Pregnancy update and new diagnosis

At 12 weeks, I saw my neurologist for the first time and was sent right to the ER where I had so many tests run. I had 3 failed spinal taps before a 4th successful one followed by a lumbar drain. I was still losing my vision and still in so much pain but we finally had a diagnosis for me. I was diagnosed with Idiopathic Intracranial Hypertension (IIH). After a lot of back and forth, we decided to go ahead with the brain surgery for me to have a VP shunt placed. This surgery happened at 13 weeks pregnant. We had a quick ultrasound before and after my surgery to check on our sweet baby and she was doing amazing!

From then on, I was considered high risk for my pregnancy. I had a lot of follow up appointments with neurologist, neurosurgeons, neuro opthamologist, and of course my high risk doctor. The entire time everything was looked perfect with our baby. At 15 weeks, we found out we were expecting another girl! At 20 weeks, I needed to have my VP shunt adjusted because it was over draining and causing me more issues. Around this time, we also found out Koryn’s orders for Alaska would be cancelled due to my medical issues. Shortly after, we found out we would be moving to Washington state instead! Then we started the whole moving process on a short timeline.

I got to Washington at 32 weeks pregnant and had my first midwife appointment the day after we got here. My midwife wanted to clear me by their MFM (high risk doctor) to make sure I could be seen with midwives and even possibly deliver at the birthing center!! This was amazing news since I was seen at a birthing center with Kenzie. Then I had my appointment and ultrasound with the new MFM. This is where our world started spiralling.

The doctor said he would clear me to deliver at the birthing center but there were some concerns with our baby’s heart. He wanted us to have her checked out again ASAP and referred us to the Seattle Children’s Hospital. I was thankfully about to get in quickly. The day before I turned 34 weeks pregnant I had a fetal echo done.

This is when we found out our sweet little girl has a congenital heart defect (CHD) called Hypoplastic Left Heart Syndrome (HLHS). The left side of her was much smaller than the right and it effects how her blood flows and processes throughout her body. Since she is still growing and my body is doing its job to help her blood flowing and pumping she is doing great.

However, due to this condition we have a long road ahead of us. We will be moving into the Ronald McDonald house very soon and will be there until we can bring our baby home. She will need several heart surgeries with the first happening shortly after she is born. I will need to be induced at 39 weeks so we can ensure she makes it safely but the plan is for me to still have a natural, unmedicated birth.

Once she is born, she will head to the NICU while we wait to see how she is doing. After she has her surgery, she will be moved to the cardiac ICU. We have many, many more appointments over these next few weeks and sissy has a long road ahead of her. The doctors and specialist I spoke to after estimating a 4-6 month stay for our little girl and I will be in Seattle (an hour away from our home) while she is there. There’s still have a lot we need to figure out and that we will learn along the way.

I’m hoping by writing things down that it was help me handle everything we are facing and give me an outlet. It’s been a long and emotionally few days for our family but this baby is already so brave and so strong.

https://www.cdc.gov/ncbddd/heartdefects/hlhs.html

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It’s a….

We are almost halfway done with this pregnancy and baby #2 is another girl! This has flown by but has always caused me so many health issues. I am so beyond thankful for this sweet little one still growing strong despite everything I’ve been going through! It’s been a while since I updated on here so I decided it was time. We are expecting our second little girl late December/early January. We found out when I was 15 weeks that I’m having another little girl and Mackenzie is so excited to have a little sister!

I’ve been having different follow up appointments almost weekly since my brain surgery. Last week I needed to have my shunt re-programmed due to overdraining. So far the changes have been great for me but I’m still have some headaches. It can take a full 4-6 weeks before my body is completely use to these changes. With all my health issues, our orders to Alaska were denied. We need to be somewhere where I can receive the right type of care with the right types of specialist and right now Alaska in not that place. We are still moving very soon but we will be moving to the Pacific Northwest instead! We are so excited about this new duty station and this move! We are going to be reunited with so many of our friends and Kenzie will be able to meet her godparents for the first time!

