Getting her Tracheostomy & Her Hospital Stay
On the day before her tracheostomy procedure, she had a PICC line put in. I crammed in as many holdings and snuggles that day as I could, as once she gets her trach, it will be about a week before I can safely hold her. Finally, the day arrived, August 10th, her tracheostomy day. The doctors came in at 7 am to get her ready for transport to the OR. They rolled her out of her room as we gave her one last kiss. We waited in the lobby for 1 hour and 45 minutes, trying to keep each other distracted. I was really nervous, and not quite sure what to expect. I knew that it was a relatively simple procedure too, so I wasn’t freaking out. Finally, the surgeon came out and said that it went just fine. It took a little longer than expected because of her short neck (or lack of a neck), but they made it work. He told us we could go back to the room in a few minutes, as they were getting her settled. When we got in her room and saw her at last, there were so many different feelings. I was so happy to FINALLY be able to see her whole face, as I have never seen it in entirety before. It was covered up with tape and tubes squishing her cheeks together. It was actually shocking, as she is a completely different looking baby. I honestly struggled for a day or two, as she didn’t look at all like the Emma I knew, but this is how she was supposed to look! She was super cute, but pitiful, as her cheeks were very red and had some sores from the tape being removed, and the trach accentuated her small chin. She was also super drugged and out of it, I wanted to pick her up and hold her close. But, because of the tape being removed, she looked a lot bigger and chunkier! I was wondering where all the weight of her was going, as she is now 7 pounds. Now that the trach was in, she needs time for the open wound to heal. The team told us that in 7 days they will change the trach and look at how it was healing. In the meantime, she was to be sedated and heavily medicated, to keep her from moving around. That caused her to have a slack jaw, so her mouth hung open. She was also used to having it open because it had been open her whole life with the breathing tube in!
Throughout her first day with the trach, she had some struggles. She had a bad episode where they had to remove the ventilator tube and bag her trach to get her to breathe. It was very scary. After the incident she kept her eyes open. She was so medicated that she didn’t blink often, so her eyes were watering. It was heartbreaking. We even saw her have a slight grimace on her sedated face and a tear rolled down. It broke my heart and I couldn’t hold back the tears. I hate seeing her in pain, especially when she can’t tell us that she is. I let the nurse know, and she gave her more pain meds. After a couple of hours, she finally settled down and relaxed.
The next couple of days were still filled with episodes. The ENT team adjusted the position of her trach. The nurse and respiratory therapists spent all their effort in figuring out how to help Emma, with her breathing, heart rate, her secretions. It is really tough to watch her do this, but with every episode I feel both I and Emma are getting stronger. I feel like we are starting to figure out what she needs, with more suctioning or different vent settings. But later before bedtime one of those nights, Emma had a bad episode. She was not getting any oxygen at all, so the nurse had to bag her. After a while, she still didn’t get any better and we were losing her. The nurse pressed the call button- alerting all the nurses and doctors in the area to come help. They all rushed in within seconds. The unit coordinator came on speaker and asked if she needed a code blue called. At that moment, Emma let out a big sigh and started breathing again, rather roughly but getting oxygen. I wish we knew what to do!
Thankfully, most of the week she slept soundly. That Friday was her first trach change. They wheeled her off to the OR again, and in the meantime, we got a tour of the place in the hospital we would be move to after she is ready- the PICU. When we met with the surgeon, he told us that the scope and trach change went just fine. Everything was healing nicely. When we got to see Emma, she was still asleep but comfortable.
The day after her first trach change, the doctors started to wean her off of the morphine and sedative. They also played with her vent settings, as she needs to transition to the home vent which doesn’t have as sensitive settings. We were also told that the home vent can only work for babies at 11 pounds minimum, but we could still try and see where she was at. That day we also did her first trach care- when they change and clean the dressings and ties around her neck. It was very scary and hard to watch, as Emma cried and hated the trach being touched. This will happen daily, so she better get used to it. Later, I was able to hold her for the first time in 2 weeks! I loved being able to have her close to me again. It took so long after her surgery to get stable. She was also able to get out of the NICU bed and into an actual crib! That looked so funny as she was so little.
