Weathering Storms and Finding Rainbows (Again)

They say the brightest rainbows come after the strongest of storms.

Our rainbow journey is a true testament to this statement. The beginning of 2017 found ourselves dealing with the loss of our angel son. Mid 2017 we then found a rainbow with our little miracle on the way. To say that we experienced some of the lowest lows and highest highs of our lives during 2017 is an understatement. For each one of these moments though, we are thankful. Our journey has shown us how much love their is in the world, that no matter what there is always HOPE.

This couldn't have been true enough during some recent events during our journey. Just when we thought our rainbow journey to our family happily ever after was finally coming to a close with the birth of our son, we were hit with some unexpected news....

From the Beginning
Where to start? Let's rewind to 17 years ago. I was a 17yr old high school student, just trying to get through my junior year when a routine eye doctor appointment ran into a hiccup. My eye doctor noticed I had what she called "something abnormal" looking on my left retina. She sent me to a specialist who ran a few tests and found that I had something called "Retinal Telangiectasia" an abnormal formation of blood vessels on my retina. Being so naive back then I just brushed it off. I had absolutely no symptoms of discomfort and the doctor just assumed it was a congenital abnormality, meaning that it was probably something I was born with and probably wouldn't cause any issues since I had already gone 17 years without anything bothering me.

Flash forward 17 years later, now 34 and pregnant. I was referred to a new retina specialist since it had been over a decade since my last follow up on my eye condition. My new doctor grew concerned once he noticed I was pregnant and after a routine follow up appointment, I got a frantic phone call suggesting that I should go and get an MRI of my BRAIN! What?!

They Found Something...
As you can probably imagine, at 35 weeks pregnant, the last thing you want to hear from your eye doctor is "you should get a brain MRI". I was so confused, but my doctor proceeded to tell me that my retina condition, this seemingly innocent condition that had never caused me any issues for over 3 decades... could be connected to cerebral brain issues, mainly in the vascular systems. It meant that there was a risk, a slight one, but still a risk that my eye condition could be connected to other abnormal blood vessels in my brain. So after discussion with my OB (baby doctor) they all agreed it would be good to just do an MRI to be 100% sure that labor and delivery complications wouldn't arise if I did have something.

So on 12/6, literally one month before my due date I went in for my very first MRI. One of the questions they ask you before your appointment is "are you claustrophobic?". Let me tell you, you never know exactly how claustrophobic you can be until you get put into an MRI. It's basically a large magnet scan with a little tunnel that you're slid into and you have to lay completely still while the machine produces loud noises to scan your body. Since I was doing a MRI scan of my head, they also added in a fun plastic cage over my head to make sure I was as still as possible. Let's just say that doing an MRI for the first time, while 35 weeks pregnant is not the greatest thing in the world. I had a few moments of minor freak outs during the 25 minute session, but thankfully the scans were over before a complete meltdown occurred!

So we left and not even an hour after the scan I got the phone call you never want to get. I got the call that they did in fact find something in my head. They called it a "grade 1 Arteriovenous Malformation" or AVM. What is an AVM? It's basically an abnormal formation of blood vessels in the brain, usually involving arteries and connecting vessels. You can find out more information about them HERE. It is a super rare disease, affecting less than 1% of the general population. Most people don't event find out about having an AVM until it's too late and they experience a brain hemorrhage or stroke. As you can imagine, my world literally crashed down on me after finding out that I had what they affectionately call "a ticking time bomb" in my head.

My first thoughts were for my baby, my beautiful son to be and not knowing if his mommy would be able to watch him grow up or if I'd have to worry about major brain bleeding at any given time. One of the worst things that happen when you have a medical scare is the internet. I probably read through every single medical journal, article, site about AVM's and with each new discovery came a new wave of fear and anxiety.

After the MRI results were released to my other doctors, I got another call, this time from my OB. Since AVM's are so rare, she hadn't even heard of what they were. After some phone calls to other doctors, they realized that whatever was going on with my eye and brain could now also be connected to another rare disease (it just gets better and better right?) called "Hereditary Hemorrhagic Telangiectasia" or HHT. HHT affects blood vessels of the body, so basically, the assumption is that if I have these funky blood vessels in my eye, now my brain,  and IF they're connected to HHT, they could be EVERYWHERE in my body, mainly my in my lungs, liver or stomach.

As you can imagine, going from being told I had a possible AVM in my brain in the morning, then a few hours later being told I could potentially have them all over my internal organs sent me into a tailspin. I thank God that my mother in law was over with me when I got the phone call and she was there to help console me. My parents were visiting my sister in LA at the time, so they immediately FaceTimed to comfort me and Peter miraculously walking in the door a few minutes later felt like the best group hug from my loved ones in what was one of the lowest points in my personal life.
They helped me through it all! 

