The signs were all there but I didn’t notice. I’m reflecting on the signs before, during, and after Tristan’s precious life.
The signs were all there but I didn’t notice. Okay so I don’t want to seem like a crazy mama on a rampage or a conspiracy theorist or whatever but today makes three months since Tristan has passed and the more time that goes by the more I realize that God sent us so many signs but I didn’t notice them. I’ve talked this over with a few different people and they were all amazed at the connections and the signs. So I’m breaking them down here to give you all a little bit of insight into Tristan’s life and keep you in the loop as we make new discoveries.
1.Our pregnancy announcement
I want to start with our pregnancy announcement first. You remember seeing it here? I had always seen these angel wings on Instagram and wanted to take a picture in front of them because I love a good graffiti wall. I never made the time to take the 30 minute drive to take pictures there until I got pregnant. I figured that was the perfect and cutest way to announce that we were expecting a second baby, right? I figured that Tristan was going to be our angel baby because we tried so damn long and hard to conceive him in the first place. It was actually after we gave up and stopped trying that I ended up getting pregnant. It was cute but I never realized how significant that picture would be in our lives until later. The funny thing is that we announced our pregnancy on July 19, 2016 when I was 22 weeks.
The 19th of April is when Tristan took his last breath and gained his angel wings.
2. Hide and go seek heartbeat
During my pregnancy Tristan always loved to play hide and go seek, especially during ultrasound time. He always gave the doc a hard time when she was trying to find his heartbeat or his face. We saw his face ONCE. One time at the end of an ultrasound he let us see a peek of his face just when she was about to give up on looking. Then, his heartbeat. I don’t know what the deal with that was. Tristan was never as active as they wanted him to be but what can I say, he’s my child. I remember constantly having to get biophysical profiles at least twice a week once I got to the 29 week mark just to make sure that everything was okay. Every time it was like standing on pins and needles waiting for them to tell me that everything was fine.
3. My blood scare at 24 weeks
Only a handful of people knew about this one. I still remember it like it was yesterday and it was what I thought the scariest moment of my life. School happened to be out at the time so Tatiana was home with me. It was in the morning and I had woken up to be for the millionth time. When I got up from the bed, all I saw was blood on our sheets. I got scared. I got scared because I was pregnant and as a pregnant woman you’re trained to know that any blood is never a good sign. Naturally I freaked out while still trying to keep my cool because I didn’t want to scare Tatiana. I called my doctor and was told to go to the hospital. I packed us up and drove to the hospital. My husband was at work and met us as soon as he could. By the time he got there I had already been poked and prodded for testing, and had an ultrasound.
The ultrasound was easy peasy or at least I thought until I got up. I got up and blood rushed down my leg. Not just a little but a lot. More blood than even the doctors were comfortable with. I can’t even describe what was going through my mind when I saw all of that blood. Honestly, I’m surprised that I didn’t faint because I hadn’t eaten all day and I don’t do well with blood. I thought at that moment that shit was about to go down. I was convinced that that was the day that I was having a baby because with losing that amount of blood the baby couldn’t be safe. But I was wrong. And I was happy that I was wrong because everyone knows that the odds of a 24 weaker surviving and thriving are rare.
Turns out that all of the blood was from a blood clot which sometimes happens to pregnant woman. Why? I don’t know. I still to this day don’t know why I got that blood clot but I do have a few theories. I’ll save that for another post though.
4. 29 week baby scare
This was my 5th trip to the hospital but this time was different. It was a Friday night and I was cooking the most amazing dinner, lobster and steak with mashed potatoes and asparagus. I’m not even sure why I remember that. Anyways, I had just finished cooking dinner when the cramps began. I knew something was wrong because I had never felt these before. I called the nurse on call and she told me that they were probably contractions and that I should time them. So I did. I timed them at being 30 minutes apart. I didn’t want to take any chances so I called my husband to rush home so that we could go to the hospital. I made sure that our bags were packed just in case this was it.
We got to the hospital and waited for about 2 hours before I was seen. I guess everybody waits until Friday night to have babies. Once I got into a room and hooked up to the monitors I found out that my contractions were actually 3 minutes apart. What the hell? I was not ready for a baby. We had no diapers, wipes, no baby stuff at all. Apparently I was having lots of little contractions that I couldn’t feel so that’s why my timing was off.