The next week was busy. The team have been slowly weaning Emma off her pain and sedation drugs, and she didn’t like that too much. She was having a rough time with withdrawals. The whole day was filled with crying, fussiness, and just being uncomfortable. She was also very sweaty and kept going VERY high on her heart rate. The highest I have ever seen at 210 bpm. It was actually super scary as that could really hurt her. Once they determined it was withdrawals and put her back on low doses. They will be weaning even more slowly. One of the days they removed her PICC line also. We gave her a tub bath- her third one she’s ever had! She actually hated the baths, except when we didn’t mess with her. She loved the water being poured over her body and head. She also loves getting her head rubbed dry. She can be such a diva!
We finally were able to move out of the NICU and to the PICU! It is a lot bigger and nicer than the NICU, and we can sleep (on a fold out bench) and eat in there now too. There is a bathroom as well which is nice so we don’t have to leave the room. The first night was weird as I had to get up multiple times in the night to pump. Thank goodness there was a curtain between Emma and us. It is nice to be able to check on her whenever we wanted, but we couldn’t sleep at all. The nurses came in multiple times at night to do Emma’s cares, take care of alarms, her food, and anything else. I do like being here at all times now and not needing to leave.
When she was about 2 ½ months old, the pulmonary team wanted to trial her on the home ventilator- the Trilogy. Right now, she is at 8 pounds, and not the 11 that is required, but we wanted to see how she would do. She lasted 45 minutes. She went between breathing fine to rough and labored breathing multiple times. They took her CO2 levels and found that she was at an 80. They said that a safe maximum number is 60. It might take a while, but she will get there. At least now we have a baseline number to compare to.
A week later, she was still having withdrawals from the morphine and sedation meds. It was getting better, but then she decided she needed an even slower weaning plan. She was having tremors, sweating, diarrhea, and being very cranky. She responded quickly to the new regimen, even though her withdrawals kept coming back. She even had a bad withdrawal/ episode that the heartrate monitor said zero (I don’t think it was picking up a good signal though), but she was struggling quite a bit. They had to bag her twice to get her back up. That episode was so bad I, myself, had a panic attack and had to sit during it. I was not about to lose Emma to a withdrawal episode! She finally came back up, and we spent the rest of the day relaxing. However, her episodes continued throughout the night. I had to jump up after a dead sleep to alarms and she needed help from nurses. Didn’t get much sleep that night.
That week, we were able to put her in newborn clothes! It was so cute to see her in little onesies and not just swaddles. She hated putting them on, and it was tough to get them on with her circuit (tubes), trach, leads, and pulse/ oximeter, but we did it! We just had to get clothes without feet attached. We learned that snap-up onesies are the best! We had a ceiling projector with music that could put rotating images on the ceiling. She could spend hours watching the different pictures and colors moving around. One of the nurses put up a pillowcase that made it easier to see the pictures too. That week no changes were made. She just needed to grow and get stronger. These are one of the hardest days as no progress is being made and just sitting in the hospital with no end in sight. But at least she didn’t have an episode for a while.
Mid-September came, and Emma got a visit from Occupational Therapy. She had guided Emma’s hands to her hair and mouth, to get her to explore her body. It was funny, as she hated it at first, but then was confused and even amused. That week, she had the worst episode so far. It was a 2 hour long one. Her oxygen kept dipping down to low numbers and semi-recovering, all the while working really hard to breathe. Our nurse wasn’t sure what to do anymore, so she brought the charge nurse in. Thankfully she was really pushy and got our team of doctors to do something about this. That evening, the ENT team did a scope down her trachea. They saw that the trach tube needs to be longer to give her more support and pressure further down. The portion of her trachea below the trach was collapsing on itself, and she couldn’t open it back up. She was suffocating. The doctors had ordered a custom longer trach to cover that area, but in the meantime, they increased the pressures on her vent to keep her airway more open. I am so grateful that we had a nurse who wanted to dig into the issue instead of dismissing it, due to Emma’s age or the inability to see patterns in the episodes.
