Too Easy

It's been a month since we returned to Omaha without Ellie. Scott went back to work, Brynn and Mason resumed school, Miles picked up where he left off being a carefree 2-year-old, but all I had to go back to was a big empty void because the center of my whole life was gone. I had gone from a crazy but wonderful summer of having all four of my kids home to easy going days with one child in the blink of an eye. Those summer days were long and hard, but I wouldn't have wanted them any other way.

My nights were often long and each morning little feet would come running into my room much earlier than I was ready for them. Miles has always been an early riser and this summer was no exception. Since my sleep patterns while caring for Ellie weren't all that different from having a newborn, I only felt a little guilty sticking to the rule that if baby is sleeping then mommy should be sleeping, too - at least in the morning.  

Sadly, Miles had gotten used to having a sleep deprived mom and just started doing his own thing each morning. He would usually go downstairs and pour himself a bowl of cereal, bring it up to my bed and watch shows next to me until Ellie woke up. I knew when I eventually got up I would be greeted by a trail of cereal leading down to the kitchen where half a box of cereal would be dumped all over the floor, but that was the price I paid for an extra half hour of sleep and it was completely worth it every single time.

Once Ellie woke up, however, it was time for the day to start whether I was ready or not. First I would hear her start kicking the side of her crib and would know the inevitable time to get out of bed had come, but would try to savor a second or two more in bed until I was snapped awake by the sound of her sat monitor alarming which could mean one of two things. Either she had succeeded in her favorite game of pulling off her sock and sat monitor and was totally fine, or she was coughing up all of the secretions that had settled in her lungs during the night and needed suctioning immediately. Most of the time it was both.

No matter how tired I was, this was my absolute favorite scene to walk in on every morning. No matter how she was twisted or turned in bed she would look up at me and give me the biggest grin.

The big kids came swarming to Ellie's room in excitement as soon as they heard her awake. They would hang on the sides of her crib showering her with their typical greetings of, "Hi little girl!", "Hi my little Ellie Bellie!", and of course a "Hi, Hi, Hi!" from Miles. After a few minutes of suctioning to get all the gunk out of her lungs it was time to get Ellie cleaned up and ready for the day. She may have been adorable smiling at us upside down, but the truth was she was a sweaty, hot, mess each morning after having warm humidified air blowing on her for 12 hours.

First thing, we would disconnect all of her monitors and feeding tube and strip her down for a bath. Ellie's bath consisted of an inch of water in the bottom of the bathtub that I would lay her in and essentially sponge bath her so as to avoid any water getting in her trach. Ellie loved her baths and would kick her legs like a maniac splashing and laughing as she played in her inch of water. Once out of the bath it was time to do all of her morning cares. It really was ideal to have two people doing it, but since I was almost always on my own the older kids became excellent assistants.

I would start with her g-tube care which involved cleaning around the g-tube site with a q-tip (this was the thing Ellie hated more than anything), cleaning out her extension tubing, putting a clean pad under the button to protect her skin, securing the tubing to her stomach so she wouldn't pull it out (she loved to tug on the tubing). Sounds easy enough, but Ellie had developed a very effective defensive move of hooking her legs around my forearms as I worked and pushing my arms away which often times made it very difficult to complete these tasks in a timely manner.

Next I would do all of her trach care including sterile cleaning around her stoma (the hole in her neck), changing out her trach ties, washing her neck under her trach ties, and placing a new piece of gauze. This was the hardest part to do by myself because it was the time when Ellie loved to use her quick little hands to decannulate herself (pull her trach out). This is where Mason, Brynn, and even Miles came to my aide by standing on the garbage at the head of the changing table and distracting Ellie while I did everything as quickly as possible. One of Ellie's favorite things were the tweezers we used to put the gauze under her trach. You know - the sharp, pointy, perfect for causing bodily harm kind that you should never let your baby play with. I would have to sneak them up under her neck without them entering her field of vision because if she laid eyes on the tweezers before her trach care was done then it was a lost cause even trying to continue. She would go after those tweezers relentlessly until she got a hold of them. When her trach care was complete I would reward her by letting her play with her tweezers for a little while... supervised, of course.

