Now what?

I really don't know where to begin. I have been avoiding writing this entry, because I was afraid that if I saw the images of our ultrasound again that I would be transported back to that feeling of devastation and despair. I finally pulled them up today, and surprisingly..I was okay. I was actually a little disappointed in the quality and quantity to be honest.

I'll start at the beginning. The night before our trip, I took C, G, and E over to our friends house to stay the night, knowing it would be easier than bringing everyone over at 5am. By 6am Thursday morning, we were on the road. Larry drove the first two hours while while I stretched out (no car seats!) in the front seat and rested. When we arrived in Minot, we grabbed a quick breakfast and I took over driving. Five minutes out of Minot and I could hardly see the roads due to wind blowing snow across the highway. By the way, passing snowplows is one of the scariest experiences, ever. Eventually we made it to Grand Forks and took our exit for Fargo. Within minutes, the roads disappeared as we drove straight into a gusty blizzard. Finally, we arrived in Fargo and managed to only be 15 minutes late to our appointment.

I started out confident. I relayed all medical information to the sweet nurse, Mary, and anxiously awaited the ultrasound. Minutes later I was watching the screen as the tech quickly took measurements. I wasn't exactly sure what I was looking at, but I had a sneaking suspicion that something wasn't quite right. When she took his skull measurement, I could see that there was a shadow behind his head of nearly the same size. I hoped it was just his abdomen. In less than 10 minutes, she was done. That alone was concerning, as I was told it would take an hour. A few minutes later the genetic councilor came in and him and I went over a lot of information that I already knew about. I more or less wanted him there to help Larry learn about what was going on.

Then things took a turn for the worst very quickly. The Maternal Fetal Medicine Specialist got straight to the point and informed us that they found several things on the ultrasound that were very concerning. At first I thought he was just confirming the Down Syndrome diagnosis, but when he brought up the first ultrasound image, my whole world was turned upside down. He told us that the nuchal translucency (fluid behind the neck) had gone from 2.8mm to 13mm in just 3 weeks, and that it now surrounded his whole body. He brought up the image that confirmed my fears, the "shadow" behind his skull that I had seen during measurements was in fact the fluid. He then showed us that baby had pleural effusion (fluid pooling) on his lungs and informed us that all these accumulations of fluid were very likely the result of severe heart defect. Although it was too early to do an echo on his heart, he was able to pull up an image of one minor defect already evident, an EIF of Echogenic Intracariac Focus, or a small mineral/calcium deposit. All these signs, combined with shortened femurs were a sure sign that he did in fact have Downs Syndrome, but suddenly that was the least of our worries.

We could tell from the look on the doctors expression that things weren't good. He wouldn't come right out and say it was fatal, but he certainly eluded to that point multiple times. When I brought up doing an amnio then, he kind of dismissed it. When I asked if we could do it at my next appointment (19w), he again kind of dismissed it, saying "well, we can do it if you want to". His next statement is what brought it all home..."You should probably make an appointment with your regular OB in a few weeks to check for 'signs of life', and hopefully I'll see you in March for your next ultrasound". During all this time I stayed positive and upbeat, but grew progressively more quiet. By the time the doctor sympathetically shook our hands and gave his condolences, I was silent. However, it wasn't until Mary came back in and looked at me in that sweet pitiful way grandma types do that I lost my composure. I cried until I couldn't breathe, and she just held me. Under different circumstances, I would have loved to have that entire staff providing my prenatal care, they were amazing.

The next couple of hours were a blur. Larry drove around town, passing dozens of restaurants, both of us too distracted to pick a place to eat. When we finally did, I hardly ate and just shuffled through the motions. Soon, we were back in the car and on our way home, neither of us speaking. I curled up in my seat and cried and had silent panic attacks intermittently over the next few hours. We finally arrived back in Minot and I took over driving the remainder of the trip. Of course I hit yet another blizzard the minute we were out of town (did I mention that both times Larry drove, the roads were totally clear?). At least the terror of driving on invisible roads with idiots trying to pass kept my mind busy. Eventually we made it home and collapsed in bed..not that I slept or anything.

Just as with the first two times I was given bad news, I went through all the motions. First devastation, then grief, then acceptance, then positive faith. Only this time, anger found it's way in. I was so angry. Angry at God, angry at my body, and positively pissed at the 10 people who announced the pregnancies on Valentines! I literally felt like I was sent home to wait for my baby to die. Why did I have all those "signs", what was the point of me praying SO hard and totally changing my outlook on life, when not only was he not healthy, his prognosis was fatal? I was still seeing those stupid "52" angel numbers and would literally scowl and angrily look away. Why give me all that hope, and then just let me down?