At this point in Emma’s hospital stay, we had decided that I needed to come home every other weekend. I have always resisted coming home, as I felt that it was my responsibility to be there for her, and if something were to happen while I was away, I couldn’t forgive myself. But I am becoming more affected by the stress of the hospital and I need the time at home for my sanity. It is hard being home, but at least I could call the hospital and find out how she is doing. It is really hard being out and about though. I hate seeing other babies. I see them drinking bottles/ breastfeeding, progressing healthily, being able to hold their heads up, to sit, and to see older kids running and talking. It’s hard not to look at other babies and not think of those things that she might not do for a while or not ever be able to do. It’s painful, but I have to remember to not compare, don’t look at what I don’t have. Be positive and happy that Emma is alive. She is happy and doing better each day. I try to look for the little “victories” to keep me going, especially living in this hospital.
At about 3 months, she was getting more alert, even though she is one month corrected. She still has long periods of being awake and sleep and is now starting to sleep better and longer at night. She smiles in her sleep when she dreams and tries to open her eyes, making her eyes roll back. It’s pretty funny and cute to watch her dream. She is definitely a drama queen too. Every time her nurses do her cares, she gets mad. She has a big reaction when she has a dirty diaper- a cute pouty face. When she is awake, she is alert and happy. She likes kicking her legs out and having her hands rest on her trach and tubes. She loves her hair being rubbed, but not a fan of being rubbed or touched elsewhere. She likes being held, as she goes right to sleep and cuddles into you. We also noticed she likes to sleep on her left side better, facing the vent. I think she likes seeing what is going on. She also loves music! We played classical music on our phones and she sleeps. We were also able to get on the music therapy list! A musician comes once a week and plays his ukulele, harmonica, and sings to Emma. That was neat! Emma wasn’t quite sure what to think. They were also able to bring me a keyboard, as I could play the piano to her too! Seattle Children’s is pretty amazing.
At the end of September, her custom longer trach came in, and the doctors put it in. The switch was really fast and easy. It was weird to see her stoma (trach hole in her neck). All that day she was doing really well without any episodes! Halfway through the day though, I noticed that she wasn’t making any more sounds. No more small cries, no more coughing or sneezing sounds, or fussing sounds. We found out that this is how the trach should be- all air in and out through her trach, not her mouth and nose. I was really disappointed and sad, but this was for the best. Emma is doing better. I am not sure when I will get to hear her voice again, if at all. We will see. I am just so happy that her episodes aren’t happening anymore! Absolutely amazing. That evening, one of the nurses was looking at her tongue tie, and she noticed she has a cleft palate! It is very narrow, and it only just barely cuts into the roof of her mouth (or the hard palate). I always knew I could see the feeding tube (through her nose from inside her mouth, but I didn’t think anything of it. She will have to have surgery in a couple of years to correct it, but for now they are letting it be.
A couple of days later, Emma had her second Trilogy home vent trial. She technically failed, but she did a lot better this time! Her work of breathing and CO2 wasn’t near as bad. The only thing keeping her back was that she is too small to really “trigger” the breaths on the machine. It couldn’t really detect her breathing, so it was out of sync and giving her breaths when she wasn’t ready. This just means more waiting until she is bigger. It was hard to accept that, as I just want her home. It’s okay though, I needed to be strong for Emma.
At the beginning of October, PT (physical therapy) said that Emma needed to be sleeping and laying on a foam wedge. It should help her open up her breathing and secretions along with being able to see what is going on. She also taught me different positions to hold Emma in- different directions to hold her upright, on her back on my lap, and on her stomach. It was really nerve wracking trying to position her with her trach and circuit, so it doesn’t come out or pop off. I loved feeling that she could try “tummy time” like she is supposed to. But she absolutely hated it and only lasted for 30 seconds. But we can do this now!