Then it was on to oral care. After months of a full blown wrestling match to get a swab past her lips to clean her teeth and mouth, one day she decided the pink swabs were one of the few things she allowed, and even enjoyed, in her mouth. I would hold out the swab in front of her and she would grab that thing so fast and pop it right in her mouth. She was a smart and very particular little girl because when she was in the hospital their swabs were identical except they were green and she would have absolutely nothing to do with them, but as soon as I showed up with a pink one from home she swiped it out of my hand and went to town sucking on it. At least we know she wasn't color blind.

After all of that was taken care of  it was onto typical baby care like lotioning, dressing, combing hair, all of that fun stuff. The last thing we had to get done before it was time to start her morning feeding was her Chest PT which Brynn nicknamed Ellie's "pat pats".

This is where we had to manually percuss Ellie's chest and back in 8 different places for a total of 30 minutes to help break up and loosen the secretions out of Ellie's lungs so she could cough them up and clear out her airways. It was a serious arm workout to percuss as hard and as fast as I could for 30 minutes straight. Ellie's lack of cooperation didn't make it any easier, but we discovered that she was a big fan of Baby Einstein videos and they served as a wonderful distraction/reward for her cooperation during this less than pleasant treatment. Brynn would get her baby doll and an extra "pat pat" and follow right along with everything I did. Have I mentioned that my sweet 5-year-old daughter was more qualified in caring for Ellie than most nurses?

In August, Ellie was finally big enough for a Chest PT vest that hooked up to a machine that basically pummeled her chest and back, shaking her entire body while doing it, and was much more effective (and easier for me) than the manual percussion. This machine was going to be a total game changer for us, but unfortunately we only got to enjoy it for 3 days before Ellie was hospitalized.

Once her pat pats were done it was time to change out the tubing on her feeding pump and get it set up in her portable backpack for the day. We would start her first feeding of the day which consisted of 4 ounces of Peptamen Junior (the newest formula she was one) that would run in over 2 hours. Once that was complete we could unhook her from her backpack for 2 hours until her next feeding. We would repeat the two hours on and two hours off cycle throughout the day.

That concluded Ellie's morning routine and we were now ready for the rest of us to get started with our day. This included the big kids doing all of their daily responsibilities, one of which was Mason and Brynn each being assigned to play with either Miles or Ellie for 15 minutes while I got in the shower and got ready. They would always fight over who's turn it was to play with Ellie. I was so grateful that I could trust them to take care of her and get me if she needed something.

Meal time with Ellie was different since she didn't eat anything orally and we were still in the process of trying to convince her that food was not her arch enemy. We were doing monthly feeding therapy at the hospital and with our at home occupational therapist and then continuing the therapies by ourselves on a day to day basis. As part of her feeding therapy we would always try to involve her in family meal time. Whenever we were eating we would put her in her high chair and pull her up with the rest of us and give her tastes of the food we were having. It seemed to be helping because Ellie definitely knew when we were eating and she acted very excited about the idea of food, but still wasn't sold on the concept of actually putting it in her mouth.

We were having the most success with "hard munchables". These were foods that Ellie could hold and explore in her hands. She liked these best because she was the one in control of touching them to her mouth for a taste and could pull them away if she didn't like them. Really the only thing she would willingly put to her mouth were chips. She loved licking the salt off of them. Her trust issues were very apparent in this area, too, because she would only accept food that I handed her. If someone else tried to hand her something she would refuse to take it, but if I took it from them and offered it to her she would willingly take it from me. All of her therapists agreed this was a great sign of her cognitive ability to know who people were and identify who she trusted. 

We tried to incorporate Ellie's therapy throughout our daily activities. Ellie's occupational therapist would come to our house every other week to work with Ellie and give us ideas of different things we could do that would help develop different skills. The kids all loved being involved in Ellie's therapy and would line up to help play with her. One of our favorite activities was to sing songs. Ellie loved music! We had several cards that each represented one of her favorite songs including itsy bitsy spider, row your boat, twinkle twinkle little star, if you're happy and you know it, etc. We would hold up two in front of her and ask if she wanted to sing. She would grab one of the cards and we would sing whichever song she chose. We used this game to help encourage the use of several different signs (music, more, want, all done), help her learn to mimic the actions that correlated with each song (another skill for learning to sign), as well as to help her develop cognitive skills that would hopefully help her be able to use buttons for communicating in the future.I think Miles and Brynn enjoyed doing this more than Ellie did.

