It's the 10 week countdown!!!

Ahhhh... This past Wednesday I made it the 27 week mark which means, I only have 10 more treatments!! Cue the Europe music... "It's the 10 week countdooooowwwn! Da da da da.... da da da da da.... da da da... da da da da da da daaaaa!"  It actually has my emotions pretty mixed up. On one hand, I am extremely excited to stop the treatments, stop getting IVs every week, stop having nurses and pharmacists constantly hound me about my weight and get my weekends back... But on the other hand, it means I'm only pregnant for 10 more weeks and as hard as it's been, I truly enjoy being pregnant.  I love feeling her kick inside of me and having Isabelle and Aaron feel her too.  So I guess it's a little bittersweet.

Since my last post, I have continued to have IVIG treatments every Sunday.  They have gotten more irritating to me and I did reach a point a few weeks ago where I really wanted to quit.  I knew I couldn't quit, but I was so over them.  I cried every Saturday night thinking about having to wake up early to have them and was having a pretty hard time.  I snapped out of it, and told myself it isn't that bad and above all else, it's working! At our last few doctor appointments, Baby girl has been healthy and it's because of these treatments.  So while I still don't like having to get the treatments, I have renewed faith in them and feel better about getting up on Sunday to do it.  More recently, I have become discouraged and nervous because my veins seem to be giving up on me.  The main vein that was being used in my right hand has collapsed and my hand was very sore for a few weeks.  It has just recently stopped being tender to the touch but the vein is still unusable.  The main vein in my left hand has been bruised and battered as well and is becoming hostile.  It literally rolls away when the nurse tried to get the IV in... like "umm hell no, not again!". I have also tried a vein farther down my arm but it also rolled away, and then bruised up and was very sore for about a week afterwards too.  I'm hoping we can continue to find good veins to use and the soreness and bruising eases up. I only need you 10 more times veins, just 10 more times!!

We have also  continued to have brain scans on the middle cerebral artery for baby girl--and so far, so good!!  Some days she is more cooperative than others so the scans can take anywhere from 15-20 minutes to 45-60 minutes.  They have to get an accurate pulse rate 3-4 times--which means baby girl can't move while she is doing it.  Then they put the readings they capture into a calculator that tells them whether or not the middle cerebral artery is doing what it should.  It's a little scary when it's taking a long time to get the readings and even scarier when they put the numbers into the calculator.  It's only a few minutes but it feels like it takes forever for them to say that she's doing well and the artery is  pumping within the correct range.  I finally got up the nerve to ask what would happen if they readings were not within the healthy range and the answer I received was frightening.  Dr. Althaus said I would have to get the Fetal Blood Sampling of her liver done earlier and more than once... so I hope and pray that it never happens and her middle cerebral artery continues to function as it should.  One nice thing that happens during these sonograms is that they sonographer always tries to let us see baby girl's face.  She is not always cooperative but it is extremely reassuring and amazing to see her.  It makes all the fear and worry disappear, even if it's just for a few minutes while we stare at her tiny miraculous face.

Speaking of the FBS (fetal blood sampling), I dared to ask more about that procedure as well.  I will have to go into an operating room, get an epidural and then there is a waiting game while they wait for the baby to be in an optimal position.  Once the needle is in baby girl's liver, they pull the blood sample and rush it for analysis.  It takes about 5 minutes to get the platelet reading back and during that time the needle has to stay in the baby's liver--just in case. If the platelets are in the healthy range they will take the needle out, if not the needle will be used to infuse the negative platelets.  I will be monitored afterwards and if they do have to infuse platelets, it is likely I will need to have the procedure again or I will need to have a C-section instead of a vaginal birth.  I was told it could take up to 2 hours for the whole procedure to be finished and the doctor who would be performing the procedure is the person who has done it the most with the most success.  There are usually 2 surgeons, 2 fellows, 2-4 residents and 2-4 nurses in the operating room during the procedure.  My doctor said that it is sometimes overwhelming but they are all there to learn and want to be helpful.  I know that's true but I am an extremely anxious person and I don't want anyone asking questions about what's going on because I don't want to know.  There will be a curtain up so I can't see my belly and Aaron is allowed to be on my side of the curtain with me.  I know if people are asking, why did you do this instead of that or asking about risks and other things, it is going to freak me out.  I don't need that.  I do want others to learn so I just want them to observe and ask questions later, lol... Maybe that's unreasonable and selfish but I just don't know that I am strong enough to hear about all the things that are going on over on the other side of the curtain.  We were also told that we would have to have the procedure earlier than we expected, at 34 weeks instead of 36 weeks. They are just trying to make sure they know as much as they can about baby girl's platelets just in case I deliver earlier than my induction date.  I won't lie, when she said that it would be 2 weeks earlier than we originally planned, I freaked out a little bit.  I am still unsure if I want to do the procedure, and to have someone tell you that it's because they think you could possibly deliver before 37 weeks, really rattled me.  So at our next appointment on Dec 3rd, I will be asking 5 million questions and if we feel comfortable with it, we will schedule the FBS. Ahhhhh!!!!!

