Uncategorized

Emberly Rose’s Birth Story

Emberly Rose Cross – February 18, 2018 – 9:57am – 3 pounds – 14.5 inches long
Emberly – meaning – full of fire

My premonitions about Emberly have been pretty darn accurate from the start. I always knew she was a girl. I always knew something just wasn’t right. And after finding out about something not being right and going through surgery, I knew she would come early. Little did I know exactly how early she would arrive.
It all started on Thursday, February 15th.

I had my weekly visit with my fetal therapy doctors. Everything was looking good and I was feeling totally fine. The previous week, my doctor had noticed two small pockets of fluid where my placenta and uterus connect. These spots of fluid were at the exact locations of the ports they inserted into my uterus during surgery. My doctor wasn’t happy to see them there but didn’t think they would cause any problems. She said anytime you mess with the uterus there is a chance of something going wrong. Because you cannot stitch the membranes (or bag of water) closed, cells multiply in the place where the tiny holes were to create a patch and keep it closed. It was likely that fluid had leaked out a bit, but as long as it didn’t start to drain out and leak out of me everything was fine. I left the appointment that day feeling optimistic and that full term was right around the corner. I was finally in the third trimester.

Two weeks prior, my other fetal therapy doctor had recommended a place where I could get a prenatal massage. Darius, being the incredibly brilliant man that he is, booked me for a massage as a Valentine’s Day gift later in the day after my appointment. The massage was fantastic and I was finally feeling relaxed; like I had really taken care of myself.

That evening Darius and I were hanging out together watching a movie and around 9pm I just didn’t feel good. I was getting cramps, back pain and leg pain. I basically felt like I was about to start my period. I blamed it on the massage, knowing that after I get massages I am usually sore. In the back of my head, a slight panic had set in.

Friday, February 16th
Around 4am the cramps woke me up. Real panic had now set in. This is exactly how my labor started with Lincoln. I was terrified to sit up in fear that my water would break. I shook Darius awake, telling him that I didn’t feel right and he told me to call labor and delivery on the fetal alert card I had been given in case of emergency. Knowing in my heart they’d tell me to come in, and knowing I had no clue what we’d do with Lincoln at this hour, I ignored Darius. I took two Tylenol and went back to sleep.

Now, at around 7am things hadn’t gotten any better. I was having trouble deciding if they were contractions or cramps, but my stomach was tightening up and I refused to time them because I was so terrified. At this point, Darius is anxious and frustrated, telling me I have to call but I knew my doctors office didn’t open until 8. I called labor and delivery and they told me to come in. By the time we dropped Lincoln off at my friend Jen’s house it was close to 8 so I called my regular doctor who told me to come to their office instead because they were obviously familiar with me and my case.

We arrived around 8:30 and I was hooked up to a monitor to track the baby’s heart rate and my contractions. Lo and behold, I was having contractions every 2-3 minutes. I received a shot of betamethasone which is a steroid shot used to help develop a preemies lungs in case delivery is necessary. My doctor informed me I would be staying overnight in the labor and delivery unit to get my contractions under control and stop my labor.
Fear set in. I didn’t want to stay. I wanted to go home and be with my sweet boy. This was not my plan. NONE of this had been part of my plan.

I was started on indomethacin which is used to help stop preterm labor. A few hours later, my contractions hadn’t stopped and they started me on magnesium. Magnesium is horrible and it makes you feel absolutely terrible, but it does it’s job. When they first started magnesium they pumped a lot into me quickly. My arm felt like it was on fire at the spot where the IV was, I was burning up, nauseous, uncomfortable and feeling sick. After about fifteen minutes of this, they were able to lower my magnesium and although I still felt horrible, I was feeling “better” than before. I stayed on magnesium through the night, trying to sleep here and there.

Saturday, February 17th
Being on magnesium this long had really started to mess with me. When I was on mag I was told it makes your muscles very weak so I had to use a bed pan to go to the bathroom which was such a degrading experience (my reason for telling you that will make sense later). I was starting to see double and when my nurse came in my room and when I told her there were two of her, she knew it was time to turn my mag down.