Then something magical happened. I was laying in bed one night several days later and our little guy decided we was going to give a good ol' kick upside the uterus. It actually surprised me it was so strong. My anger melted away and was suddenly replaced with excitement. There was no way a dying baby could kick that hard, right? The next day, there was stronger, more consistent kicking. With each kick, my confidence that my baby was too stubborn to just lay over and die grew. I mean, he is made with my DNA after all, he probably has an extra chromosome just for stubbornness. So maybe, just maybe, he'll make it just to prove everyone wrong.

Where does that leave us now? Well, I am being optimistic, but realistic. I'm not praying for crazy miracles, I'm simply praying his condition improves. If he does pass, I hope it's peacefully and he doesn't suffer, but we'll cross that bridge if we come to it. For now I just wait for those little flutters and kicks that come every so often and talk to him about being my little wild child. I have no intention of going in for a 'signs of life' check-up and will continue to monitor him with my own fetal doppler until my next appointment. If for any reason my condition declines, I have cause for concern, or an emergency arises, I will absolutely get it checked out. However, I just prefer to relax at home with my family until March 18th, and we'll see where we go from there. I believe that if he can make it to 20 weeks, that his chances will improve a great deal and hopefully we'll receive more closely monitored care from there on out.

I continue to be so very thankful for all the prayers and well wishes we have received over this last month. I think that I would be much worse off if it wasn't for all the love and support that has held me up. Mavericks story has been shared on several boards, on my own facebook, and shared to others through friend, so I decided to create a page that will contain all current information and updates in one place as we take this journey. Please feel free to join us over at www.facebook.com/miraclemaverick.

Thank you!
-Lexi

One day at a time.

I'm not even sure where to start, but I felt the need to write. I have said for several years that I wanted to be a blogger, but I could never find the motivation or what I felt was decent enough material to write about. Not to say my life was boring, everyone who knows me knows I am always busy and always doing something. For some reason, it took my whole world being turned upside down to find my voice, so to speak. I find myself falling asleep each night, organizing my thoughts for my next entry. It's freeing.

The last few weeks have been turbulent to say the least. I have received dozens of messages, emails, texts, and calls, and the one thing they all have in common, is that they all ask "How are you feeling". Answering that question has become one of the hardest tasks of my day. There is no blanket answer I can copy and paste in response, because how I feel changes by the minute. One minute I am perfectly confident that everything will be fine, and the next I am curled up in a ball on the couch trembling with anxiety. I am no longer fearful of what could happen, but I still have moments of panic and anxiety because of the stress of the situation. So, for most, I responded with "I'm surviving".

Everyone copes differently, and for a while I thought that the way I was coping was all wrong. For days, I had convinced myself that Elina (our youngest) was the one with DS, and that her case must be so minor no one had ever noticed it. I mean, she has a flat nose, and huge eyes, so in my tormented mind, it seemed logical. Then I hated myself for even having those thoughts about my beautiful girl! The next logical idea was that maybe I had miscarried somewhere along the line and didn't know. We had no idea how long my IUD had been out of place and therefore not functional. That theory sort of made sense, and I wasn't left with any guilt. Then my mind continued to wander, and came up with the theory that maybe I was originally pregnant with twins and one twin had DS and died, and that was why the test came back positive. The fact is, until we get the rest of the testing done, no one knows what could or could not have caused the positive results. Until we get those answers, I will continue to cope, whether it makes sense to anyone else or not, it's what works for me, and that's what is important.

The other thing I have had to deal with is ignorance. Sheer ignorance. While 99.9% of all of our friends/family have been completely supportive and encouraging, there is always going to be one bad seed. I won't go into details, to spare the feelings of those close to the situation, but basically someone in our lives posted a public announcement of their personal feelings on the matter that was extremely inappropriate and in very poor taste. I let this person know that their post was incredibly inappropriate and disrespectful, and in turn myself and our baby were crudely and selfishly attacked, as were the friends and family who defended me. The old me would have gone on the attack and an ugly battle would have ensued, but this entire situation has changed me through and through. Instead, I blocked this person and said a prayer that light and love may shine on the evil and blackness in their heart. I forgave this person. Something I didn't even know I was capable of doing. Whether this little guy is special needs or not, he has already made me a better person.

