Feeding tubing it at Ryan House

We're getting ready to take Sadie to Ryan House again.  We drop her off on Sunday and she's going to stay for the whole week!  Originally, we had plans to leave town on a little vacation, but that's not going to work out.  It's spring break for me, and I plan on enjoying the break with a little stay-cation at home...while someone else changes Sadie's diapers, tube feeds her, and entertains her all day.

I am one of those people who wants to always make it as easy as possible when preparing someone to be my substitute.  I was this way when I taught swimming lessons (my boss always praised my instructions when I had to have someone teach my class), I was this way with my classroom (preparing for a sub was always more work than just teaching my classes myself!), and I'm this way with Sadie going to Ryan House.  I mean, they're already dealing with children there who can't talk, eat, walk, etc...why make it harder by leaving them a guessing game???

The biggest thing is preparing them for Sadie's eating schedule.  Because Sadie is tube-fed, and because we no longer use the formula recommended by her doctor, it's important that I obsess about control every ounce of liquid and every calorie that goes into my little girl.  The doctor claims that that formula (you know, the one that is full of artificial sugars and chemical vitamins) is "complete nutrition" so I feel like it's up to me to prove that I can provide my child complete nutrition using real food...even if it goes through the tube.

Usually, we blend up some yummy stuff for Sadie and that lasts her a couple of days before we have to blend up some more stuff.  At home, we mix in some oral feedings too, but for Ryan House, I'm gonna make it as simple as possible and stick with the tube feeds only.  So, how do I make sure she has a week's worth of yummy food without using formula?

Freeze it.

This is the genius idea I came up with this week:

Make Sadie's food like I normally would (usually it's about 32 ounces), pour that blended goodness into a freezer bag with the zip lock top, then lay it flat in the freezer to harden.  Then we'll have 5 or 6 flat freezer bags full of food that they can just take out the night before, put in the fridge to defrost, then pour into her Nalgene we use to hold her tube food for the day.

I figured this was a better idea than sending fresh food and the blender over there!!!

And now I'm off to start blending!!

A day in the life of a tubie

Recently we started blenderizing Sadie's food. So, this might be a foreign vocabulary word to you... but honestly it makes total sense. We put a bunch of food in the blender and liquify it so that it can go through Sadie's tube. I've always thought that giving her formula was weird. But it's been reiterated that the formula is "complete nutrition" and I shouldn't deviate from it. Really? Define "complete" please?

Since Brian and I have really been trying to eat real foods (as opposed to processed foods) it's been killing me that we still give Sadie this chemically balanced nutrition through her tube.

Until now.

Sadie got a cold right before her birthday. Remember that craptastic birthday we celebrated? She's still struggling with the residual phlegm that a cold leaves behind. You know when you're feeling better, but you're still blowing your nose and coughing stuff up? The thing is, she has a hard time managing it. So, I did what my mom taught me, I took her off dairy...in efforts to decrease the mucus and help her breathe, help her sleep, keep her from gagging and puking, etc.

Which led us to blenderizing her food. (Because her formula is milk-based)

We don't have a Vitamix...yet. I have been saving up the money I make selling my Button Beauties, and we've been working on getting letters from the feeding therapist and Dr. Wendy so we can qualify for a medical discount with Vitamix. We're just about ready to order, and I'm so excited, because, even though our blender works okay for Sadie's formula, I know that the Vitamix will work so much better.

So, our routine has just changed...it's always changing. I am somewhat obsessed about Sadie's feeding schedule, I want to make sure she's getting enough calories as well as liquid. She can't, after all, just tell me when she's hungry. And I can't just give her a banana when she is. And if we're tube feeding she doesn't get a say in when she's "done"... it's a very delicate balance.

And I'm always pushing the line because I hate hooking her up to the pump at night. (which only happens if she hasn't had enough during the day)

In the mornings I blend. This morning I juiced some apples and carrots and then grabbed some citrus from outside and juiced that too. I found this awesome basic recipe for blenderizing for a 2-year old, and so I have it on a sticky note on my fridge. I have some pre-grinded grains (this morning I used barley and oats) and I added those to the juice. Then I added some almond milk, some coconut oil, and some salt. Pretty nutritious, right? The thing is, what I blend for her is not enough nutrition to sustain her for the day. I'm counting on her eating some food by mouth.