Later in the day, my doctor came in and told me he was happy with how the mag was working and that I would stay on it throughout the night again. I was so upset I wouldn’t be going home, but glad I would be going home the next day and that the mag was working. My doctor told me that being on the mag and indomethacin for this long wasn’t horrible for the baby but also wasn’t necessarily good. He wanted to wean me off the mag overnight, stop the indomethacin, and start me on a new drug Sunday morning that I could continue to take at home the rest of my pregnancy to keep the contractions at bay. Sounded good to me! In the back of my mind, I knew something wasn’t right. And I hated to say it out loud but part of me was ready for the pregnancy to be over. I was miserable, I felt horrible and my body was exhausted from all of the medications. And to be honest, I was so tired of living my every day in worry or fear or trying to take it easy all the time because we didn’t want preterm labor. Of course ALL that mattered to me was bringing home a healthy, full term baby, but you have to understand – at this point I was just so exhausted. I also feared being told I would be hospitalized for the rest of my pregnancy which was very likely an option. But at this time, things were looking good for me. My contractions were now 7-10 minutes apart and I couldn’t really feel them anymore. They weren’t nearly as intense.

Later in the evening, around 11pm, I called my nurse in to help me use the bathroom. When she took my pan away and when I wiped, we both looked at one another at the same time. There it was – blood. My heart rate spiked and I screeched “WHY AM I BLEEDING?” She called the doctor and began to calm me down. I remember the way she held my hand and rubbed my forehead telling me that it would be ok and that many women in high risk pregnancy cases bleed and have full term babies. The doctor did her pelvic exam, and cleaned where I was bleeding from saying that it looked like it had stopped. She called another doctor in to check and they both confirmed the bleeding had stopped. And for a while, it looked like it had.

Hours later, I used the bathroom again and the blood started to return becoming darker and darker. They did another pelvic check and this time it was excruciatingly painful. My doctors asked me to cough and when I did I could feel the blood gush out. Each movement, cough, wince, anything – I could feel the blood gushing out. It was an absolute nightmare. I was starting not to feel so good either and I knew there was no way I was going home that day. One of the doctors did a quick ultrasound on me and determined that my placenta was still attached and that internally, nothing really looked wrong. Although I was 50% effaced, my cervix was closed and I was not dilated at all. They called my doctor anyway who said to start the mag again and that we had to get my bleeding under control.

Sunday, February 18th
Around 7am my doctor came in and did another ultrasound. He was able to determine that I had a blood clot between my uterus and placenta and I was now having a placental abruption – where the placenta begins to detach from the uterus. Emberly was literally KICKING the exact location of the clot causing me to bleed even more heavily. I could see the worry and disappointment in his eyes and I knew what was going to happen. He said my case wasn’t necessarily an emergency but at this point I was losing a lot of blood and he didn’t like that. Emberly, on the other hand, was completely fine during all of this. Her heart rate and fetal movement always looked fantastic. My doctor didn’t want anything to HAVE to become an emergency delivery and said he was going to call my other doctor to make a final decision. About twenty minutes later he came in and said they had decided to deliver the baby today. In total shock, I began to laugh hysterically. All the doctors and ultrasound techs in the room looked at me like I was INSANE. My doctor said “no, I’m serious” and as I said “I know!” I began to now cry. I was just over 29 weeks. I had met with the NICU doctors before. I knew she was probably going to be very sick and very tiny. I also knew this was going to mean she’d be here for months before coming home…most likely around her due date is what they told me. I did ask if the delivery could be vaginal because that was the great thing about this surgery all along. My doctor said because they’d have to induce me, there was too great a chance of me losing a lot more blood and Emberly and I both going into distress. A c-section was the only option.

Darius got dressed into scrubs and I was wheeled to the OR. I received an epidural and the entire time I swore I was going to throw up all over the nurse holding me in place. I remember the OR was cold, I was panicked and I couldn’t stop shivering. They kept telling me to hold still and I wanted to scream “THIS IS MY FOURTH EPIDURAL – I KNOW WHAT I’M DOING!” but I just shut my mouth instead. After the epidural was in, they laid me down and strapped my arms into place. They started to administer other numbing mediations and narcotics through my IV line. In another IV, I was receiving a blood transfusion. Darius came in and held a tray next to my face in case I needed to throw up – which I did, twice. Do you know how hard throwing up is while lying on your back and having your insides being moved around at the same time? It’s so hard. At one point I felt like I was suffocating from the pressure of the c-section and the crashing of my hormones causing me to shake like crazy.

