It was one year (and one week) ago that we brought our youngest daughter home from the hospital. We have shared our journey with you through this blog and we last shared Eliana's story on her Gotcha Day back in October. This past week, my memories on social media have been flooded with our first days at home with Ellie and I have been reminiscing on this past year with our baby girl. This has been a year of watching our baby girl fight to get healthy; a year of watching our two big kids thrive in the roles of older siblings to a sister with different needs and abilities; a year of some of the most difficult and scariest moments of our lives; a year of having our love for all of our children multiple beyond our wildest imaginations; a year of celebration and learning to just take each day as it comes. Since I have been all up in my emotions the last few days, I wanted to share some thoughts on this past year here, so that a year from now I can look back. I don't want to ever forget this first year, our Ellie's first year as a Tant.
Those first few weeks with Ellie at home were kind of a blur. We spent most of our time getting used to having a baby in the house again - getting used to feeding every few hours, being up multiple times a night, changing what felt like a thousand diapers, and giving oh-so-many meds. I was sleep deprived and trying to learn how to be a mom to 3 kiddos while Aaron was becoming more and more of my hero every single day. I can remember specifically one morning after a particularly long night crying because I was so tired and Aaron sent me back to bed and took both the big kids to school. There was quite the learning curve in those first few weeks, and little did we know in those early days how much our lives were going to be changing very soon.
A few weeks after we brought Ellie home we had our first appointment with Ellie's cardiologist, a woman who I have grown to absolutely love. It was at this appointment that we learned more about all of baby girl's underlying health concerns, the main one being that Ellie has pulmonary hypertension in addition to chronic lung disease and a congenital heart defect. We would learn over the following weeks that our baby girl was much sicker than we realized leaving the NICU. At points in those early days, it honestly felt like we were not fully prepared to care for our girl or to recognize when she was struggling. We had accepted that Ellie was going to just have low oxygen saturation (sats) levels and that she was always going to be small. We thought things were as good as they were going to get, not realizing that better was possible.
At that first cardiology appointment, our cardiologist pointed out all the signs that Ellie's pulmonary hypertension was causing problems - she was bobbing her head with every breath, doing deep belly breaths, and pulling with each breath right at her collar bone. No one had told me before that these signs should raise concern, mainly I had just been watching to make sure she didn't turn blue. Our cardiologist told us that she wanted to start Ellie on a pulmonary hypertension medication and that we would need to spend a couple of days in the hospital while they monitored her for potential side effects.
So we prepared for our first hospital stay since bringing Ellie home. We knew that we would be going in early in the morning to do a diagnostic heart cath and then would spend 3 or 4 days in the hospital before going home on the new medication. The first couple of days went as planned, but then we started noticing the concern of the doctors and nurses. Ellie's sats kept dropping and although we were telling everyone that this was normal for her, the cardiology staff was growing more concerned. Eventually we were moved from the progressive care unit to the cardiac PICU and we would stay there for 23 days.
It took over a week for Aaron and to fully grasp and understand just how sick Ellie was. We were struggling with why the doctors wouldn't let us go home. Honestly, we felt like the doctors were overreacting. It is crazy looking back how I thought I knew more than the medically trained professionals, but oh well. The doctors were so patient with us, one of them even taking the time to create a powerpoint presentation with visuals to explain Ellie's chronic lung disease and pulmonary hypertension so that we could be Ellie's best advocates.
The moment that it really sunk in for me just how sick our baby girl was happened the Friday before my sister-in-law's wedding. I had left the hospital for the first time in close to 2 weeks to attend an event the night before with Aaron and was bringing my mom back to stay at the hospital with Ellie while we attended the wedding in Nashville. My mom and I walked into the PICU to see two nurses in full PPE (personal protective equipment) working on Ellie and I could see a lot more equipment than had been in her room the day before. I looked over at the Nurse Practitioner sitting at the nurses station (whom I was on a first name basis with) and asked her what had happened. In the early morning hours Ellie's O2 sats had dropped and they couldn't get them back up so they had to put her on a more invasive machine to help her breathe. It was so scary and I remember going out in the hallway to call Aaron and absolutely sobbing so hard I couldn't get words out. I realized for the first time that our baby was very sick and that her life was very fragile.