On October 3rd, Emma had her third home vent trial, but this time is was on a different vent, called the Astral. This vent is very new and the hospital staff don’t know a lot about it. It is a little more sensitive than the hospital vent and the Trilogy vent. She has a better chance on this one. Today she did fairly well! She didn’t stay on it as she got a little tired, but she could trigger the breaths! The doctors want to trial her in a couple of days to see if this will work. We shall see! Well, that day came, and the doctors switched her over to the Astral. We all waited around for about an hour, then she fell asleep! The doctors said they would come back in a couple of hours. And guess what?? She made it! She passed and was able to stay on the Astral vent. The doctors were amazed that she could even trigger the breaths as she is only about 9 pounds. They didn’t expect her to succeed, and they even said she is breathing better on this than on the ICU vent! A wonderful milestone! They want to keep her in the ICU for about a week before going to “the floor” of the hospital to make sure she can keep it up. I am so proud of our little, strong, fighter. That night was actually pretty rough for me. The vent is actually more sensitive to any pressure change, so it alarms when she takes a big breath, stretches, cries, stirs in her sleep, breathes too fast when she is awake or when she breathes to slow when she is deep in sleep. And the alarms are loud too (good and bad). I’m trying to figure out the beeps and her breathing patterns behind my curtain at night.
A couple of days after her switch to the Astral, we moved to “the floor” or the regular patient rooms. We are in a section of rooms where there are all kids with trachs, with or without vents, training to go home or waiting to begin training. The nurses here are a little more “hands-off” than the ICU and there are a little less of them. They even play with the kids more and have fun! It is a bit more relaxed here too- not many alarms and running around. Kids are here to stay until they go home, so there are a lot more “homier” things and the rooms are decorated. The nurses are also letting me do a lot of Emma’s cares by myself too even though our trach/ vent training doesn’t start until the end of October. The nurses have taught me to do in-line suctioning already so I don’t have to grab a nurse every half hour to do something so simple. One of the nurses let me do an entire tub bath by myself too! That was pretty fun. I feel like we are more at home instead of a hospital.
Recently, we have struggled with what our new normal will be like. We won’t be able to take Emma on hikes, or even go on any extended vacations because she will need more than just a babysitter. We don’t have the fun experiences like other parents do with learning how to eat, to crawl, to talk. She won’t be able to go on Disneyland rides. Her health limits her greatly, and in turn, us. It’s been tough trying to get her to milestones as she was born 2 months early, and with her trach and vent, and dysplasia. We still don’t know what she can do physically in the future or what our lives will be like. It has been hard to be positive this week as now we are just in the waiting game. But, as negative thoughts came in, the next days after have been more uplifting. I have felt peace regarding our future after multiple prayers. I received impressions that we need to live in the NOW, in the moment, and stop worrying about that stuff. We will deal with it as it comes. It gave me peace knowing that life is good and happy, regardless of what may happen in the future. No need to worry, as we have no idea!
One evening after we got to the hospital after being at home for the weekend, we found out that the nurse had to re-do the feeding tube (currently in her intestines) as the tape was coming off. They had to replace it 3 times, as each x-ray showed it curling up in her stomach. That was hard to see her gag so much to get it down through her nose. The next day, we trialed to see how she would tolerate the tube ending in her stomach instead, but she threw up. They had to push it back in. Maybe she will do better next time.
October 20th, was her 4-month birthday! It’s crazy that we have had her for 4 months, and that we’ve been here for that long. It also means that it’s time for her vaccines. I hated watching. Two nurses did two shots in both her thighs at the same time. She was sleeping and she jumped awake, crying. Ugh, but it needed to be done. They also did a trach change bedside. It needs to be changed every month. Maybe next month I will get to do it! Also, that week I was trained how to do trach care- cleaning the neck and stoma, and the changing of the ties and dressing. It’s pretty stressful, as her trach could pop out super easily, and when you put the ties on it feels like you are strangling her. But you have to do it pretty tight to keep the trach in. It feels good to now be able to be in charge of most of her care now. The next upcoming weeks were filled with our training. We passed off tons of things- simple and in-line suctioning, trach care and cleaning, and a couple of other small things.
