care of that discomfort. This is huge for us! She's even started trying to grab the spoon as I put it into her mouth! It's like she wants to feed herself!
Two weeks ago, we stopped nursing. We had been tapering off for a while, and the two times she'd be nursing during the day I doubt she was really getting anything substantial. She'd nurse in the morning, which there was probably something there at that time, and she'd nurse in the afternoon to quell afternoon-meltdown. That was just I-need-mommy time. So, when the teething hit hard, she just started refusing to nurse, and I started refusing to fight her about it. Then she started doing such a good job with the sippy cup, that it wasn't a big deal. But that was only that week...she hasn't really wanted the sippy cup since. All the liquid we've been giving her has to be squirted from a syringe directly into her mouth. Which, as you can imagine, can be pretty unpleasant for everyone involved.
So, at our appointment today I had two goals. The first goal was to figure out why Sadie won't eat or drink more, and the second was how do we get her to? What we learned wasn't shocking, but it still hurt a little. Sadie is NOT getting enough to eat, but more importantly, she is NOT getting EVEN close to enough to drink. Let's put it this way; when the doctor told me she needed between 24-27 ounces of liquid a day, my jaw hit the floor and my eyes popped out of my head. Giving Sadie more than about 3 ounces at once (and that's pushing it) is flirting with puke, so HOW IN THE WORLD are we going to get 8 times that in one day?! She also needs to be eating between 800-850 calories a day...but we'll get to that.
Here are some things we came up with:
1. We're going to try a motility medicine that she will take 3 times a day, about a half hour before she eats. The purpose of this medicine is to encourage her digestive track to empty and give her tummy more room for food. The idea is that with an empty tummy, she'll have room to eat a lot more food in one sitting! This will definitely increase her calorie intake.
2. We're also going to put her back on reflux medicine. It's a different one this time, and something that might be better for a bigger body. Her reflux and puking has really improved a lot, but she still gets those juicy burps that you KNOW have to sting a little...and sometimes after she eats she still does a lot of arching and looking uncomfortable. So, hopefully we can help make her tummy feel better, and that will make her more eager to eat and more excited about it.
3. We're going to drown her in PediaSure (not really, but 24 ounces feels like it!). Not only will this provide her with nutritional supplements and basic fluids, but it will also give her a lot of extra calories. Because 24 ounces of PediaSure is like 720 calories, I doubt I'll be giving her all 24 ounces of liquid as PediaSure, but alternating it with milk, water, and juice. This will help get her to her daily calorie intake. (Side note: we've already tried experimenting with this. When we got home, I started giving her about an ounce of liquid every half hour. Just this afternoon and evening, Sadie drank 7 ounces. That's more than she sometimes gets all day. And she seemed to tolerate this pretty well, in addition to eating her regular meals)
4. We're going to continue to add oils and high calorie foods to her diet. The Nutritionist suggested that we shoot for 2 Tbs of oils in her foods throughout the day. That's almost 250 calories right there. Plus if we can get her to eat more in quantity, as well as drink more PediaSure, we should have no problem reaching 850 calories a day. We can do this!
In a little less than 2 weeks we will go back to visit the doctor again (although he won't be there...vacation maybe? But we'll see the Nutritionist and the Nurse Practitioner) to weigh in, see how the meds are going, and possibly discuss a NG tube (this is the kind of tube that Sadie had when she first came home from the NICU, it's the kind that goes in her nose down to her stomach). The idea of the NG tube would be to supplement her normal daily intake. What would happen is that we would feed her and give her liquids normally throughout the day, then anything we weren't able to give her would go into a nightly drip administered through a pump. This would not only be a good way to supplement, but it might also be easier on her stomach since it'd be so slowly administered over a long period of time. Ideally, this would be a temporary solution while we continue to work on drinking out of the sippy cup and tolerating larger quantities of food and drink. I refuse to let this be a long term set up.
