Horn of Plenty

In honor of Thanksgiving I wanted to post about Mason's latest obsession. It's no secret that Mason can be a tiny bit obsessive about things that he likes. Over the years he has obsessed about many of the things that most little boys go crazy over like garbage trucks, trains, dinosaurs, dragons, transformers, animals, and legos. But every once in a while Mason will become enthralled with the most random things. The last few weeks this has definitely been the case as he has had a great fascination with.....cornucopias. Yes, the horn of plenty is Mason's current object of desire. His interest was piqued when it showed up as a bonus word on his spelling list then one cool cornucopia school art project and he had spiraled into an all out obsession. After days of printing and drawing pictures of cornucopias Mason decided he wanted a "real" one. With the help of his enabling grandma he created a very impressive stuffed cornucopia. He now sleeps with his cornucopia and last night when we asked Mason what he wanted for Christmas his response was, "Maybe like a cornucopia decoration or something." I couldn't make this stuff up if I tried. Gotta love this kid's unique personality.

Mason with his two favorite Cornucopia Projects.

Mason's homemade Horn of Plenty. He came up with the idea and made the corn, pumpkin, squash and pineapple with random materials found around the house all by himself.

Ellie's Nursery

 I am fully aware that typically when someone posts pictures of a nursery on their blog it is expected to be full of pinterest worthy themes and diy projects. Well I hate to disappoint, but I can promise that no one will be pinning Ellie's nursery with its mismatched furniture, pink hospital buckets, and bare walls to their boards any time soon. Unless they are looking for a functional hospital room theme, in which case I think we've really nailed it. I wanted to do a post about Ellie's room first of all because it is where we spend the vast majority of our day, but also because it is the easiest way to explain all of the equipment she requires. 

Despite me not giving a second's thought to decorating the room, we have spent a lot of  time and energy and money (all that equipment is not cheap) turning this room into what it is. The day we brought Ellie home from the hospital after getting her trach and g-tube was also the day we moved back into our house after renting it out all summer while Scott did his internship. When they dropped off all her equipment this is what her room looked like.

It was extremely overwhelming and wasn't functional at all. Over the next few weeks we searched for things we needed on KSL and moved everything around over and over until we had a setup that worked. We can now have Ellie hooked up to her trach mask while in her crib, while rocking her, or while she plays on the floor without having to move around equipment. We can suction her in her crib, in the rocking chair, or on the changing table without moving equipment. We can see her monitors from the doorway, from the hide-a-mat where we sometimes sleep, or from the rocking chair without moving equipment. She can be hooked up to her feeding pump in her crib, in the rocking chair, and on her changing table without moving equipment. It took us several weeks of trial and error, but ever since we settled on this set up everything has been much more functional and it makes our days and nights go so much smoother. So here is a quick (or not so quick) tour and explanation.

On the left is the hide-a-mat that Scott and I took turns "sleeping" on for the first few months home. We feel comfortable enough and have a good enough system now that most nights we both sleep in our bedroom next door, but whenever we have a rough night with lots of suctioning, montior alarms, and adjusting machines then we pull out the hide-a-mat. Not to mention it has become a favorite book reading and movie watching spot for the big kids when we are hanging out in Ellie's room.
In the middle is Ellie's mini crib. Miles is still using our usual crib and the room was quickly filling up with all the things we had to put in it, so we were thrilled when we found this mini crib for a steal on KSL. And with Ellie's size we don't have to worry about her growing out of it anytime soon.
Under the crib is her pulse oximeter which reads her oxygen saturation and heart rate. We have her hooked up to this monitor with a lead that wraps around her foot whenever she is sleeping and periodically throughout the day. We rely on it to alarm and wake us up if her sats drop so we can suction her, adjust her trach mask settings, or increase her oxygen if we need to.