I usually have a schedule in my head when I'll feed Sadie throughout the day, depending on our schedule. It's usually about 150 mL (5 ounces) every 2 hours. And I adjust that accordingly. I write down when I feed her and how much and at the end of the day, if she needs more liquid, I hook her up at night. If she was on formula, I could add that at night to her feed for more calories, but right now our blender is unable to blend well enough to put her food through the pump...I'm hoping this changes when we get our Vitamix.

Here's what happened today:

7:30 - Meds and 25mL water (while she was still sleeping)

8:30 - 100mL blended formula (BF) and 50mL water (again while sleeping...thank you tubie!!)

10:45 - 60mL BF and 40mL water (in the car just before therapy)

1:00 - 100mL BF and 50mL water (just after therapy)

2:00 - benadryl and advil and 75mL water

2:15 - she puked EVERYTHING up ...without warning

3:00 - 60mL BF and 40mL water

5:00 - 60mL BF and 40mL water

6:15 - 4.5oz of pureed baby food (she ate this like a champ, she must have been hungry. I'm so thankful that she understands hunger and that eating takes care of that!)

7:00 - Meds and 50mL water

This is only 750mL of liquid (and probably less because she puked everything up), and definitely not enough calories. I didn't work that hard at keeping her hydrated because I knew she'd be hooked up to water tonight. She'll probably get just over 400mL of water overnight.

I'm constantly thinking about how much Sadie's last feed was, how long ago it was, and when I should give her the next one. Everytime I feed her I wonder if she's had enough, if she's had too much. I don't know if she's still hungry or if she's going to throw up because I over-filled her. It's much easier when she eats by mouth...but it takes 5 times as long and a LOT more patience!!

I'm so thankful for the tube in so many ways, Sadie is doing so well with it. But it definitely takes some getting used to scheduling-wise!! And blenderizing only adds to the confusion. But we're getting it, it's like a puzzle, a challenge, to everyday get enough calories and liquid in Sadie without any puke!!

Thanksgiving Day 7

Sadie's been having a really really really hard time teething these past few days. I'm sad for her. We keep thinking since it's so bad, we must be nearing the end. I mean, it's been bad the entire time, but it's been especially bad these last few days. She's in so much pain and she just can't get any relief.

Yesterday afternoon she fell asleep while Brian was holding her. Usually naps like this last 3-17 minutes. This one lasted for more than 30 before Brian decided he had to go to the bathroom too badly to continue sitting there. So, we woke her up. That's not a bad thing. She needed a clean diaper and to eat dinner and stuff. But once her diaper was changed, we set her in her chillout chair and the next time I looked at her, she was back asleep!!!

You have to understand that my child doesn't just fall asleep when she's tired. She's never been that kid who will sleep in the car, or close her eyes in the stroller, there usually has to be active putting-her-to-sleep. Sometimes that's rocking in the chillout chair, sometimes that's holding her and giving her the pacifier (which you have to hold in her mouth because she has a weak suck), and sometimes it means laying down with her (and holding the paci in her mouth) in bed until she's out. She never just falls asleep.

The other thing is that her ears are so super-sonic that the smallest noise or motion will wake her up. If she falls asleep while you're holding her, a deep breath might wake her up, or moving your leg. In her room, if one of us lays down with her at night, getting out of the bed without waking her is the hardest part. But last night, she sat in that chair for 3 hours while we talked, turned on a football game, cooked dinner, ate dinner, and did the dishes...and we purposefully were NOT quiet about any of that. She hardly stirred. She was so tired that I carried her into her room and, had I not had to change her diaper, she wouldn't have even woken up.

But she was sure wide awake this morning at 3:00am. And her teeth hurt.

Today I'm thankful for her feeding tube. If we didn't have that thing, last night would have been screamy and sad. But with the tube, we were able to hook her up, give her some formula, give her some water, GIVE HER HER MEDICINES, all while she sat hunched over in her chillout chair, dead asleep. And today, with her mouth so painful, she wouldn't eat. I didn't even try, there was too much screaming and I was too tired. I just used the tube.

Sometimes it feels so sad that she gets a lot of her nutrition through a tube, but on days like today, and I'm sure there will be days in the future, I am glad we have it so she can not only get the sleep she needs, but she can get the food she needs...and she can grow up to be big and strong!!