We began to suspect that Ellie was aspirating on reflux, so the decision was made to put in a feeding tube the following week. That one decision ended up being the best decision we have made for our daughter's care. Within a week of the G-tube surgery, Ellie was gaining weight, maintaining healthy O2 sats, and showing overall improvement. Ellie had been working so hard to try and eat and then the reflux was making her gag and causing damage to her lungs, that her sweet little body just couldn't recover. A week after Ellie's surgery, we finally left the hospital.
Unfortunately, we would not be home for long. We left the PICU just a few days before Mother's Day and we were back in the PICU at the end of May. Aaron and I took Ellie to her cardiology follow up appointment and during that 90 hour ride to Lexington, Ellie's O2 sats kept dropping and we just could not keep them up, even with increased oxygen levels. It became clear that something was wrong and I told Aaron from the backseat that they were probably going to admit us to the hospital. When we got to the cardiologist office, they took us back to a room fairly quickly and put us on one of the doctor's oxygen tanks to help save our reserves and it took less than 30 minutes for the doctor to tell us that we needed to go over to the hospital. We ended up spending 5 days in the cardiac PICU during this stay, in the same room we had been in just 3 weeks earlier. We realized that Ellie's lungs tend to stay very wet, which makes them work less efficiently, so we have to give her just the right amount of diuretics to keep her lungs happy and we spent those 5 days finding that balance.
When you spend close to 30 days in the PICU you get to know the doctors and nurses REAL WELL. I am on first name basis with most of the nurses that work the PICU and I consider myself friends with many of them - so much so that when I see them I ask how their significant other is doing, how their vacation went, and if they got that gift the really wanted for their birthday. I have come to love and respect several of the doctors in the cardiac PICU. I never realized how much it matters to have doctors who truly listen until I had a child with several specialists. The doctors in the cardiac PICU have been so incredible - they have listened to me (sometimes just to vent and cry), they have taken the time to not only explain diagnoses and treatments, but to also make sure that I am 100% on board with said treatments, and they have taken my daughter's condition seriously and taken the time to calm my fears. I mean it when I say the University of Kentucky Children's Hospital cardiac PICU team are my people and I love each one of them with all my heart.
Ellie came home at the beginning of June and we began a glorious summer and fall full of firsts: Ellie's first trip to the beach, Ellie sitting on her own for the first time, Ellie's first Halloween, Ellie's first Thanksgiving, Ellie's first birthday, and of course the best day of all, Ellie's Gotcha Day.
Those first few weeks with Ellie at home were kind of a blur. We spent most of our time getting used to having a baby in the house again - getting used to feeding every few hours, being up multiple times a night, changing what felt like a thousand diapers, and giving oh-so-many meds. I was sleep deprived and trying to learn how to be a mom to 3 kiddos while Aaron was becoming more and more of my hero every single day. I can remember specifically one morning after a particularly long night crying because I was so tired and Aaron sent me back to bed and took both the big kids to school. There was quite the learning curve in those first few weeks, and little did we know in those early days how much our lives were going to be changing very soon.
A few weeks after we brought Ellie home we had our first appointment with Ellie's cardiologist, a woman who I have grown to absolutely love. It was at this appointment that we learned more about all of baby girl's underlying health concerns, the main one being that Ellie has pulmonary hypertension in addition to chronic lung disease and a congenital heart defect. We would learn over the following weeks that our baby girl was much sicker than we realized leaving the NICU. At points in those early days, it honestly felt like we were not fully prepared to care for our girl or to recognize when she was struggling. We had accepted that Ellie was going to just have low oxygen saturation (sats) levels and that she was always going to be small. We thought things were as good as they were going to get, not realizing that better was possible.
At that first cardiology appointment, our cardiologist pointed out all the signs that Ellie's pulmonary hypertension was causing problems - she was bobbing her head with every breath, doing deep belly breaths, and pulling with each breath right at her collar bone. No one had told me before that these signs should raise concern, mainly I had just been watching to make sure she didn't turn blue. Our cardiologist told us that she wanted to start Ellie on a pulmonary hypertension medication and that we would need to spend a couple of days in the hospital while they monitored her for potential side effects.
