Sadie's Feeding Therapy

It seems like since we got the swallow test report, feeding therapy has been a little sketchy.  It sucks because I feed Sadie all day and she does great, but one stupid test, with someone else feeding her, in an unfamiliar environment, and now our feeding therapist is nervous.  I understand that, she doesn't want to be responsible for hurting Sadie.  But it's also frustrating, because I don't think that test was accurate.

Sadie getting her teeth brushed by Kim for feeding therapy

Today we talked about different approaches and what could have made that test so inaccurate.

1. Sadie does so much better if we stimulate her mouth first with her toothbrush, a Nuk toy, a little vibrator, etc.  Nobody did that for the test

2. Sadie doesn't eat well first thing in the morning.  The test was the first thing she had in her mouth or tummy since the night before.  (Next time, I'm gonna stick to our regular schedule instead of "starving" her before the test...if you want her to eat normally, why would you change everything and still expect her to do so???)

3. Someone she doesn't know was feeding her.  Kim, our feeding therapist, said she will cancel other therapies if she has to to be there this time.

4. She was eating something she'd never had before.  Granted, they make it "taste good"...but Sadie's no dummy, she knew it was unfamiliar.  Next time the barium should be mixed into something we have given Sadie before and we know she likes.

5. It was an unfamiliar environment.  I don't think there's anything we can do about this, except try to make everything else as familiar as possible so as to minimize that she's got a big machine next to her.  I think her surroundings were distracting and she forgot to concentrate on her swallowing.

Sadie LIKES to eat.  And she does really well with it.  Lately she's been eating twice as much as she usually does in one sitting!!  We're hardly making her any tube food at all (plus it still makes me want to yak just thinking about it!).  And when she eats by mouth we see less reflux, we see more poop, she tells us when she's done or if she wants more, and she gets practice!!

Sadie eating some yummy food in therapy

So, we continue with feeding therapy, and I think I'm going to ask Dr. Wendy to recommend us for another swallow test in 3 months, instead of waiting a year.  I think we did it all wrong and Sadie deserves a second chance.  But at the same time, I also think that those tests don't really mean a lot.  Like Kim said, "they give us a snapshot of time...we know that Sadie eats this way at that time of day in that environment.  That's not conclusive of her eating/swallowing abilities."

In the meantime, we continue at home as if the test never happened, and we wait for another one...

Any other advice for making Sadie's next swallow study more successful???

Here's a cute video of Kim brushing Sadie's teeth!

Sadie's second swallow study

This morning we had a swallow study. Our last swallow study was when we were in the hospital when Sadie got her NG tube last May. So, it's almost been a year.

We did a lot of waiting, and Sadie was so good. I was really proud of her. I scheduled it first thing in the morning because I figured it'd be easier to not feed her if she was sleeping! So, I didn't even wake her up, I just pulled her out of bed and put her in the car. We worried about getting dressed and stuff once we got there and checked in! (we had plenty of time)

All dressed up and ready to wait!

By the time they started the test, she had been awake for an hour and a half, and was plenty hungry. That just made the test go better.

Getting all set to swallow some barium!

I wasn't able to participate because I'm pregnant and it's all done with X-Ray, so I stood behind a wall and watched through a window. The cool part about doing that was that there was a computer monitor right in front of me with clear video of her swallowing. Last time we did this, I was feeding her and didn't get to see the video at all as it was behind me, so I was pretty excited about this.

My view from behind the prego wall.

They started with honey-thickness liquid. Sadie swallowed that perfectly.

Then they tried nectar-thickness liquid (which is a little thinner) and the first 2 or 3 swallows went down just fine, but by the third or fourth she had silently aspirated a tiny bit. Mind you, what I was told was that it went down just fine, then at the very end she aspirated, so it was likely from fatigue.

They knew they couldn't go any thinner, so they did the pudding consistency, which is basically like giving her a puree with a spoon. She also aspirated a little bit of this. Again, because her muscles were probably fatigued.

I took a picture of the computer monitor showing the test. It's kind of hard to tell what you're looking at, but that little black line I'm pointing to is the liquid she's swallowing. (I was told I couldn't take video of the monitor, but I should have anyway!!)

Finally, they tried giving her a cookie. She struggled with the cookie. I think it was just a little bit more dense than those puffs we give her and she doesn't quite get yet the whole chewing thing. I mean, she can do it if it's on accident, but I don't think she understands moving the food to her teeth for the purpose of chewing. They ended up having to give her a little liquid to help her swallow, and when that wasn't entirely successful, they swabbed her mouth with a cold lemon swab to encourage saliva and swallowing. Then she finally got it down.