About a minute before 9:57am my doctor said “baby is almost here!” and my heart was pounding. At 9:57 my favorite nurse, Jasmine, yelled “BABY GIRL!” and the smile on my face could not be erased. Darius was by my ear saying “our baby girl is here! she’s here!” And knowing she was so early at 29 weeks, we didn’t expect hear a cry, but a minute later THERE IT WAS! My Emberly, my sweet ball of fire, my little fighter! She was 11 weeks early and already shouting out! I couldn’t have been happier. About 30 minutes later the NICU nurses wheeled her by me and I started to cry. She was SO tiny, weighing 3 pounds and 14.5 inches long. Although tiny, she was so beautiful and peaceful. They had her wrapped in this little plastic bag to help keep her warm and sterile as they took her to the NICU.

f8queO6mQ16k7yM7mp6U3Q
A glimpse at her back where her lesion was removed. It looks SO good now that it’s healed even more!
IMG_1930
Just hours old on her CPAP
JAL2Cc48SPewzGxci4oEXQ
The first time I got to meet this ball of fire!
PqSCU8cBQw+YtgnUZmvrfw
She is truly so tiny
ql%RJNaeRcetdz7a1gEOpg
Dad meeting his little girl
MG%Cj9v+QBmpFIJns1Q9YA
First kangaroo care
IMG_2066
Holding Emberly while she gets her feed.

My doctors finished stitching me up and one of my amazing anesthesiologists let me watch Game of Thrones spoofs on her phone to keep my mind clear. I needed that distraction so much in that moment.

Five hours later, at 2:57pm, my sweet girl was finally ready to meet her mommy and I was wheeled down to her room. And lucky us, she is in room 3 which happens to be me and Darius’ lucky number. Although I couldn’t hold her that day, being able to touch her, see her, feel her and witness the glory that she is was the best thing ever. Seeing the love beaming from Darius’ proud eyes filled my heart. This tiny, three pound ball of fire was fighting for her life and in that moment I sure as hell was going to make sure I did everything I could to help her become the strongest little lady there ever was.

Advertisements
Uncategorized

Fetal Therapy Surgery

Before beginning this post, I want to clear up one of the biggest misconceptions I have been asked about before and since surgery… “so, she’s all better, right?” People want definite answers, and I get that being someone who has always had difficulty with the grey area. Spina Bifida is not one for providing “definite.” First, the surgery does not FIX spina bifida. Her SB defect will NEVER go away. She was born with it. The surgery is simply to REPAIR her back in hopes that it will help prevent any further damage to her spine. Any damage done before (or during) surgery is done. You can’t repair spinal nerves. Although it’s extremely exciting that our baby girl has shown continuous movement, it doesn’t guarantee she’ll be walking independently because we aren’t able to tell yet what kind of sensation she has in her legs. If you’ve ever had an epidural, you may find it easier to understand. As the medication is wearing off, you begin to be able to move your lower half but that doesn’t mean it’s easy to walk. Think of it like that. So as AMAZING as this surgery has been – and we still remain hopeful that she WILL walk independently – we truly wont know the extent of her condition until she’s about two years old or at least a year when they should begin to show signs of walking.

After closing in on three weeks post-surgery, I have finally gotten my thoughts together enough to tell the story that many people are so curious about… and to also clear up a lot of misconceptions about fetal therapy. This will most likely be a long post as I will try to give as much specific detail as possible about my experience.

Tuesday, January 9th – 

Around 10pm Darius and I said goodbye to his mom and drove over to the hospital. My doctors wanted me admitted the night before so they could begin what they needed to do as early as possible the next morning.

We entered the labor and delivery unit and Darius was told to wait in the waiting area while I completed registration and paperwork. I don’t know why my husband wasn’t allowed with me but that’s a tiny pebble compared to the rest of this. After paperwork, they took me back to the PACU (Post-Anesthesia Care Unit) to get myself settled. At this point, I had been under the impression the whole time that I could stay in my clothes and we were just sleeping in a room designated just for me for the night and that all medical related things wouldn’t begin until the next morning. I was wrong. I had to change into a hospital gown (but I made sure to keep my sweatpants on 😉 ) and they began an IV (which took two nurses – I have very stubborn veins). As the IV issue was happening, a resident anesthesiologist came in. I can’t remember his name but he was going over the type of anesthesia I would be receiving the next day. He told me I would be getting an epidural… and that was it… and that I would be under “twilight” but awake the whole time. Shocked, I informed him that was NOT what I was told at all. His reply – “oh, well maybe not, I won’t be in your surgery anyway.” Cool dude. Way to make me think I will be awake for the entire 5-6 hours of this.

