The first few weeks at home were amazing but a little rough, as Dustin had to go back to work. Then, half our night nurses called off their shifts, so we had to sleep in Emma’s room. We set periodic alarms with my pumping alarms, plus getting up while hearing Emma’s equipment alarms and changes in her breathing. Dustin and I tagged teamed a bunch, but that couldn’t last long as he had to wake up early and go to work. Friday of that week was our first trip up to Seattle Children’s with Emma, Dustin, me and the day nurse. It was weird and reassuring going to the hospital knowing that we won’t be staying! The appointment went great! On the way home on the highway, we heard a loud crack- the back-driver’s side window was shattered by a small rock! It was scary as the spiderweb crack kept expanding and cracking. The nurse was sitting there, and we thankfully had a piece of plywood to put over it so the glass won’t fall on her. It was an eventful trip that’s for sure!

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About a week and a half at home, we took Emma on her first time outside on an actual walk! We went to Millersylvania state park. She loved looking at all the trees and being pushed in her stroller. She hated the sun, even though it was just overcast. She kept squinting and squirming around. She has only been in consistent artificial light so I can see why she had such a reaction. But it was fun! The day later I started my very part-time job. So, both Dustin and I had to leave the nurse with Emma at home for the first time. What a weird feeling. I will have to get used to this.

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On March 18th, Emma had her baby blessing at our church. It was a busy day! We got Emma dressed in her beautiful white dress that Dustin’s grandma made. Once at church in our main meeting, it was time for her blessing. I asked if the nurse could let just Dustin and I help, and she agreed. I walked Emma and her vent up to the front, and Dustin gave such a beautiful Priesthood blessing, moving the congregation to tears. After church, we had a lunch-eon at our house. My family was there, Dustin’s family, and some extended family. My grandpa VanGorkum was even able to meet her for the first time too! That was special.

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Around the end of March, Emma got her first two teeth! She was really fussy for about a week and even more spitty than usual. And sure enough, 2 bottom teeth came poking through. It was super cute. She has gotten used to wearing her helmet for most of the day and night. Haven’t seen any improvement yet, but it will come. We are noticing now that Emma really is starting to get a little personality. She is non-verbal, but she can tell you LOADS with her expressions. She will shake her head no when she doesn’t want something, or swat your hand away. She will stare at your face for information too. She loves you playing with her legs and “munching” on her cheeks and neck and hands. She will now reach up to your face and play with your hair. She is sticking her tongue out more now, nodding, playing with her toes with different textures, brushing her teeth with her sponge toothbrush, and chewing on things. When she gets excited, she will slap her thighs, smile really big, and open & close her hands real fast. We call those happy hands! She also gets a big grin when Luna is near and will reach out and pet her. She loves when Luna licks her fingers. We are working on holding her in a sitting position and holding her head up, with tummy time too. She can roll over from her sides to her back, but has no interest in rolling from her back to her sides yet. We are still working on things, but there is small progress!

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At the end of March, we had a scary moment. We decided to take Emma out in the backyard by the water (wetland lake) for the second time, as it was a nice day. Luna was swimming and we were having a nice, relaxing evening. Lunda decided to then shake water near us, startling Emma. She started freaking out, and got some secretions caught and couldn’t breathe. Her stats started dropping so we kept suctioning her to get it out. The suction machine’s battery started dying, even though it was plugged in all day! We didn’t have the emergency bag with us (huge stupid mistake- lesson learned). So, we picked her and the vent up and sprinted up to the house. I was holding on to her so tightly, I was so scared I would trip and fall. When we got inside, we quickly bagged her. Both her oxygen and heartrate were at 50. I ran to her bedroom and got her oxygen tank. After a while, she started coming back up. It really shook us up. It was the first real emergency situation at home, without a nurse. We did what we needed to, and she started gaining color again and focusing her eyes once more.

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 A week after that, Emma had a bag mucous plug one evening. We kept suctioning, and she still sounded terrible- the gunk was still there in her lungs and trachea. It was terrible, as we kept taking her breath away and suctioning, but not getting anything up. Finally, after hours of trying, it went away. She was super exhausted and slept soundly that night. At least we know what one of those look like now.

