Rough day in L and D

Yesterday I went to see the perinatologist to measure the babies abdomen and see if he has been growing. My husband and I went in feeling completely optimistic, he had to have grown, everything was going to be great, right?

The tech measured the baby and his abdomen was still measuring small, now in the 5th percentile, but he also had gained a pound, he's up to 4lbs 2 oz! That's a good sign. I noticed she was spending a lot of time looking at his heart, I told her at out last fetal cardiologist visit she noticed some fluid, within range, around his heart, the tech said she's more concerned with his heart rate at this point. I looked on the screen and his heart was racing at 207bpm. Instantly, I felt sick to my stomach. The nurse could tell something was wrong and had me lay on my side and for me a wet rag. I felt faint, more because I was so nervous about the baby. Another thing! Seriously!? I felt like I had been so strong this whole time and now this. The tech went to get the doctor immediately. He checked me out, saw the baby's heart rate and eventually got it down to 180bpm. I asked about the fluid around the heart and he said it's probably from my lupus and other problems. Just when the baby was stable, his heart rate shot back up so they decide to send me to labor and delivery for monitoring. 

Going to the hospital, I felt like I was running on my autonomic nervous system, having no real comprehension of anything around me, I was a zombie. I was in shock and so scared. I was now 34 weeks pregnant and I knew the baby had a good chance of surviving if they had to take it out but I wasn't prepared to hear he has any kind of heart problem.

Unfortunately, they were super busy there and we had to wait for them to "mop the floor" of a labor room that had just emptied (gross)! We waited almost 2 hiurs and finally got hooked up to monitors. My seemed rather out of it and not very comforting. The babies heart rate was now down to an average of 135bpm which is totally different! I was pissed bc I thought maybe if we got in sooner they would see his heart racing. Instead I stayed for an hour and they said I could go home now. I wept in the room. I told the nurse I was scared! How am I to know when my babies heart is racing? I can't feel it! Instead I have to wait another week to see the doctor, meanwhile I'm at home like a sobbing mess, counting kicks, being paranoid, and trying to just lay on my side. This is going to be the worst week ever!

32 weeks pregnant baby measuring small

I am 32 weeks pregnant and I have passed my goal of making past when Miller was born of 31 weeks 3 days! I was super excited until I had my appointment with the high risk doctor. Baby Angus is measuring very tiny. His head and limbs seem to be average but his abdomen is only in the 7th percentile.

I was confused when I first heard, I'm not a tiny person by any means and I have been on disability since my 17th week of pregnancy so it's not like I'm super active. They advised me to up my protein and calorie intake do little to no movement except walking around the house, eat 6 meals a day, and lay on my side most of the day. I can't completely be on bedrest because of my blood clotting disorder so I just have to find a balance.

The next day I went to my OB still saddened and confused by why my baby is so tiny. She said that when just the babies abdomen is small, there body is compensating for not getting enough nutrition so it works hard to keep the brain an average size. This could be because of either malnutrition or my placenta isn't working properly. I have gained 23 lbs this pregnancy so I highly doubt it is malnutrition, but the other option seems a lot more scary. Maybe my APS is messing up blood flow to my placenta? I go back to the doctor on July 1st to see if the baby has progressed, if not they may have to take the baby out because he would grow better outside my womb. It is heartbreaking knowing that my body just can't do its job. 

On a better note, we got to take a 3d ultrasound of our little guy and he looks like a handsome fellow already. My heart is getting bigger everyday with all the love I feel. 

This is a picture side by side if Miller and Angus at the same gestational age, one outside the womb, one inside:)

APS

Since June is APS awareness month I thought I would share my experience with this unknown disease. 1%-5% of the population is said to have to disease but unfortunately wont know until a) the have a miscarriage b)they have a DVT or c) a stoke.

APS stands for Antiphospholipid Syndrome, also known as Hughes syndrome, or my favorite, sticky blood syndrome. 

APS is an autoimmune disease where your body builds antibodies against components of your blood, making you highly ceceptable to clotting or stroke. It's honestly pretty scary stuff. Whenever I tell people that I have APS and Lupus, people automatically go "oh you have Lupus? I am so sorry, what a horrible disease!" Well honestly I am a lot more scared of the APS. The general public, even doctors, seem to be not too familiar with the disease. To me having a stroke is pretty much my worst fear, and a very real fear to have, because let's be real here, it very well could be my future. I'm just not into being all 'Debbie Downer' and telling people ya I'm probably going to die of a stroke, no biggie, but it definately is something that is on my mind. 