I was beginning to get the impression that I would remain in this little curtained off room with another woman across from me all night by myself until one nurse informed me that my doctor said I needed my OWN room. Angels came down from heaven and began to sing at this point. I mean looking back, it would’t be a huge deal if I had to sleep alone, but we had planned for Darius to stay with me because we didn’t know what time anything started the next day, and I was incredibly anxious and wanted my husband with me. After moved to my own room, Darius was allowed back and we began to settle down to sleep.

Wednesday, January 10th – 

At 4:30am the same anesthesiologist from the night before came in my room to administer my epidural. This part was easy for me as I had to get TWO epidurals when I was in labor with Lincoln. They started the epidural with saline to keep the line open.

At 6am they began to start the epidural a little more and at this point put in my catheter which was super uncomfortable to be able to feel. After this, my legs obviously began to go numb a bit although I could still walk. I felt like I was wasted in high heels trying to make it to the bathroom each time… which was also fun because they measured my urine each and every time I went. The purpose was to see how hydrated I was so they could determine how much fluids I needed. Magnesium was started shortly after this and I had already heard all the horrible symptoms I would be feeling. Magnesium is used to relax the uterus and stop contractions from happening. It is supposed to make you feel sick, like you have the flu or a hangover. I wasn’t allowed to eat or drink anything past midnight because they don’t want. you to have anything in your system to throw up. I actually had no initial reaction to the magnesium and didn’t feel any different… but just wait until after surgery.

My doctors had their “huddle” at 8:30am and wanted to begin at 9:00am. And boy, there they were in my room at 8:50 ready to take me to the OR. I gave Darius a kiss, and cried the whole way to the room. Fear had officially set in. I was awake for the entire prepping of me in the OR. They did this because they want the baby under anesthesia for as little time as possible. They started by moving me as a group from the bed to the table, to which I informed them that if they messed this up or showed any signs of me being a giant whale I wouldn’t eat for the rest of my pregnancy (haha). I received an IV in my left hand from an amazing anesthesiologist who did it in what felt like 10 seconds. Then, in my right hand I received an IV into my artery to monitor my blood pressure. Instead of a cuff which takes several seconds to register, this would provide them with my blood pressure every time my heart beat. It wasn’t painful because they numbed the area with a needle first, but it took about 10 minutes to administer so I could tell it would have totally SUCKED without the numbing medicine. I was given oxygen through my nose, not a mask. My legs went into stirrups which just made me feel soooooooooooooo cute and dainty and they began scrubbing, aka cleaning, me from the stomach all the way down. The anesthesiologist began poking me with something sharp all over to see what I could still feel, and although I told her I could still feel it completely (but not as sharp) each time, she didn’t seem too worried so I guess it was okay that I could still feel some stuff.

The curtain went up in front of my face around 9:40am and my two amazing doctors, Dr. Miller and Dr. Baschat began pressing very hard on my hip bones to determine the best entry point. The whole time my anesthesiologists are asking me about my favorite vacation and favorite drink to where we get into a very nice conversation about margaritas. My favorite nurse Megan yells for a “time out” around 9:45am. If you haven’t been awake in surgery this is when they yell out all your information to all the doctors and nurses. My guess is they do this to reconfirm why you’re there in case anyone happens to be in the wrong surgery… could you imagine?!

“This is Rachael Cross, 29 year old, female. Blood type A-. She’s here for fetal surgery for spina bifida myelomeningocele. We believe starting on the L4. We have blood prepared for both her and the baby in case of transfusion.”  So weird to hear my story being yelled out as if I’m not there.

At 9:50am I was told to lean by head back as far as I could (they would be intubating me), and a mask went over my face. Two deep breaths later, I was OUT.