These next few weeks are going to be a little crazy between all of my final doctor’s appointments in Tennessee, visiting our families in Florida, and making the trek to Washington.

Idiopathic intercranial hypertension/pseudo tumor cerebri while pregnant

Less than 2 weeks ago, my whole world was turned upside down. My symptoms started over a month and a half ago by this point but I finally got an answers a little less Jan 2 weeks ago. On top of have headaches where I couldn’t function a the pain was so bad I was throwing up almost daily, I was also losing my vision and knew that if something wasn’t done I would go blind sooner rather than later. Two weeks ago I had my neurologist appointment and he sent me right to the ER where I was admitted. We were then in a race against time to save my vision.

When I first got to the ER, the neuro ophthalmologist was in my room in the ER less than 10 mins after the ER doctor called them and I had so many tests done on my eyes. The ER doctor said they have never had they come down that fast for anyone but my case was pretty bad. The swelling was so bad that I was diagnosed with grade 4 and 5 Papilledema. The clock was really ticking now to save my eyesight and I was faced with the hard reality that I could never get to see the face of this baby I’m carrying or that I wouldn’t be able see Mackenzie grow up. It was very hard for me to come to terms with. While I was in the hospital, I had an AMAZING medical team who always made sure I knew everything that was going on and ALWAYS made sure I was informed and comfortable. My medical team always told me whatever decision I picked (the medication or surgery) they would be behind me 100% of the way. I am forever grateful for my medical team for giving me back my life.

We were fighting my very fast progression of vision loss because of the pressure in my head. And we were fighting for the best treatment option for me and this baby I’m carrying. When I first got told about my IIH and Papilledema, I knew I had two options, either medication or brain surgery for a shunt placement . In reality, given how fast my condition was progressing and the added fact I’m pregnant, my options turned into just one option. In the end, the shunt surgery was the option for me and my family.

Today, I had a follow up with my neuro ophthalmologist and he said if he didn’t know my history he wouldn’t be able to even tell I ever had swelling in my optic nerves. My vision is back to normal! I still have a little bond spot on my left eye but that could take a few weeks to return to normal, if it ever does. If it doesn’t go away, then it’s something I can definitely live with given the alternative. I have to go back every 6 weeks during my pregnancy to have my eyes checked but my doctor is confident that my shunt is doing its job and I shouldn’t have any issues with my vision during this pregnancy.

I’m still extremely exhausted all the time and we are doing a lot of driving back and forth to Nashville for all my specialist but I am so thankful for my doctors and the treatment I am receiving. We’re slowing going back into a normal routine and next week is going to be hard with Koryn going back to work but we’re making it through day by day. Thank you so so much to everyone for your love and support for our family during these past few weeks. Our world has been turned upside down more than once but we’re coming out fighting and stronger than ever after this. Now to continue to grow this little one until Christmas 🙌🏽💚🎄

Our family is growing!!

After a very long few months, we are very excited to announce that we are adding to our little family! A few weeks ago we found out I am pregnant again! I could not believe my eyes when I saw those lines and as a matter of fact I didn’t. I ended up going out in the middle of the night to buy more tests since of course I would be out of tests that day. Things got even more confusing when a super faint second line appeared on one test but the digital one said not pregnant. I did know that the digital test required more HCG hormone to say pregnant but this was not helping my confusion on anxiety. Since it was already so late at night, I decided to just got to bed and test again in the morning. Koryn woke me up at 4 am to test before she left for PT that moring. This is when our lives changed in the blink of an eye. Every test I took said pregnant! 👶🏽

I could not believe it! We slowly started breaking the news to our close friends and family and everyone was so excited. We told Kenzie that she was going to be a big sister and she spent the morning running around the house screaming “big sister, big sister!” She is so beyond excited to become a big sister.