I have mixed feelings about all of this. Part of me feels like this is my burden to carry, so I'm the one (and Brian is the one) that should be responsible for getting the right amount of food and drink in Sadie's tummy each day. But the amount that she needs compared to what she's getting now is a little overwhelming and scary. Part of me also feels like having that NG tube would ease the burden some. But at the same time, we need to consider if the benefits of having the tube would outweigh the damages. And will it be a slippery slope toward a straight-G tube (that is surgically placed in the lining of her stomach)? Is that bad? I just don't know. I fight and fight and fight the tube...but if it's the best way to keep Sadie healthy and growing, is it such a bad thing? I think a lot of my fighting it has to do with that tiny little bit of denial I'm still holding onto that this is who my child is. This is the last thing, and I don't want to lose this fight because I've already won so many others (and I like the feeling of winning!)
Luckily, I have a lot of support. Many of the other parents of special needs kids that I know "virtually" have already given me good advice. And I know that I have a lot of experienced moms out there to talk to about the whole thing. In some ways it's so scary, but in some ways it sounds really nice to not have to always be looking at the clock and forcing food and drink down Sadie's throat, fighting her about it, risking puke (and all my hard work going to waste), getting frustrated and stressed out.
So, we'll see. We have 12 days. She'll start her medicines tomorrow night. Then the clock starts ticking. Stay tuned to see how this will play out.
Wednesday, April 20, 2011
We did it! In less than three weeks, our friends and family and perfect strangers have blessed us with $500, and this weekend we will be visiting the Apple Store to purchase Sadie an ipad.
We got donations from grandparents. We got donations from friends. We got donations from people we've never met. We even got one donation from Australia!! We got little donations. We got large donations. And we got one final donation from an anonymous person who gave us that last $35.
And for all of this we are greatful.
My heart is overwhelmed with how much people love Sadie and want everything that's best for her. I am amazed at the kindness of so many who didn't just look and pass by, but, with their hearts, gave
Thank you from the bottom of our hearts. We can't wait to show you videos and pictures of Sadie with her ipad and tell you stories of all her progress.
Monday, April 18, 2011
Once in a while something comes along and blows.my.mind. This weekend it was Ryan House.
We are part of the Hospice Outreach program since when we first brought Sadie home we had hospice services in place. And once a month or every other month (I can't keep track) a woman named Pam comes to visit us and check in on how we're all doing. She was the first one who mentioned Ryan House to me. It's a place where families with special needs children can leave their child overnight to be taken care so they can get a break, go on vacation, etc.
At the time I just dismissed the idea because Sadie wouldn't take a bottle and nursing meant she was attached to me pretty much all day and all night. But now that Sadie's older, and I've learned more about Ryan House, I finally agreed to go tour.
From the moment we walked in the door we felt welcome. We had a hard time finding the parking lot, and the lady who opened the door for us told us exactly what to do about parking next time. Then we met our "tour guide" who first showed us the "wall of fame." It was a bulletin board with pictures of many of the kids who had stayed there. We even recognized a few of them. Then a nurse came toward us with a little kid in a stroller that we know from Foundation for Blind Children, so that was fun to see someone we know there.
The first room we saw was a parent/family suite. The first time your child stays there they ask that parents/families also stay just so the staff can become familiar with your child's routines and likes and dislikes and so that you're there to answer any questions. But they encourage you to relax and play and not worry about taking care of your child...that's what they're for. And anytime Sadie goes to stay there, we can stay too if we want...or we can leave town for a long weekend to celebrate our anniversary! I'm thinking next time Brian goes out of town for a couple of days for work, Sadie and I are headed to Ryan House!
From there we got a look at the children's rooms, the bath-room (literally where they have this giant bathtub with jets and self-regulating temperature, it's awesome), the laundry room, and the computer lab, where we can skype with Sadie while we're away if we want!! They also have a sensory room full of fun toys and equipment that Sadie would love. There is a vibrating table, a wall full of what looks like a lava-lamp sort of, and this projector that projects an image onto the floor, but then you can interact with the images by stepping/rolling on the mat, or waving over it. There's a craft room, and a pool, and even a quiet living room where someone can go just to chill out and read (that's where I'd be going to do work while I'm there!). There is a little garden outdoors where you can sit and enjoy the weather (in the winter), and a playground with a structure that has wheelchair/stroller ramps and bumpies to roll over! This place was amazing.