Emma’s first Halloween was fun and a little different in the hospital. Her costume this year was a Dalmatian puppy. I took a white long sleeve onesie and socks and colored black spots and paws on them. She also had a black and white spotted headband/ bow to look like ears and a dot of black mascara on her nose. She was so cute! Everyone loved her when they came into her room. The nurses all dressed up too and there was a Halloween party for the older kids in the inpatient playroom. People also went around to the rooms to give away small pumpkins with faces painted on them. I also saw Russell Wilson and a team mate (from the Seattle Seahawks football team) walk by in the halls in costume as well- a French fry container and a hamburger. It was pretty funny to see.
In the first week of November was the season’s first snow! It snowed here at the hospital as well as Olympia for Dustin. It stayed for a few hours at least. I tried to hold Emma up to the window to see it, but she wasn’t quite sure what she was looking at just yet. Emma also had a visit from OT and we did some oral care. Emma is getting used to sucking on my finger, getting drops of breastmilk in her mouth, and she is able to swallow it some of the times. It is tough as she hasn’t learned how to really swallow yet, especially liquids, but we are getting there.
That week we were also able to get the okay to pull her feeding tube back into her stomach. She did great! Thankfully no issues at all, so the doctors wanted to do an upper GI. I helped the nurse and RT roll her crib and vent all the way to the Radiology Department on the other side of the hospital. They let me stroke her hair as the MRI machine was close to her body and as they injected the barium in her feeding tube. She did great and her stomach placement was normal, so we went back to her room again. She really loved being rolled around. Her hair was flying and her chubby cheeks were jiggling, and she was super happy and smiling the whole time. Oh, we love our little, happy girl.
Also, in the beginning of November, we did our first trach change as parents for our training. That was the most nerve-wracking part of her training, hands down. Dustin pulled it out and took off the tubes while I put a new one back in and Dustin re-attached her tubes. We did it! Hopefully it gets less stressful.
In mid-November, we discovered a vital part of Emma we didn’t know before. The doctors discovered that she has never had a hearing test, so she was able to get one. She was connected up to a couple of electrodes on her forehead and small headphones were playing different frequencies to her eardrum and brain. She had to be completely asleep for the entire 2-hour test, so it was a little stressful to get her to fall and stay asleep. We had to keep pausing the test for her to fall sleep. We found out that because of the cleft palate she may have fluid in her ears, or the other thought is that she has floppy ear canals, causing them to close up. Her hearing right now is categorized as “severe hearing loss”. They also did a hearing test in her inner ear and it came up with only a “very mild hearing loss”. We might need to get tubes in her ears or we might get a hearing device. We aren’t too sure yet. We got another hearing test about a week later to confirm the results and they were the same. We were told that the minimum she can hear is in the range of a blender or a loud vacuum. I just felt so bad for her, as I thought she could hear me this entire time. It was also a blow as it is yet another thing she has to deal with. Ugh. At least we are at a good hospital that can help tremendously.
A couple days after her hearing test, at around 1 am, Emma and I woke up to her alarm on her vent that kept saying “high respiratory rate”, even though she was breathing normally. The RT found out that the flow sensor chip in the vent needed to be switched out. Emma ended up being bagged without her vent for 1 hour! The chip broke so the back-up RT had to run and get another from a different part of the hospital, then that didn’t work. They had to bring the respiratory supervisor in and replace the entire vent and circuits. Then the vent wouldn’t calibrate. Emma ended up being okay now, but she was really struggling to breathe for that hour. I was on pins and needles hoping they could get it working again. Thankfully, she is okay.