Earlier this week, I had my first ultrasound and everything was beyond perfect with our baby! The baby was growing right on track and had a perfect heartbeat of 135! For now, I am being seen at the same birthing center I was seen at with Mackenzie even though I won’t be delivering there. I have made contact with a home birth midwife in Alaska and will set up my first appointment once we get there. Because of my pregnancy, we will be reporting early to Alaska so I can have the baby up there rather than making the trek with a newborn, toddler, and dog. 🤰🏽👶🏽

We are so exciting for baby Rivers #2 to arrive in December 💚❤️

Until next time,

The Rivers Family 🌈

Happy Birthday, Mackenzie

Happy second birthday to our sweet little girl. I can’t believe it has been two years since you came into our lives. You can in after a quick 5 hours of labor and were smiling from the second you were born and haven’t stopped since. You are so bright, beautiful, smart, kind, and loving. You are the brightest light in any room and the way you smile and laugh is so contagious to anyone around. It has been two years since you have come earthside and people still stop me daily telling me how beautiful you are and it makes my heart so happy to be your mom.

This second year flew by and I’m still in shock you aretwo today. You are tearing at a lightening speed and constantly surprise me by all that you know. I was so taken aback when you asked me for a snack bag earlier this week while we were packing our school lunches. I can’t believe how I got so lucky to be your mom or how we both got so lucky to be your parents. I could sit here for hours and list everything you have accomplished over the past year but we would be here all day. The biggest accomplishment you have achieved over the past few months is being potty trained! You love picking out your own clothes and undies to match. You are obsessed with the movie Frozen and hearing your sweet little voice since the songs is one of the cutests sounds in the world.

This next year is going to be filled with so many adventure. We will be moving to Alaska soon and in the winter you will become a big sister. You are always running up to me and kissing my belly while talking to “Kenzie’s baby” and telling my belly you love the baby. We love you so much our sweet little girl and happy belated birthday!

Month of the military child

April is the month of the military child and if there’s one thing these past few years have taught me it’s how strong a 2 year old can truly be. If any of you know even the smallest bit of what we have gone through over the past four years, you’ll know exactly how crazy, unpredictable, and amazing our life really is. From the time I was pregnant with Mackenzie until now, our lives have been full of days, weeks, and months apart. The older Mackenzie has gotten the harder it has been to explain to her what it means when her Baba has to leave.

Whenever I ask her where her Baba is, her first answer is always “Baba went bye-bye”. It’s the most heartbreaking thing in the world when in reality Koryn is home and not away. In her toddler mind, Mackenzie has gotten so use to Koryn being gone so it’s almost automatic for her to say that.

Some days I have no clue how I’ll make it to dinner time much less 6 more months of dinner times before our family is together but I do know my little family is stronger than any time we spend apart.

Kenzie has been on countless 12+ hour road trips, numerous flights back home to meet family for the first time, and has also spent more night than I’d like to admit crying for her Baba and not understanding when Koryn isn’t here.

In a few short months, she’ll be taking the biggest adventure of her life when we move to Alaska but this was the best (and only) decision to keep our family together even if it means moving away for the next 3 years.

We have been so extremely lucky and blessed to have such an amazing support system both near and far for our family. Mackenzie is so lucky to be surrounded by so many people who love and care for her every single day.

This month is about all the military children who are part of this life and how amazing they all are.

We’re moving again!!

Happy re-enlistment day to my wife! Today she made the commitment for another 6 years in the Army and with that comes new orders! On Friday, we found out where the Rivers family will be moving next! We are so excited to announce we will be leaving Tennessee at the end of the year and moving to….

ALASKA!

You read that right! The Rivers are trading in their beach gear for some skis and snowboards. At the end of the year, we will be saying our ‘see you laters’ to Tennessee and starting our trek to Alaska. Tennessee has been an amazing adventure and we have made so many amazing friends here so it is going to be hard to leave but home is where the Army send us.

It’s going to be so hard to leave this amazing place but we are so excited to be together for the next three years and see what adventures Alaska brings to our family. We have already started to plan for this move and I’m so glad we have more than a two week notice to move this time around.

Stay tuned to read more about our Alaskan adventures and the experience of a lifetime that our family will be taking over the next three years!

Until next time,

The Rivers Family