That night I was admitted to the hospital. I stayed for 7 days. Those 7 days were nerve wracking and boring and painstaking. At 29 weeks I was already 4cm dilated. I think the quiet time in the hospital did us a lot of good. Without all of the meds I would’ve never been able to keep Tristan in for another 5 weeks.
5. Tristan’s name
My sweet baby boy went without a name for 29 weeks. I was determined to name my son Caleb Josiah but my husband hated the name Caleb. It just didn’t sit well with him but it was my turn to pick a name since he got to choose Tatiana’s name. However, at 29 weeks I was admitted to the hospital again.
One day while we were sitting in the hospital watching HGTV, my husband goes “what about Tristan?” My first thought was that I really love that name. It had actually crossed my name a few times but I decided against it every time. What actually came out of my mouth when he said that was something along the lines of “why do you always have to pick the good names?” Of course I tried to take credit for it but he wasn’t having it. So we decided to go with Tristan and keep Josiah as a middle name. I honestly don’t think my husband even liked Josiah but I think he just went along with it to make me happy.
Now that Tristan is gone, the meanings of his name are much more significant than we knew when picking them. Tristan means tumult or outcry and is derived from the medieval tale “Tristan and Isolde.” If you’re not familiar with the story, Tristan was a Knight of the Round Table and the tragic hero of the tale. He is thought to be a Arthurian legend. So skip all the boring stuff, I always say that Tristan was named after a legend.
Josiah is a Hebrew name meaning Jehovah has healed. Ultimately this is what I think of every time I think of Tristan dying. I think of God healing my sweet baby boy so that he wouldn’t have to fight for his life and struggle to breathe every single day.
So if you ask me what Tristan’s name means, I will always tell you that it means “he’s a legend that God has healed.”
6. Tristan’s birthday
You already know that Tristan was born on October 15th but did you know that October 15th is National Pregnancy and Infant Loss Awareness Day? I never made this connection until a few months after Tristan was born when I saw someone else post about it. Most people don’t think about that day unless they’ve been affected by it or know someone who has. I didn’t know that 6 months and 4 days after his birth, I would become that person.
Something else that a lot of people don’t know is that Tristan’s fight for his life began that day.
7. Involuntary Breath Holding Spells diagnoses.
Around Thanksgiving we began to explore that Tristan was possibly having these things called breath holding spells. I had never heard of them and neither had the doctors or nurses in our hospital. We were told about them by a neurologist who had happened to witness one of Tristan’s events. That morning before I got to the NICU I got a call from the doc who had seen Tristan that day. He mentioned the possibility of Tristan having seizures. My heart sunk. No one wants to think of the possibility of their child having seizures. Do people who have seizures live happy, healthy lives? Absolutely. But that’s not something that I wanted for my baby. Never in a million years. Looking back, I’d take the seizures any day over him not being here.
Two EEGs later, seizures were ruled out. Instead we discovered that Tristan would have desaturations and bradys because of two things: involuntary breath holding spells and acute respiratory events. I won’t go into details about IBHS but the Child Neurology Foundation does a great job of describing it here. They actually describe exactly what Tristan’s spells looked like.
I mentioned Tristan’s IBHS only because I think it prepared me for everything. I think seeing Tristan turn blue and stop breathing multiple times a day prepared me to be a better mom for him. It prepped me to act quickly and to stay calm. I remember when our home nursing agency came for a visit a few days before we were getting ready to be discharged from the NICU. It was our rooming in day and we took a trip back to Tristan’s room so that they could see Tristan and “assess” him. Needless to say, all of the poking and prodding and tenseness in the room made him anxious and pissed him off. Then came a spell. I started timing as soon as it began and I knew what to do if it took him too long to take a breathe.
They were scared like anyone should be. One nurse actually walked out of the room and fainted down the hallway. She blamed it on her blood sugar but we all knew that wasn’t true. Tristan scared her away and I’m glad he did because I didn’t want her in my home to begin with. She didn’t give me a good vibe and mentioned turning monitors off when parents weren’t looking. 90 seconds later, Tristan took a breathe and his spell was over. One of the nurses said “mom, you looked so calm during the whole thing.” Yes, on the outside I’m calm because when my child’s life is in my hands I’m not going to panic because panicking will kill him.
