Here we go again...

I'm a little behind with my posts, but last Wednesday Aaron and I trekked back to Johns Hopkins Hospital for another treatment and Isabelle stayed at our house with NaNa again.  After talking to some ladies in my support group I decided hydration was key to avoid the headaches.  So, the entire day before and the day of treatment, I guzzled water and Gatorade to the point where even looking at water made me cringe a little bit.  I was less nervous this time and really hopeful that new protocols would help me avoid the side effects.

When we got to the hospital I was really excited to get a labor and delivery room instead of a triage room.  The bed was more comfortable and we actually had a really nice view of the harbor.  Our appointment was at 9am again but by the time everything actually got started and my IVIG prescription was filled and ready it was about 11am.  The new protocol for my treatment went down from 180 to 100 which meant the treatment should take about 8 hours.  They also decided to give me half of a saline IV before the treatment and the other half after, which would add another hour onto the treatment.  I was really nervous about my IV, but thank goodness, I got a Technician to do my IV this time and she was AWESOME!  She found a vein, put it in and I barely knew the difference.  I asked them to put in my chart that I would rather have a Technician every time since I had so much trouble with it during the first treatment. 

During the treatment, I felt pretty good... just tired.  I continued to take in fluids and Aaron was really good at giving me a new bottle of water whenever I finished the previous one. We watched TV, played some games and just talked.  My awesome bestest friend, Danielle had sent me the sweetest gift all the way from Alabama---a Disney princess coloring book, crayons and chocolate.  So of course we colored, which was surprisingly relaxing.  We were also able to hear the baby's heartbeat again and it was around 150... same as last time!  Talk about making a girl smile!  It was a nice reminder that there was a little tiny life that I was protecting and it really gave me an amazing burst of energy and encouragement.

Also during the treatments LOTS of nurses and doctors came in to see me.  I kind of felt like some kind of exhibit because most of the people had never treated a NAIT patient and were coming in to learn about the protocols. They were all very nice and eager to learn but mostly talked about me and not to me.  I watch a lot of Grey's Anatomy and I was kind of feeling like the patients on the show when all of that was going on.  It was sometimes frustrating because they often didn't know what was going on and had to leave the room to ask, but I was excited that so many new people were able to learn about a condition that is very rare. 

Towards the end of the treatment I had started to get a slight headache again but my previous nurse's shifts had ended and a new shift of nurses had come on.  So when I told my new nurse that I had a headache, she was unsure of what to do and really hadn't had any time to get up-to-date on my case.  She went out to get another nurse who had to get approval from the doctor and by the time I did receive Tylenol, it was about an hour later and my headache had already gotten worse. 

At the end of the treatment everyone was confused about whether or not I was supposed to get the rest of my IV fluids and if my IV should come out so instead of it taking about 30 minutes to get the fluids and get out of there, it took about an hour and a half.  By the time I was given my discharge papers, I was extremely frustrated because we had been there since 8:45am and it was now 9:45pm. When we got in the car, I broke down and cried my eyes out.  I was exhausted and upset that we had left Isabelle this morning when she was sleeping and realized she would probably be asleep when we finally got home too.  It might seem silly, but the thought of missing out on seeing my baby girl all day just broke me down.  Because my little lady is a bit crazy, she was awake when I got home, and she was so excited to see me. It filled me up and made me indescribably happy. 

The next day, my headache was there but it wasn't so bad.  I continued to take in fluids but was told to be careful of taking too much Tylenol so I held off as long as I could before I felt like I needed it.  Aaron had previously planned a trip to the Poconos with a group of his friends for that weekend, so once I gave him the all clear he left for the trip.  I really felt like I was okay and was fine with him leaving but after I woke up from a nap with Isabelle, my head was killing me and it was really hard to function.  My mom had come over to help take care of Isabelle and of course me, but she also had to go to work.  I tried to do what I could to keep myself functioning for Isabelle's sake but it was hard.  I felt such guilt when she wanted to play and I just wasn't myself.  We went to bed but I was unable to sleep well because of the headache so when Izzie woke up at 7:30am, I literally did not know how I would get through the day.  I texted Aaron just to let him know I was feeling so awful and he called his mom and bless her heart, she came to my rescue.  She watched Isabelle so I could try to sleep some more and I was so grateful for those few extra hours.  Once I was awake, my head was still pounding and not much was helping but Aaron's mom came back later to watch Izzie and bring me dinner.  She was definitely my hero that day and I'm sure Isabelle's too. 

Finally by Saturday, I had started to feel better.  I was still exhausted but functioning.  My Aunt Donna was in town from Washington state so my family all went to my grandma's to hang out and I got a little bit of a break while we were there too.  Aaron ended up coming home early on Sunday and I was so excited.  Of course I was excited to see him, but I was even more excited to take a nap! 