When it comes down to it, everyone has a stance on this matter. You're either pro-life, or your pro-choice. However, what makes all our friends and family so wonderful, is that despite YOUR personal opinion, every single one of you has said that you support OUR decision, whatever it may be. I am so incredibly thankful for that. A good friend once told me that the people closest to you in life are called your 'sphere of influence'. If you have negative people in your sphere, you are influenced by that negativity. Likewise if you have positive people in your sphere. To say I have been selective in who I include in my sphere would be an understatement and the proof is in the pudding. Every single one of you have been amazing during this time.

I know this is turning into the blog post that would never end, but I did want to let everyone know that we FINALLY have our appointment with the high risk perinatologist tomorrow in Fargo. We will start with an in depth ultrasound, followed by a meeting with the peri. I have my fingers crossed that we will be able to do the amnio at this appointment as well. If you could, please pray for clear, safe roads and good news at our appointment! I will update as soon as we know anything!

Thanks!

- Lexi

Fifty-Two

 

“According to Vedanta, there are only two symptoms of enlightenment, just two indications that a transformation is taking place within you toward a higher consciousness. The first symptom is that you stop worrying. Things don't bother you anymore. You become light-hearted and full of joy. The second symptom is that you encounter more and more meaningful coincidences in your life, more and more synchronicities. And this accelerates to the point where you actually experience the miraculous" - Deepak Chopra

Once upon a time I used to be fascinated with the mystery and thrill of coincidences.  I believed them to be these crazy, seemingly random occurrences that just happened to have something in common with another event I had already experienced. However, over the last year, I have been so swarmed with coincidences, that I had to take a step back and really reevaluate if they were just random occurrence, or someone/something trying to send me a message.

Last Spring, my kids and I were living in a 36' fifth wheel at the KOA in Missoula as we waited for our home in Williston to be ready. The closer we got to the impending moving date, the more I started to notice that I was seeing the number 52 quite frequently. After about 2 weeks my curiosity got the best of me and I decided to try to keep track and record these numbers as often as I was able. On average, I came upon the number 52 about 2 times per day. I saw it every day, consistently. Moving day was finally upon us, and several days later, I realized I had stopped seeing the 52 almost completely. I didn't think anything of it until a few weeks later when it started again, but this time 2-4+ a day. Once again I started recording it and was a little taken aback by how frequently it was happening. I mentioned it to Larry a few times, and at first he accused me of "waiting for the clock to turn to :52". It only took me pointing it out, out of the blue on signs, license plates, building numbers, etc.. for him to drop that assumption. At the end of July, I embarked on a fun adventure across the US, by car, with all 3 kids, to Dallas, Texas to see my family. I planned to leave at midnight, but didn't get into the car until 12:52am. I filled up my tank on the way out of town at $3.52 per gallon. Over the next 24 hours, I not only saw the 52 on the clock, but on exits, mile markers, and various other signs. The second day, I arrived at my wonderful friend Britneys house, address 5225. You are starting to see a pattern, correct? The rest of the drive, vacation, and return trip were all wonderful and my trusty was consistently by my side the whole time. That is, until I got home and once again it disappeared almost completely.

By this time I had started to look into the theory behind seeing recurrent numbers and their meaning. I discovered that what I had been seeing were "Angel Numbers". According to my research, the occurrence of the recurrent 52 meant the following: The repeating Angel Number 52 is a message to have faith and trust in yourself and the decisions and choices you have made in regards to current life chances. Trust that these changes will bring auspicious circumstances and new opportunities to enhance and enrich your life. There is more to it than just the previous excerpt, including the numbers 5+2=7, another lucky number, but I feel that one paragraph itself carries a pretty strong message. The first time I saw my angel numbers we were getting ready to make a big, life changing move. The second time I saw them we were on a very long, potentially dangerous trip across the country to reconnect with friends and family. In both instances, I think I was seeing the numbers so frequently because they were a message that myself and my family were being watched over and protected.

Nearly 3 weeks ago, our lives were dramatically changed when we learned that our new baby showed signs of abnormality. 1 week ago today we got our pre-diagnostic screening test results back, with the news that our little boy had a 99% chance of being born with Downs Syndrome. The picture at the top are most, but not all of the 52s that I have seen in the one week since receiving this news. Nearly 20 times in 7 days that I managed to record. This doesn't include at least a dozen other times I wasn't able to photograph or screenshot their appearance. Even if you don't believe in some higher power, you have to wonder about that many coincidences. I'm a believer.