At the end of November, Emma had what is called a Trach Safe procedure in the OR. That’s when the doctors try all the emergency airway recovery procedures and see what sizes fit and how well she responds. They also went a size up on her trach as she grew so much! They also clipped her tongue tie and tried to look in her ears. They were too small to even see inside of them just yet. Emma came back to the room groggy and sleepy from the anesthesia. Her tongue was white where it was clipped. It took them 24 hours before they could remove the IV in her head. The poor girl was poked 4 times in her hands and legs before they could finally get that IV in. She is just too chubby! That night was rough, as I let her sleep off the drugs during the day, so she was trying to wake up during nighttime. The next day, PT came by and taught me how to “exercise” her tongue and to push/ massage the clipped area so it won’t reattach. I hated that so much. Emma cried and squirmed as it hurt a lot. Good thing I only had to do it for a week.
Thanksgiving was a quiet holiday up at the hospital. We put Emma in this really cute outfit with a turkey on it, and with the words “my first Thanksgiving”, with an attached pink tutu. Super adorable! We even got ourselves a family picture. For our Thanksgiving meal, we went to our local church, as they were hosting a lunch for everyone. It had really good traditional Thanksgiving foods. I am so grateful we could do that!
At the beginning of December, Emma’s doctors wanted to trial her on a single circuit on her vent. Right now, she has two tubes going to the vent- one for inhale and one for exhale. The single circuit has both in one, making it a little more difficult to breathe, but it is the only way they can send kids home. I wasn’t sure how she would do, as it’s harder to trigger the breaths, but she did great! She is still on it and doing awesome. It’s a little louder than before, as the exhale has to come out through a port instead. Plus, you have to make sure nothing is covering that exhale port. It took me a couple of days to get used to the noise, but I’m actually glad we have it. I can really hear her breathing and it helps to monitor her.
Emma is finally beginning to smile! And not just in her sleep, but to us playing and talking. She LOVES looking at us upside down, from the other side of the crib, and gives us the biggest smile. She also loves to put small items and fingers in her mouth. This is really good for her development, as she isn’t eating through her mouth. She has fun rubbing her feet together and feeling them on textured blankets. She also has fun smiling at her cousins when they come to visit too. Super cute! This month, she was able to meet her first dog! The nurses asked if I wanted her to get visits from therapy dogs, and I agreed so it isn’t terrifying when Emma meets our chocolate lab, Luna. Her first visit was a cute dachshund named Leroy who loved looking at her and touching his nose to Emma’s arm. Emma wasn’t quite sure what to think of this non-human just yet.
On December 6th, Emma had a g-tube surgery. This is a stomach “button” or portal for food. She had to get an IV in her had (no head this time, yea!) and got into a cute hospital gown. They then wheeled her down into the Pre-Op area. We were able to be with her until they were ready to take her. We then gave her a kiss, then went to eat lunch, then back to an empty room. That was odd. About an hour after we sent her off, we got paged so we got talk to the surgeon. Everything went great and she was able to get a small, discreet size. After she got to the room, she looked great, but sleepy. 6 hours later, they were able to hook her feeds back up- through the new g-tube. That was weird to see the food go directly into her stomach. About 20 minutes before the nurse was going to take her ng tube out of her nose, I was watching Emma kick and grab at her hanging toys. Just then, she pulled out her tube herself! She decided she didn’t want to wait anymore. And just like that, we finally got to see her face in its entirety, with no tubes or tape! It was wonderful! Now she can really learn and grow with the use of both hands, and not having to have socks on them to prevent her from pulling the tube out.
