Many of you may remember that Valentine’s Day has a special meaning for our family. It is the day that we brought our little one home 5 years ago after a 6-month hospitalization, which was the result of a premature birth at 26-weeks.
Reflecting back, I can remember the flurry of emotions that day. The excitement, the worry, the gratefulness… all of it bursting at the seams underpinned with our constant faith that brought us to this day. This was probably the single most emotional day I have had in my life to date. Even more than my wedding day or the day Emerson was actually born. What sets it apart is the spectrum of emotions that took place all in one day. Excited to finally be bringing him home, worried and scared that we might not be able to manage everything from a medical perspective, then eternally grateful for his life and how far he had come. This day was the culmination of everything we had been praying for and who knew that such a little person would require so much. From a ventilator, to a tracheostomy, to a g-tube, feeding pump, suction pump, pulse oximeter probes, syringes, gauze, and the list goes on and on…
Today, I see my little energetic, loving, 5-year-old who no longer has a tracheostomy and who is in kindergarten. I see the miracle that he is and how he has already blessed the world in so many ways. People often tell me how loving he is, how happy he is, and how much they just love him. It’s so amazing to see the impact he has on others at such a young age. I am grateful that our experience has been such a testimony for others going through similar challenges.
Since it’s the 5 year anniversary of Emerson coming home, I thought I would share some photos from that day. I hope it brightens your Valentine’s Day just as it does mine! 💜
The first month of a new year is always interesting to me. It’s the time for planning out your year and trying to recuperate from all of the holiday activities. This January has been no different in that respect. However, it also almost always feels little long…
Transitioning back to work and our son back to school while still in a pandemic has been tough. With the COVID numbers being as high as they have been, my company made the decision to have all non-essential workers work remotely, which I am grateful for. However, Emerson still has to go to school and my husband still has to physically go in to work.
We were able to be COVID free for two whole years, and then here comes January 2022, and our son tests positive. In that moment, I was immediately concerned for what this would mean with his chronic lung disease history and also with him being too young to be vaccinated. To my surprise, his symptoms remained fairly mild (fevers and vomiting mostly, which is still no easy feat), and were almost completely gone by day 4. We are more than grateful that we never had to put him on oxygen or take him to the hospital. It was a blessing that we were able to fully manage it at home and keep track of his oxygen saturation and heart rate with the pulse oximeter. Now that’s not to say those 10-days of quarantine were easy for us… juggling work and a 4-year-old (especially once he was back to full strength) was a bit challenging. (See the photo below for proof.)
Really? On the sofa table, though?!?
So, I’m not sure if I’m the only one feeling like whew, I made it through January, but I just had to come here and say WHEW, WE made it through January, and I thank God for it! Although, we dealt with COVID head on and have lots of other things going on right now, there were a few positive things in this long month, one of which included me having the opportunity to be a part of my friend’s new podcast, which I am super excited about, and can’t wait for you all to see! I love opportunities to share and create awareness around what it means to be a preemie mom, so I am very appreciative for Tivi Jones and her company, Hey Awesome Girl. More details on the podcast episode coming soon!
Here’s to a positive and hopeful 2022… Stay safe and be blessed. 💜
Well, it’s been a while since my last post, and there has been so much happening in the last year! Between being a wife and mom, trying to have some level of self-care, and the general managing life through the pandemic, it’s been challenging. However, I could not let this month go by without sharing a few thoughts about the NICU and driving awareness around that experience.
While your baby may leave the NICU, the NICU never really leaves you. I’ve learned this over the past 3 and a half years as Emerson transitioned home from the NICU after his 191-day stay and we settled into our new normal. Even today, living through the pandemic has taken me back to some of the feelings I experienced when Emerson was in the NICU: alone, anxious, and helpless. Just like back then, I have the faith that everything will work out as it should, however, that does not negate my feelings as I am living through it.
