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We're home! Not just home from the hospital, but home to our own house! This is the moment I have been looking forward to for the last 3 months, but when we brought Ellie home from the hospital Thursday night it wasn't quite the glorious reunion I had imagined. We were greeted by box upon box of medical supplies and equipment. Oh the equipment! We have stationary suction, portable suction, a pulse oximeter, an oxygen concentrator, a stationary oxygen tank for back up, portable oxygen tanks, a feeding pump and pole, an air compressor and humidifier for Ellie's trach mask. I thought I would feel happy but all I felt was scared, overwhelmed, panicked, inadequate, trapped, sad, and tired...so very tired! I spent 90% of the day Friday crying as I looked around my house that looked more like a hospital storage room than a home and the reality of our new life hit me full force. This is not just oxygen for a couple of months. This is altering our life forever. A life I didn't sign up for, that I didn't want. I felt like I was drowning. That was five days ago. In the last five days we have started to get things organized and figure out a routine. I wish I could say everything is better now. Each day has gotten a little easier (emphasis on little) as we move forward and figure out how to make this work. I still wish I could just say, "I give up! I fail this challenge!"and the last year would be washed away and life would go back to the way we planned it to be. But I can't do that. I have no other choice but to keep putting one foot in front of the other and take it a day at a time. I hope one day I will look back at this post and say, "Look how far we've come!"  In the mean time we are slowly working on transitioning the older kids home with us. We started with some visits during the day with the kiddos, but they would still sleep at my parents' house. We couldn't refuse when Mason and Brynn begged to move back home and sleep in their bunk beds so they are now home full time with us. Miles spends the day with us but is still sleeping at my parents' house for the time being. As crazy as it can be having all the kids here while trying to take care of Ellie it feels good to be together as a family again. 

Babysitters

If I had a dollar for every time someone here at the hospital asked how old my kids are and responded with 'Wow, you've got your hands full!' then we might be able to pay Ellie's medical bills. The truth is, I do have my hands full with Miles and Ellie so close in age. I can't say the 17 month space between kids is something I have loved or would recommend, but we are doing the best we can in our situation. Sometimes this requires getting a little creative with ways to entertain Miles while we are tied down with Ellie so we don't find him swinging from the kitchen light fixture (this literally happened a time or two) or find my mom's iphone in the toilet (unfortunately this also really happened). Rule number one is make sure all the doors are closed before you sit down to limit the places he can get into trouble. Second, recruit the help of the older kids to entertain Miles. While most of the time they do a great job playing with him I am often reminded why 4 and 6 year olds don't babysit. One day when I was home alone with all the kids and had to feed Ellie I sent Miles downstairs to play with Mason and Brynn. I heard Mason yelling "no Miles, no!" over and over and then started hearing the clanging of metal folding chairs being pulled out of the storage room. I was yelling down to Mason asking what was going on and he kept telling me "It's okay Mom, Miles won't stop touching the red thing (a scentsy candle), so I'm blocking it with chairs." By the time I was finished feeding Ellie I was dying to see what had been going on down there and this is what I found...

Notice the red scentsy being protected by the deathtrap of chairs. I was actually very impressed by Mason's problem solving and that he didn't just shut Miles out of the basement like he and Brynn often times do when they get tired of playing with Miles. The third rule is anything that can't cause damage is fair game for entertainment. One of the most successful babysitters we have found for Miles is a pile of laundry.

 The kid goes crazy rolling around in piles of laundry and will be perfectly content for 20 minutes straight, which is unheard of for Miles. I am so happy to have him sitting still that I don't even care when it's my folded piles of laundry that get torn apart. Out of all of these scenarios my very favorite is when he just comes and cuddles up next to me with his blanket and a book.

There is nothing I love more than reading books with my toddlers. Miles has his favorite books he loves to read over and over. His favorite is Hop on Pop. He especially loves counting the balls on the fall off the wall page. The way he holds onto my finger to count and shouts "NINE!" at the end always makes me smile.
Honestly, I love Miles' free spirit. He may be a crazy 19 month old, but that's okay, he's just doing what a 19 month old is supposed to do, explore and learn. It's not his fault that he doesn't have a mom who is available to follow him around exploring all day.