Anxiety and Fear
Let's just say that the next week and few days after my initial diagnosis were some of the darkest times of my life, basically right up there with the loss of our angel son. It felt like life had come back and slapped our dreams of a family happily ever after out of our hearts. We were all crushed at knowing that we had to struggle through yet another set back.

There was a flurry of doctor's appointments that occurred, mainly to plan out how to keep me and baby as safe as possible for the remainder of my pregnancy and birth. The biggest concern is that all of these newly discovery vascular abnormalities and potential HHT diagnosis could mean some serious complications for me. Pregnancy does a number on your body. Your blood volume changes and your body pretty much works overtime in your late 2nd and 3rd trimester. So the concern was that I could rupture one a blood vessel, potentially hemorrhage and have major complications. My pregnancy went to from being a miracle to now being high risk.

A week after my first MRI, I went in for a second scan called an MR Angiogram or MRA. It's basically the same thing as an MRI, but much more tolerable since it's less time, thankfully, since it takes a scan of the blood vessels of the brain instead of the whole structure. We anxiously awaited those results since they were searching for any evidence of a potential aneurysm. What we didn't expect was some interesting MRA results.

Conflicting News and Neurosurgeons
During another doctor's visit the next day, my MRA results arrived and basically said that the radiologist who reviewed my scans couldn't see any evidence of aneurysm (yay!) and now here's the kicker... no obvious signs of the AVM!! My primary physician, PB and I were shocked and didn't know what it all really meant. Did I have an AVM and HHT? Or not? The only answers to these questions could come from a neurosurgeon since they're the only ones who could really tell me what going on. So the waiting game began. We saw it as a 50/50 chance at really good news or really bad news.

Literally 14 days after this whole nightmare began, we finally met with a neurosurgeon. There was so much fear going into the appointment. This is the person who would point us into the direction we needed to go into, pretty much answering all of the questions that had been consuming our minds the past two weeks.

Breathe, Just Breathe
The first words out of our neurosurgeon's mouth when we walked into his office were "breathe, just breathe". He sat us down and was absolutely kind, I think he could feel our nerves all the way out in the waiting room. We carefully went over all of my scans together and eventually said "I don't even think this could be a true AVM". He mentioned that there was something found on the scans, meaning that there is something there, but it could be what he called "a venous anomaly" or just an abnormal dilated vein which could be due to me being pregnant or just something that is there and that hasn't caused any problems and may never cause any issues.

We won't know for sure what exactly is going on until after our little rainbow has arrived... is what I have an AVM? is it just a weird vein?...  I'll have to do something called a cerebral angiogram, they put a catheter into one of my arteries, thred it through my body, then inject a dye to get a clearer picture of what my blood vessels are doing exactly. But after speaking with the neurosurgeon, he seemed more than optimistic that the outlook was good. We definitely felt so much better after speaking with him and knowing that he wasn't too concerned with what's going on and that our main priority right now is just having a healthy and happy baby!

Never Underestimate the Power of Love
One thing that I truly believe helped us during this time were the prayers, love and light that the wonderful online community has sent our way during these tough times. I debated whether or not to share our medical complications with everyone. But the more I kept what was going on to myself, the more it made me feel alone. It became hard to put on a happy face when there was so much going on inside. After sharing our struggles with our family and some close loved ones, I noticed I felt better. So when I went public with what was going on, I was overwhelmed with all of the support and prayers everyone sent. It's never easy to let everyone know that there is something wrong, but in this case, I'm so thankful that I did share. I wholeheartedly believe that it was through the amazing prayers and hope everyone sent to us that we were able to get some good news about my condition. We can't thank you all enough for the *hope & hearts* sent out way! It shows that you really can't underestimate the good in the world, that love can help conquer even the darkest of moments.

So what's next for our PB&J rainbow journey? Well because nothing is 100% ruled out, we are still considered "high risk". Our doctor's are all aware of any potential complications that may arise, so I'm being monitored everyday, blood pressure checks 3x daily at home and I'm pretty much not to be alone until baby arrives, but hey, it could be worse right? We're also on track for a scheduled C-Section to prevent any strains of labor, so on the bright side, we have a potential due date for Baby PB&J!

We just ask everyone to continue to please send good thoughts and prayers our way for the reminder of this pregnancy, our C-Section and for everything left to come in the future! We know we're not 100% out of the woods yet, but we're thankful to be heading into a positive direction.

Thank you, every single one of you who sent your light, love and prayers our way! You have no idea how much this has meant to us! Here's to the brightest end to this rainbow journey and to our family happily ever after very soon! 💜🌈

*Rainbow Maternity Photoshoot by the incredible White Rabbit Photo Boutique

No comments

Note: Only a member of this blog may post a comment.