The pole next to her crib holds her feeding pump and bag. As mentioned in the previous post we use this pump to slowly run in Ellie's food throughout the day and night. We can only put a few ounces of formula in the bag at a time so it doesn't go bad. The pump alarms every couple of hours telling us we need to refill the bag. We have a nifty little backpack that holds the bag and pump that allows us to be mobile with Ellie during the day.
Below the feeding pump is Ellie's trach mask. That gray box is an air compressor. Yes, like the one in your garage...and yes it sounds like the one in your garage, too. Think of it as the ultimate white noise machine. The bottle hanging down from it has a heater attached to it and we keep it filled with sterile water. This does not have any type of alarm so we just have to keep an eye on it and refill it every few hours to keep it from running dry. The air compressor blows air through the nebulizer and it sends warm, humidified air down the blue tubing to Ellie's trach mask and keeps her lungs and secretions moist. I'll explain more about this when I do a post about her trach. We have her hooked up to her trach mask whenever she is sleeping and then periodically throughout the day. This last week she was sick with a respiratory illness and so we had to keep her hooked up to it around the clock. We can't make the tubing any longer than what you see in the picture or she won't get adequate humidification and the tubing needs to stay as level as possible or it dumps water all over her so it is a really short leash. The bag in the middle of the tubing just collects the condensation that builds up in the tubing so we empty that a couple times a day.
Below the compressor is our stationary suction machine with the suction catheter and tubing coiled on the floor in front of it (we also have a portable suction machine that we take everywhere with us). Again, I'll talk more about suctioning when I talk about her trach, but it is something we have to do multiple times an hour to clear the secretions out of Ellie's trach and lungs. There is a canister in the back that collects everything we suction. Think of it as a giant booger collector. We learned the hard way that this becomes very stinky even with regular emptying and cleaning. Thankfully someone gave us the tip to pour a little mouthwash in the bottom of it to keep a fresher smell. Works like a charm.
I have to mention that my dad custom made that little black shelf to hold these machines for us. Thanks Dad!

 That brings us to the glider. I have spent countless hours in this glider feeding and rocking all four of my babies over the last 6 1/2 years...and it shows. It is squeaky, stained, has flattened cushions, and the arms are barely hanging on. I am really really hoping Santa has room in his sleigh for a nicer and more comfortable glider for me. Maybe even one that is wide enough for Miles to come sit and read books next to me and Ellie. We'll see. We have it arranged so we can reach most of the things we need while rocking her like blankets, burp clothes (for a leaking g-tube, Ellie doesn't spit up), binkies, and syringes for venting because when we're rocking Ellie she is almost always hooked up to everything and so we can't just stand up and walk across the room to grab something. We are stuck. As much as Scott loves it when I yell out asking him to come get things that are out of my reach, this setup has made it so I don't have to do that as often.

This may look like an ordinary changing table, but in Ellie's nursery it is so much more. It is our work station. This is where we do trach care, trach changes, suctioning, g-tube care, diaper changes, and every other mean thing we do to Ellie daily.
On the far right you can see the oxygen concentrator hiding in the closet. This is another loud machine so we keep it in the closet to cut down some of the noise. The green tubing you see running across the room is the oxygen tubing that runs from the concentrator to the trach mask. Ellie doesn't normally require oxygen anymore, but the air blowing through the trach mask dilutes the air and makes her sats drop unless we have just a small amount of oxygen running through it. Whenever she has gotten sick she has required additional oxygen throughout the day so we just increase it to whatever amount she needs. This is the one machine we can't reach while sitting the the glider with Ellie so we have trained Miles how to turn it on and it is his favorite job. Whenever he hears us turn on Ellie's machine he comes running from across the house to turn on the oxygen for us. Why do I think that is so cute?

Our tour of Ellie's nursery will conclude with the supply closet (the other half of the closet is filled with boxes as well). Taking care of a trach and g-tube require A LOT of supplies. We are getting to know the UPS guy pretty well since he is delivering at least 10 large boxes to us each month with all her supplies. Digging through the piles of supplies was difficult at first, but then we developed a system for organizing them. When we get our monthly supply I sort everything out into weekly boxes. Every Sunday I get down a weekly box and change out all the things that we rotate once a week and then fill her trach drawer with all of the daily supplies for that week. I do the same with her feeding supplies in a feeding drawer. It is much easier to keep the drawers organized with only a week's worth of stuff rather than a month's worth. Also when I get the last box down I know it is time to call and reorder supplies so they will get there by the end of the week.

I know I have already posted this picture, but this really is the best representation of what our days are like. I cried and cried the first few weeks at home when these four walls felt like a prison to me. I am adapting and getting used to my new constraints and am finding ways to make it work. There is only one picture hanging on the wall in Ellie's nursery.

 It is Simon Dewey's "In His Constant Care". 

Whenever I feel discouraged (which is pretty much every day) I look at this picture and try to remind myself that the Lord sent Ellie to our home knowing that she would bring with her tremendous challenges. But I know that he will not leave us to face them alone. He is here every step of the way helping us make it through each day and night. I look back at everything we have made it through the last 6 months, on virtually no sleep none-the-less, and I cannot deny the blessings that have lifted us up and carried us through. And so we will keep taking it one day at a time.

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.