So, what does all this mean? Nothing. It basically means we're right where we were a year ago. I don't know if that's good or bad, but I was hoping at least for some progress. I want Sadie to be independent of this tube someday, but she has to get better at swallowing first...a lot better!

The lady who did the test told me that if she were looking just at these test results she'd tell me that it's not safe to give Sadie any food by mouth. (sad) But looking at the whole child and the situation, knowing that we give her LOTS of food by mouth, she said she'd recommend doing just what we're doing. Professionally, she recommended giving 4 or 5 bites multiple times a day, and starting with tiny 1mL amounts of honey-thickness liquids multiple times a day. After all, she can't get better without any practice.

She also mentioned that it's a big deal that Sadie's really never been sick, and that she's never had pneumonia. She said some kids just have strong lungs, and some kids aspirate once and they're in the hospital. I guess we just got lucky on that one!

So that's that. Not really that exciting, but at least we know. She didn't recommend another swallow study for probably a year because based on Sadie's lack of progress in this last year, she doesn't anticipate fast progress really over the next. (sad again)

Practice practice practice Sadie!!

Feeding/Speech Therapy

Today's 365 picture is actually from yesterday, this Sadie playing with her ipad during therapy.

Sadie hasn't seen Nancy for probably a month. All our therapies were sorta put on hold while we waited for surgery to be scheduled, went on vacation, and etc etc etc. So, you can imagine Nancy's surprise when last time she saw Sadie she screamed through barely an ounce of solid food, and yesterday Sadie plowed through 4+ ounces (after eating 3+ ounces just a couple of hours before!!)

After eating, they often spend time playing with the ipad; practicing reaching and touching, and working on different sounds and words. Sadie is nowhere near talking, but she is so expressive with her oohs and ahhs and yayas, that I feel like working with her now will NOT be in vain. She may not be a good talker, but I think she WANTS to do it!!

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.

Sadie's introduction to Gastroenterology

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.

Sadie's feeding therapy

Sadie has been doing feeding therapy/speech therapy for a couple of months now. She's been working on becoming aware of her mouth and how to use it more efficiently. So, I use that Nuk brush with her in the mornings before breakfast, like you saw in the video of her eating. And when the therapist comes she does a lot of the same stuff, but with different tools; like a little vibrator, or a vibrating spoon, or a little sponge. Today for therapy, Nancy asked Sadie to choose if she wanted her to use the Nuk brush or the green sponge. I had no idea how Sadie would react to a choice like that, since she has a really hard time using her arms. She can't reach out and grab her choice. But you'll notice in the video, Sadie gets her right hand going, clearly choosing the sponge (maybe she could see it better, maybe she knew the difference, I don't know), I know this was a deliberate choice because Sadie almost always (90% of the time) tries to reach with her left hand. This made me start thinking about how we treat Sadie. I always say I think she's smarter than we give her credit for. She's trapped in this deficient body, but her mind is ahead of wat she can do physically. Yet, all day everythin she does, she eats, she looks at is dictated for her. I think it's time we start having her make some of her own choices, like in this video. Maybe she will shock us with the choices she makes and we will learn some things we never had any idea about! The video shows therapy with the sponge, then with the Nuk brush, then you'll see Sadie make her choice.

Sadie's eating and gaining weight!

At Sadie's 12 month checkup, the doctor told me Sadie's too skinny. She had gone from a little chubbers, to skinny mini in about 6 months. At 6 months, she was just above the 50% in weight. At 9 months she had dropped to 25%, and by 12 months she was at zero. That's not good, doctors don't like to see that, especially in special needs children, ones who are already on the radar for feeding problems. At 9 months, when Sadie started dropping, Dr. Wendy called our state services coordinator and requested that we get the ball rolling on feeding therapy...we didn't actually see the feeding therapist until the week before Sadie's 12 month appointment.

As good as I know they are for babies/kids/people who really struggle or just can't eat, I am deathly afraid of a feeding tube. It would require surgery, and maintenance, and screaming, and it would break my heart a little. So when Dr. Wendy told me to come back in a month to weigh her, and if she hasn't gained she's going to send us to G.I., I freaked out. I know she didn't mean it to be, but to me it was a threat. A challenge not to go down the slippery slope toward G-tube.

It's hard work for Sadie to eat, definitely. And it's hard work, as well as a lesson in patience, for whoever is feeding her. But we tackled the problem head on, and immediately started feeding her 3 meals a day. And soon after that, we started keeping track by writing down what time she ate and what she ate each meal. We saw a pattern develop, she was eating at about the same times everyday. So we tried to stick to it. Then we started weighing her food and trying to get it up over a certain amount everyday. That prompted the addition of a meal, so now she's up to 4 meals a day. Then we moved to counting calories, and now I'm even writing down when she nurses. This might seem like a lot of work, but it's a lot less work than what comes with a G-tube...and she's gained over a pound in the last month.