The following day after her surgery, we set up Christmas in Emma’s room. We found a small fake tree and put little ornaments up, stringing lights around the ceiling perimeter, and hung Emma’s stocking. She just loves looking at her blinking Christmas lights! A couple of days after, the hospital had a volunteer photographer come and take pictures of Emma and I behind a Christmas light board. It waso have memorable pictures, but to also help “lure” nurses into wanting to be a nurse for our sweet girl. Almost all the pictures had her crying, as she didn’t want to sit up. But that was an accurate representation! The day was also her 6-month mark so it was fun to have pictures of that milestone. It has been a long journey so far. A day later, she was able to meet Santa for the first time! He came in when Emma was napping, so I picked her up and we took pictures. She wasn’t too thrilled to be woken up to a random bearded man, so it was pretty funny. That weekend, we went home and got Christmas set up there for Dustin as well, with a tree and everything. We listened to Christmas music white setting up, trying to be cheery. But it was still empty and sad. It was hard to be joyous for Christmas when you can’t have your baby with you, especially when it is her first Christmas. Dustin then had the brilliant idea to lighten our spirits- we will make our tree an Emma tree! We cut small pictures of Emma and turned them into ornaments, and filled the tree with her cute face. That really helped brighten our mood.
During mid- December, we finally finished up our training classes. One of the last classes we had was to take Emma portable for the first time. It took forever to get all of our “essential equipment” or emergency supplies together and to get everything unplugged. Emma loved the walk! We just walked with the trainer around the unit twice, until Emma started getting overwhelmed and fussy. Now we can take her for walks ourselves! We started taking her around the hospital, and we found out she loves the big fish tank in the cafeteria seating place. She has big smiles and follows the fish around with her eyes. The next class was our final “test”- a simulation class. Dustin and I took turns with the trainer in a simulation room with a simulation doll. It breathed, made sounds, and had monitor stats! Then after a few individual tries, we did some situations together. It was to see if we could correctly handle the situation well if Emma was having an issue. We just had to remember that communication is the key, and that it’s helpful to talk it through a loud. And boom! We are all trained to take care of Emma!
The week following our training, we were able to interview the home nursing agencies. We need to have them hire enough nurses to fill 24 hours for the first week, then 8-hour shifts during the day and the same at night after that. We had no idea there was a nursing shortage, so we were told it might take a while. I was told some kids have been here for years (years!!) waiting for nurses. Hopefully, that is not our case. But so far, it’s been a struggle. After about 2 weeks of waiting on the agencies, I took matters in my own hands. I want to take her home! I found 4 local city and county Facebook groups and posted a plea for any RN’s to help our little baby go home. I found the cutest pictures I could and listed the agencies contact info. In a week, we got 300 likes a so many responses and shares. Everyone was coming together as a community to help us- it was humbling. I was so grateful and touched. We had two RN’s contact the agency, and within 2 weeks after posting we had all of our nurses! We have passed our biggest discharge hurdle! We don’t have a discharge date yet, but hopefully soon.
Finally, Christmas Eve was here, and we were home for that. It was nice to have dinner with family, but it was very depressing. It was difficult to be happy, but family made it a little better. That night we went up to the hospital to spend Christmas Eve night and day as a complete family. That next morning, we woke up to a small present on Emma’s bed- a cute book for her! That was sweet. It snowed again today as well, making it a wonderful white Christmas.
The week after Christmas, Emma got her first cold. We were sure it was a cold, but the doctors were still not sold on the idea. It took them a couple of days, but eventually she tested positive for the common cold. It was miserable for her though. She couldn’t sleep, just coughing, her eyes watering, nose running, and had a slight fever. There were two nights in a row that she only slept two hours total, and I just rocked her through the night. Her breathing was so wheezy, so she had to have scheduled breathing treatments. Finally, about a week and a half later after her cold, she was back to her baseline, so the doctors took her off of isolation. We could go on walks again!
By the beginning of January, we started to figure out another reason why she was still having small episodes, even with the longer trach. We found out that they stopped when we had elevated Emma and had her tubing slope down to the vent to drain the water out. The water was draining into Emma and essentially drowning her! We decided to disconnect and put the circuit through the crib rails and that helped tremendously. We still had to disconnect and shake out the water often, but at least we know what to do! It was a relief to figure that out. We had to fight the safety department to get them to allow the circuit through the rails, but eventually they understood.