So we prepared for our first hospital stay since bringing Ellie home. We knew that we would be going in early in the morning to do a diagnostic heart cath and then would spend 3 or 4 days in the hospital before going home on the new medication. The first couple of days went as planned, but then we started noticing the concern of the doctors and nurses. Ellie's sats kept dropping and although we were telling everyone that this was normal for her, the cardiology staff was growing more concerned. Eventually we were moved from the progressive care unit to the cardiac PICU and we would stay there for 23 days.
It took over a week for Aaron and to fully grasp and understand just how sick Ellie was. We were struggling with why the doctors wouldn't let us go home. Honestly, we felt like the doctors were overreacting. It is crazy looking back how I thought I knew more than the medically trained professionals, but oh well. The doctors were so patient with us, one of them even taking the time to create a powerpoint presentation with visuals to explain Ellie's chronic lung disease and pulmonary hypertension so that we could be Ellie's best advocates.
The moment that it really sunk in for me just how sick our baby girl was happened the Friday before my sister-in-law's wedding. I had left the hospital for the first time in close to 2 weeks to attend an event the night before with Aaron and was bringing my mom back to stay at the hospital with Ellie while we attended the wedding in Nashville. My mom and I walked into the PICU to see two nurses in full PPE (personal protective equipment) working on Ellie and I could see a lot more equipment than had been in her room the day before. I looked over at the Nurse Practitioner sitting at the nurses station (whom I was on a first name basis with) and asked her what had happened. In the early morning hours Ellie's O2 sats had dropped and they couldn't get them back up so they had to put her on a more invasive machine to help her breathe. It was so scary and I remember going out in the hallway to call Aaron and absolutely sobbing so hard I couldn't get words out. I realized for the first time that our baby was very sick and that her life was very fragile.
We began to suspect that Ellie was aspirating on reflux, so the decision was made to put in a feeding tube the following week. That one decision ended up being the best decision we have made for our daughter's care. Within a week of the G-tube surgery, Ellie was gaining weight, maintaining healthy O2 sats, and showing overall improvement. Ellie had been working so hard to try and eat and then the reflux was making her gag and causing damage to her lungs, that her sweet little body just couldn't recover. A week after Ellie's surgery, we finally left the hospital.
Unfortunately, we would not be home for long. We left the PICU just a few days before Mother's Day and we were back in the PICU at the end of May. Aaron and I took Ellie to her cardiology follow up appointment and during that 90 hour ride to Lexington, Ellie's O2 sats kept dropping and we just could not keep them up, even with increased oxygen levels. It became clear that something was wrong and I told Aaron from the backseat that they were probably going to admit us to the hospital. When we got to the cardiologist office, they took us back to a room fairly quickly and put us on one of the doctor's oxygen tanks to help save our reserves and it took less than 30 minutes for the doctor to tell us that we needed to go over to the hospital. We ended up spending 5 days in the cardiac PICU during this stay, in the same room we had been in just 3 weeks earlier. We realized that Ellie's lungs tend to stay very wet, which makes them work less efficiently, so we have to give her just the right amount of diuretics to keep her lungs happy and we spent those 5 days finding that balance.
When you spend close to 30 days in the PICU you get to know the doctors and nurses REAL WELL. I am on first name basis with most of the nurses that work the PICU and I consider myself friends with many of them - so much so that when I see them I ask how their significant other is doing, how their vacation went, and if they got that gift the really wanted for their birthday. I have come to love and respect several of the doctors in the cardiac PICU. I never realized how much it matters to have doctors who truly listen until I had a child with several specialists. The doctors in the cardiac PICU have been so incredible - they have listened to me (sometimes just to vent and cry), they have taken the time to not only explain diagnoses and treatments, but to also make sure that I am 100% on board with said treatments, and they have taken my daughter's condition seriously and taken the time to calm my fears. I mean it when I say the University of Kentucky Children's Hospital cardiac PICU team are my people and I love each one of them with all my heart.