In other news, I'm starting to have a harder time getting up off the floor, or standing all day at work without having some pain.  She is measuring 2 weeks ahead and my belly is DEFINITELY bigger this time than last time.  I'm very emotional...I literally cried because I wanted CinnaStix from Dominos the other day-- what can I say, it was the hormones, lol!  And of course I am always tired... blame it on the treatments, working full time and having a toddler at home!  I passed my Glucose test, thank goodness-- but still need to have more blood work done to make sure my low blood pressure isn't due to anemia.  Isabelle is obsessed with pulling my shirt up and patting my belly saying "Baby sitter (baby sister)". Baby girl is constantly moving, rolling and kicking.  Aaron loves to feel her move and it's such a wonderful experience for us.  It's hard not to compare baby girl to my pregnancy with Isabelle.  Isabelle didn't move nearly as much and  I wonder if it's because her platelets were so low and she was essentially nearing death inside of me.  Such a horrible thing to think, I know... but I can't help it.  My doctor said it's a ridiculous thing to think and that all pregnancies are different, but the thought often crosses my mind, along with guilt.  The important thing is that Isabelle is healthy and happy and so is baby girl, and I am extremely thankful for that. 

Aaron, Isabelle and I are so happy and excited for baby sister and I have gone into full nesting mode.  Poor Aaron has to deal with me constantly rearranging, organizing and purging things.  I am always tired and should probably sleep instead, but these things need to be done!! We are looking forward to Izzie's 2nd Birthday, Christmas and the New Year and then it's baby girl Wright time!! Crazy, it feels like time just started moving very quickly.  I am  so grateful to our friends and family for being there for us, whether it's to watch Isabelle during my doctor appointments or just letting me vent, cry or be unreasonable about the situation we've been put in.  I have to give the most props to my wonderful husband, without him--I'm not sure I could do this and I am so blessed to have him as my number one supporter, my rock, my best friend. Thank you for reading and keeping up with us. We really appreciate all of your support, kind words and encouragement.  It really means so much to us. 

 

Halfway there!

I haven't posted in about a month so there is a lot to say.  I just recently finished my 10th treatment!! My home treatments are going well and I've moved them to Sundays so that I can still go out on Saturdays and do fun Fall things with family and friends.  So every Saturday night I set up all of my medicines and supplies for the nurse and drink water until I feel I'll explode and every Sunday morning I wake up at 7am and wait for my nurse to arrive, start my IV of fluids and immunoglobulin and I try to sleep.  When Aaron and Izzie wake up, we watch football and go for walks (with my portable IV pump).  I have been receiving visitors during my treatments which is always really nice and comforting.  It really helps to break up the day and gives me something else to focus my attention on.  