Sadie's new G-button

Monday morning, bright and early, our little family headed to Phoenix Children's Hospital (PCH) for our baby to undergo a Gastrostomy. This is the formal name for G-tube surgery. She's had her NG tube (in her nose) for 10 weeks and it's been a really good thing for her. Just days after getting her NG tube, she stopped screaming all day, started sleeping all day and napping, and was just all-around a happier kid. Plus, in that 10 weeks that she's had it, she's gone from barely 18lbs to over 23lbs!! But there are negatives that came with the NG tube as well...first of all, we had to tape it to her face, so it was unsightly. She was learning to grab it and pull (I think because she got immediate feedback when this happened), so we were having to replace it almost daily. Because it went in through her nose and down the back of her throat, she sneezed a lot, gagged when she ate, and if she threw up, it just made it worse because the tube would come up with all her food! Needless to say, we were ready for the G-tube.

To do the surgery, from what the doctor and nurses told me, they put a tube down her throat with a scope, then they go in through her belly button to inflate her stomach and stretch the skin, a little incision is made (it might be more like a piercing) and the tube is placed. On top of the tube, on the outside of her belly is a little valve called a "button" and underneath, on the inside of her tummy, is a balloon that inflates with water to hold the tube in place. The picture below is what one looks like "uninstalled" so you can get a better idea.

So, we went in early Monday morning, surgery was scheduled for 9:30, we had to check in at 7:30, Sadie had had only clear liquids since 12:30, and NOTHING since about 5:30...and we sat. And we waited. And we waited some more. I think we waited in Pre-Op for an hour and a half. Luckily we had the ipad, so Sadie was able to watch Sesame Street while we waited and that made her happy.

When the doctor finally came in, he asked if we had any questions, he signed a bunch of papers, and he marked on her belly where he thought was good placement and he initialed it to make it official.

The surgery took less than an hour. We walked out of Pre-Op right at 10:00 and were called back to recovery just before 11:00, and we noticed that they tend to wait 10-15 minutes once they've had the patients in recovery before they call the family. When we saw her she was still asleep, we peeked at her belly and were actually surprised at how small the button was. I don't know what Brian was expecting to see, but it was probably similar to what I thought: oozing bandages indicating that she'd be really sore for days. But it wasn't like that at all.


She sort of woke up a couple of times, just opened her eyes and looked around. We kissed her and talked to her and let her know we were there and we love her, and then she'd close her eyes again and go back to sleep. We had to sit there until they had a room for us, which didn't take too long and before we knew it, we were off to the 3rd floor.

I had asked that when we get to our room there be a bed there instead of a crib so that I can sleep with Sadie, but we had been quicker than the guy bringing the bed, so we transferred Sadie to the crib from the surgery bed for the time being. That really woke her up. Then like in 2 minutes the guy brought the bed so we had to switch her again. This time I had to hold her for a little longer while they rearranged things, and I think I irritated her button, because it was bleeding when we put her back down. And then the pain kicked in.

She was so sad. I don't think I've ever seen her in pain like that before. They had to give her Tylenol as a suppository because nothing was aloud in her stomach. She was receiving IV fluids to keep her hydrated and that was it. The Tylenol seemed to work and she slept some more throughout the day.

However, she didn't sleep much during the night. I think part of it was being in a different environment, but a lot of it was the little boy we were sharing a room with. He didn't feel well and screamed all night long. Plus then his machines would beep when he'd get upset. It was annoying and sad and exhausting. But Sadie hardly complained. She was calm and the next morning actually pretty happy.

The nurse told us we could try to feed her orally the next morning, but Sadie's stomach couldn't really handle it, so she threw it all up. Instead we started her on a slow drip through her new tube of just Pedialyte. She did better with that. And from that we graduated up to her regular Pediasure formula. Once she did that okay, they let us go.

We were home by 5:15 and Sadie and I were really glad to be here. While Daddy made dinner, we took a bath and washed the hospital stink off. We decided to have Sadie sleep with us because we didn't know how much maintenance she'd be in the night if she was in pain, or if her tummy didn't tolerate her night feed. Sadie and I went to bed around 8:00 and we both slept hard. I got up around 6:00, but it's 7:30 now and she's still sleeping. I'm really glad we didn't have to even give her Tylenol in the night or anything. She was awesome. And now begins our life as a tubie.