After talking to both Dr. Vaught and Dr. Blakemore, they decided we should try to switch brands of IVIG.  Switch brands? Who even knew there were different brands of blood?  And what is the difference?  I was just told that there were less side effects with some brands than with others and that they thought it would be the best choice.  So, next time.... New brand and HOPEFULLY no side effects.  If everything works out with the new brand, I may be able to get home treatments too!!  Fingers crossed, and thanks for reading.  We really appreciate everyone's support!

The First IVIG

Last Wednesday, Aaron and I packed up a bag and headed to the hospital for my first IVIG treatment at Johns Hopkins.  Little Miss Isabelle stayed at home with NaNa (Aaron's mom) and we were off.  The emotions and anxiety I was feeling had kept me up for the most the night before and was so much worse on the drive there.  "What will it feel like? Ahhh, I have to get an IV... I hate blood... I hate needles... Where will the put me? In a room? Will Aaron be bored? I'm going to miss Izzie... Will I have a bad reaction?  I hope everyone is nice... Can I do this?" Luckily, Aaron was there to talk me off my ledge and helped me calm myself down enough to function.  And after all, it's not really about that last lingering question of "Can I do this?"  I have to do it... I HAVE to do this to keep my baby healthy. 

We had a 9:00am appointment and so I assumed that meant that my treatment would probably start right around then.  After checking in, getting weighed (eww), giving blood, taking pre-meds (Tylenol and Benadryl), it was about 10:00am.  They started me on IV fluids and put in my prescription for the IVIG.  IVIG is extremely expensive and needs to be made pretty much right before it's given, so it had to be filled in the hospital pharmacy, and that took about 45 minutes also.  By the time the actual treatment started it was about 10:30am.  Dr. Vaught is the doctor who oversees me when I go to the hospital and he stopped by to see me and just check to see everything was going well. 

My nurse was incredibly sweet and funny... I totally had a girl crush on her, but she also admitted that she'd never given IVIG to a pregnant person and was following a chart that mapped out my dosage based on my weight.  It just feels a little scary when you're someone's first, and I was sure she was capable... but it just made me a little more anxious (as if I needed that).  They slowly upped the dosage over the course of about 4 hours and for the last 3 hours I was receiving my highest dose which was 180.  I did begin to have a pretty killer headache when they started the 180, but the nurse gave me some meds and told me to eat something to feel better. 

During the treatment, I was tired but it was actually really nice to be able to spend some alone time with Aaron.  He called it "our date.". We watched TV, tried to binge watch Game of Thrones (but the internet wasn't cooperating), we ate and just laughed and talked.  That part was great.  We also got to have a sonogram of the baby and see the heartbeat which was right around 150, which was SO exciting.  I slept some, peed at least once an hour and of course texted with my incredibly supportive friends and family.  Shout out to my momma, my brothers and sister, and my best friends!! ❤️❤️❤️

The treatment ended right around 5:30pm.  At the end of the treatment, they pushed the rest of the bag of fluids and basically just sent me on my way telling me to continue taking my prenatals and to come back if I had any side effects.  Dr. Vaught had told me the most common side effect was a headache, which I already had before leaving... so I figured there it is, this is the side effect...  I can handle this.  Boy, was I wrong. 

By the next morning, my headache had progressed into a full blown migraine with all the trimmings.  I asked Dr. Vaught what to do, he said take Tylenol and come in if it doesn't get any better.  Well it didn't, it only became worse... enough for me to admit to Aaron that I may need to go back to the hospital.  I honestly cannot even describe the pain I felt it my head... I felt like the pressure in my head may blow it off and the only thing keeping it down on my neck was the constant hammering of my obnoxiously loud heartbeat pounding all over my brain.  So...NaNa came back and off we went again. I couldn't really see, and Aaron had to pretty much guide me everywhere.  They took me back into Labor and Delivery and tried to start an IV for fluids... but instead they poked through my vein and filled up my arm with fluids...  They tried again in my other arm and they got it after a few tries. 

They gave me Tylenol and Reglan, which slightly helped... but my pain was still severe.  They decided to pump Compazine straight into my IV along with Prednisone.  And let me tell you... if I ever have to get Prednisone again, everyone better watch out.  It made me CRAZY... not funny crazy, SCARY CRAZY.  I tried to pull my IV out myself and got super hot, started throwing my covers off and freaking out.  Thank goodness Aaron was there, because I could not calm myself down.  I hope and pray that I never have to get that again... EVER.

After being there for 6 hours, I was sent home with some prescriptions and told to take it easy and take my meds when needed.  I continued my meds throughout the next day, but was having a really hard time sleeping and finally by Saturday I started to feel like myself again. 

After talking with my doctor, my hopes of being able to start home treatment for the next round had been squashed, citing the bad reaction to the IVIG as a reason to receive my next treatment at the hospital again. So we will try again, next time at a slower rate and hopefully I'll be able to fight off the gnarly headaches. Until then, my friends... Thanks for reading and supporting our journey!

