The beginning of Aiden's story!

Hi! My name is Alyssa and I am Aiden's mom. Many of you have probably seen Aiden's story on tiktok but for those who haven't welcome! And for those who have, here is the full story!

Aiden was born at 39 weeks on August 13, 2021 as a healthy baby boy in Nashville, TN where we live. I had had no prior complications with my pregnancy and it was assumed that I was having another healthy baby! We did not find out the gender until birth so we were very excited that we were completing our family with another boy giving us 2 girls and 2 boys!

My two toddlers, Joey 2 at the time and Audrey 1 at the time, had contracted RSV at the end of July about 2 weeks before Aiden was born. Talk about bad timing! When I was admitted to the hospital to be induced, I had a cold, but did not suspect RSV because it had been a little over 2 weeks and because I didn't realize I could contract it as an adult. Aiden's first apgar score was 8 and his second was 9 so once again, I did not suspect that I had anything other than a healthy baby boy. We were sent down to the mother baby floor after our 2 hour post birth period, so excited to have just welcomed the final member of our family!

*Fun fact: Aiden did not have a name for 3 days and was referred to as "Baby K"! Naming your babies is hard work!

The following morning, Aiden went to the nursey to get checked out by his pediatrician. He came back to my room and told me that everything with Aiden looked great and we were on track to go home the next day! He did mention that Aiden's head was smaller then normal, but that they would monitor that in their clinic. Aiden had not come back yet and about a half hour later, everything changed.

"You're son was sent to the NICU" is exactly what I was told. His oxygen dropped and he could not hold a temperature even under the heater in the incubator.

This is the next time I saw him 2 hours later because he had to get "situated."

That was the shock of a lifetime. Never in a million years did I think my healthy new baby boy was going to end up in the NICU and on oxygen. Having to get "trained" on how to scrub in and gown up to go visit my baby was such an emotional circumstance. The first week in there was a blur. We were told some really horrible things that I will never forget. I wish we could have been shown a bit more compassion by the neonatologists, but it is what it is and it was what it was. That first week was filled with IVs, oxygen, blood tests, X-rays, ultrasounds, an MRI, CMV urine test due to his small head size, you name it, Aiden had it done. We were going in circles and no one could seem to figure out what exactly was wrong with Aiden or tell me why this was happening to my baby.

During that same week Aiden kept having "desat" episodes and struggling to breathe and it just kept getting worse. His oxygen was continuously being increased but he could not manage to get into the 90's. I saw him have episodes dropping as low as into the 60's. You would think that with all the tests they ran, and with how much he was struggling to breathe that someone would have thought to run a respiratory panel. Well no one did until we mentioned that our 2 toddlers back at home had just gotten over RSV. Within an hour, it came back that Aiden was RSV positive and was immediately being moved to an isolation room. It all happened so fast and I was so scared. I knew RSV was extremely dangerous to infants. And all I could think about was the premature babies he had been next to and shared nurses with for days prior to his diagnosis.

After Aiden was moved to isolation, I was told that there was a possibility he was going to need to be put on a ventilator because his breathing was just continuing to get worse and his lungs needed a break. He was not able to clear the secretions in his lungs on his own. I broke down. No one wants to see their child on life support. I left that night to see my other kids and get some sleep. I don't think I had really processed the fact that they told me he could possibly go on a ventilator. Well the next morning I happened to get back to him just as they were putting it in. That was a very scary sight to see and enough to make me burst into tears yet again. I swear the saying about the NICU seeing more tears shed then a funeral home, is so true! I was escorted out of the isolation room because they did not want me to watch. I was approached by Aiden's nurse who then told me it was a very big possibility that I would not get to see Aiden for 5-7 days due to RSV being highly contagious. 5-7 DAYS WITHOUT SEEING MY NEWBORN SON. I tried to hold it together, but just couldn't. They had to be in contact with the infectious disease doctor to see what the next steps were.