Obviously this post reflects our life before Ellie entered the hospital because Miles and Ellie haven't been together for more than short visits for the last month while Ellie has been in and out of the hospital. My mom has pretty much stepped in as Miles' mother. He is growing up so fast and every time I see him I am blown away by his ever increasing vocabulary and his improving attention span and obedience. It makes me happy to seeing him progressing, but breaks my heart that I am missing it all. I know it will be crazy when we are all together under one roof again, but I still can't wait to be together again.       

The Forgotten Ones

Our family blog seems to have been commandeered by Ellie's updates this month. It may appear I have completely forgotten about my other three children, but that is definitely not the case. I often think about how much easier this would be if Ellie was our first and only child. But she's not. There are three other kids who must be taken care of too. I constantly feel torn. When I'm here at the hospital with Ellie I miss Mason, Brynn, and Miles and desperately want to be home enjoying life with them. When I am able to slip away from Ellie and spend a little time with the big kids then I am worried about Ellie and feel guilty being away from her. I am anxiously awaiting the day when our family will all be together in one place. In the mean time we have been taking advantage of some of the amazing resources they have for siblings here at Primary Children's. First we were introduced to the Forever Young Zone. This is a playroom that is full of toys and play areas that are like a small scale children's museum. There is also a craft table where they have endless amounts of crafts and projects for the kids to do. Mason thinks he has died and gone to heaven every time we go and he gets to do things like paint wooden cars and ceramic figurines, make silly putty, and make bead pets to name a few of his favorite projects.  Brynn loves the little kitchen and doctor's office play areas.  Miles likes the big tower he can send cars down but mostly just throws things at people. The kids love coming to visit us in the hospital and never complain about the hour drive each way because they love visiting the forever young zone so much.

Another really awesome thing we got to do was a "Sibling Session" with a child life specialist. Mason and Brynn got to have a little private class to teach them about Ellie's trach so they would feel more comfortable with it and not be scared. They started off by showing them pictures on an ipad of Ellie with her trach and her room in the PICU. The kids got to ask questions about any of the equipment or anything on Ellie. Then they pulled out a doll that had a trach in it and them them touch and explore it so they could understand how it works. Then they talked about ways they can help take care of Ellie and some of the things Mom and Dad will be doing to take care of Ellie with her trach. Then they each got a "Buddy Doll" along with a bag of hospital supplies that they could use to take care of their dolls (Miles got one, too.) That night Brynn and Mason came home and set up a little hopsital for their buddy dolls using the guess who game as monitors. Watching their roleplay was one of the cutest things I've ever seen. It really opened my eyes to what has been going through their minds during all of this. Apparently these child life specialists have done this a time or two and really do know how to help siblings through this process.

There was even something for the biggest kid in our family. Scott enjoyed the slurpee machine in the PICU :)

Ellie is currently in surgery for her g-tube placement as well as a Nissen Fundoplication. The Nissen consists of wrapping her stomach around her esophagus. It is being done to stop Ellie's severe reflux that is damaging her upper airway therefore prolonging her ability to outgrow the laryngomalacia as well as putting her at huge risk for aspiration. It is an invasive and permanent procedure, but after much consideration we feel like it will be best for Ellie. If all goes well we should only be here until the end of the week!

A New Girl

It's been four days since Ellie had her trach placed and we have watched her turn into a whole new baby.  She has been looking around with her big, beautiful eyes and taking in her surroundings like it is the first time she's really been able to enjoy the world around her. It's amazing what you can do when you are not completely focused on breathing 24/7.  All of the nurses comment on how interactive she is with us, which definitely was not the case before. She lights up whenever she sees us and is constantly smiling at us now. Scott even got her first laugh out of her today. Sadly, with the trach she is not able to make any noise with her voice so it was a silent laugher unless you count the gurgly sound coming out of her trach, but we could definitely tell she was laughing. One night when she was awake and content we facetimed with the kiddos at home and it was amazing to see how she responded to them even through the ipad. Watching her begin to thrive makes all the sacrifice this will require completely worth it. I am already missing her little raspy voice and hope she will be able to use a speaking valve sometime in the future so we can hear her talk, laugh, and even cry again. A huge thanks to Whitney and Brandon for coming to visit and capturing some of these very precious moments with Ellie.

 

Ellie's has one more surgery on Saturday to place a g-tube (a permanent feeding tube that goes through her abdomen into her stomach) and then all we have to do is finish our trach training next week she should be ready to go home. 