 
 
 

 
The IVIG really takes a lot out of me and usually makes me feel extremely groggy and gives me body aches as well.  So when treatment is over I try to rest as much as I can so that I'm not a zombie at work the next day.  My small headaches, body aches and general exhaustion usually last through Monday and Tuesday.  Aaron is in NYC on Mondays and comes back on Tuesday mornings and that has exacerbated my exhaustion as well.  Izzie is quite the handful and really only likes to be put to bed by Daddy... so yeah, that's super fun on Monday nights, lol.  Treatments have become my normal and being exhausted has as well.  Some days are better than others but in general I think we are all adjusting to this life and doing pretty well.   I have also started a count down... only 16 more treatments to go.  Too soon? Oh well, it makes me feel a little bit better :)

As you all know, we are having another baby GIRL and we are so excited about it!! At our anatomy scan, the doctor reassured us that baby girl is doing very well, has no bleeds and has all the parts she should!  From now on, we will be getting a sonogram every 2 weeks to check for belly and brain bleeds. The sonographer will check baby girl's middle cerebral artery in her brain and do a Doppler on the blood flowing in that artery.  I was told the Doppler should show the same blood flow as the heart and should be a similar rate to her heartbeat.  If it is slower or faster than her heartbeat, they will have to do a full body scan and perhaps other tests if needed to determine if she has a bleed in her belly or somewhere else in her brain. If she does have a brain or belly bleed, they would try a platelet infusion while in utero to avoid having to deliver because she is not developed enough to thrive outside of the womb.  So every other Thursday, I will be a wreck until I get the all clear that baby girl is free of bleeds!!  We have had 2 brain scans on baby girl and so far the IVIG is working, so we are hopeful that it will continue to do its job.  Prayers are sent up every day and night that our little girl will be healthy and continue to fight off Mommy's antibodies.

We had a new NAIT knowledgeable doctor at our appointment, Dr. Althaus.  She also talked to us about my delivery and the procedure I will be having done 1-2 weeks prior to delivery. I will be induced 3 weeks early, so my due date has changed from February 24th to February 3rd (my mom's birthday).  Izzie was also born at 37 weeks, so I'm not too worried about delivering early.  They said they want to get her out as soon as she is considered early term because the longer she's in my womb, the more likely she is to have a bleed and towards the end of the pregnancy my womb is becoming increasingly more hostile.  It makes me sad to hear someone refer to my womb as an unsafe place for my baby.  I'm supposed to protect her and provide a safe place for her to grow, but instead my body attacks her and it's scary and dangerous.  I know I can't control it, but that doesn't make it suck less or make me feel any less guilty. 

About 1-2 weeks before I deliver I will be having a procedure to check on baby girl's platelet count.  I will receive an epidural, and they will use a sonogram to check on the baby's position.  Once she's in the optimal position, they will insert a super large needle through my belly, through the placenta and into baby girl's liver to retrieve a blood sample.  Then they will immediately test her platelet count.  If she has a normal platelet count, the procedure is over and we will be induced on schedule.  If the platelet count is below normal, they will have to use the same type of procedure to infuse negative platelets (the same as mine), so that my antibodies will leave them alone and the new platelets can thrive in her blood.  I asked as many questions as I could, such as risk factors and how long it takes, but I was so scared and nervous about everything they had just told us and I needed time to process it.  I'm sure as it gets closer, I will have more questions and concerns... but as of now I just don't really want to think about it.  I keep telling myself I will cross that bridge when I come to it.  I don't have the energy to worry about that on top of everything else. 

For now, we are taking things one day at a time and I am trying to enjoy this pregnancy as much as I can.  I am loving knowing that she is a girl and feeling her kick and move around inside of me.  I'm grateful to have such a wonderful husband and daughter who put up with me on my bad days, make me smile when I feel like crying and love me through it all. Thank you for reading and for your continued support.  We so appreciate the prayers, kind thoughts and love. 

Home treatments!!

So, I was approved for home treatments!!!  For the past 2 Saturdays a nurse has come to my house and I received my medicine from my own couch!! Pretty exciting stuff!!

I've never been a recipient of home treatment, nor have I known anyone who has been so I didn't really know what to expect.  The company that handles my treatments is called IgG America and every week they call and ask me a million personal questions and schedule a delivery.  The first delivery I got was a HUGE box sent via FedEx and included a ton a medical stuff, and IV pole, saline bags and my immunoglobulin.  It honestly kind of freaked me out.  I wasn't really sure what some of it even was or what to do with it all.  I was especially concerned with how to keep it out of reach of my nosey toddler, Isabelle.  The only direction I was given was to refrigerate my immunoglobulin and make sure to take it out the night before my treatment.  So I hid it from Izzie and freaked out every time she opened to fridge. 