The New Baby!!!

Yes, that is Izzie with my pregnancy test.  She was so excited just because Mommy and Daddy were excited!

When we found out we were pregnant, we were so excited!!! But with that excitement came the feelings of anxiety and fear.  We had unsuccessfully been searching for a Maternal Fetal Medicine doctor who specialized in NAIT.  Most of the doctors we spoke to had no idea what the heck we were talking about and ended up asking us more questions than we asked them.  Forget about the nurses and staff members in the offices and how could I blame them?  Our condition is extremely rare and treatment is often considered experimental.  No one really knew anything and that was unnerving, because we didn't really know anything either! 

After hours of searching online, calling, looking for support groups and being disappointed... I finally found a tiny little line that specified NAIT as a specialty on the Johns Hopkins website.  With the help of my wonderful friend, Bethani, I was able to find out that Dr. Blakemore was a doctor who had seen, treated and done research about NAIT.  We made an appointment and she was incredibly informative, sweet and reassuring that we could and WOULD have a healthy baby.  She has had a very successful track record and she gave us something we had been searching for, hope and reassurance. 

Dr. Blakemore outlined our treatment plan which will include weekly IVIG infusions for me, regular check-ups and sonograms to check for brain and belly bleeds in the baby.  Toward the end of the pregnancy they will check the baby's platelets to ensure they are high enough to avoid a C-section if possible.  The IVIG treatments are an infusion of immunoglobulin that will hopefully protect the baby's platelets from the antibodies I will be producing while he/she is in my belly. These infusions are about 8 hours long because the immunoglobulin has to be pushed through my IV very slowly.  I will be receiving the first few treatments at Johns Hopkins and then hopefully I will be a good candidate for home care treatments. 

Much of the initial anxiety we were feeling has subsided with the answers and treatment plan we were given.  Now the fear is that it won't work or we will have complications.  These treatments have been largely successful and we are hopeful that they will be successful for us as well.  However there is still a chance for the baby to suffer a brain or belly bleed, retinal bleeds or pass away. 

For now, we are going to take this pregnancy one day at a time, praying for health and wishing for the best outcomes possible.  We are so grateful to our family and friends for being so supportive and we will keep you updated!

The Wright Family... The Wrong Platelets

This is a story all about how, our lives got flipped,
turned upside down.
So I'd like to take a minute, just sit right there...
I'll tell you how I became a NAIT mom to sweet Isabelle!

In St. Joseph's Hospital, she was born, not raised,
In the NICU is where she spent most of her days.
Chilling out with heat lamps, looking all bruised,
So tiny and hooked up to the IV tubes.

When a couple of docs said "It doesn't look good,
Her platelets aren't up as high as they should."
They said she's still gotta fight and her Momma was scared,
But felt comfort by her Daddy who would always be there!

They couldn't diagnose her, nothing was clear,
But when her count when up, there was a lot less fear.
One platelet infusion and the IVIG,
She was still a bit jaundice, but soon home to GB!

We pulled up to the NICU around seven or eight,
And they discharged our baby... Go home, see you later!
Looked at my family, I was feeling so blessed,
She's healthy, she's happy and she passed the test!




So obviously, that was a little bit silly, but if I have to tell the story of the hospital... I'll just cry.  It's something I'll feel guilty about for the rest of my life.  We actually left there with NO answers as to why Isabelle was born with such low platelets.  They told us the most likely scenario was NAIT and so they sent out blood off to Wisconsin the day after Isabelle was born.  We didn't get the results until over 2 weeks later and the results were that we were in the 100% group of NAIT. 

In the simplest terms I can think of, I have only negative antigens on my platelets (very rare), Aaron has only positive antigens on his platelets (very common) and when we passed it on to Isabelle she received a positive and a negative (one from each of us). Unfortunately, my negative platelets see ANYTHING except other negatives as a threat and began making antibodies to attack her throughout the pregnancy.  So for 9 months, I depleted her platelets to the point that when she was born she only had 10,000 platelets and the normal range is between 150,000 to 400,000 platelets.  We were extremely lucky and blessed that I delivered quickly, and that she had no brain or belly bleeds.  Sadly this is not the case for many NAIT babies and we thank God everyday that she is and has been so healthy. 

As rough as it was to watch our baby go through the platelet transfusion, IVIG, and numerous tests at the hospital, once the doctors got her platelet count up, it stayed up, and as she has grown the antibodies have left her body and her platelets will stay up for the rest of her life!  This was great news, and in addition to being a little miracle herself, Isabelle will be a guardian angel for all of her future siblings.  Since she was diagnosed with NAIT, our future pregnancies will need to be treated weekly in order to try to prevent a low platelet count and have the best chance at a healthy baby!  Aaron and I will be updating this blog as often as we can to keep anyone interested informed about our high risk, but hopefully high reward pregnancy!  Thanks for your support!