COVID-19, development, mommy blog, prematurity, Tampa blogger

Preemie Mommy Reflections & Amazing News

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. 💜

prematurity

Emerson is TWO today!

Oh how time flies! I cannot believe we are already celebrating Emerson turning two today. As you probably guessed, I am in full reflective mode remembering everything that happened on this day and leading up to it.

I’ll never forget the look in the doctor’s eyes after seeing the doppler ultrasound, which I had been having everyday for a week (while on bed rest in the hospital) to view the blood flow through the umbilical cord. The issue was that there were times when the blood was flowing away from Emerson, which put him at a very high risk of being stillborn.

On August 7, 2017, I’d had enough. The look in the doctor’s eye and her telling me that she truly did not know what condition Emerson would be in completely broke my heart. I was so emotional with many thoughts racing through my mind… feeling completely helpless. I said to my husband, “I just want this to be over”. I was tired of being in what felt like a holding pattern and I just wanted to know exactly what we would be dealing with one way or the other. Well, God definitely listens because maybe an hour or so after I spoke those words, my obstetrician came in saying she would need to do an emergency C-section due to my liver enzymes increasing (this is one of the signs of preeclampsia). I was relieved and scared all at the same time. Immediately, I started praying (yet again). I had never had a major surgery in my life and my greatest fear was that my child would be born with no mother.

Now, two years later, I have the most incredible testimony to share, and I truly hope that it helps and inspires others. I tell people all the time that I live with a miracle and it is so amazing. I cannot thank God enough for that. Everything Emerson does or says is so special to us because in the back of our mind we always see that 1 pound baby who was the size of my husband’s hand and stayed in the hospital for 191 days. Emerson’s life is emphatic proof of God’s mercy and grace. I am so thankful for him and beyond excited to celebrate him turning two! 💜

prematurity

Our New Normal

It is human nature for us to want to be “normal” or have what is considered to be a “normal” experience when it comes to having children. What’s interesting about the idea of wanting to be “normal” or fit-in is that every individual has their own idea of what “normal” looks like.

I always say that we have not had a typical experience when it comes to parenthood and child-rearing. It isn’t typical for babies to be born early and live in the hospital for 191 days, although, premature birth is actually more common than you might think. Regardless, one of the primary lessons I learned and concepts I still lean into is the idea of having a “new normal”.

I will never forget the conversation I had with a friend from college who had the experience of being a NICU mom and she said to me “you will find your new normal”. She explained that our new normal would likely change fairly often given our circumstances, and she was completely right.

Right now, we are adjusting to our new normal, which is a place that I had not ever even thought about us being at: Emerson is walking. No, Emerson is running! Also, talking more and being off the ventilator during the day. I never truly allowed myself to think about this day coming mostly because I made it a point to live in the moment of whatever our new normal was at the time. Here’s how the stages of our new normals have gone for us:

  1. Adjusting to life in the NICU, visiting Emerson each day while pumping exclusively
  2. Going back to work while Emerson was in the NICU and still visiting him everyday
  3. Transferring Emerson to the PICU and adjusting to a different hospital and different staff
  4. Transitioning Emerson home with a trach, g-tube, and ventilator after 6-months of being in the hospital

And now here we are at the stage where we are needing to baby-proof outlets and cabinet doors. I cannot explain how blessed I feel to be adjusting to this new normal. My heart smiles every time I see him running around playing or getting excited to see his favorite show. He has been able to have experiences that I never even imagined when he was in the hospital, like going on field trips with his daycare. We will even be taking him to his first live show to see Paw Patrol next weekend!

I guess I am saying all of this to say to my fellow NICU moms and dads, embrace your new normal and understand that it will change periodically. Continue to be totally present in the moment of whatever normal you are in. Time feels like it moves so slow when you’re a NICU family, but eventually, you look back and can’t believe you or your child has come so far. Stay encouraged. 💜

prematurity

The Incredible Thing That Happened…

This time a year ago, I remember getting settled into home life with Emerson. He was just about to start at his medical daycare (also known as PPEC-prescribed pediatric extended care), and I was so nervous. There was a lot of transition still happening around this time, and I was praying to God that this daycare would work out since we really had no other options.

Now that he has been at the daycare for almost a year, I am more than certain that this was the best decision for him. He recently was evaluated for developmental milestones, and he has caught up in almost all areas with the exception of those that would require him to not have his feeding tube or trach. In the social area, he was actually off the chart for his level of development, which is amazing to me. What a testimony!

One of my favorite things about his daycare is that he is able to get his physical and speech/feeding therapies there. This has been invaluable to us. Not only is it more convenient for us, it also means that he can have a more consistent experience since his nurses and caregivers are all aware of his progress almost immediately.

Last week, on March 7th (my husband’s birthday), Emerson’s physical therapist sent me the below video and I was almost a puddle on the floor:

This video is such a blessing to our family. When I think of him being born at 26-weeks and 1 pound, it just further confirms that miracles are real. I thank God everyday for choosing us to be Emerson’s parents and allowing us to live with a miracle.

This was not my original intended post for this week, but I had to share after receiving that video on Thursday. I hope this helps someone out there lean more into their faith and understand that anything is possible no matter your circumstances. Keep believing for miracles. Happy Sunday! 💜