Ellie's G-tube

The more I talk to people about Ellie the more I realize that a lot of our friends and family don't really understand trachs, g-tubes, and chromosomes and the role all of those things play in Ellie's life. I can tell that some people are uncomfortable being around Ellie because these things can be kind of intimidating when you don't understand them.  For the record I am not offended by any questions you might have and I never mind answering them. In an attempt to help others better understand and not be scared of Ellie I am trying to do a few informative posts that explain some of her extra accessories.

Ellie has a g-tube (short for gastrostomy tube) which is a tube that is inserted through the abdomen straight into the stomach. This tube allows us to deliver food and medication straight into Ellie's stomach.

This was necessary because from the time she was born, Ellie struggled with the coordination of swallowing and was continually aspirating (milk was going into her lungs when she swallowed). We thickened her milk, tried every kind of slow flow nipple we could find, and worked with an occupational therapist, but nothing helped. Her continual aspirating was injuring her lungs and was a huge reason why we weren't able to wean her off her oxygen. I fought so hard for the first 2 months of Ellie's life to avoid a feeding tube. Truthfully, I let her struggle for way too long.  Part of me was in denial of how bad the problem really was, the other part of me knew she needed a feeding tube but was so terrified of the long term effects on her being able to eat normally that I couldn't accept it. It wasn't until she was in the hospital with her first surgery that the medical staff saw her eating and helped me come to terms with how bad things really were. At first there was discussion of whether an NG tube (tube that goes in the nose, down the throat, and into the stomach), which could be used for several months, would be sufficient. But after a lot of thought and evaluation by the speech therapist and doctors they felt that realistically Ellie was going to need something long term and so a permanent g-tube was more appropriate. 
So on July 29th Ellie had surgery to place what is commonly referred to as a "button". It is a low profile device meaning it sits close to her tummy and we can disconnect the tubing from it and button it up. During this surgery the stomach is physically moved and stitched to the side of the abdomen wall and an opening is made for the tube to pass through. At he end of the tube is a small balloon that is filled with 4 ml of water. Once the water is injected in the balloon, the balloon sits in the stomach and prevents the tube from coming out.

 We are able to change out the g-tube at home routinely (every 4-6 months) as well as in an emergency if it comes out for any reason.

Ellie's Button

Honestly, her g-tube placement and Nissen Fundoplication surgery was the hardest for Ellie to recover from. Her g-tube site was extremely painful for more than a month after surgery. She would scream if we touched anywhere near it and forget about wearing pants or doing tummy time. It's easy to see why it was so painful when you look at what they did to her poor little stomach. Below is a diagram of a Nissen Fundoplication. They take the top part of the stomach and wrap it around the esophagus. As the stomach fills up this little pouch of stomach constricts the esophagus preventing anything from refluxing back up the esophagus.

We had known since Ellie was weeks old she had significant reflux. We later found out that reflux exacerbates laryngomalacia and that she was also aspirating the stomach contents that were refluxing up, making a Nissen necessary along with the g-tube. This was all done laproscopically so she just has 5 little scars across her belly including one in her belly button and her g-tube site (see red dots on picture of button above). The surgeon told us that Ellie had an extremely small stomach and it took almost the whole thing just to wrap it around her esophagus leaving just enough for him to insert the g-tube. So her little stomach was stretched and pulled and stitched and punctured. Like I said, I understand why it hurt so bad.
Now that it has healed, Ellie's g-tube is pretty low maintenance. We do g-tube care once a day where we clean around the tube with Q-tips, soap, and water. This keeps the skin clean and dry and prevents the skin from getting irritated (a big problem with Ellie's sensitive skin). The only other real maintenance is venting her g-tube. Not only does the Nissen prevent food from going up the esophagus, it also prevents air from leaving the stomach, aka burping. So when Ellie gets bubbles in her tummy she has no way to get rid of them, and if you've ever seen a baby who needs to be burped you know that it makes for one angry baby. So we hook her g-tube up to an open syringe (to catch any stomach contents that make their way out) and let the bubbles escape that way. We usually have to vent her 3-5 times a day.

