Motherhood is beyond the greatest thing that I’ve ever experienced. When we found out that we were expecting Tristan, we were elated. We tried to conceive for months and prayed for a baby brother for Tatiana. On April Fools Day we found out that we were expecting and a few months later we found out that it was a boy.
October 15, 2016
My water broke 5 weeks and 3 days early! It was a Saturday and after a few trips to the hospital during my pregnancy for preterm labor I was finally stable. My husband and I had decided that today was the day that he could finally go to a FSU football game in Tallahassee because I was stable for weeks. We knew Tristan was going to come early and Jac deserved some much needed guy time before he arrived. But of course with our luck, this was the day that Tristan had decided he was ready to come. I wasn’t sure whether or not I was in labor because I had experienced pretty bad contractions many times during my pregnancy and had been prescribed medication to help stop them. After I took the medication and the contractions didn’t stop I decided to pack up and head to the hospital with Tatiana in tow.
On the way, I called literally ever person that I could think of. I couldn’t reach Jac because of course he had no service in the stadium. Once I got to the hospital I checked in and the contractions were getting worse. I was literally on all fours in the hospital waiting room. Luckily, I was able to get a hold of a friend who’s husband had been at the game with Jac and they immediately headed back to Orlando but it was too late. Within 30 minutes of arriving at the hospital, Tristan was born in triage.
I cried. And cried some more. This was the happiest and most painful moment of my life. We planned this day for months and for weeks had been prepared for me to go into labor at any moment and when we least expected it to happen, it did. I cried because the moment wasn’t perfect and because my husband couldn’t be there to see his only son born. It hurt, more him than me. All I could think of was the pain that I was in from labor and how much I wish Tatiana didn’t have to hear my screams as I gave birth to her brother. I’ll be honest, I’m not really sure how women give birth with no pain medication at all but I salute them because it is tough.
After about 30 seconds of pushing, Tristan was born and I heard his beautiful cry. He cried then I cried some more. I never thought that I would cry this time around because I didn’t cry when Tatiana was born. Maybe because I wasn’t in pain or maybe because the situation was less stressful. Once Tristan was born, the nurses whisked him away to the next room to get him cleaned up but something went wrong. My beautiful baby boy had stopped breathing. The doctor had a hard time getting him to breathe and he wasn’t responding to anything so they rushed him the the NICU (Neonatal Intensive Care Unit).
After Tristan’s Birth
Once my mother-in-law arrived at the hospital, I was able to be moved to the labor & delivery floor. I stayed there until I was able to move to a patient room. My husband finally got to the hospital and I knew nothing. All I knew was that Tristan stopped breathing and he had to be rushed to the NICU to be stabilized. I was scared. He was scared. The son we had anticipated for months was sick and we had no reason why.
Hours passed and finally a patient room opened up. On the way to my room, the nurse brought us to the NICU to see Tristan. My baby boy was 4 lbs 12 oz and looked so fragile. We were somewhat prepared for Tristan being in the NICU but only because we knew he would be early. We never imagined that at birth he would stop breathing.
The first days were rough. I don’t think there’s ever been a time in my life where I’ve felt this low. I had just given birth and was in so much pain, my hormones were all out of whack, and my son wasn’t okay. Not to mention Jac and I had to find a way to explain to Tatiana what was going on.
And then the day came where I was discharged from the hospital. This day was hard for me. I cried and cried, so much to the point where I just wanted to sleep in hopes that I would wake up and everything we experienced was a dream. It would’ve been even harder if it weren’t for my husband and Tatiana keeping me smiling every single day.
Life in The NICU
We were able to visit Tristan whenever we wanted which made things a little easier but there’s absolutely nothing that can prepare parents for life in the NICU.
It’s an adjustment.
TPN, CPAP, intubation, desat, blood gas, brady, gavage, PICC line. These are all terms that we had to get used to as NICU parents. Never in a million years did we imagine that this would be our life, that we would be the parents of a medically fragile child.
On day 1 of life, Tristan was intubated (had a breathing tube shown in the photos above) because he had trouble breathing on his own. The doctors couldn’t tell us why and it was frustrating. We visited the NICU every single day. Every day I made a point to hold Tristan and talk to him, tell him stories about how one day he and his sister will argue about the littlest things. Tatiana would read him books and hold his tiny little hands. And dad got the job of changing his dirty diapers.