      APS symptoms are so broad, it is often hard to diagnose because it mimics other more well know diseases. In my case, I swore that I had MS. A few weeks after Miller was born I was still in the hospital because my c-section had gotten infected, while I was there I started getting a sharp pain that would run down my left arm. It would come and go every couple hours but it was bad enough that I told a nurse, and she just stared at me and kinda ignored my concerns. My first week home I had an impromptu baby shower because people felt bad that Miller was born so early and was in the NICU, while in the kitchen waiting for people to arrive, I all the sudden got dizzy and went completely blind. It lasted maybe 10 seconds but I felt just out of it and went upstairs to lay down. I put on a happy face but was miserable and finished to baby shower without realizing how serious my symptoms were. 2 more months went by with me getting dizzy, double vision, having sharp pains down my left arm, getting tingling sensation down one side of my face, and the worst, losing the upper half of my vision in my right eye at least 7 times a day. When my insurance finally went through, I went to my GP with a list of symptoms, he immediaty sent me to a neurologist. The neurologist was very concerned and thought possibly MS too because all my symptoms fit the bill, I had 3 different brain MRIs done and all were clear except for "peculiar white spots that you see in very elderly people" uhhhhh great! I had a nerve test done in my arm where they stick a needle into every one of your muscles in your arm and shock them to see how they react. That was clear, so finally my doctors did some blood tests. He tested my ANA, blood clotting components, and sjorgens antibody. I had a high positive ANA meaning I probably had some sort of autoimmune disease. My blood clotting components were through the roof on multiple levels, he sent me straight to a hematologist because with numbers like mine I was at a very high risk for a blood clot or stroke, yikes! Also, I tested positive for the sjorgens antibody but wasn't as concerned because I didn't think I was showing any symptoms, at least not yet.  I felt good to have someone show some real evidence that I had something wrong and I wasn't going crazy.

     Unfortunately, my hematologist was a total joke. Apparently I was the first person he had ever actually seen with APS since med school, so he didn't know what to do with me. He put me on Coumadin and referred me to his professor at USC, Dr. Leibman, head of hematology. I also was referred to a rheumatologist since my symptoms were so broad. The rheumy discovered that I was having symptoms of Lupus my whole life and I never knew, I would complain about arthritis when I was 12 and thought that was a normal thing. I was always feeling run down and my friend would get mad because I would ditch out on them because I was always sick and in pain. I got labeled the hypochondriac flake by most of my friends but I was a little relieved when I found out I had Lupus because it was finally a reason to why. 

    When I saw Dr. Liebman, he explained everything to me and made me feel a lot better, pretty much the symptoms I was feeling were mini TIAs or blood clots running through my brain and arms causing all these problems. So scary! Being put on plaquenil and blood thinners should eventually clear my symptoms but in the future they might need to mix things up because the disease is different for everyone. 

     He was right, 3 months later my symptoms were slowly diminishing, but the plaquenil made it so I had to see an eye doctor every 6 months because the medication, although a miracle drug, causes macular degeneration and I could eventually go blind, yet again!

On a side note it's always fun when you go to your rheumy, hematologist, and Coumadin nurse and every single one says "You are one of our youngest patient here." Awesome. I feel like I deserve a prize for being so unfortunate.😒 

    So here we are today. My APS symtoms are under control for now, the true test will be after baby #2 is born, when my hormones go out of control and effect my body. I will be on lovenox injections 3 months after delivery praying that my symptoms don't return. 