I’m thankful for those spells because they prepared me for any scenario that we would ever encounter at home, on the road, or in the hospital.
8. Tristan always found the light no matter what
This sign always, always, always pissed me off. Tristan was notorious for finding the light no matter what. Any time someone would try to block the light during bedtime there was always a small shining light somewhere. One night after Christine and I finished doing trach care we turned out all the lights so that I could cuddle with TJ before bedtime. She pulled all the curtains to give us privacy but there was still a little shining light on the ceiling and he found it. I would always joke with him that he wasn’t allowed to go into the light. Now, I don’t think the joke is so funny because the day he died there was a little light on the ceiling.
9. Chest compressions
There were two times when chest compressions were done on Tristan: the day he was admitted to the PICU across the street from our home NICU and the day he died.
After 13 days of being home I brought Tristan to the hospital because his breathing patterns had been off and he had taken too long to recover from an IBHS. I had done everything that I could at home and knew that I had to bring him in to be seen. Most days I fight myself on whether or not this was the right decision but that’s an entirely different story.
We were admitted to the PICU because Tristan was on a ventilator and his CO2 was sky high. Once we got upstairs to a room the tests and poking and prodding began. All of the commotion of getting Tristan transferred to a room caused him to have a spell. Within 30 seconds they were coding him and about to begin chest compressions. The only thing that stopped them was because I had previously met the doctor on call and he had been in the room. I yelled for them not to intervene and they listened because he was there.
I couldn’t stop them the second time. Just thinking about it really pisses me off because it was unnecessary. They were trying to do an echocardiogram on TJ because his pulmonologist got him confused with another patient and told the docs that he had heart issues. They proceeded to do the test despite me saying otherwise. Of course the pressing against his chest pissed him off and caused him to stop breathing. This time no matter how much I yelled they weren’t going to stop. They bagged and when that didn’t work, they began chest compressions.
I hated them for that and I still do. How dare you not listen to me, as his mother, when I’m telling you that I know my son. And how dare you write in his medical records that I appreciated that? No, I didn’t. I didn’t appreciate you doing unnecessary chest compressions on my baby boy with already fragile ribs.
10. My car was totaled
You’re probably thinking what the hell does this have to do with Tristan? Everything.
This sign was probably our biggest and most notable sign from God but I didn’t think anything of it at the time. Two nights before Tristan died, my car was totaled. It was parked in the same spot that I park in our parking lot every day, under a tree. The weather was perfect that night and out of nowhere the tree limb fell. It fell and totaled not only my car but my neighbor’s as well.
It fell at the time that I’m usually getting in the car to go see Tristan but for some reason that night I wasn’t in the car at that time. I had been waiting for my husband to get home from work to leave.
I question myself about this sign every single day. It’s the craziest sign that God could have sent us. When the tree limb fell, I didn’t know my car was totaled at the time. I didn’t know the damage until it was assessed by our insurance.
30 minutes before Tristan died was when I got the call that it was totaled. If that isn’t God speaking to me then I don’t know what is.
I question myself about what would have happened had I been in the car. If I was in the car at the time, would God have spared Tristan? I’ll never know the answer to that and the only thing that I can do is find peace in the fact that knowing my son isn’t struggling to breathe anymore.
11. Tristan was tired
When I announced Tristan’s death, I shared this picture. This was the last picture that I took less than an hour before his passing. I remember thinking that he looks tired. Maybe he was just fighting his sleep, I thought, because that was something that, like me, he always did.
No. This was a different tired.
Tristan was tired of struggling, of fighting for his life day in and day out. He just wanted to be at peace. And how do I as his mom tell him that he has to keep fighting for me?
I can’t even imagine what it’s like to struggle every day and not be able to breathe on your own. And to be a baby at that makes things 10x even more unimaginable because they can’t do anything for themselves.
When people ask me every day how I’m doing, I think about the signs especially #11. Every single day I would say to Tristan “don’t give up on me because I’m not giving up on you.” In the end, I don’t think we gave up on each other. I think that we both knew that peace was waiting for him at the end of that light that he would always chase in his room.