For me, the most challenging and demanding part of having a special needs child was keeping up with all of the phone calls and paperwork. I could have kept a full time personal assistant busy managing insurance issues; ordering supplies; reordering supplies when they messed the previous order up; scheduling appointments, tests, and therapies; applying to state programs; calling doctors offices with questions or concerns; filling out and faxing paperwork that needed to be submitted by certain deadlines; the list could go on and on. None of these were quick and easy things either. Scott and I had to increase our phone plan to unlimited minutes after Ellie was born because we spent so much time on the phone. I can honestly say I don't miss this aspect of Ellie's care.

I tried really hard to make sure that we balanced all of the business with as much fun as possible. I got more and more comfortable getting out of the house with all four kids in tow as the summer went on. We developed a system with Ellie strapped to my chest in the baby bjorn, her feeding backpack on my back, and her 20 pound trach bag - containing her suction machine and any trach or g-tube supply we could possibly need in an emergency - slung over my shoulder. I only got into trouble if Miles needed to be carried for any reason (hurt, tired, or being naughty). Sometimes it was easier to just stay home and that was fine, too, because we had plenty of fun around the house and yard together.

By the end of the day the house was usually a complete disaster and I was running on fumes. When Scott walked in the door from work he was nothing short of my knight in shining armor. Without missing a beat he would swoop in and give the kids the attention they were wanting, finish up (or many times start) making dinner, and clean up the whole house. I know this wasn't his dream scenario to return home to after a long day of work, but he was always so supportive of me pouring every ounce of energy into the kids and he would pick up all of the other pieces without complaining a bit. We are a team and I couldn't do any of this without him.

Ellie's bedtime routine was pretty much a simplified version of her morning routine where I would do her trach care without changing the trach ties, get her dressed in her jammies, do her pat pats, and then read some books before laying her in her crib and hooking her up to her monitor, trach mask, and nighttime feeding (slow continuous rate through the night). She was an amazing baby and as soon as her machines would turn on, she would just grab her binkies (three of them, including her weighted binky, to be exact), roll over, and go to sleep. 

 Has it been apparent enough that Ellie's brothers and sister were extremely involved in her care? I didn't talk much about their routines and the things I would do with them during Ellie's naps, but that was all a part of our day as well. Brynn and Mason did a wonderful job fulfilling their summer responsibilities each day which was a huge help to me in keeping the house in order. All of them were so patient has I tried my very hardest to balance all of their needs with Ellie's needs when the truth was that Ellie's needs always trumped theirs. Her needs were usually a medical necessity that could not wait and the kids were so understanding of that. I always worried that the sacrifices they were having to make at such a young age would have a negative impact on them, but I now realize they learned more about selfless love than I ever could have taught them.

This was the last picture I took of my kids together.
It was at bedtime, right after we finished Ellie's pat pats, the day before she was admitted to the hospital. This scene is exactly what I picture when I think of my kids' relationship with Ellie.

Now, life is much simpler.
We all wake up, get ready, and eat breakfast together before Mason and Brynn get on the bus for school. That is at 8 o'clock. At that point I turn to Miles and ask him what he wants to do today. We usually go out and do something each morning because staying home is almost more than I can bare most days. We have lunch and then Miles takes a nap. After he wakes up we hang around the house doing whatever we want until Mason and Brynn get home from school. The kids spend the evening playing with friends and doing homework. Once Scott gets home we have dinner and get ready for bed.
It's all just way too easy.

 It feels like spending months training for a marathon and on race day showing up to find out it is only a 1-mile fun run. For 15 months we prepared for and accepted a life with a special needs child. Ellie was a huge driving force behind every single decision we made when moving out to Omaha. We bought a house with an open floor plan that would be conducive to her using a walker or wheelchair in future years, we made sure we were in the boundaries for the school with the strongest special needs program in the district and therefore the most resources for Ellie, we got Ellie on Nebraska's Katie Beckett program so we could finally have access to nighttime nursing care and respite hours, we even put behind us the expectation of one day becoming empty nesters.
Now everything we prepared for is gone and life is back to what it used to be. It is definitely easier and a lot of people would say our life will be better now, but to me it just feels empty and meaningless.
I'm trying my hardest to enjoy the time I have with my kiddos. I really do love being able to spend more quality time with them. But nothing will ever compare the those wonderfully crazy summer days we had.