Because we qualify for respite care at Ryan House, we get 28 nights a year to stay there for free. There is some paperwork, of course, to fill out before we come, but I definitely think we'll be staying there soon! Stay tuned for more news about this!
Saturday, April 16, 2011
There's a beautiful new song that they play on KLove now called Blessings. It's by someone names Laura Story, I guess she's new, I've never heard of her. But the song makes me cry everytime I hear it. The chorus says:
What if your blessings come through raindrops
What if your healing comes through tears
What if a thousand sleepless nights are what it takes to know you're near
What if trials of this life are your mercies in disguise
The whole song talks about how we pray for all these great things: wisdom, God's mighty hand, goodness, for God to be near, for blessings...but when we experience pain we cry out for God to come take it from us. And when we suffer, we beg for God's mercies. But what if our hurt and disappointment are actually answers to the things we prayed for, they just look different than what we expected.
I don't think God wants us to suffer, but I think suffering is part of this world we live in. And I think suffering is necessary so that we can remember that we need God. So that we can remember how good God is even when everything around us sucks. And so that we can remember that God's promise is that someday all our suffering and heartache and pain will end.
I think it's important to recognize our suffering, but I don't think it's healthy to dwell on it. I know someone who has had a lot of horrible things happen to her (and she's not that old), but it seems like she's always talking about and dwelling on and remembering these hard times instead of rejoicing in all the blessings she has right in front of her on a daily basis; 2 beautiful children, a husband who loves her, etc.
That's why we call this blog "Beck Family BLESSINGS." Because even though Sadie is the worst thing that ever happened to us...she's also the best thing that ever happened to us. Instead of everyday thinking about and dwelling on that horrible night she was born and those nights of sobbing with Brian while Sadie slept in the NICU, I look at her and I see the cutest baby ever. I kiss her when she wakes up in the morning, and when she goes to bed at night...and, let's face it, all day in between! When I look at her I see a miracle, not a tragedy.
I guess that's why the song makes me cry. Because I get it. My blessings might come through all the generous people donating to help Sadie get an ipad. But my blessings also come through staying up until 4:00am with a teething baby who can't sleep because she hurts too badly. And my blessings might come in that cute smile that looks at me so happily every morning. But my blessings are really through knowing that that cute smile may not have ever happened. And my blessings are that Sadie can breath and doesn't have a feeding tube and is using her vision more and more daily. And the trials of this life, they really are God's mercies in disguise.
Wednesday, April 13, 2011
It finally happened. Sadie's front teeth broke the surface. We have ALL been working hard for those teeth, but Sadie's been working the hardest! I just hope that we don't have to suffer 3 months of hell for every.little.tooth. to pop through! What do they say? It's always darkest before the dawn? It was darkest this weekend. Saturday Sadie wouldn't suck. And she doesn't know how to go to sleep unless she's sucking (yes, we know, we've created a monster), so guess what happened? She didn't sleep. She finally cried herself out and took a short nap in the afternoon. She woke up around 3:30 and here's the kicker...she didn't go back to sleep until after 3:30 in the morning! It was horrible. And exhausting. Today has been similar. We went to PT and Sadie screamed and screamed and screamed. We didn't even get to have PT. I was so embarrassed I left in tears. Later this afternoon, I was rubbing her gums where I had felt something this morning. Then I looked and saw something. It's a tooth!! Now I'm dancing a jig. I know, that second one still has to come through, so we're not out of the woods yet (not to mention this is only her THIRD tooth and she has a LOT more to come...ugh), but I feel like I can breathe a sigh of relief. Now I just hope she doesn't end up with a feeding tube, or I'll feel like all this hard work was for nothing!! PS. pictures to come...