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 Then, in mid-April, Emma gave us a HUGE scare. We were sure we had lost her. Our nurse and I had to get Emma up and ready for a doctor’s appointment at Seattle Children’s. She was a little grumpy, but we left around 6:15 am. About 5 minutes into the drive, Emma’s oxygen started dropping. Our nurse was suctioning her, but it kept dropping. I pulled off on the side of the road (right before getting on the highway). At that point she was at 75% oxygen and I was getting ready to bag her. She dropped fast then. I remember seeing the numbers go from 75 to 60, 50, 45…Then her heartrate dropped to the 40’s too. She started fading, her eyes rolling back, color draining. All this happened in 30 seconds. I was scrambling trying to bag her, hook up oxygen, and get her car seat out of the car and onto the gravel road. The nurse was doing a good job too at helping, then called 911. I called Dustin at that point and two minutes later, he and the ambulance showed up. Emma’s oxygen was a 5% and the heartrate was at a 5-10 range. She was all grey and limp, flopping around and unconscious. In that moment, it was my worst nightmare. I thought we had lost her, I thought she had died on the side of the road. I was under loads of adrenaline and a fight to get her to breathe, so I couldn’t dwell on any thoughts right then. The nurse said that she was going to do CPR. She put her two fingers on Emma’s chest, and right before she started pushing, Emma’s stats started to slowly climb up to 40! The nurse kept bagging her while I stroked her hair, trying to get her to fight to keep with it. Then I noticed it started raining, and Emma was shivering and wet. We put a blanket on her and she started re-gaining consciousness and getting some color back in her. Her oxygen was back up in the 90’s and we still had her max oxygen flow going into her. I then picked her up and held her so close. The EMT team escorted me and the nurse holding the vent and emergency bag into the ambulance where they drove us to the hospital. I have never held her so tightly. Reality hit me and tears started streaming down my face. What just happened? She was practically gone from us, and somehow, she’s back. The ride there was fast. Dustin met us in the emergency room. Shortly after we arrived, her oxygen started falling again, and fast. After suctioning, she came up some. What is going on?? After getting an IV in, and waiting a long time for a decision to be made what to do, they decided to get the Air Lift NW helicopter to take her to Seattle Children’s. The team took our bags and put them in the helicopter when they got there. As soon as we got her car seat strapped to the bed to roll away, her stats started to drop again! This time, only I was in the room. Why did all of the nurses leave, especially now? And where is our emergency bag?? I couldn’t figure out how to work the room's oxygen flow, so I stuck my head out of the door and said, “We need oxygen in here-stat!”. Even with the O2 alarm and me shouting, people didn’t run or come quickly at all- very frustrating. I thought this was an emergency room! Then they gave her the O2 mask on her face- um, she breathes through her trach! It was doing absolutely nothing, so I had to take charge. I took it off her face and attach it onto her trach. Finally, she came back up. I have really learned that most medical staff at the local hospital have no knowledge of trachs and vents. It makes my job as a mother that much more important. After she was stable, we went into the helicopter. Emma was in the main area with the 2 EMT’s. They said they are very comfortable with trach/ vent kids as I couldn’t go back there with her- not enough room. I got to sit in the front with the pilot. They told me to relax, she is in good hands, and to enjoy the ride as best as I could. It helped as everyone had a headset and was giving us updates on Emma. She fell asleep immediately and kept her stats up too. It was actually pretty neat to ride in the helicopter. Not the best circumstances for my first helicopter ride, but it was bordering on fun now that I knew that she was okay. When we got to Seattle Children’s, they took us to the Emergency Department. I worked with the RT to get her vent switched over to the humidification setup. Dustin came in shortly after, and so did the ENT doctors. They did a scope on her then, and raised the PEEP, or vent breath pressure, by one unit, while still scoping her. We could see that with every exhalation, her trachea and lungs would collapse slightly and then re-open. When they raised the pressure, we visibly saw them stay open. Wow. No wonder. She couldn’t breathe with her tracheomalacia and couldn’t get it back open! We then were transferred to the medical unit floor. Where we were before… it brought back so many memories, not too long ago. Different room though. That night I had to sleep in my jeans and t-shirt on the bench. I had no toothbrush or anything yet. I also ate cafeteria food for my meals too. That next day the doctors and I were trying to come up with a solution. They didn’t know why her body was now requiring more air pressure. The only thing they wanted to do was the Albuterol inhaler. We tried it, but no change. At least no bad changes. That day Dustin came up with some clothes and a bunch of food. Being here now after being home is awful. The nurses want to take over all her care, and now I’m not taking care of her anymore. A little nice, but they don’t know her anymore. Her perks and her personality has grown in just the month we were home. The weird thing is that at home, she has eyes on her 24/7, but at the hospital, I’m there. But when I’m not (eating, showering, etc.) the nurse really only comes in for schedule items and alarms. She is not getting the care and attention she needs. For example, I went to take a shower, and when I came out, she had vomit all over her. No nurse noticed. She could have easily aspirated it, and by then it would be too late (it could get in her lungs). She is so much safer at home for the small things, but I am grateful that the emergency things and doctors are a call away which is nice. After 3 days, we decided to do another scope, with her in different positions- laying flat, laying down with a wedge, in her car seat, and sitting up. We had discovered that when she is in her car seat, especially while wearing her helmet, her trach gets pulled out a little, causing the slight collapse. Also, she is more squished, compressing the airway and lungs. So, the helmet, in that position, along with the increased need for pressure, caused her episode. She isn’t strong enough to support that kind of growth yet. We then decided on the inhaler twice a day along with a chest percussion cup-like object that we “clap” on her lungs to get mucous out. With these solutions, we were able to go home. It was a VERY nerve-wracking drive home. I had to keep telling us that we actually saw her airways stay open now, and that she is okay. And we decided no more helmet in the car seat. I am just so immensely grateful. Things could have turned out much worse. I am grateful we weren’t on the highway yet, that our nurse knew what to do, that the ambulance was close by, that Dustin wasn’t too far away, that we were trained so well, and especially that Emma chose to stay with us and that she has enough fight in her. She is so strong! These experiences really make you think about miracles, life, and the big picture of our lives. We are so thankful for our blessings. Our little fighter!

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At the end of May, we took Emma out to our very first public outing (other than a park). We went to the Main St. Café in Centralia for dinner. It was a very good experience! We just put her stroller on the side of the table and ordered. Our server and a couple of people commented on how cute she is and a couple of other questions. We suctioned her twice, and I thought it was loud and it was going to make everyone look and bother people. But no one cared! It was a pretty good experience, and we felt like a regular family.

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In mid-June, Emma had two important doctor’s appointments at Seattle Children’s. We went to Urology clinic first, and we were told that Emma’s ovaries (or gonads since they are infertile), will need to be taken out or they might develop cancer. We were sort of told that before, but we were talking now about it being in the next year or so for the surgery, so that was surprising. The other appointment was for Gastroenterology. She has been gagging and vomiting a lot. We are thinking it is reflux but aren’t sure. We got a couple of options to try, so hopefully something helps. A couple of days later she had her first dentist appointment. It’s something we wanted to get done early on, as her diagnosis has some issues with calcium and teeth growing. But so far so good! She’s got 4 teeth now!