Venting Ellie's g-tube

Because Ellie's stomach is so small she is not able to tolerate a bolus feed. A bolus feed is when you run in several ounces of formula over a short amount of time as if she were drinking a bottle. Instead she requires continuous feeds where we use a feeding pump to run in her formula at a slow rate throughout the day. We are slowly working on increasing the rate of her feeds, but so far she hasn't tolerated it very well. Anything above 40 ml/hr (30 ml = 1 ounce) and she becomes a hysterical mess. So for now we are happy to tote her little feeding backpack around the house with us. Since she is on continuous feeds we leave the extension tubing hooked into the button most of the time. We tape down the button and tubing so that it doesn't wiggle around because that can be uncomfortable and causes granulation tissue which is very painful.
The most difficult part of always having her hooked up to her feeds is finding functional clothes for her to wear. In the summer it was easiest to have her just wear onesies, but now that it has gotten cold we've had to get a little more creative. Pants are hard because they rub on and irritate her g-tube site, and the tubing gets bent and kinked when we try to twist and turn it out of the pants. My aunt and Grandma gave Ellie a few little sleepers and rompers that are specially made for kids that have g-tubes. They are ideal for nights because they have little pockets and snaps in all the right places and allow me to access her tube without having to wake her. Thanks Marilyn and Grandma! The other solutions we have found are outfits that snap all the way up the front so we can sneak the tube out between snaps.

Ellie at 4 months. This sleeper  is almost too short on her now because she's getting so long.

 And baby leg warmers to keep her legs warm with onesies.

It's a shame because I have so many cute clothes from when Brynn was a baby that Ellie will never wear because they are simply not functional.
I don't think I would go as far as to say I love her feeding tube, but I am glad she has it. When she entered the hospital at 2 months old she weighed less than 8 lbs. She wasn't even on the growth chart. At her 4 month check up she weighed 10 lbs 6 oz which put her in the 0.7%! That's a percentile we haven't seen! And there are definitely some benefits to her having a feeding tube. I don't have to plan my day around her feeding schedule. No late night feedings to endure. Ellie is a champion napper because her naps are never cut short when it's time for her to eat again. I don't have to deal with Miles climbing all over me while I'm trying to nurse a baby. The insurance company pays for her formula. I don't have to worry about her spitting out all of her medications. These are just some of the perks of a feeding tube.
There are also some potential problems that can result from Ellie being tube fed. The biggest of those is she is at risk for developing an oral aversion. Just her being g-tube dependent and not being able to eat anything orally from such a young age puts her at huge risk for an oral aversion, but add to that the fact that it is common for kids with 4p to have sensory processing disorders and many of them struggle with oral aversions and once again, I feel like the odds are stacked against Ellie. But then I have to remember it's Ellie we are talking about and she is constantly proving us wrong. Just in the last month we have been able to take huge steps in the right direction. After a repeat swallow evaluation our occupational therapist was given the green light to start giving Ellie some tastes of food. We started by dipping a finger in pureed bananas and letting her suck it off. This girl definitely has her Mama's love for food. One taste and she couldn't get enough of those bananas. After a couple weeks of her doing great with banana tasting she had a FEES (a different kind of swallow study) with the ENT and speech therapist. They were blown away by how well she was doing and cleared her to start practicing with nectar thick consistency bottles. So now we give her two bottles a day where we let her practice sucking and swallowing for 5-10 minutes. We don't focus on the volume she takes because we are not doing it for nutrition, we are just doing it for practice and for her to have a positive experience with food. The first few times we did it she hardly got anything out of the bottle because she wasn't able to create much suction and breathing while eating was tricky for her with her trach. But she is getting better and better every day and now I have to stop her at 2 ounces so she doesn't give herself a tummy ache.

 Next week we are going to start introducing her to different baby foods during her Occupational Therapy. Starting baby food at 6 month just like any other baby....way to go Ellie!

Thanks Brynn for playing photographer and snapping this picture of me and my babe.

That concludes what is officially the longest and most boring post I've ever written.

Halloween

Halloween really couldn't have come at a better time for us this year. Mason's latest obsession turned to zombies and mummies right before the Halloween season started so we had a fun Halloween season full of  reading books, playing games, and making projects that all centered around these spooky creatures. After going back and forth on which of these he wanted to be for Halloween he finally settled on a mummy. As soon as he slipped his costume on Mason was in full character.

Brynn had known for months she wanted to be Cinderella.