Life in the NICU definitely has its ups and downs. In the beginning it was rough. It’s a life that you have to get used to and learn to have patience with especially when you have other children. It’s not easy for Tatiana to spend hours every day at the hospital and in the beginning she had an extremely hard time adjusting. Now not one day goes by without Tatiana asking about going to see her brother. If she doesn’t get to see him, it affects her. It makes her sad. I cannot explain how proud I am of her. She is the greatest big sister and has grown to be patient with him.
After the third time of failing extubation (removing the breathing tube), the only option was for Tristan to get a tracheostomy. We were devastated at the news because it was scary. We were naive and knew nothing about trach babies so it scared us but it was the only way our baby could breathe.
At just 23 days old, Tristan underwent surgery for his tracheostomy and feeding tube. Waiting for him to get out of surgery felt like the longest hour ever. Surgery was successful. For one week, I wasn’t able to hold my baby boy while he healed.
Once healed, we were able to hold Tristan again. Then, around Thanksgiving something weird began to happen. Tristan began having these “episodes.” An episode refers to a period of time when Tristan’s heart rate drops and he isn’t able to keep his oxygen level up. I remember the first time he had an episode like it was yesterday. There is nothing that prepares you for the shades of blue that your child will turn when they stop breathing. It was like the life was taken out of my body for those 60 seconds. He was blue and unresponsive. Then came the bag. I watched as the nurses manually gave him breaths with an ambu bag. It was the scariest thing ever.
Later we found out that Tristan has a condition called tracheomalacia which causes his airway to collapse and that’s part of the reason he has these episodes. There is no way to fix it besides growing out of it and even that is not guaranteed.
I’ve heard people tell me that they don’t understand why he can’t come home and it’s because we’ve chosen not to expose anyone to the seriousness of his condition. Tristan has many of these episodes on a daily basis and now it’s just become something what we are all used to. Jac and I know what to do if this were to ever happen at home, and even in the hospital we know what to do to prevent his episodes but sometimes no matter what you try they can’t be prevented. We have even taught Tatiana about what to do when her brother turns blue and what his stats on the screen mean.
While he grows, we can only hope that his condition gets better but in the meantime his trach is helping him to breathe.
The Road Ahead
Tristan is officially 90 days old and has grown to be 9 pounds. We still visit him daily and take control when we are there. We change his diapers, put his milk syringes in his feeding pump, change his trach ties, clean his trach, and most importantly we hold him. We’ve even got a few trach changes under our belt. Every single day we kiss our son and tell him how much we love him because we need him as much as he needs us.
Because of Tristan’s condition, we’ve chosen not to allow him to have any visitors besides us. In the beginning we allowed friends and family to visit but it just got too complicated. The drama was just too much to handle when people couldn’t see him and no one respected our choice of who we allowed to visit. Another reason why we decided to no longer have any visitors is because people simply just don’t follow the NICU rules. They don’t remove their jewelry, clean under their nail beds, or scrub up to their elbows for at least 30 seconds. Oh, and let’s not forget that some people even wear perfume. They just don’t get NICU life and how the littlest things can get our baby boy sick. And something as simple as the common cold or a cough could be life-threatening for Tristan.
One of the questions we get asked the most is “when is Tristan coming home?” I can’t tell you how much this question frustrates me because a simple answer like “we don’t know” is never enough for the person who asks.
Although we don’t know when Tristan is coming home, we are fully prepared for when he does. We’ll have an even busier schedule as he’ll be seeing a long list of 10 doctors and specialists plus having weekly physical, occupational, and speech therapy.
Once he’s home we plan to enforce the same rules as the NICU in our home: surgical scrubs, clean nails, and no jewelry. We’ll have loads of hand sanitizer on deck and we won’t be allowing anyone into our home if they smoke, have pets, or have been sick in the past week. While all of this sounds extreme, we have to stress to our friends and family that we can’t risk Tristan getting sick because any sickness for him means a trip to the hospital.
The joke in the NICU is that Tristan is known as the triage baby and that he gave everyone who was there for his birth a run for their money. Now it’s something that we can joke about because it’s something that has made us stronger and is in the past but it’s a day we’ll never forget.
Tristan is a feisty little boy who is continuing to grow faster than we can keep up. He loves music, tummy time, his pacifier, massages, his mamaroo, and mommy’s milk. We’re lucky to have so many nurses and doctors in our life who have become our family. I’ll be sharing more and updating you all as he continues to grow and I’ll be sure to let you know once we’re on the path for home.