On March 20th, Emma had a big day. The orthopedic doctor had told us from her x-rays and MRI images that her spine has some pretty serious bending, turning, and sharp turns with scoliosis and kyphosis. When looking at the images it was very scary looking, as her spinal cord was being pinched. When we look back at it, her legs and feet aren’t moving as much as they used to at all. Now on the 20th, Emma was about to have a halo placed where they drill 10 screws into her skull. Then she will be in gravity traction where weights will pull on her head upward for a month. After that, she will have a spinal fusion done. This is to first lengthen her spine and get it as straight as possible, then fuse it together once it looks good. At this time, she will also have her achilleas tendon clipped in her feet and wear casts to help correct her club feet. This will all be done inpatient in the hospital. This day came fast! I was able to gown up and wear a hair net and take her back with the doctors to the OR. It was huge, white, and intimidating. I then held her hand as the anesthesia went into her system though the vent. It was a very nerve-wracking hour and 45 minutes. We talked to the doctor afterwards and all went well! We were then told the pager we were given would let us know what room she would be in. 45 minutes later and no call. I finally was able to track down a room number in the ICU. When we got to her room, she was still asleep, on the hospital bed, complete with leg casts, the halo, and a series of ropes and pullies- the traction. The first thing we noticed was that she had a neck! The traction was helping her stretch out. The second thing was that she looked much taller, leaner, and a toddler now- also from the traction. The next 4 hours were rough- she was so angry waking up and nothing was helping. She was in pain and was scared. She went between crying and screaming to sleeping every half hour or so. That whole day she was not herself. It was a little worrisome as she wasn’t moving her hands, arms, and legs. It took a long time, but right before bed she finally tried to hold a toy. The hardest part of this hole thing is when she cries, she will put her hands out for me to hold her. I can’t pick her up with the traction. I have to comfort her in other ways- mostly I lay there on the bed next to her. I can’t wait until I can hold my baby again. It will have to be for at least a month and a half until I can. This will be VERY tough, but we got this. I can be strong and have faith that Emma will be healed with this. It’s either this, or that she will be paralyzed.

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That first night was very rough. Dustin had to work the next day, so he had to leave that evening. Emma didn’t fall asleep until 11, and even that she was waking up and screaming. I finally climbed into my bench bed at 12:30 am, the nurse tells us a very sick kid from the ER needs our room, and we need to move rooms. It took a while to re-pack, and to get everything in the other room. I went to sleep at 2 am. Emma was awake and angry from 4-6 am. What a night. At least it gets better.

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The room that we moved to wasn’t at our regular “floor” that we were at last time. It was the rehab unit, since orthopedics is Emma’s main doctor right now. It is so different! The rooms are “homier”, but a lot smaller. Especially with Emma’s big traction bed. The good side is that the nurses and staff are super easy going, especially now that we have been home, they want us to feel more independent. The bad side is that the parent bench/ bed is not tucked away in a corner or doesn’t even have a curtain. The night nurses and RT’s can watch you sleep, and are standing right next to you. Especially awkward when Dustin is here and we have to squeeze to fit on the bench/ bed. But it seems that everyone is used to it here. Overall, I like the feel of this unit a lot. It’s a lot quieter and lower key.

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The second day post-op was just as exhausting. Since Emma and I didn’t get any sleep the night before, it was like walking through a cloud. She was a little out of it and still very sleepy, and only gave us half smiles. We had to work for those smiles too! The ortho team came to raise the weights on the traction on the bed to 5 pounds (the max amount for her bed). She even was able to sit up! A physical therapist came with this tiny wheelchair, set up with a weights and pully system. She fitted it with foam and a seat belt so Emma could sit on it. The first time she sat in it she looked shocked. Then smiled. She absolutely loves her wheelchair! She can move her head a lot and see what is going on so much easier. We were told to get her in her chair as much as possible, as it is more effective for her spine than the bed.

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On day 3 post-op, Dustin was able to be here! It was nice not to stress and rush to get showered and food before Emma wakes up. He had me take a walk outside so I could just get some fresh air. He is so great to me! We also had someone from the hospital come and help us decorate Emma’s halo and casts and gave her more toys. She now has flowers on her halo and rainbow zebra print casts. She is styling!