She made one beautiful princess!

I decided Miles would be a monkey for Halloween since we already had the costume from when Mason was his age. The only problem is Miles absolutely would not, under any circumstance, let us put the costume on him. When we asked him what he wanted to be for Halloween his response was one of two things: mailman or big truck. Let's be honest. He had no idea what we were asking him he was just naming a few of his favorite things. I went ahead and threw together this big truck anyway and he agreed to wear it...at least long enough for a pictures.

Ellie was an adorable little mouse.

Cinderella and her little mouse friend.

Ellie has started doing this where every time she smiles she sticks her tongue way out. I absolutely love it!

We had amazing fall weather the week before Halloween which allowed us to set up pumpkin carving stations outside which was really fun. 

As always I manned the pumpkin cleaning station since Scott can't stand scrapping pumpkin guts. Mason dove right in this year and cleaned his own pumpkin entirely on his own.

Scott then headed up the design and carving station. Per the kiddos request we stuck with our tradition of carving their pumpkins to match their costume.

Sorry for the picture overload, but it was impossible to get a picture of all the kids together with their pumpkins.

Mummies

Brynn's was Cinderella's pumpkin carriage.

Remember how Miles was supposed to be a monkey? We couldn't keep him away from the pumpkins all month, but when we wanted him to sit next to one for a picture he all of the sudden wanted nothing to do with it. But it was nothing that couldn't be handled with a sucker bribe.

Ellie loved her Mouse pumpkin.

There's that tongue again.

While we had fun diving into the Halloween spirit at home, we kept things pretty simple as far as Halloween parties were concerned. We still keep pretty well to ourselves these days and so something has to be really enticing to pull us out of our little bubble. The only thing that did that this year was Grandma Nancy's annual Halloween bash. It was full of all it's usual fun, the only thing that would have made it better is if Rachel Faye, Andrew, and Kendall were there.

Miles would only sit next to his big truck for the group picture, but was happy to put it on to go outside with Grandpa's big white truck, the inspiration for his costume.

In the middle of the party Mason disappeared. While checking in one of the back rooms I walked into quite the theatrical performance of Mason the Mummy coming alive out of his "coffin". After his scary performance he posed himself like this and asked me to take a picture. I actually think this is a really creepy picture. This kid is one of a kind.

Until next year, Happy Halloween

Lately

It's been too long since I did a post about the cute and random things the kiddos have been up to. Believe it or not, that is what this blog was once dedicated to. So here are a few stories about the kiddos lately.

Our annual Fall picture in the leaves in our yard.

About a month ago Brynn and Mason both had the opportunity to earn a backyard movie night. They were each given 5 stars on Monday but if they were disrespectful (a big issue in our house with a certain someone these days) they would loose a star. As long as they had any stars remaining on Friday they could invite a friend over to have a late night and watch a movie in the backyard after dark. Long story short, Brynn earned it and Mason didn't. When Friday rolled around sweet Brynn approached me and asked if she could invite Mason to be her friend because she didn't want him to feel bad. So Mason had a great time being Brynn's guest and watching Sleeping Beauty in the backyard.

I laugh to think that just a few months ago I was concerned about Miles' speech.  If he was behind at all he has definitely made up for it, and then some. The boy just walks around the house talking and we can actually understand most of what he says now. The thing I love more than the actual words he says is how he says them. He talks with so much enthusiasm and great facial expressions. A few of my favorite things he says include:
'No Waaay!!' when he is excited about something.
"Oh Noooo!" when he does something wrong.
His favorite adjective is Big. 'Big Truck' and 'Big Shoes' are a favorite conversation point of his.
'No-nurt' is what he calls yogurt. There is just something about the way he says it that kills me.
He says "noooo" in a sweet voice with a scrunched up face and shaking his head like, 'sorry, but no'.
When Mason and Brynn are at school he walks around saying, "May, soowl. Bri, soowl" He puckers his lips and puts so much effort into saying school.
He sings the ABC song really well, but always finishes with "...now I know my EFGs..."
Still calls his blanket his "uh oh".
He's turned into a Baby Einstein monster and whenever he is bored, or sad, or tired he whines for "Bay Einstein" over and over and over.