When Saturday rolled around my nurse came to my house around 7:15am and I wasn't expecting her until 7:30-8:00am so I was a hot mess, lol.  She started my IV and my saline, I took my pre-meds and tried to get comfortable.  My first nurse's name was Maggie and she was very sweet and super efficient.  She helped me fill out my paperwork and checked out the things that had been sent to me.  When it was time to start my IVIG, she hooked it up to a portable, battery operated pump.  It came in a little bag/purse thing and would allow me to be mobile during treatment.  Which for me, was most beneficial because I had to pee at least twice an hour!! I guess that's what drinking tons of water and Gatorade will do to ya though. 

Throughout the treatment, I played with Izzie, napped, watched TV and planned for school.  I also had my temperature and blood pressure checked every hour.  I'd like to say I was more productive, but the Benadryl that I take makes me very tired and the IVIG gives me slight body aches.  Aaron stayed home the whole time except to take Isabelle for a walk.  When they did go out for a walk, I was a little sad because I wanted to go to... but couldn't.  I just had to think how grateful I was that I didn't have to get a sitter for her all day, or sit in a hospital bed either. 

My treatment ended around 5:30pm and Maggie asked me a few follow-up questions, took out my IV and she was out the door.  So much better than getting out of the hospital at 8pm and still having to drive home.  Maggie was very talkative and was so wonderful with Isabelle and with my dog, Sophie.  She won't be my permanent nurse, but she is my alternate.  So I will be seeing her again! She followed up with me the next day, making sure I hadn't gotten any headaches and that I felt okay which was super nice.

At my second treatment I had a nurse named Bernadette or Bernie as she likes to be called.  She was also an awesome person who really got along well with my family!  She had never had a NAIT patient before so she was extra cautions with everything that she was doing and made sure to double check the protocols set for me.  She was also very talkative but stayed a little bit more out of the way in my tiny little house.  We played with Izzie, we watched TV and I had my temperature and blood pressure checked every hour again.  Isabelle was absolutely terrified of the blood pressure cuff and freaked out every time Bernie went to check it.  She cried and screamed at her because she thought she was hurting me.  It was really sad but super sweet that she wanted to protect me.  Bernie let Isabelle push the button on the cuff and after a few times of that she was less concerned. 

I had a lot of time to lay around again which honestly was really nice considering how tired I've been.  My treatment ended around 5:30pm again and Bernie took my IV out, filled out some paperwork with me and was on her way!

Overall my experiences both times were very pleasant and much nicer than going to the hospital.   I still had slight headaches and general body aches but overall my side effects are minimal.  I'm always really exhausted after treatment and usually for the next 2 days afterwards as well.  I've been trying to fight through it and still go out and live my life but it's hard.  If I stop drinking water and Gatorade in the 48 hours after treatment it gets pretty bad. So I've learned to keep up my fluids to keep away the headaches. 

One thing I was spoiled with at the hospital was that I was always given an ultrasound to get the baby's heartbeat.  Obviously at home I don't have an ultrasound machine so I use my Doppler to get a heartbeat as often as I can.  I am only barely feeling the baby move and if I can't find the heartbeat with my Doppler, I start to freak out.  Terrible thoughts go through my head and I wonder if the baby is okay.  Many NAIT babies die in utero from strokes and brain bleeds and doctors don't always know why some do and some don't.  They say it's spontaneous... and that's a scary word for a mom to hear.  That your baby could spontaneously have a horrific complication.  So for the past 2-3 weeks, I've been a bit of mess.  Worrying constantly, praying and hoping that my baby is healthy and that I'm not causing him/her any pain. 

My husband is amazing and he knew that I was a wreck about the baby and also that I'm super nosey about it's gender, so he scheduled a 3D sonogram for me on my birthday.  One of the best things about this sonogram is that Izzie was allowed to come too and she FREAKED OUT!  She was so happy and kept pointing at my belly and then pointing at the screen, saying "OHHHH, Ba-by!!" It's a memory that Aaron and I will never forget and I am so indescribably happy to have been able to see my sweet little baby and be reassured that he/she is doing well in there.

For now my treatments will stay at home on either Saturdays or Sundays in September and then all Sundays in October.  While I know that this will never be easy, I am very grateful that it has become easier than before.  I know I can do it and I'm so thankful for all of the support my family's been given.  Thanks for reading and thank you for your support!