We have our weigh in appointment on March 8, and I plan on bringing our food log with us. I think Dr. Wendy will be happy that Sadie has gained weight. I mean, she actually has a fat little belly and her face is filling out and when you pick her up, she feels solid. I just really hope that as she grows bigger and bigger her eating skills also improve to fulfill her calorie needs. There still may be a G-tube in our future...but we're going to fight it as hard as we can for as long as we can.
Here's a little video of Sadie having her feeding therapy. It's meant to stimulate and wake up her mouth so that she is more aware of it and can use it more efficiently when eating. It actually works really well. You can see how it makes her yawn when we do it though! What a good little eater she is becoming! We are so proud of her!

P.O.P.S.I.C.L.E. center

P.O.P.S.I.C.L.E stands for Parent Organized Partnerships Supporting Infants and Children Learning to Eat, and it is my latest find in support groups for special needs families (website here). I scoured the Popsicle Center's website and learned so much about eating that I never even realized. We don't have anywhere near the eating/feeding issues many of these moms have (and I pray we never do), but I signed up for their forum because I think I may be able to learn a lot from other moms of children with disabilities effecting their eating.

Many of you know that when Sadie came home from the hospital she was tube fed. Every 3 hours we put the tube in her nose, fed it down to her stomach and then shot a little puff of air through it while listening with a stethoscope to make sure it got to her tummy. Most people just leave a tube like this in instead of re-inserting it every feed, but I didn't want that tube/tape messing up my baby's face. And I think it was better for us to do it this way because I was more motivated to get her to nurse since I hated that tube so much!

This is the night we left the hospital.

The day we pulled Sadie's breathing tube, we watched the nurse stick his finger way down Sadie's throat and she didn't even react. No gag AT ALL. That first night was rough because she wouldn't swallow even her own saliva and everytime the nurse came in to feed her, we also had to suction her. At that point there was talk of setting up suction in our home so we could continue the care. By the next night Sadie seemed to be swallowing on her own and no longer needed suctioning. We were told (and we're still being told) that babies with HIE often will aspirate and end up back in the hospital with pneumonia, so we needed to really be listening to her lungs to make sure they were clear. They have been, and continue to be, clear, and for that we are truly thankful.

I so badly wanted to nurse my baby. I knew breastmilk was an important key to Sadie's health and was convinced that it was even helping her heal, but pumping was getting old, and I had looked forward to nursing so badly that I was heartbroken over the fact that my baby couldn't suck. I started putting the pacifier in her mouth and she would give it a few sucks amidst the biting and chewing on it, so I thought, "what if I just try to nurse her, I wonder what would happen?" Our hospice nurse had advised me against it because Sadie hadn't had a suck/swallow test...and again, she was worried about aspiration.

Of course I had no idea what I was doing, but sought some advice from people I knew who successfully breastfed their babies, and one night in the tub, with Brian there to encourage me, I got Sadie to suck!! I still remember being so happy I cried!! Then I immediately texted everyone I know to tell them the good news!

Sadie learning how to breastfeed.

From that point on we did more and more nursing until we completely stopped using the tube (I think it's somewhere under the bed with kitty teeth marks on it now...we should give it a proper burial). I didn't tell the nurse we had started breastfeeding until we were only using the tube for medicine, and by then she had checked Sadie's lungs a number of times and never heard any fluid (I was so nervous each time she would listen!). But Sadie wouldn't ever take a bottle. We tried and tried, but the same as with the pacifier...more biting and chewing than sucking. Oh well, she's nursing, right?

Now I'm starting to get a little concerned about Sadie not taking a bottle or a pacifier because I'm afraid she has an aversion to anything in her mouth that isn't boob and that when it's time to learn to drink from a sippy cup, or eat from a spoon we might run into problems. It's also hard for me that she won't take a bottle because I don't ever get a break. It might be easier if she didn't scream in the car because then I could go run my errands. As it is now, Brian gives me a couple hours on the weekends to do what I need to do, but if Sadie gets hungry, Brian has to use a syringe or a dropper to feed her. I'm sure it'd be much more satisfying for her to suck, even on a bottle.

Anyway, Sadie starts feeding therapy next week. We have an evaluation on Tuesday and I'm excited to see what the therapist does. Maybe there's a silly trick to get her to take a bottle, maybe it'll be a long process to overcome an aversion to anything in her mouth. I am still going to save the P.O.P.S.I.C.L.E. website...if for nothing else but to be reminded of how lucky we are.