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The fourth day started to feel like we are starting to get into a routine. I am already feeling the cabin fever and flashbacks from our time before. But what helped that was PT helped us take Emma on a walk around the hospital in her wheelchair! She had so much fun! Lots of smiles while we were walking (she missed moving around) and huge smiles when we took her to the fish tank. It was exhausting for her as she is still recovering, so she napped a while afterwards. Moving her to the wheelchair from her bed is a big deal. One person unclips the traction carabiner and then lifts her up, and the other person pulls up on the traction rope with the same 5-pound force. And then slowly we get her in the chair while keeping her straight and pulled, then hook the string back up to the wheelchair carabiner. It’s pretty stressful, but I am getting the hang of it. Moving her to the bed is the same way- her body has to be straight and in the exact middle of the bed, plus no lifting her hips up to change diapers. It took me a while to learn how to reposition and handle her, but it’s not bad.

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There was a lot happening the next day. She was off of narcotics for 24 hours! Her personality is finally back to her old self- the spunky, silly, playful, happy girl that she is. Everyone around here loves her. Everyone pops their head in to say hi and to see her sign “all done” and to give them a smile. She’s charmed everyone with her eyes and eyelashes, and people love her chunky blushed cheeks. She really is amazing. The only pain or discomfort she is having is during pin care- cleaning with q-tips around the halo pins. But even then, she is just angry for a second. She also finally got an uninterrupted nap today for the first time since her surgery- it was 2 ½ hours long! She really needed that. She even spent almost 7 hours in her chair today also and loved it! Right before bed that night, I noticed that Emma’s halo/ traction rope was loose and the knot is undone on one side. The doctor was able to re-tie it with a surgeon’s knot while she was sleeping.

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On day 7, she was at her maximum traction weights- 5 pounds in bed and 10 pounds in her wheelchair. She still loves it! The more weight we put on, the bigger the smiles and excitement, and when we put her in her chair, she gets so happy! We were told it feels good and releasing to kids using the halo. Plus, she can move her head without restraint and doesn’t have to support it, as it is all being held up. She can play easier sitting up and can see everything too. We were also able to take her outside for the first time. She really had fun with that. Super hyper and smiley. We took her to the outdoor play area by the playroom so there were lots to see. The last thing today was that she got some more x-rays. We were able to see them afterwards, and it is already looking straighter! This is turning out to but so much more positive than I had thought! I was thinking she would be in pain and so uncomfortable, but she is having the time of her life. Emma is amazing!

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From days 18 to 24, it was just going through the long haul. It got really monotonous. We tried to walk around and get out of the room as much as we could. Since there is a huge construction project going on at the hospital, there are lots of patios closed. At one hallway/ skybridge, you can see the construction very well. Emma likes looking at all of the diggers and cranes working in the big pit. We also found out that Emma LOVES elevators. When we sit her right in front of the doors, she gets so excited to see them close and open, then be in a new place. It’s been hilarious to watch her reactions.

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Our orthopedics team, especially one named Brenda (ADA- Edna from the Incredibles movie as she looks exactly like her), is really great to Emma. She absolutely adores Emma. Plays with her, gives her stickers, and even took a picture with her. This week, she gave Emma an Easter basket, as Easter is only 2 days after her spinal fusion, and she probably won’t be in the mood for playing. Emma loves her basket of eggs filled with little toys. The doctors here are amazing. Later that day, we were just playing with Emma and we heard something hit the floor. Her left cast just fell off her leg! We paused for a minute in shock. It was actually pretty funny. We tried to keep her foot still, but she liked being able to move her foot around. Finally, the doctor came by and fixed it by cutting the cast, wrapping her foot up under it, and over the cast. Crisis averted!

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The next day, we noticed that her trach dressing was bloody, which she has never had. We did trach care early, and sure enough, lots of fresh blood. Very confusing as we didn’t suction blood or didn’t see any cuts. It has never happened since, so it was really puzzling. Although, for the last couple of days, her halo pins have gotten very bad. Dripping blood, splitting skin, discharge, and lots of pain. We finally found an ointment that helps it greatly. Now it’s just an angry looking area. It’s normal they told me. But wow, it is tough to do pin care morning and night. I hate it. It puts Emma through pain, plus it made me squeamish at first. We are hoping we can hold her soon, as her spinal fusion is in 3 days. We are getting pretty excited, and the surgeon is too. The difference in the before and now x-rays are amazing. She still has curvature of her spine, but it is SO much better. I can’t wait to have it fixed and to get these casts off, then getting AFO casts. On day 30, the nurses surprised Emma with her very own Seattle Children’s badge. It had its own branded lanyard, a card with “Princess Emma” on it, and her picture. It was so special!

