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.