Like I said, during Emerson’s NICU stay, I felt alone, anxious, helpless, and honestly many other emotions too. I was literally on an emotional rollercoaster the entire time. Some days I felt relief and happiness, while other days I felt depleted and jaded. It felt like people who did not live the reality of the NICU couldn’t fully grasp what my family was going through despite their thoughtful attempts to try. And how could I expect them to? My family was walking the path of uncharted territory to many of them.
The NICU is such a different world. It’s full of loud sounds, medical jargon, rules/protocols, nurses, doctors, respiratory therapists, lactation specialists, speech/feeding therapists, occupational therapists, and the list goes on and on and on… You meet so many people who are working to help your baby, and you learn so many new things that it overloads your brain. While you’re learning all these new things and meeting all these new people, you’re trying to advocate for your child. Meanwhile, there’s the whole administrative piece of understanding what benefits may exist in your state based on your baby’s condition and reason for being in the NICU. For example, with Emerson being born at such a low birth weight (1 lbs 1.5 oz), he qualified for Social Security Benefits and Medicaid. This was another thing we had to apply for and manage along with our primary insurance as well. Imagine managing this while in an inconsistent emotional state from day to day and living with the general concern of “is my baby going to make it” while trying to remain positive and believe “my baby is going to make it”… it’s not the easiest thing to do honestly, and it’s most certainly no fun.
I share this peak at what a NICU experience can look like to shed some light on it for those who haven’t experienced it, and to remind those who have that you are not alone. You are not alone in dealing with the trauma you experienced or in having those feelings come back up from time to time and managing through that. You are also not alone in receiving comments/questions that don’t land well and leave you feeling worse when the intent was encouragement. I see you. I am you. I get it.
Going forward, I hope we can all help validate the feelings that come with having a NICU experience and the impact it can have in the way moms and dads experience life after the NICU. It is super important to be able to do this because it helps us NICU parents feel seen, heard, and somewhat understood. Remember, emotional support is just as important as sending a meal sometimes. 💜
Now, here’s a small piece of our family’s journey through the NICU…
My first time seeing Emerson; about 7-10 hours after giving birthFor scale… Emerson was the size of my husband’s hand!Just a couple days after being bornMy first time holding Emerson; about 1 month after he was bornMy husband reading to Emerson while he was in isolation due to a respiratory infectionOur first family photoOur current family photo; taken on Emerson’s 4th birthday last month
August has been a huge month of celebration for us. Emerson turned 3 on August 7th, and even though we are still living through a global pandemic, we were able to make his birthday special and memorable. We celebrated with a professional photo session with Warped Vision and drive by birthday parade with local friends.
This birthday was special for a number of reasons, but most notably, being a marker of the point we have reached in Emerson’s development. Not only is he trach free, but he is also eating most of his calories by mouth and working on drinking out of a cup. He is talking more and putting words together to make small sentences. I am even noticing he is doing better at listening when we ask him to do something (which is no easy feat for a toddler).
Last Tuesday, Emerson started preschool (virtually), and I am still in disbelief that we are at this point already. It seems like just yesterday, I was watching his little 1 pound body in his NICU bed wondering when I would be able to hold him. Now, I get all the cuddles all the time. I am so proud of how far he has come and excited to see him blossom this year. I am praying for a healthy, safe, and smooth preschool experience for him.
This Tuesday, Emerson will start going to preschool in person. I am so proud that he was able to handle the first week being virtual and excitedly nervous about this transition. My husband and I have been prepping all weekend by making his meals, ironing his uniforms, and packing is backpack. We are real school parents now!
Being at this moment in time makes me feel more blessed than anything. It is a joy to experience all these milestones and see Emerson’s personality continue to shape and shine through. What an honor to live in the presence of a miracle. 💜
Three weeks ago, we went in for the procedure to start the trach removal process, and after spending two nights in the hospital, we came home trach free.