An incision was made from hip bone to hip bone – about 12 inches long. My uterus was removed – but remained attached inside of me. A big misconception is people think my uterus was like taken across the room or something. No, they place it on top of my stomach. Although this surgery was laparoscopic, that portion could only be done on the uterus. They still had to open my up and remove my uterus to do the laparoscopic part of surgery. Under ultrasound guidance, two ports the size of a pencil eraser were placed on the uterus. The ports were stitched into place and these ports are where instruments would be inserted to correct the lesion. Half of the amniotic fluid was removed and very carefully measured. Then, the same amount of gas was slowly pumped into the uterus to hold the shape of the uterus. Then, surgery was performed. The lesion was opened up and the spinal nerves that were inside the sac immediately collapsed back into the spine. Then, collagen was placed on top of her back and four stitches were used to close her spine. I was told our baby girl had the largest lesion they’ve worked on so far but surprisingly, with the last baby who at that point had the largest lesion, they received the best results. She had her legs crossed and one arm tucked under her butt. She was very difficult to position and each time would roll out of that position. To fix this, they titled the bed backwards so my head was closer to the ground to help keep her in place. She received a shot in the thigh to help “paralyze” her and keep her from feeling any pain. The surgery took roughly five hours and at 3:30pm, Darius received news that I was being stitched up and would be moved to the PACU.

My amazing doctors were able to take pictures of the baby inside of me throughout surgery. We were able to see her little legs, feet, hands and most importantly the lesion that started this whole journey! They may seem a little squeamish to you, but they are amazing to us and part of her story!

IMG013
This is her back facing you. The large bubble is the spina bifida defect before repair. You can see her little arms on both sides.
IMG014
This is Dr. Ahn, our neurosurgeon, opening up the lesion. The “bubble” immediately collapsed and the nerves fell back into her back.
IMG018
This white patch is the collagen used to cover the opening.
IMG019
Here is her back repaired with four stitches. As she continues to grow, this won’t look as bad or as gross.
IMG002
Her ADORABLE feet, hand and tiny butt.
IMG006
Another photo of the sac before repair.. and her little butt and foot.

In the photos, anything that is grey and “curly” looking is the umbilical cord. Anything grey and “veiny” looking is the placenta.

I do not remember the tube in my throat being pulled out, but I do remember being told to wake up. I can only imagine the nasty face I had when they woke me up. It was like I was thinking, “I am so tired, why the hell are you waking me up?!” But then I registered where I was and immediately felt pain on my left side. I was groggy and couldn’t see right and also very disoriented. I remember being asked if I wanted to see Darius. He told me we had the same conversation for about an hour. He said it went something like this.

“I love you.” “I love you too.”

Pause.

“I missed you.” “I missed you too.”

Pause.

“Aren’t you glad you don’t have to find a new wife?” “Yes baby I am glad.”

Repeat 15 minutes later.

I was put on a NST (non-stress test) to monitor the baby’s heart rate for about two hours. She was doing so, so well. They were also monitoring my contractions. Anytime you mess with the uterus, it will begin to contract. I had about 7 total contractions while still on the magnesium. I remember my entire mouth being so dry. Between being intubated and the anesthesia and magnesium, my lips were literally sticking to my teeth. I couldn’t talk right and my voice was hoarse. I felt like my entire mouth was coated in sand. A nurse let me have some ice chips and it was probably the greatest gift I had ever been given. I can’t even begin to explain how awesome ice chips were in that moment. Shortly after, I was allowed to start taking sips of water which was the next best thing that’s ever happened to me.

I had to remain in the PACU until I had feeling in both legs again and I could move them, but my right leg was super stubborn and not responding. Thankfully, I had one nurse who, after four hours of being in there, finally allowed me to be moved to my own room with Darius.

Shortly after arriving to my new room, I told Darius an my nurse that I wasn’t feeling very well. I told them I felt like I may throw up. Keep in mind, I was totally still sedated and numb. I could barely talk let alone move my body. Those two began moving at the speed of sloth because right after I said that… here it was…. vomit, all over myself. I couldn’t move! So four times in a row just vomiting all over myself. It was HORRIBLE. And then, they had to rotate me to help clean me off! I was no help and I physically couldn’t be! I could hardly feel anything let alone sit up or help take off my hospital gown. I still feel bad about that but I’m hoping at some point in my marriage that when I tell Darius I think I will throw up that he really knows that means, I AM going to throw up NOW.

Thursday, January 11th – 

Thursday was a bit of a blur. I was lucky to remain out of pain thanks to my epidural and  my oxycodon. A lot of people ask if it was safe for the baby for me to be taking oxycodon. Well, ideally, no. But I was given this medication by my VERY knowledgeable doctors and surgeons. It’s not a drug you’d want to be taking for no reason at all, but under circumstances like mine, it was perfectly fine. I remained on oxycodon for about a week until only being on Tylenol.

We had our first ultrasound that day to check on the baby and it was so amazing. It was amazing to see that she was fine, it was like nothing had happened. But then, the obvious showed up. Her lesion on her back was GONE and it was like she never had it to begin with. She was also still moving her toes which was so exciting for us.