What does this mean for our little boy? I have to believe that it is once again a message that we are being watched over and protected. Why would I doubt something that has shown such strong signs in the past? My mothers intuition screams that everything is okay with our little guy and he will be born perfectly healthy this summer. I've learned not to doubt my own intuition, and combined with my ever present angel numbers, I feel completely confident in trusting my faith and not allowing fear to exist in any form in my mind. This whole experience has been eye opening in more ways than once and it has brought about immediate and positive changes in my life already. Whatever happens, I know that I need to work on a lot of aspects in my life, and this may have been the nudge I needed to get re-directed and re-centered as a mom, girlfriend, daughter, friend, and human overall.

-Lexi

 

Up or Downs?

World, meet Baby G.

Surprise.


Surprise, you're having another baby. 

Surprise, you're further along than you think. 

Surprise, something is wrong with your baby.

I always thought that the word surprise could only have positive connotations. So often in my life, surprise meant something exciting, something amazing. A feeling of warmth, happiness, and overflowing joy. Never in a thousand years did I think that word would be presented to me on an ordinary day as something so absolutely terrifying. 

On January 21st I went in for a dating ultrasound to find out how far along I was and I was so excited to find out that I was a week ahead of what I thought! One week closer to getting out of that rotten first trimester, one week closer to bringing baby into our family. Oh shoot..there goes me having an August baby. Oh well! The tech turned on the 3D and my jaw literally dropped. I had never seen an ultrasound image so clear. I could count fingers and toes, and that nose..AH! Not all good things last. 5 minutes later I was sitting across from my doctor, staring at her in disbelief as she said "your baby has significant fluid on it's spine. We need to do more testing". What?! There is nothing wrong with my baby. I just saw him/her on the ultrasound! He/she was the picture of perfection! I was silent. For the first time in my entire life, I was completely speechless.

Two days later 3 large viles of my blood were on their way to labs in Chicago and Phoenix and I was scheduled with a high risk perinatologist in Fargo, 7 hours away. For 2 days, shock overwhelmed my system and I went through the motions of our normal life, but inside I was completely detached. I was there, but I wasn't. When you are waiting on test results of that magnitude, every single minute feels an hour long. One day feels like seven. Once I got through the weekend, I felt calm, almost invigorated. I was 100% confident that there was nothing was wrong with our perfect baby. Every fiber of my being said that everything was just fine and the ultrasound abnormality was just a fluke. I continued to wait, impatiently, for that call, but I was no longer worried. Instead, I was more excited to know if our little jelly bean was a boy or a girl! 10 days later, the phone FINALLY rang. "Hi Lexi, it's Libby! We got your results back. The results of your test came back negative. We are just going to keep an eye on baby, but everything looks good. Go back to having a happy and healthy pregnancy! By the way, do you want to know the gender"? I was ecstatic. People say that it feels like a huge load has fallen off your shoulders and now I understand. I literally felt 100lbs melt off my body. 

5 minutes later my phone rang again with that now familiar phone number. Hmm..that's weird. "Lexi, it's Dr. ****, I'm so sorry, we made a huge error. Your baby has a 99% chance of having Down Syndrome". Shock. Utter shock. Replace that 100lbs I literally just lost with a 1000lb boulder that crushed every muscle, fiber, and cell in my body. No! No! No!. This can not be happening. I'm 26 years old! There is no history of chromosomal defects in my family, or Larrys! We have 3 extremely healthy kids already! What the hell are you talking about?!

Day 1: Silence

Day 2: Denial

Day 3: Grief

Day 4: Anger

Today: Hope

On February 13th, Larry and I will be driving across the state to meet with the only high risk perinatologist in the state for a level 2 ultrasound and hopefully do amniocentesis for a 100% definitive answer. I've been telling myself constantly that everything is going to be fine and we'll have one of those amazing stories of beating the odds. I refuse to prepare for the worst when there is still a chance. I pray, constantly. I yell at myself when I feel the fear trying to nudge into my head and I chant "faith" in my head until it deafens all other thoughts.I've never been so scared in my life.

Should you feel inclined to do so, I only ask that you send up a prayer, wish upon a star, toss a penny in a fountain, etc.. whatever feels right to you, and keep our little family in your thoughts during this scary time. Don't feel sorry for us, send us your strength. 

Love,

Lexi, Larry, Cambria, Gracin, Elina, and the bean.