My First Major Lupus Flare

   A few weeks ago, it was like 100 degrees here in southern California, I was 27 weeks pregnant, and I was miserable. I was at dinner for my brother in laws birthday a few weeks prior, and all the sudden I had a sharp pain running down my right arm. It was a hard to explain dull ache that went from my shoulder to wrist. I left dinner in fear, and went to an urgent care that night. I had been getting the lupus malar rash on my face a few weeks before, but I chalked it up to too much sun exposure. The doctor at the urgent care said it could be neuropathy from my lupus and to follow up with my doctors. The next week I saw my rheumy who ordered doppler ultrasound studies in my arms to rule out a blood clot. I ended up having 3, because each one came back "inconclusive" (which is scary) and since I am pregnant there is not much more they can do but just watch that it doesn't get worse. I took prednisone for a week and thought I was feeling better, all until that heat rolled in...
   100 degrees outside and I am covered in blankets shivering with a fever. I feel like crap, my whole body hurts.  I started having chest pains when I breathed in and it felt like I was never getting enough oxygen. I kept going back and forth on whether I should go to the ER, I hate the ER, imagining staying 8 hours somewhere with a chance that they think I'm crazy.  Finally around 7pm, Matt and I headed over there. By the time I walked in my body felt like it was going to fall apart. I could barely walk. They ask "where does it hurt?", well I was there for my right side arm and chest pain, but I had to say "Honestly, my whole body, everything hurts." They gave my a wheel chair and got me in pretty fast, I'm sure saying I had a hard time breathing didn't hurt.
   The ER doctor was awesome, he actually listened to me. Usually when you say "I'm pregnant, oh and I have lupus, a blood clotting disorder called antiphospholipid syndrome, and recently tested positive for sjorgens", they kind of just stand there and stare at you, but this guy was great. First, because of the clotting problem he wanted to rule out pulmonary embolism through CT scan. I am an xray tech so I am well aware of the dangers of radiation, especially while pregnant, so it took a lot of convincing on my part. I knew that if I did have a clot, that could mean death for me and my baby so it was better to go through with it. The doctor also gave me a small dose of morphine because I was in so much pain I literally couldn't even lay on the gurney, it helped so much. They inserted the IV contrast and it made me feel like I was literally peeing my pants! Apparently that is a normal sensation, but I had to do a double take at my underwear just to make sure.
    Great news, no clot! He diagnosed me with pleurisy, inflammation of the lining of the lungs that causes pain and trouble breathing. Just another complication of lupus that I had never experienced before. Body aches, pain, fever, rash, all fit the bill to a lupus flare. I had read other peoples blogs about how they laid in bed for a week because they literally couldn't get up, I now knew that feeling. The joint pain was excruciating, and unfortunately there is not much I could take because I'm pregnant.
   3 weeks later, and I am finally starting to feel better, although my joint pain has gotten pretty bad, at least the full on body pains have subsided.
  9 more weeks to go and Baby Angus is still looking healthy:) Keeping my fingers crossed!

Pregnancy #2

        I am now 30 weeks pregnant with baby number 2. After my first crazy experience with my son, Miller, I have been seeing a rheumatologist, hematologist, opthamalogist, and even got sent to the head of hematology at USC.  They had managed to keep my symptoms under control through blood thinners, plaquenil, and bouts of pain killers.
       I was feeling great and knew that if it were possible, Matt and I wanted another child. I talked it over with Dr. Cheng, my amazing rheumy, and she did some blood tests and said she had my blessing to have another child. Pretty much, if I wanted to be a mom again I should try now, because its only going to get harder as a get older, and I had been flare free for almost a year. I made an appointment with Dr. Green, my OB. I asked him if he were willing to take on such a high risk pregnancy like mine, he spent an hour in the office with me, going over all the risks...the very real, very scary risks. I couldn't hold back my tears, I cried when he said things like, "miscarriage", "late-term miscarriage", "blood clots", and "death, although I have never lost a patient yet". Holy crap!

    I went home that night, cried, and discussed everything with Matt. We knew the risks, but at the same time what if I didn't get HELLP again this time around? They say its a rare occurrence anyways, so there was a chance I could have a fine, normal pregnancy. We decided that if we didn't try we would never know, and I would hate to grow old wondering if it were possible. If something bad were to happen, then we would know it wasn't meant to be. I was scared but excited. 1 month later we were pregnant!
    I was nervous about the first trimester just because I know a lot of people suffering from antiphospholid syndrome have a higher chance of miscarriage. I saw a perinatologist who put me on 40mg Lovenox blood thinner injections daily, and I continued taking my 400 mg plaquenil, so far pregnancy was great. At 17 weeks pregnant, they saw I also had placenta previa, so decided to take me out of work and put me on short term disability, especially because I was also having major sciatic pain.
   So I grew and grew... went to doctors appointments at least weekly.  I was seeing my OB, rheumy, perinatologist, and a fetal cardiologist to check the developing baby for signs of a heart block. Ya just another thing to add on the list. Apparently I am positive for the Sjorgen's antibody which can cause heart problems in a baby. I am trying to stay positive and be happy but I had a major breakdown. Everyone says things like, "Wow Nicole, you are such a strong person, I don't know how you do it", well the truth is, I don't know how I do it either, but ya know, I have no other choice, this is my life, these are the cards I was dealt.
    So far so good, baby looks healthy, I am semi- healthy, my goal is to get past 31 weeks. Keeping my fingers crossed.

Where to start...

I've always thought it would be great to document what goes on in my crazy life, so here we go. My name is Nicole, and I am a wife and mother to an amazing 2 year old , Miller. I have a rare blood clotting disorder called antiphospholipid syndrome along with Lupus. I know, I hit the genetic lottery. Miller is our little miracle baby, being born at 31 weeks because I got something called HELLP syndrome while I was pregnant. Pretty much my liver was failing and I needed a blood transfusion and I was losing my vision in my right eye because my blood pressure was 200/160! The only cure is to deliver the baby. I woke up in the ICU and Miller was breathing on his own but only weighed 3 pounds. Without him, I would have never been diagnosed with my diseases until I possibly had a stroke or DVT, for that I will be forever grateful.