The days leading up to the procedure were filled with a flurry of emotion. I was excited and nervous, but hopeful for the best. We knew there was a chance that Emerson might need a more extensive surgery to remove the trach depending on the condition of his airway and his body’s ability to heal.
Going into the hospital on July 7, exactly one month away from his 3rd birthday, Emerson was completely unbothered. He was his typical, happy, smiling self. Even in the pre-op room, we played, sang songs, and talked to my husband on FaceTime. We even took a few selfies…
After signing the appropriate consent forms, the nurse and anesthesiologist took him to the OR. I headed to the waiting room where I sat for maybe an hour before Dr. Mitchell came to me with an update and pictures. He said Emerson did great and talked to me about the photos he took of his airway and the expectation that he would do well with the smaller, capped trach before completely removing it the next day.
About 30 more minutes passed, and the nurse came to get me and took me to Emerson. He was out of it due to the anesthesia. We sat there for about another 30 minutes until he woke up a bit more. Of course we knew he was awake when he could hold his tablet.
Once fully awake, the nurse put a red cap on the end of the smaller trach. This forced him to adjust to breathing through his nose and mouth. We were taken to a hospital room on the regular children’s floor. For the first time, we were not headed straight for the pediatric intensive care unit (PICU). We got settled and shortly after, Emerson did not want to be in bed. The anesthesia made him super cranky and only wanting to be in my arms. I held him while we sat for about two hours, during which he got a tube feeding and finally took a nap. He woke up in a much better mood and acting more like himself.
The next day in the hospital I was excited and nervous again. Our ENT’s nurse practitioner came to check on him and said he looked good and took the small trach out. Emerson was completely unphased.
Now, it has been three weeks and he has been doing amazing without the trach! I could not have imagined a more seamless transition. He is still eating by mouth as he normally would (purées and soft solids) and his oxygen saturations are 99-100. His stoma (the trach site) has almost fully healed with no issues. He is also VERY loud these days. 😊 We are working on teaching him the concept of “inside voice”. However, it’s such a joy to hear his little laughs and him singing and talking all the time now.
I will never be able to fully express how grateful I am for this or even how proud I am of Emerson. I thank God everyday for allowing us to experience this miracle up close. We are so blessed to be his parents.
My journey to motherhood was quite different than my expectations. No baby shower, no feeling the baby kicking at night, no making it to my third trimester, no gorgeous maternity photos. Instead, it was filled with anxiety and uncertainty, ironically, a lot of what we are experiencing in the world right now. It was only by the grace of God that I remained hopeful and steady throughout, even when I had a moment or two of breakdowns where I just had to let it out.
Even today, my experience as a mother differs quite a bit from many others. Mine is filled with trach changes, putting g-tubes back in, ordering and administering medication, ordering medical supplies, and keeping track of many doctors’ visits. It sounds like a lot, but I am grateful for it. Every day, I get to be the mom of a miracle. I look into my son’s eyes and am consistently in awe of how amazing he is and how much I never imagined him getting to this point. My focus has always been the present and while I knew he would grow and develop, I have tried not to let myself think too much about it as a way of not placing unrealistic pressure on him or myself as a mom.
Yesterday, we received some amazing news: Emerson’s decannulation will be on July 7th! Yes, the trach is coming out! I am so filled with emotions that I don’t know what to do. When I think about all that he has endured and overcome, I just thank God for creating this strong little boy and choosing me to be his mommy.
Lately, I have been struggling a bit with recognizing that the issues you experience as a preemie mom do not always stop when you leave the hospital. For us, there have been many hurdles after that, and while more recently, our focus is on the huge hurdle of eating, knowing that his trach will be coming out soon gives me comfort. It reminds me that we, as his parents, have done and are doing our best. He is developing at the rate that is best for him, and I am so proud. This journey hasn’t been the easiest, but it’s one that I am so grateful for. I have grown in ways I never could have imagined. 💜
March 2020 has been a complete whirlwind. I always look forward to March because both my husband and I celebrate our birthdays: his is March 7th and mine is March 30th. This year, we could have never planned for what this month has become: A month of quarantine and social distancing due to COVID-19.