Thursday, April 7, 2011
Usually, when people ask me how I'm doing, I can muster up an "I'm okay" even if I'm VERY borderline okay. But Monday morning my mom asked me how my day was going and I flat out said, "bad." If Sadie doesn't get teeth soon we all might have to be committed to the crazy house for lack of sleep! This is SO HARD! Sunday night was the worst. She screamed and screamed and screamed until like 1:30 in the morning when we finally pulled out the "real" drugs and put her out of her misery. I don't know how other parents do it without the drugs (for the babies, I mean)...or maybe it's not this bad if your kid is normal? I don't know. All I know is that SHE (we) needed the sleep, and giving her the drugs was the only way she was going to get it. I had an appt at the gym Monday morning to workout with the trainer (which is where I was going when I was talking to my mom), and, like usual, when I am super tired, I get super emotional...so I cried practically the whole way there. WHAT A WUSS!!!! Those of you who think I'm superwoman might change your minds if you knew how often I break down and lose it! But I sucked it up and walked into that gym with my head held high and my eyes dry...and by the time I left I was laughing and smiling. As the week has gone on, it hasn't really gotten any better. Although, now I'm administering drugs BEFORE 1:30 (waaaaaay before), so that we all can have a little more peace at night. Not to mention what the neighbors must be thinking! Brian left town Wednesday morning and won't be back until Friday, so for three days and two nights I'm pretty much on my own. But one of these days those teeth are going to come through, and Sadie's going to look like such a big girl and she's going to learn to bite and eat crackers and things. And I'm so excited about that. The other day my neighbor came over to visit. She has an almost 3 year old and an almost 1 year old and she is having a really hard time with both of them. Her older girl beats up on the younger one, and the younger one screams and cries all day (she's a feisty one!), and my friend is feeling like I've felt so. many. times...crazy house, sign me up!! But as we got to talking, she said, "I really just need to remember my blessings. There are so many people who would be VERY GREATFUL to be living my life, and I need to remember that." And that's when I told her (and she KNOWS how hard it's been for me this last year) that when I meet new people or first tell people about Sadie, I always always always focus on the positive. I tell them she's alive, and that she learned how to nurse, and now she's eating solid foods! I tell them that she is so pretty and is doing so well sleeping in her own bed in her own room. I talk about how she's working so hard to sit up and wants so badly to use her hands to put things in her mouth. And that we're raising money to get her an ipad so she can hopefully start communicating with us! I never focus on that she screams all day and won't ride in the car, and pukes if we leave her on the floor for too long. And I do this because it reminds ME of how fortunate we are, how blessed we are, how lucky we are. So, maybe once in a while it's so bad that when my mom asks how my day is going I tell her the truth. But usually, for other people, I can muster up the good in our day, because I need to remember that it's not all that bad. No matter how hard it is, we are blessed.
Sunday, April 3, 2011
I joined a gym a couple of weeks ago...3, actually. And since I did this, my fitness goals have blossomed. All I wanted to do was swim...but then I met with a trainer and she asked me what my fitness goals are. I had to think a lot about that, but I realized that I really just want to be in better shape so that when I get pregnant again it doesn't wreck my body like this time did! Then this morning I took a cardio test. This test required me to wear this oxygen mask so that it could measure how effectively I use oxygen while I'm running. I also wore a heart rate monitor. I started out walking, then the trainer slowly increased the speed until I was at a comfortable running pace. Then she started increasing the incline. She had me to until I couldn't go any longer and then she slowed it back down to walk and measured my recovery heartrate. What did I learn? I learned that my body is pretty inefficient when running. I mostly burn carbs/sugar, what I want is to burn fat. On this graph I want my black line to be REALLY high in Zone 1...that's the zone where my heartrate is lowest. In zone 1, I should be burning the most fat. And this line should be as high as possible for as long as possible. As I increase zones, my heartrate increases and my body naturally goes from burning fat to burning carbs/sugars. the goal is to burn fats though at higher heartrates. As you can see, I don't even start out burning much fat! What do I do about it? I have started a 12 week cardio plan. I will be emailed customized workouts according to these test results that are designed to teach my body to be more efficient and learn to burn more fat, especially at a higher heartrate. At the end of the 12 weeks, I take the cardio test again with the mask and all and then we'll compare my results. Stay tuned for that, it should be exciting! I'm hoping that not only does this help me to lose a little weight and get a little more fit, but that I am able to increase my running speed, as well as how long I can go before getting tired. If I can keep this kind of training up, I should be ready for next year's half marathon! This information has given me a renewed energy for running. I was stuck in a rut and had pretty much stopped, but with the possibility of improving my body and my efficiency, I am ready to keep going!