Ellie had repeatedly rolled from her stomach to her back when she was only 6 weeks old, but after being on her back in the hospital for a month followed by over a month of not being able to do tummy time due to her new and healing g-tube she was no longer capable of rolling. Last week she started rolling from her stomach to her back again and she is so close to rolling from her back to her stomach that I am convinced a if a strong breeze came along she would flip right over. She has mastered grabbing her toys and anything else she can get her hands on. Basically we are just thrilled with how great she is doing with her development.

One morning Ellie started coughing and Miles shouted out, "Su-sun!" and ran into her room and turned on the suction machine. I had never heard him say suction before, let alone know exactly when Ellie needed suctioning. He knows how to take care of Ellie better than most adults would. I will be shocked if one of our kids doesn't end up working in the medical field after all this early exposure.

Playing in Ellie's room where we spend most of our time.

Scott has been after me for drinking too much Dr. Pepper and Diet Coke lately. He never believes me that I only drink one....okay sometimes two cans a day. I don't know what makes him think it's happening more than that.

Miles regularly walks around pretending to drink an unopened Diet Coke. Don't worry, he never really drinks it.

We spent the day at Cornbellys with all of our Hale cousins (including Allie and Gabe who are technically second cousins but we just consider part of our Hale family cousins). I was grateful to have so many helping hands to keep an eye on Brynn and Mason as they ran around with everyone else because it was a full time job to keep up with Miles, but I loved every second of it. He was crazy about jumping on the big inflatable pillow and we couldn't get him off of it. Brynn and Allie ran around in their matching beanies holding hands the entire time. They are such cute girls together. Mason was the only person who successfully made it through the entire monster (a big inflatable monster you walk through that is really pretty scary) without getting too scared and turning around.

The Girlies.

Miles "helping" Gabe down the slide.

Mason in the bounce house

The Mamas. Rachel, Leslie, and Whitney (with cute Kendall)

 My mom offered to spend the night with Ellie so we could take the big kids and use a gift certificate for a free night stay in a hotel by Thanksgiving Point over Fall Break. Based on the kids' excitement level you would have thought we were going to Disneyland instead of a hotel 20 minutes away from our house. Our stay-cation in Salt Lake City last year was one of their favorite vacations ever, so they were pretty excited to be doing it again . I may be the first person in history who took 3 kids under the age of six to a hotel and got the best night sleep I've had in 5 months. It was glorious.
Our itinerary went something like this: dinner at Texas Roadhouse (saw a baby girl with a feeding tube like Ellie's...made me miss her), Cornbellys, hotel swimming pool, bedtime, Saturday morning cartoons, hotel swimming pool, Barnyard Boo, and home.

Cornbellys

I couldn't resist taking a picture of Brynn and Miles asleep next to each other in the hotel because it shows the difference in their personalities perfectly.

Brynn laid out a towel out on her pillow because her hair was wet, put her hands under her head, gave a big fake yawn (she does this every night) and fell asleep. Her bedtime routine looks like something you would see on a princess movie and it works like a charm for her. Miles on the other hand tosses and turns and wrestles with his 'uh oh' until he collapses in exhaustion.

5 months

This little one is 5 months old today.

A couple weeks ago we were able to spend the afternoon with my friend and coworker Rachel Lark, of Rachel Lark Photography, and her darling baby boy. Remember the awesome family pictures she took for us last December? It was so fun catching up with Rachel since the last time we saw each other we were both super pregnant. The plan was to take some pictures of Ellie, but as usual Ellie revolted against the plan and was being a grumpy gus (Scott insists it was because he wasn't there to make her smile. It's true that she always smiles for him.). Good thing Rachel is super patient and just waited until Ellie fell asleep and then snapped these gems. Thanks Rach!

"Not funny, Mom. Where's Dad?"

Love those long lashes and hair!

The toenails Brynn insisted we paint for Ellie.

Thank you to Ellie's Build-a-Bear for letting us use her skirt :)

Speaking of coworkers, have I mentioned that I started back at work a few weeks ago? Right now I'm just picking up shifts here and there while we figure out how to best make this work. I have mixed feelings about it, but it is necessary since someone has to pay the bills. If only I could figure out a way to get paid to be Ellie's nurse rather than having to go take care of other trach patients to get a paycheck. Oh well, it is fun to see all my friends again and I do genuinely love my job.