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We are now on day 31: April 19th- her spinal fusion! Her biggest day yet! Everything has been building up to this day. We were told it was going to be at 11 am, then got pushed back to about 2 pm, then BAM! It’s in 10 minutes. We were transferred to the pre-op room first, where we waited and talked to Dr. White, the orthopedic surgeon. They also cut her casts off now, as they need to measure her feet in the OR for AFO’s (ankle/ foot orthotics). That was weird to see both her feet for the first time since her tendon clip. They looked just a little different. Then, they said it was time- I got to wheel her in the traction wheelchair with the OR nurse to the room. The OR had 3 big TV screens zoomed in on her spine x-rays and MRI imaging. I helped lay her down on the operating table. I stroked her hair and told her I love her as they put the anesthesia gas though her circuit. Once se was asleep (maybe 20 seconds later!), I took her ears off and went back to get Dustin and take off the temporary scrubs. I didn’t feel anything right then. Nothing. We went up to her room and packed up everything. Then took all our belongings down to the car as a “storage unit”, then we had lunch. Afterwards, we still had time to spare, so we waited in the nearest waiting area for a good 1 ½ hours. I still didn’t feel anything- no nervousness, scared, dread, anxiety. Just void. Void and peace. Dustin felt the same way. We just really wanted to see Emma. It was a blessing. The Lord helped us feel calm during this huge surgery. After 4 ¼ hours since I saw her, the surgeon came out to talk to us. He said that it went really well. He scuffed up the spine (C3-T3), fused it with cadaver bone, and put the vest/ rods on her halo. It was tricky, as she had to be on her stomach for the surgery, so they had to intubate her though her trach stoma. He said that her spine held the lengthening, even with the traction off. Another miracle happened too. She gets spinal cord monitoring every time she is under, which means small electrical needles are placed on muscles and nerves throughout her body. Multiple times throughout the procedure, they send stimulus to different areas, and see what information comes back. It’s to prevent her spinal cord from paralyzing her. Dr. White said that when he placed the halo/ traction a month ago, her legs weren’t sending much signals, meaning her spinal cord was being pinched and slowly paralyzing her legs. He said during this time, at first her legs showed more feedback. By the end of the procedure, he said they were firing like crazy! Such a miracle. It gives me chills whenever I tell that story. We then were given the room in the ICU where Emma was at. We got there, and she was still sleeping. The bars on the halo/ vest were a lot wider than we thought. But we are so glad that the fusion went well.

That night in the ICU was VERY exhausting. Emma would wake up every 10-15 minutes, either uncomfortable, or super angry, but would calm down if we touched her- she was so out of it. She wouldn’t move at all and when she opened her eyes, they were unfocused. We had to sit right by her side the entire night, so Dustin and I traded off. One hour of sleep and one hour of Emma Duty. She also kept getting her vitals taken every 2 hours, plus IV flushes, meds, etc. When we did try to sleep, it was impossible. The ICU is so loud- constant beeps from our room and others, the lights are bright, people always coming in and out, and lots of talking. We didn’t get any sleep and neither did Emma. We were walking zombies. Emma did calm down a little after 2 am when they stopped her sedation medication.

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The first day after her fusion, we spent getting Emma more awake. She still refused to move or have any emotion. I’m sure she felt terrible. By noon, she was able to start Pedialyte in her g-tube. By 4 pm, we were able to move out of the ICU and back to the rehab unit. Yea! We were already packed and ready to go. We ended up in a room 2 doors down from where we were before her fusion. When we rolled her bed down the until, all the nurses said “Welcome back Emma!” and “Yay, we have her back!”. There was even a note on the white board saying “We missed you Emma!”. The room was a double room, but we didn’t have to share. We even had a window (and it wasn’t covered like the last room). It was neat watching the construction in the time we were there. Plus, the sun coming in helped too. The rest of day was spend just relaxing, sitting by her side, and trying to keep her comfy. She tried to lift her arms to play with some toys, but it didn’t last long.

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Post-op 2 was Easter- it was a rough day for everyone. Emma had a bad pain day today- was crying and super angry. Nothing was helping, even pain meds. It lasted for a couple of hours until she had a small nap. Just as I was about to take a nap too, I had visitors from our church. They sincerely asked how I was doing, and I broke down. I was exhausted, stressed, worried about Emma, hungry (I couldn’t leave the room to eat, or she would scream silently), I missed Dustin (as he couldn’t be here today), and it was Easter. It was supposed to be a good day today! It was a little embarrassing crying in front of them, but I’m sure they understand. Later that day, I felt my Heavenly Father lift me up a bit. This is the hardest part of our whole halo experience. Right now. If this is it, I can do this! Emma stared to wake up and smile at me! She also started to play some too. The nurses also said I could hold Emma! It was the first time in 33 days. It was amazing, although really awkward. I had to have a pillow under the bars but above my arm, and she had to lay on my lap. But it was nice, for both of us. We also got to finally sit her up since her surgery, in a high chair. She really liked that. She missed being able to site and see what was happening, as she couldn’t turn her head or body. Plus, being able to play in the highchair makes things so much easier for her.

