Remy Hope- Birth Story

Remy’s pregnancy, labor, and delivery was far from normal. From the second I found out I was pregnant with her, I knew it would be a challenge but little did I know just how much of a challenge it would be. After I had my brain surgery at 13 weeks pregnant, I still felt like something was off with the pregnancy. I couldn’t connect to Remy no matter how hard I tried and something always get off. Thankfully, through all my appointments and ultrasounds in Tennessee everything with Remy was perfect. Then we moved to Washington and everything changed in a matter of days.

My first appointment was the day after we got her and I was sent for a growth ultrasound since I was 32 weeks pregnant and considered high risk. It took 2 weeks before I could be the appointment set up and that’s when everything changed. We found our Remy had hypoplastic left heart syndrome, a hypoplastic aortic arch, and a bicuspid aortic valve. This drastically changed my plans for labor and delivery since she would need open heart surgery shortly after birth. At 36 weeks, I relocated to the Ronald McDonald House in Seattle to have Remy watched closely at the children’s hospital until delivery. My induction date was set for December 22 and Remy would be taken right to the children’s hospital after birth and I would follow shortly after since I was given birth at the University of Washington.

My mom flew in on Wednesday and I woke up Thursday morning and noticed I was bleeding which was exactly how my labor started with Mackenzie. I went to the hospital to get checked out and I was in early labor! I wasn’t having any contractions so I just went back to the Ronald McDonald House for the day. Throughout the day, I was having some contractions and still bleeding but nothing major. By 3 a.m., I woke up because I was so uncomfortable and made a call to labor and delivery at the hospital and they had me come in. I was still around 3-3.5 cm dilated but since it was the day before my scheduled induction, we decided to just admit me and let me rest there and see where I was in the morning.

Around 8 a.m. the doctor’s started coming in and going over my plan for the day.They were going to start my induction that day since I was already in early labor. The plan was to start with a foley bulb and see where things go from there. However, foley bulbs will really only help you dilate to 4 cm or so before it falls out. So I was checked to see how far along I was by this point to see if a foley bulb was an option. I was already at 4 cm so that plan went out the window. We decided to just let me keep laboring on my own and not do anything to speed the process along at this point. I had amazing labor and delivery nurses the entire time! I was hooked up to monitors to check Remy’s heart rate and my contractions.

I pretty much just labored on my own for the next few hours. However, the machines were pretty awful and weren’t picking up Remy’s heart rate or my contractions consistently so they had to be readjusted ALL the time. The nurses were in and out of my room all the time checking on Remy and her heart rate. At one point, I was getting out of the tub and felt my water break. It was so different from with Kenzie since I was pushing with her when it broke and it was a huge gush. This time is was a slow trickle but I knew it broke. There was so issues with determining if it actually broke or not so I was checked again and sure enough it broke and I was finally at a 5. This is where my labor stalled. I hit a mental block and it was so scary. Once I knew my water broke, I was so scared Remy would come just as fast as Kenzie did and it really hit me hard.

I cried a lot at this point. I remember saying I wasn’t ready for Remy to be here and I wanted to keep her in and keep her safe. I know once she was born we were facing so much uncertainty but if I got to keep her in longer than she would be safe. This point in my labor was so emotion for me and I wasn’t able to overcome this part in my labor on my own. It really stalled me and I spent a long time at 5 cm so we decided to start me on a low dose of pitocin. This was not an easy decision for me at all but I knew it was the best option for me and Remy. Pitocin was the devil. It was horrible. I was having double peaking pit contraction followed by my body having its’ own contractions. I wasn’t getting a break and the monitors still were not picking up on my contractions and we kept getting weird readings for Remy. Even with the change of monitors, the readings were still off. I couldn’t get through the triple peaking contractions and start getting horrible headaches, which we knew might happen if my VP shunt started not working while in labor and also started having panic attacks. I needed to be hooked up to a heart monitor for myself and we were hoping my headaches would go away once labor was over.

Things started to get really scary around this time and Remy’s heart rate started to drop. Her heart rate needed to be watched very closely due to her CHD’s and we knew if it got to low a c-section would 100% be needed. My room was actually right next to the surgery room just in case her heart rate dropped too quickly and we needed to get her out ASAP.

Because of her heart rate and my issues with my shunt and the panic attacks, we decided the safest option for both of us was for me to get an epidural. This was not something I planned or even wanted especially after my horrible experiences with my spinal taps before my surgery back in June. But I knew we needed to get things under control as safely as possible to hopefully avoid a c-section. The epidural semi-worked for me. The left half of my body was numb but I could still feel the right side and could still feel 80% of the contractions but they weren’t as strong as before. They had to re-adjust the epidural several times and there was still a majority of time where I was still feeling everything.

Finally, I felt the urge to push. I told the nurses they needed to call my doctor back in because it was time. He came in pretty fast and checked me again and he told me I was fully dilated and they could see her head. The way he said all of that is still so funny to me because he said it like he didn’t even really believe it himself. My MFM doctor happened to be on call that day too and she came in the room and was so excited she got to be there for Remy’s birth. They wanted me to do a “practice” push then things got real. She was already halfway out and they had to quickly call the NICU and CICU staff. Before I knew it, they were taking apart the bed, gloving up, my room was full of doctors nurses, and specialist and we were ready. I pushed just a few times and Remy was out!! At 5:09 pm our sweet little fighter was here. From the time I told the nurses I had to push to the time Remy was born, was a grand total of 6 minutes. My mom was able to get the whole thing on video and everyone was surprised with how fast it went.

Once she was born, she was placed on my chest but her breathing was shallow and she wasn’t crying like they would like. It felt like it was only a few seconds before the NICU doctor said she needed to take Remy so they could help her. I cried, a lot. I barely got to see her but I remember saying how soft and warm she was. It was weird describing what she felt like but those are the two words I remember saying. Remy was kept in the room with me while they worked on her and stitched me up. Koryn stayed by Remy the entire time and my mom stayed with me.

Remy’s oxygen levels were pretty low so they needed to take her to the NICU to help me. The doctor brought her to me so I could give her a kiss before they took her away. It would be 2+ hours before I could see her. Koryn kept me updated with what was going on with Remy and let me know she needed to be intubated and sedated. Transport from Seattle Children’s Hospital arrived around 7pm to come take Remy to the children’s hospital. They Brought her down to see me before loading her into the ambulance for her ride over. Remy was sedated and looked so so tiny. I got to hold her hand and talk to her but I was only allowed to see her for 2 minutes before transport said she needed to go. This was one of the hardest things I had to face. I was still dealing with postpartum issues and now my newborn was heading down the street and I would have to wait to hear about what the plan was for her surgery. Koryn went with Remy and I was moved to the recovering ward. By 11 p.m. I was cleared to leave and head over to the Children’s hospital but Remy was stable and there wasn’t any plans for anything to be done that night so we decided I would just stay the night at the University hospital and rest before heading over in the morning.

The next few days and weeks we so emotional for our family but our sweet little Remy is such a fighter.I’m sure there are things about her labor and delivery that I forgot or even blocked out for one reason or another. Overall, Remy’s birth did not go as planned but I am at peace with how it went and I know everything happens for a reason exactly how it was supposed to happen. Remy has been the perfect addition to our family and she completes our family.

 

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

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 🌈