In mid- January, Emma got her first taste of purees! OT helped me feed her a drop of carrot purees on her finger, and let her stick it in her mouth. She kept sucking her finger she loved it so much! She was getting that small drop all over her face. It was pretty cute. This wasn’t for volume, nutritional value, or even textures, just for a taste other than breastmilk. We are still working with her to get 1 ml of milk down her mouth with the binky trainer/ syringe. Her record for 1 ml of milk is swallowing it in 7 minutes. We’re getting there! She has also learned some new things about what she can do. She picked up blowing raspberries and bubbles! It is super cute and she is doing it all the time now. It shocked the doctors, as this means she is breathing a small amount out of her mouth and nose- rare for a trach baby. Go Emma! She was also able to taste two new purees in the next week- apple sauce and banana. She liked the apple one better, but we get the most smiles when she eats her carrots. She also learned she has a little head control- she will shake her head “no” repeatedly at times for fun. It freaked us out at first, but she is just learning more about what she can do.
By this time, the PT team and I decided that Emma needed to wear a head-shaping helmet. She’s just been on her back too long in the hospital. The orthotics team came to her room and took a device that laser-scanned her head shape. Just in case that didn’t pick up everything, they took a plaster cast as well. It was tough for her to sit up that long. I don’t want her to get a helmet, but it’s got to be done now, while her head is still relatively soft. And it’s only for a couple of months. Plus, they can order it in pink!
Emma’s first Valentine’s day was fun! She was looking cute in her pink and purple lace/ polka dot dress with a big heart on the front. Everyone adores her- and how couldn’t they? She really is the cutest. Dustin isn’t here, which isn’t ideal, but we will be together soon. I decided I would do something for Dustin since he isn’t here. I laid her on this fluffy blanket with paper heart cut-outs. I wanted to take some cute Valentine’s day pictures of her. I wanted to have a kiss mark on her cheek, but didn’t have any lipstick. One of the nurses suggested I go to the cafeteria, buy some red crystal light, mix the powder with a little water, and kiss her with that. It worked! They were such adorable pictures and Dustin loved them. Emma even got her very first valentine in the mail through the hospital- from her great grandparents. We also finally have a discharge date finally! February 27th- only 2 weeks away! Oh, I cannot wait to take her home!
That weekend, Dustin and I did our room-in tests. The hospital had us to them separately. We were in charge of her care for 24 hours, no nurse help at all. It was easy during the day, but terrible at night. I tried to coordinate my pumping with her vent checks, meds, and feeds, but I ended up not getting any sleep. I have a new gratitude towards our home nurses, especially our night ones! That following day Emma did her car seat challenge. She had to be in her car seat without any medical interventions for the length of the drive home plus heavy traffic- 3 hours. She did great! It is exciting to check off another box to go home. Later that week, we had her final trach safe. She had to still go under anesthesia in the OR and have an IV. It was another rough night, but I’m glad that she is safe and we are one step closer to going home. The day after, she got her RSV shot and handled it like a pro. She is really amazing as she is getting stabbed so much in here. She gets blood draws 3 times a week too.
The day before discharge was insane. We were having vent issues. The home vent from our home equipment supplier had slightly different circuits from what the hospital is used to and no one (not even the supplier) could set it up correctly. Plus, Emma had some breathing issues when she tried out their circuit. It took LOTS of trial and error with the RT’s and doctors but we think it should work. She was on it for 3 hours and did okay so hopefully this works out. Later, her helmet came in! She was custom fitted to it, and I was instructed on how to use it when we get home tomorrow. I also had to run to the pharmacy at the other side of the hospital to pick up her meds before we left, along with packing up all our stuff. We really had a lot, as we lived here for 8 months! I was expecting things to be hectic today though. But we are almost home! I never thought it was going to come. I am extremely excited but also super scared and nervous. How is Emma’s health going to be? She’s never known anything but the hospital. How is it going to be living with a stranger in our house (nursing)? How are we going to learn how to take care of her at home? How is Luna (our dog) going to react, but more importantly, how is Emma going to react to Luna? We will just see tomorrow. I am so excited to be a whole family together at home for the first time!