Fortunately for me, I did not have to stay away from Aiden for 5-7 days. I had to scrub in before I entered his room which included 3 minutes of hospital grade hand scrubbing, a cloth gown, a plastic gown, gloves, and a mask.

Aiden was on the ventilator for 2 weeks. I was only able to hold him ONE time in 2 weeks. That was hard. They tried to extubate him at one week and he failed and had to be re extubated. That was a punch to the gut.

Regardless of not being able to hold Aiden, his dad and I were there by his bedside every day. During his time on the ventilator is when we found out that Aiden has Congenital Cytomegalovirus also known as CMV. With Aiden's CMV diagnosis, we were told the worst of the worst which I know is what they have to tell you. The very worst case scenarios. I will educate about CMV in another blog post, but the gist of it is is basically I got sick while I was pregnant and it was CMV. Most people have had CMV by the time they are 2 but unfortunately for me that was not the case. CMV presents itself as a common cold and even to this day I do not recall being sick. I did have covid around 20 weeks but that was it so I thought. CMV is very bad to catch while pregnant because it passes on to your unborn baby and is the most common infectious cause of birth defects. CMV is what caused Aiden to have a smaller then usual head size which led to his diagnosis of microcephaly. He started a 6 month antiviral, Valganciclovir, to hopefully offset any of the issues that come with CMV, most commonly, hearing loss.

At this point of Aiden's NICU stay we were told he was the sickest baby in the NICU. Who in their right mind wants to hear that?! No body ever.

Curve ball: CMV is extremely dangerous for transplant recipients as it can cause rejection. My husband, Jeff, Aiden's dad, is a two time kidney transplant recipient so this was like the worst news we could have received.

After 2 weeks on the ventilator, a lot of percussion therapy, and time to heal, Aiden was extubated and put on CPap. The CPap did not go well and only lasted a few hours because he kept pulling it off. The silver lining with that was he was able to move to high flow oxygen and he was stable with that so we did not have to look back! He eventually moved to low flow oxygen just a day or two later and a few days after that was weaned off oxygen all together! On to our next issue...

During all of this and from the very beginning of Aiden's NICU stay he was placed on a feeding tube. He had an NG tube for pretty much the whole 36 days he was there. He was not a fan and pulled it out every chance he could get! Originally he got the NG tube due to his oxygen issues and not being able to take a bottle. He then could obviously not eat while being sedated and on the vent. Once it was time to try to take a bottle again, it was discovered that Aiden was silently aspirating. This was determined by a swallow study and the decision was made to go ahead and have a Gtube put in. We were never able to determine the cause of the aspiration. It could be from the CMV, it could have been from being on the ventilator for 2 weeks, we just don't know.

A few days after Aiden's Gtube surgery and lots of training for mom and dad on how to use it and the medical equiptment, we were able to go home!

The NICU is a weird place. You feel every emotion possible while you are there and even emotions you didn't know you have. No body wants to be there and there are so many highs and lows. You get excited and happy when your baby makes progress, but so let down when they have a bad day or you don't get the news/results you are hoping for. You are so anxious yet so patient at the same time waiting for the doctors to make rounds. You feel so happy for the parents that you watch getting to bring their babies home yet so sad and defeated that it is not you. You feel so thankful and so blessed that your baby is not the one that just coded or even worse passed away (which we had to witness twice and was just the most awful thing EVER!) You are angry and upset that you are missing out on the newborn phase and that you have to leave your baby in the hands of strangers every time you leave. "Visiting" your child who is supposed to be home with you becomes a normal I would never wish for anyone to feel. The sadness you feel when leaving the hospital for the first time after giving birth without your baby is like getting stabbed in the chest.

So to all my fellow NICU moms, no matter how long your stay, I see you, I feel for you, I was you, and I hope their is/was light at the end of your tunnel!

Here are a few photos from our NICU journey:

Aiden had an EEG test done to see if he was having "silent seizures"