Ellie came home at the beginning of June and we began a glorious summer and fall full of firsts: Ellie's first trip to the beach, Ellie sitting on her own for the first time, Ellie's first Halloween, Ellie's first Thanksgiving, Ellie's first birthday, and of course the best day of all, Ellie's Gotcha Day.
Ellie was able to get into the First Steps program in the late summer and she began receiving physical, occupational, and speech therapies in our home once a week. Early intervention is so important for babies with Down syndrome and we have seen so much improvement and growth in our girl. Ellie is rolling and oh so close to crawling. She is able to interact with toys and has just started showing preferences to certain toys over others. A few weeks ago we started food by mouth and Ellie is doing so well. I have come to love our therapists and look forward to the hour I get to spend with each of them every week. I enjoy sharing with them the gains Ellie makes and they always celebrate her well.
During this time we also became involved with Down Syndrome of Louisville, an amazing organization that supports people with Down syndrome and their families. Through this organization we have met other families who have kiddos with Down syndrome and they have become an amazing support system for us. These mommas celebrate each of Ellie's milestones with us, they are there to offer a kind word and support when Ellie is sick, and they understand our fears like no one else.
In those first few months, all of our efforts honestly went to keeping Ellie alive and everything else just feel to wayside. Once Ellie was healthy and we were able to start therapy and join the Down syndrome community, it has been amazing to see what Ellie can do. Our girl is such a fighter and we are so proud to get to be her parents. We honestly had no idea that better existed, but once better became possible, we have come to expect it and fight hard when better is compromised.
December began a very rough winter for our girl. Between December and February, Ellie had 4 ER visits and 3 hospital stays. We were quite literally in the hospital once a month during that time. Ellie has had 2 viral respiratory illnesses, a stomach virus, and RSV. Winter has not been kind to our girl.
Aaron and I have developed two rhythms - the one when we are all together and at home and the one when Ellie is in the hospital and we are apart. It is weird, but each time Ellie is admitted to the hospital, it gets a little easier and we fall into our "apart" rhythm a little bit faster. I am a master at sleeping in a recliner, know where to find coffee at all hours of the day and night, and have memorized the cable channels of two different hospitals. I know the best places to park and know the best time of day to move said car to get a prime parking space before discharge. I am able to recite all of Ellie's medications, doses, and frequency from memory and I am able to give a 5-10 minute rundown of her full medical history to the doctors during morning rounds. I am no longer afraid to correct information or question treatment options. I have learned that I must be Ellie's voice and it is my job to advocate for what's best for her.
As I write this, we have been out of the hospital for a month and half, which is the longest time span we have gone without a hospital stay since before Christmas. We are also currently living through a global pandemic, Covid-19, that has caused us all to practice social distancing. The big kids are entering their 3rd week of no school, they will begin non-traditional learning days later this week, and they will not be returning to school until at least May 1st. I feel like we are probably a little more prepared for self-isolation and social distancing than the average family. We actually practiced social distancing through the worst of flu season, because with how sick Ellie had been, we couldn't risk exposing her to anything else. Our big kids, while they still struggle, probably understand the need for social distancing better than most of their classmates, because they understand how dangerous this virus could be for their baby sister. So while it stinks to not get to see our friends and family, we understand that our girl's health is just more important. We are living through strange times and the world feels very surreal and scary right now, but we still have so much to be thankful for. Thanks to technology advancements, we are able to video chat with family and friends, and we are still able to do all of Ellie's therapies virtually. We have been able to stay connected with our Down syndrome community and because of social media we are able to share all of Ellie's milestones (and the cool stuff her big brother and sister are doing as well).
It has been a crazy year - a year with over 40 days being spent in the hospital, a year of learning so much medical jargon, a year of learning to work more equipment than I thought I would EVER have in my home, a year of working with amazing therapists and specialists, a year of watching Ellie meet little milestones, year of watching Elias and Sophia absolutely thrive in their roles as older siblings, a year of embracing our daughter's differences and learning to shout her worth and advocate for her, a year of absolute joy. Eliana AriaGrace brings us so much happiness and our lives are truly better now than they were a year ago. We so incredibly blessed to have her in our lives and we would not change one single moment of the last 365 days.
You have a beautiful family. Thank you for sharing your baby girl's story.
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