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Day 35 was a very special one. We were approached a couple of days ago by the hospital’s patient ambassadors and they said Emma was nominated to help with their advertising. She could be on their media, print, billboards, busses, videos! We said yes! We gave them Emma’s story and some pictures. Well, today, we were told they had a surprise for her. They told me a little of what was going to happen, but not much. A reporter from the local FOX news came in with his camera guy and asked me to tell a little of Emma’s background. He also asked about Seattle Children’s and I told him how they are like family now to us, and how great everyone is. He then brought out a small package for Emma. It was filled with princess things- tiaras, braided hair clips, necklaces, jewels, silk gloves, and wands. He filmed as I gave Emma each one to put on. She had fun with all her new toys. When she was ready, in walks Rapunzel! She looked straight from Disneyland, from the movie Tangled. She spent a good 15-20 minutes playing with Emma, singing, talking, sharing stories, all on camera. She was great. She acted and looked just like a Disney princess, and was very good at interacting with kids too. Once Emma was starting to get tired, Rapunzel brought in everyone. And it was really everyone! All the nurses from the rehab unit, the charge nurses, the RT’s, the CNA’s, the doctors from all her teams here, the Fellows, and Residents. Thank goodness we had a double room to ourselves as we would not all fit! They were all wearing tiaras and had little wands. They told Emma that it’s a princess party! Just for Emma! It was so amazing and touching that everyone got together to do this for Emma. They really go above and beyond. Even serious Dr. White and Dr. Broud had a tiara on. After a couple of pictures and more interview questions, the party, including the princess and FOX news, left. They told me the news story would air on TV and online in a couple of weeks. We are excited to see it!

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Later, after her princess party, we finally solved the problem of how we are going to take her home. We have been working on this ever since she had her surgery. We tried a couple of different options- car seat types, EZ vests, different straps and pillows- and nothing fit. I was starting to worry. Finally, they pulled out an adaptive cushion for this one orthotic car seat, and it worked! A huge relief! It will be a little complicated as the car seat straps have to come all the way out of the seat, threaded through her halo, then back into the car seat. It will be a long process in and out of the car, but we have no other option.

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The following day, we had a shock with one of our home nurses. We had just told our two nursing agencies that we would be going home later this week, and they said that our day nurse decided to stay at her “temporary” job and not come back. It was pretty frustrating, as the agency didn’t give us a reason in their email and left it at that. They didn’t seem apologetic or even mentioned trying to find us a replacement. I also thought that the nurse and I had a good and open relationship, so I felt almost betrayed. Emma in her halo coming home will be hard enough, but now we don’t have a day nurse. And I have a job that I don’t know I can continue, plus I can’t take Emma now to any doctor appointments, as we need two people. Thankfully, I have a wonderful sister-in-law that can help and an understanding boss. Later that day, I also heard that one of our night nurses had surgery, and will be out for a couple of weeks. Well, we will be coming home with no day shifts covered, and only two night shifts covered. When it rains, it pours. Who needs sleep anyway?

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On April 25th, we found out that morning that the doctors have approved us to go home! Only 5 days after her spinal fusion! This hospital stay only ended up being 37 days, which isn’t too bad. On the morning of discharge, we had a special meeting. Through a series of perfectly timed events and communication, we were able to meet another girl with Campomelic Dysplasia. Their family is from Montana, and just happened to have a clinic appointment, just hours before us leaving for home. The girl, Chloe, was so cute. She and her super nice parents gave me her background story. It sounded EXACTLY like Emma’s- with the timing, what happened, even down to the vent settings. She had a halo and a spinal fusion too, and you couldn’t even see the pin scars on her forehead. It gave us hope, as Chole was walking, talking, eating, and was getting her trach out soon. And she is 10 years old! Super neat. I also can’t help but to think it was another blessing from Heavenly Father. So many miracles.

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Once Dustin arrived, we packed up, and took her home! It was around 2 pm that day, so traffic wasn’t too bad. It took us about 15 minutes to get her strapped into the car seat and loaded up. Finally, we were home! We laid her on the couch and she just looked around. She knew where she was, but was a little weirded out as it probably felt very diffident to her. That night was rough, but so much better than at the hospital! She loves being home.