IMG_1559.JPG
Day after surgery – still slightly high as a kite here.

Friday, January 12th –

MY FIRST DAY WALKING! This was the BEST day! I had the best nurse who insisted I get the F out of bed and I couldn’t wait! My mom went down to get some lunch and when she came back I was sitting in a chair! I felt so proud of myself and being able to get up and stretch is something I will NEVER take for granted.

We had another ultrasound and everything remained awesome and. the same… and at this point in the game, the same is how we like things.

I will continue to have weekly ultrasounds until she is born. They are hoping over time to see two things:

  1. That her hips, legs, ankles and. toes continue to move.
  2. That her cerebellum changes from what they call a “banana” shape to a “figure 8.” This will show that the cerebellum is returning to its normal position. This will happen, if it does, way later in pregnancy. It will be a slow process. But watching the cerebellum is one of the big things that will help determine her need for a shunt after birth (the big thing we are trying to avoid).

    qQ%omu8EQIy2+kZnuNTJkA.jpg
    DATE NIGHT aka watching Netflix in the hospital bed together. Not gonna lie – kinda felt like the old couple in The Notebook here.

Monday, January 15th 

DISCHARGE DAY! I was sent home on Monday and it was the BEST feeling in the world. I can never thank enough the amazing nurses and doctors and surgeons at Johns Hopkins but there is no better feeling than your own bed… and being at home with your sweet baby.

 

I was placed on two weeks moderate bedrest after surgery. They wanted me up and walking here and there, but mostly laying down and resting throughout the day. Now going into my third week of recovery, I had permission to begin driving and trying to live a normal life again… including picking up Lincoln. Yesterday was Darius’s first day back to work and being alone with Lincoln was much more difficult than I had imagined. My organs are literally moving back to place and healing and that has recently taken the biggest toll on me. The pain is excruciating and sitting up is very painful because that pushes everything together.  I am SO thankful for Darius and his people at work for being so understanding during this time and giving him the time off so he can help me heal and take care of Lincoln without disrupting his routine. I am hoping that within the next two weeks I will be back to my old self… except with a much larger belly!

Thank you to EVERYONE – family, friends, strangers near and far that have reached out or helped myself and my family during this time. You will never know how much we appreciated every single gesture.

Uncategorized

1 in 2,000

Out of every 2,000 births, one birth will result in spina bifida. One in two thousand. Those are the odds that it could be me.

When we discussed trying again for another baby, defects never crossed my mind. Why would they? I had already gotten my miscarriage “out of the way” and then followed it up with a very healthy baby boy. I completed all the optional trimester screenings and always had fantastic results. With this pregnancy, why would it be any different?

In fact, it wasn’t different. Everything was going smoothly. I felt “better” the first 15 weeks than I did with Lincoln – I was mostly nauseous with vomiting here and there. With Lincoln, it was multiple times a day, every day, for 16 weeks. Something in my gut told me it was a girl – based solely on the fact that it was all so different. I completed all my screenings. First trimester at 12 weeks for Downs Syndrome – came back negative. Then again at 18 weeks for Spina Bifida and other defects. I got the phone call about three days later from the nurse letting me know my results came back negative, my screenings were normal – in fact VERY normal was the term used. She had an optimism in her voice, I’ll never forget that. It was as though she was thinking, “I just love delivering good news!” But to be honest, I KNEW my results would come back negative. I have a normal baby at home. I do normal things. I remember hanging up with a smile on my face and a “got that off my list” demeanor. I was ready for my 20 week anatomy scan and thrilled for our gender reveal.

Spina Bifida blood testing is only 80% accurate – leaving 20% for a false reading. False negatives are extremely rare, especially with blood work. In fact, when completing my hours of research I was only able to come across ONE case of someone sharing a false negative story.

If I become very honest here, I always knew something was wrong. I couldn’t put my finger on it and it was far more of a worry than just hoping there was a heartbeat. I knew that something just wasn’t right. There was honestly no reason to think this – except that my gut was telling me so.

Friday, December 15th 

The day of our 20 week anatomy scan I was overly nervous and anxious. I felt sick to my stomach. Darius told me I was this way with Lincoln and I smiled and nodded, but I knew it was different. The screening started out great, everything was normal and the weight of anxiety was beginning to lift. And then, there it was. “That must be her tailbone” I thought to myself. And right as I went to ask, to confirm my thoughts, the ultrasound technician says, “I want to recommend you see Maternal Fetal Medicine. See this bump right here? This is a fluid filled sac, often associated with spina bifida.”