PS. that pretty thing around her tube is one of my homemade G-tube pads. It's to keep the gunk off and keep her skin dry, and it's MUCH prettier than gauze! You can learn more about them or how to order some at the top of the page by clicking on the different tabs.

Prayers for surgery

Sadie's G-tube surgery is tomorrow morning at 9:30. I am so excited that this is our last day with the NG tube. Yet, at the same time, it's a little scary that they'll be cutting my baby. I know it's a standard procedure and this doctor has done, like a million of these surgeries...but there are always risks.

So, please pray for Sadie that she would be safe and that the surgeon and his team would be guided by wisdom and have clear minds while operating on my child. Please also pray for Brian and I that we would be able to deal with Sadie once she comes out of the anesthesia. Sadie also doesn't deal well with pain, so I'm a little concerned with how the next week will go. And to add to that, school starts for me on Wednesday. Just pray pray pray.

Here's a cute picture of Sadie's belly...after tomorrow it'll never look like this again. (but doesn't it look so fat and healthy?)

Sadie's first Surgical Consult

Sadie and I had an appointment yesterday to see a surgeon about placing a G-tube. This would mean surgery to cut a hole in the lining of Sadie's stomach and placing a tube there for her to be fed through. It would replace the tube that is currently in her nose. Our reasons for wanting this so quickly are threefold:

1. Upon getting this tube, the results have been so immediate and so positive that we know continuing to feed her this way (while continuing to slowly learn to eat orally) is the best thing for all of us.

2. We have accidentally ripped the tube out of her nose and off of her face more than twice in the 3 weeks she's had it. Also, she has learned to find it and pull on it, which only makes her mad, but she isn't coordinated enough to figure out how to open her hand and let go!! It's kind of funny, and kind of sad.

3. By using a G-tube, as opposed to the NG tube we have now, we can start to blend real foods and give her those instead of just the Pediasure formula we are limited to now. The reason for this is that the G-tube will be larger in diameter and allow for thicker consistencies to be passed through.

Dr. Notrica was very nice and had a lot of positive things to say about Sadie. After a quick examination of her, he exclaimed that she looked "well taken care of." I chuckled and told him that's like what you say about an old car that you're looking to buy! He laughed and told me that they see a lot of children who come in and are dirty or rashy and you can tell their parents just don't take good care of them. He told me that it is obvious that Sadie is well-loved. He also went on to say that she is very pretty, which I always love hearing.

Dr. Notrica didn't seem to think it was a problem to get Sadie scheduled for surgery before we leave to go to Eugene. But, when we went to the scheduling desk, I was told we have to wait for insurance to give approval before we can schedule. Most of the time I am so thankful for insurance, but they are really teaching me patience!! So, now we wait for the call to say it's been approved, let's get her on the schedule!

Here is a video about the Mic-Key button like Sadie will be getting. The first part of this video is very good and shows exactly how it works. After that, you can stop watching.

I also think this mom does a really good job explaining and showing everything.

NG follow up

We saw Dr. Wendy yesterday to follow up on Sadie's NG tube placement. I love that we have such an awesome pediatrician because not ONCE did we see a G.I. doctor in the hospital, and our follow up isn't until July 13...almost 2 months after Sadie's admission (May 22). But our pediatrician, who is super busy and I couldn't schedule an appointment with, squeezed us in at 8:30 in the morning on a Monday.

She was pleased with everything I had to report. And Sadie weighs 20lbs 7oz!!! I told Dr. Wendy that Brian and I had discussed it and we feel like since this tube has been such a positive thing for Sadie that we should start talking about a G-tube. We feel like this is going to take more than a couple of months before Sadie will be able to eat enough to sustain her own growth, and rather than prolong the misery of throwing up her tube and having to re-insert it, or risk the danger of ripping it out everytime we pick her up or move her somewhere, we'd like to just have the surgery to place the G-tube. I am also very interested in getting Sadie nutrition from real foods, and not just pediasure, and to do that she needs the G-tube. Dr. Wendy said she completely agrees and she'll push the referral through right away.

We have a surgical consult scheduled for Friday morning of this week.

I will keep you posted as I have more information.