It's done

Our New Journey

It's crazy how the days fly by so fast, but so much happens and changes each day that just thinking back to Friday feels like weeks have gone by. Ellie spent all of Friday on bipap. They tried several different cannulas and prongs to try and find the delivery method that helped keep her airway open the best, but didn't have consistently good results with any of them.

At the end of the day Ellie was still retracting severely and not exchanging much air. They tried putting her on heliox (a combination of oxygen and helium). The idea is that helium is not as dense as oxygen and nitrogen that are in the normal air we breath and therefore it is easier for it to get past her obstructing. The only thing it seemed to do was make her cry a little higher (even with how concerned I was it was hard not to laugh at the sound of her cry), but didn't help her breath any easier. Late that night Ellie got really agitated and was crying for 2 hours straight. When she finally wore herself out and calmed down she just stopped breathing altogether. She would not take a breath on her own unless we were agitating her. So they did an emergency intubation. The doctor told me after she had never been so nervous about an intubation because of Ellie's complicated airway, but it went flawlessly. I was so grateful to have Scott here with me so I didn't have to go through it all alone. Now that her airway is secure and Scott is here I am breathing much easier.

Yesterday the doctors discussed with Scott and I where we go from here with Ellie.  The surgery she had last week is effective in relieving the symptoms of laryngomalacia in 90% of patients. Unfortunately, Ellie is part of the 10% who it does not help enough. Friday night she proved that her little body can no longer keep up with the demands of breathing through her obstructing airway and so the last option we are left with is a tracheostomy. A trach will create an airway below her larynx and bypass the problem until she can grow out of it. This has been my greatest fear since she was diagnosed, but as I've watched her struggle this last week I realize we have no other choice. She will be having surgery tomorrow to place the trach. The doctor said she will have the trach for 2-3 years until she grows out of her laryngomalacia.  He told us stories of kids who have had this done and how they thrive and lead a perfectly normal childhood. Her quality of life and development should improve drastically with this since she will no longer have to spend every ounce of energy she has to breathe. She will remain in the hospital for 2 weeks after surgery for the trach to heal and for us to be trained on how to take care of it. It is going to be a really big adjustment and extremely overwhelming for a while I'm sure. But as the doctor said soon doing all of her trach care will become as routine as combing and doing her hair. I am not as worried about how this will affect me as I am about what kind of life Ellie is going to have. I just want her to be a happy little girl. I want to get to know her and see her personality shine through. I want her to be able to run around and be carefree like a toddler should be. I hope that this will make all of that happen for her. 

Here we go again

Tuesday, the day Ellie turned 2 months old, started off on a high note when she shared her first real smiles with me during her 3 am feeding. This is a moment I have been anxiously awaiting for quite some time and it did not disappoint. I was able to catch a few of her smiles to send to Scott so he wouldn't completely miss out on this special first.

Unfortunately her day just went downhill from there. She had a barium swallow study done to see once and for all if she could continue eating orally. She failed the test and it was determined she needs a feeding tube until she can grow out of her inability to swallow without aspirating. After two months of doing everything in our power to avoid a feeding tube this was a devastating blow for me, but things have gotten bad enough with her feedings that I was finally able to feel at peace with the decision and know it is what's best for Ellie. My biggest fear is that she is going to loose all the swallowing skills she has worked so hard to develop and that we may be started down a long hard road to get her off of a feeding tube.

So we were admitted to Primary Children's yet again to get an NG tube placed and start her on her tube feedings to figure out how she would tolerate them best. After a 24 hour stay we were discharged home and got set up with more home health equipment, making Ellie's living room appear even more like a hospital room. 

This morning I bathed Ellie and was getting her all ready for a little photo shoot of her with her new feeding tube when I noticed her breathing was becoming more and more labored. She was actually making me very worried.  I started making calls to her doctors which ended with me hanging up on them to call 911 when her sats dropped to the 60s and we couldn't get them up. We have ended up back at Primary Children's in the ICU with Ellie on the verge of being intubated. It is terrifying. She started crashing the minute they wheeled her into her room. I can honestly say I have never been so scared in my entire life. I was just waiting for her to code. They were able to stabilize her on bipap and currently have her sedated with precedex to keep her calm. The doctors still aren't sure what exactly has caused this sudden downward spiral which makes me nervous that she's not out of the woods yet. Scott has booked the first flight out of Omaha in the morning to come be with us.

I can't even begin to express my gratitude to all of you who have lifted us up with your love and support at this time. Hoping for a better report tomorrow (or whenever our situation permits).