 

My last hospital treatment... hopefully!!

2 Saturdays ago I had what will hopefully be my last treatment at the hospital.  We didn't have a sitter for Isabelle, so Aaron stayed home and my mom came with me. I packed up all of my things and my million bottles of water and off we went.  When we got there at 9am, it was the same routine... pre-medicate, fluids and finally around 11am I was given my IVIG.  My nurse was so awesome and I definitely ended up with another girl crush by the time we were done.  Once again, I was her first NAIT patient and she had a lot of questions for me.  I was happy to tell her what I had been through and she gave me some good options for other places I could look for research articles on my condition. 

During the treatment, my mom was adorable and asked everyone a million questions (just like a good momma should).  One of the main questions that we wanted an answer for was, "What is the difference between this brand and the previous brand I had?"  No one had an answer though, which was a little bit frustrating.  We asked the nurses, the pharmacist and the doctors to which they all answered, "I'm not sure," or "That's a good question." The general consensus we all came to was just what my doctor had said before, that this brand just had less side effects than others.  The ladies in my support group were very helpful and many of them said they switched brands multiple times until they found one that was right for them.  So, I was feeling optimistic that this new brand was the one for me!!

My mom and I haven't really had a lot of girl time lately, so it was nice to be able to hang out with her all day.  She even gave me pedicure (well the best one she could with what she had, lol).  Unfortunately, while we were there my mom got a phone call from our relatives in Texas and we found out that my Great Aunt Cornelia had passed away. She was the sweetest, most caring lady and gave the best bear hugs around.  We were sad for ourselves but she was trapped in a body that wasn't hers anymore, so there was a sense of relief that she can now be free of that and go cause some trouble in Heaven. 

My bestie Natalie came up to visit also because I wouldn't be able to make it to her end of summer cookout that day.  I broke down and I cried for a bit about having to miss out on all of my Saturdays, especially in the Fall-- my favorite season!! So, she brought me a magazine filled with yummy men and some yummy snacks and of course we talked nonstop, laughed obnoxiously and exchanged school stories.  It was really nice and helped to break up my day.  Love you, Nawee!!!

After Nat left, Dr. Blakemore came in and asked the nurses to get me a sonogram.  My mom videoed it for Aaron and it is now one of Isabelle's favorites to watch (mine too).  Baby Wright's heart rate was 150 and he/she was moving all over the place!  I'm still not really sure if I can feel the baby move or if it's just something else... but it was so fun to watch him/her move on the screen.  Around 6pm, my mom had to leave and Aaron was dropping Izzie off at Uncle Danny & Aunt Shara's (and she had a blast), so he couldn't come up until about 7:30pm.  I had a little bit of time to myself and as much as I tried I just couldn't sleep... too much on my mind. 

When Aaron got there we were wrapping up, getting the rest of my IV fluids and discharge papers.  I had a slight headache but per Dr. Blakemore and the ladies in my support group, I took Tylenol and starting crushing Gatorade and water.  The next day, my headache lingered but it was such a baby headache that it really wasn't bothersome.  I was extremely exhausted so Aaron let me sleep in and I made sure to try and get as much fluids and rest as I could.  School was starting on Monday so I really wanted to make sure I was feeling okay. 

I made it though the first week of Kindergarten, just feeling tired both mentally and physically.  I had a gnarly bruise on my arm from blood work so some of my co-workers were a little bit rude about that, and many of them don't know my situation or the extent of my treatments.  However, many of my coworkers are aware of my situation and are incredibly sweet and supportive.  I had surprise chocolate, laminating cut out for me and words of encouragement throughout the week. I feel very blessed to work with people who are also my good friends and have made me feel so loved. 

Since my headache was so minimal this time, I was approved for home treatment... YAYYYYYYY!!!  So my next post will be about that experience and hopefully I will not have to go back to the hospital unless complications arise!  I am feeling very thankful that things are looking up and that my body is responding to this brand better than the other.  Sorry I'm so behind with my posts... School, chasing Izzie and being pregnant are exhausting! Thanks for reading and supporting our journey!!

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!