Crickets.

At first thought, “I knew it.” Not that I knew it was spina bifida – but that my gut was correct. Next thought, “get me out of here!” I wanted to run. Third thought, “Get this baby out of me!” I wanted it over with. Lastly, “What the hell is spina bifida?! It must not be THAT bad because she surely doesn’t seem to be too worried.” Darius proceeded with a lot of questions, most of which I can’t remember, but I do remember the tech playing it real cool, keeping the calm. She told us it may just be a cyst. “A cyst?! I can totally deal with that!”

But then, she continued to spend a lot of time focusing on the brain – not saying anything, which really bothered me. We had this tech with Lincoln and she was always so honest, except with Lincoln there weren’t any problems. About an hour later she finishes up, prints our photos, places the gender photo in the envelope, and says she’s going to go meet with Linda… the nurse practitioner.

At this point, there weren’t any tears. Darius and I were holding hands and just staring off wondering WTF just happened. Did she seriously just walk out like none of this news was something bad? We meet with Linda who blatantly, and rudely informs us that YES our baby has spina bifida, YES she has fluid in her brain and she does not know how we will sleep over the weekend but they already have an appointment for us with Maternal Fetal Medicine on Monday at 2… oh, and to “have a blast” at our gender reveal the next day. That entire encounter lasted around 3 minutes.

ENJOY OUR DAY TOMORROW!? Is she KIDDING?! I wanted to RUN from my life, from my body, from this baby. I wanted OUT! We went from hearing a cyst, to then spina bifida, to then fluid buildup in her brain!

Doctors and scientists believe, although uncertain, the leading cause of spina bifida is lack of folic acid. I do not understand why doctors do not recommend that ALL women be taking a prenatal months before conception because they SHOULD. If I had known this, maybe we wouldn’t be in this situation.

As I try to always remain honest, this part I’m about to say may disappoint, sicken, or shock people. But you aren’t in my shoes and you don’t have a right to tell me how to feel.

I wanted to terminate. We wanted to terminate. We thought our child was going to be born a vegetable. For Darius and I, that is not a life we would want our child to live. What kind of life is that and how would that be fair to Lincoln? I did not want to become best friends with nurses and doctors. I did not want to drown in debt from medical bills. I know there are so many different opinions on termination and what fulfilled life looks like for a child, and I respect those who disagree with me. In fact, I was always against termination … until a situation like ours presented itself. It forced me to see all sides and really analyze the situation closely. So again, while I continue to respect the decisions of others, I hope our thoughts and decisions can continue to be respected.

60% of parents who find out their child will be born with spina bifida terminate. Which is one of the leading reasons why there is not yet a cure. Because there are hardly any patients to help find a cure. Sixty percent. 

Saturday, December 16th

Our gender reveal. We decided to continue with the gender reveal party in hopes it would give us something to look forward to. Honestly, it was anything but. Darius and I were sad and not really present. We tried hard to put on smiles but all we could think about is whats wrong with the baby and if we were going to even keep it. Through my research on spina bifida the night before I had learned that it is more common in girls. So, when that puff of powder showed up as pink, I was ecstatic to have the girl I had always wanted but also devastated because it just proved more that it was, most likely, spina bifida.

Monday, December 18th 

Our meeting with the doctors at maternal fetal medicine (MFM) was nothing like we had hoped. We spent the whole weekend crying, researching, praying and searching for any positive outcome or story. Unfortunately, we didn’t get much positive news from the internet. The ultrasound tech and doctor were able to confirm that yes, the baby did in fact have spina bifida. It was the worst case, myelomeningocele (milo-my-ninja-seal), but also the most common. Worse news came – the nerves were exposed and not covered by skin, leaving them open to more damage from the amniotic fluid and bumping up against the uterus. After a two hour ultrasound, we met with a genetic counselor who gave us options and introduced us to fetal surgery. We agreed that we wanted to take steps to fix the problem before considering termination. The next day I went back to MFM for an amniocentesis, where they stick a long, skinny needle through my stomach into my uterus to draw out amniotic fluid. They would test this fluid to make sure the baby didn’t have any additional chromosomal defects.