The social distancing hasn’t been too much of a shock to our family because we spent so long in the NICU (191 days). I’ve seen memes going around that say how NICU families are made for this type of thing, and it’s true. I remember many times where Emerson was in isolation due to being sick and even less people than normal could be in his room and anyone entering the room needed to have a gown, gloves, and a mask. The difference is that now essentially we are having to live this way in the world rather than one room. Also, the fact that it’s due to a new virus that has no cure or vaccine yet, which is scary to think about.
Admittedly, I have been slightly bitter/sad about my birthday and not being able to celebrate as planned with a spa day and dinner with friends. This probably sounds like something I should just get over or not a big deal, but I am one of those people who LOVES birthdays and feel like they are kind of a big deal. I also felt sad that my husband’s birthday plans fell through at the beginning of the month when we had to cancel our trip to NC. Nevertheless, we have persevered and made the best of the situation. I was able to take my husband to a nice dinner (before all the restaurants closed their dining rooms) and get him a nice gift in place of the trip. For mine, we were able to have a virtual party with my friends, which was so much fun! We ended up chatting for almost 4 hours with anywhere from 11-16 people on at a time. It was so great to spend that time with friends and do table topics while talking about shows, movies, and whatever else came up. I was reminded of two things that night:
How amazing my friends are
How much they genuinely care for me
I do not take either for granted. What I appreciate most is the grace they all show me by being able to pick up right where we left off no matter how long ago we may have spoken or spent time together. I think we all understand that there’s a lot going on in our adult lives that we have to manage and I am just grateful for the grace they have all shown me and for still “showing up” for me.
(My friend Crystal sent me this photo of her view of my virtual party.)
During this time of social distancing and staying home, I would encourage you to take some time to connect with your friends and family virtually. It’s easy to be anxious and worried at a time like this, but a good way to combat that is through being connected. It reminds us that we are all in this together and not suffering alone. If there’s something special to celebrate, like a birthday, don’t let COVID-19 bring that to a halt. Celebrate virtually, and have so much fun doing it. I promise it energizes you and makes you feel just as connected as a typical in-person celebration because the point of it all really is the human interaction.
Lastly, my heart goes out to all the families currently living in the NICU. I don’t know the details, but I am sure that more stringent protocols have likely been put into place to keep the babies and families safe. Although, it’s for the best, I understand how that can make what you are already living through more stressful. Know that we are thinking of and praying for you during this time. 💜
Today is a special day to many, but extremely special to us. Yes, it’s Valentine’s Day, however, it’s also the day that Emerson came home from the hospital two years ago. I will never forget that day. The excitement, nervousness, and relief I felt all at once. This day was the culmination of the first 191 days of Emerson’s life coming to an end and the beginning of our new normal at home. Grateful doesn’t begin to express my feelings for him coming home.
Today, it is an honor to have him experience his first trip to Disney to celebrate bringing him home. Watching him enjoy the Disney Junior Dance Party and Toy Story Mania was a feeling like no other. My baby is getting to be a real kid! Going through NICU life and coming out on the other side makes me incredibly grateful for every milestone and experience he has whether big or small. I know it didn’t have to be this way, but we were blessed to have a miracle baby. I sincerely hope our family’s story helps others to remain faithful and hopeful through their NICU journey.
Development can be a sensitive subject. Some parents (I think moms in particular) measure their success as a parent in terms of how their child is developing. So I tend to cringe any time I hear questions asked about development (ex: are they walking yet or why aren’t they walking yet). The thing about development is that while you can certainly help with your child’s development, at the end of the day, they develop at their own pace.
Having a micro preemie, one of the things I heard a lot was that I should expect him to be behind developmentally, but that he would likely catch up. Now that my son is two, I see what they meant. However, because I don’t have other children, I don’t necessarily think of it as him catching up, rather, it’s just his own pace of development.
However, now that he has accomplished so many developmental milestones, I find myself somewhat anxious about him continuing to move forward. Prime example: we are trying to get him to point things out to us, and he just doesn’t right now. It seems like something so easy, and I think because I know he knows what certain things are, I feel like he should be doing it. But alas, he’s not. This is when I have to remind myself that it’s at his own pace.
The outside world already places enough pressure on our children and is ready to quickly define them based on a number of things. We as parents are their safe space. It can be tough to walk the fine line between pushing them to develop, and pressuring them to develop. In the end, I think we all want the same thing for our kid(s), which is for them to be healthy and develop to the best of their abilities. We also tend to be on high alert for signs that they may need a little extra help developing in certain areas. For example, my son sees both a physical therapist and speech therapist, which is a huge part of why he’s come so far after a 191-day hospital stay.
Do you also struggle with this? I would imagine it’s likely something that moms of full-term babies probably deal with as well. I would love to hear your stories about how you manage the art of not adding additional pressure to your child because you are ready for them to move forward in their development, so please feel free to share. We are all in this together! 💜
**Update: When I originally started drafting this last week, Emerson would not point at anything… now he’s pointing to his nose! 😊
Whew… time flies! I know it has been a while for my last post, but you would not believe all of the things that have happened between my last post and now:
Emerson being sick
Travel for work
Emerson being sick
Travel for work
Emerson being sick…
Okay… I think you get the point. Fall 2019 was filled with weeks of Emerson being sick due to catching some sort of respiratory virus. We were in and out of the doctor’s office with him on almost a bi-weekly basis. It sounds grim, but the positive side of it is that during this cold/flu season, we have not had one time where we had to take him to the emergency room! This is completely a step up from last season where we had about 3 emergency room visits due to respiratory viruses. The thing you don’t think about as your child gets older (or at least I didn’t think about because I was more concerned with his health issues as it pertains to him being a preemie) is how much their access to germs increases, which of course increases their likelihood of getting sick. My feelings around this felt somehwat conflicted because while I was celebrating the fact that Emerson was thriving and catching up developmentally, I was also stressed about him being sick so much. However, with a lot of faith and prayer (as well as cuddles with Emerson, date nights my husband, and support from family and friends), we made it through this stressful time.
Fast forward to the holidays. Thanksgiving and Christmas were great. We were even able to take Emerson to North Carolina to visit family and friends a couple of weeks before Christmas. Needless to say, we had concerns about the weather change and all the things that could go wrong (especially with him having been sick so much in the months prior), however, he handled it like a champ, and we had no issues during our trip. We had an amazing time watching Emerson play with his slightly older cousins (ages 5 and 6) who are so protective of him.
Now, we are on to 2020. I am currently on my first work trip of the year, and missing both of my guys, but I will be headed home soon. Entering 2020 has made me reflect on the past, but also look forward to what is to come. In 2019, Emerson:
Began taking more pureed foods by mouth (up to 8 ounces!)
Started matching shapes using the block shape sorter toy (we still aren’t stacking yet, but he’s coming along)
Started counting to three when prompted (and when he feels like it)
Started using his passy-muir valve daily (this device goes over his trach to restrict his airflow so that he is able to talk and project his voice)
Came off the ventilator during the day
Battled sickness from home instead of the emergency room
This week, Emerson had a sleep study, which puts us one step closer to him being completely off the ventilator. Thinking back to August 2017, I could not have imagined all that we have been through nor that we would be where we are right now. Emerson has been home and thriving in spite of having to spend 191 days in the hospital. We are more than grateful for his progress and looking forward to all the milestones he will reach in 2020. If you are a fellow NICU mom or family, I hope this encourages you. Regardless of what stage you’re in, celebrate the wins no matter how big or small. Here’s to an amazing 2020… wishing the best for you all.
Medical Mommy 