Over the next week-

After the amnio, we were sent to Johns Hopkins a couple days later where we had a four hour appointment, including yet another ultrasound to confirm the same findings. They were able to tell us more specifically where on the baby’s back the lesion started and ended. We discussed what this meant for her leg movement, bowel and bladder control and brain function. We met with the neurosurgeon who discussed what surgery would look like for myself and the baby.

Spina Bifida effects a baby in two drastic ways. One, the spinal cord is not finished so this has effects on walking, leg numbness, bowel and bladder control, hip movement and more. But the worst part is its effect on the brain. Because the nerves are exposed, they are tugging down on the rest of the spine which is connected to the brain. The cerebellum is then pulled down into the neck, or spine, causing fluid in the brain to buildup because it has no where to go. Typically, patients who do not undergo fetal surgery will be in surgery hours after birth not only to repair their spine but to receive a shunt in the brain which allows the fluid to move freely. Shunts cause lots of problems over a lifetime and are the leading cause to death in spina bifida patients. They clog, get infected, break, fall out of place and often need repair, which means multiple brain surgeries.

The fetal surgery through Johns Hopkins is new, and yet to be FDA approved. This surgery is done laparoscopically which means I will receive a c-section, and tiny instruments will be used to make holes in my uterus and correct the baby open spine. By performing this surgery, the cerebellum should naturally return to its place allowing fluid to move freely. This surgery will increase her chances of walking independently from 40% to 80% and reduce the chance of her needing a shunt drastically. If for some reason during surgery they are not able to do what they need laparoscopically, they will remove the baby from the uterus to perform surgery on her back that way. In the spina bifida world, this is known as being twice born.

In the past 2.5 weeks we have seen countless doctors and I have been stuck with more needles than I’d like to in my lifetime. And more is to come. We are aware that no matter what, when the baby is born she will be spending time in the NICU. We are aware that her life will be different, and so will ours. But, we now feel hopeful… and a little bit of excitement. Although our current focus is on having a successful, “easy” surgery, we are looking forward to adding a little girl to our family. We have had the best family and friends lift us up in support and prayer. We have had time to grieve the “normal” baby that we had thought we would have and learn to love the new normal. We have found an enormous strength in our marriage and bond with one another. We have found a whole new meaning to unconditional love.

In the next couple weeks (and through the remainder of my pregnancy), we will be spending a ton of time at Johns Hopkins. I will be going back to many meetings with my doctors, the NICU and the anesthesia team. I will be receiving steroid shots to help her lungs mature faster in case they need to deliver. And on January 10th, baby girl and I will undergo a surgery that could improve her life in such a dramatic way. We ask for prayers, support and if you have questions please ask. We don’t need pity or sympathy as we have already moved past that and are now seeking positive thoughts only. 🙂

So, why am I sharing? Because I love to blog, and I love to be open and honest. I have been very closed off about this for the past few weeks but I also understand that as time moves on eventually people will find out. Whether its in May when she’s born or for whatever other reason. I want people to know her story, our story, and for anyone else out there currently in the grieving phase to know there is hope, there are options and your child will NOT be a vegetable. In fact, typically, there is nothing wrong with the intellect of children born with spina bifida. Their lives will be different and more challenging without a doubt, but with supportive families and an amazing team of doctors I feel assured there is NOTHING they won’t be able to do.

 

 

 

Uncategorized

New Beginnings

Hi there! If you’ve stumbled upon this blog of mine by accident, welcome! If you found me through my share, thanks for stopping by!

My name is Rachael! And this blogging thing ain’t my first rodeo! I have a blog that I used to document my first pregnancies. You can read all about that here. Many of my family, friends and colleagues enjoyed reading my previous blog and so, I’ve decided to take it a step further. I have quite a few life changes ahead of me (hear about those in the near future) and I am doing my best to make my blog a full-time gig.

I have always loved writing, thanks to my fourth grade English teacher. I have found it to be a creative outlet, a sort of release, a safe place where I can let it all out there. At first, it was something I found quite nerve wracking, especially putting it on the internet, but when I received so many positive responses, I felt the need to keep it going.

Blogging has been the most challenging for me having to work full-time as an elementary school teacher. Especially now having a 9 month old, 19 students in the classroom, and a husband who can never find his keys, pants, phone, work bag, shoes, the can opener, etc… it always kind of was put on the back burner.

With all that being said – I am so excited to make this more of a commitment! I am dedicated to this and so excited to be on a new journey! Thank you for joining me!