24 Weeks and Counting!

Just a little update... I promise!

We went in for my 24 week appointment yesterday, and had a really good discussion with my doctor about what is to come, and where to go with my treatment from here. With my doctor in complete agreement we made the decision to forgo the PUBS testing at 32 weeks (PUBS is a test much like an amniocentesis, except instead of taking amniotic fluid, they actually puncture the umbilical cord and take a sample of the babies blood supply). The test itself is just so risky to Maddox, and while there are benefits to it (like finding out exactly how effective my treatment has been, and providing opportunity to transfuse the baby with more platelets if needed) we all seemed to agree that the risks are greater. This is all a game of "which is riskier," and this was just the first of several tough calls we will have to make during the last phase of this pregnancy. Ultimately skipping the PUBS eliminates any possibility that this will be a vaginal deliver, it's just too risky without knowing the babies counts.

So, because we have no real way of knowing how effective my treatment is at this level without the PUBS, we have to assume that it isn't being as effective as it should, and increase it in one way or the other. In two weeks I will begin what is called "salvage therapy" which at this point means adding prednisone to my daily regimen. Prednisone is a steroid, which I'm not gonna lie scares me. I knew it was something I was most likely going to have to take towards the end of pregnancy, but I didn't expect to be taking it for three months. I'm nervous about what type (if any) side effects I will experience, worried about developing gestational diabetes as a result of it, just plane worried! I've been pretty balanced and steady for the most part during all of this (with the exception of a few little meltdowns to my mommy), but for some reason this decision has sort of knocked me off kilter a bit. I will regain my balance, what else can I do? As my mom said, I'm in the middle of it now, it's not like I could turn back or call a time out!

In the mean time, here are a few pictures from our last ultrasound. Maddox is healthy and perfect, no hemorrhaging or abnormalities. He's active as can be and best of all doesn't appear to be oversized like Jax was by this point!

Introducing baby Maddox!

Just thought I would type a quick update while I am lucky enough to have a quiet house (I do LOVE nap time!)...
We had our 20 week "anatomy scan" yesterday revealing the sex of the baby (as if we didn't already know). Nothing has fallen off, and he is still most definitely a boy. And better yet, he is perfect! No bleeds, no abnormalities, just a perfect, active, healthy little boy. We couldn't ask for anything better! Treatments are going well (although my arms are starting to look a bit like a drug addicts), and so far seem to be doing their job. I haven't had anymore side effects since the very first dose, so my doctors have agreed to put my infusions back on weekends, which makes our lives MUCH simpler. So for the time being things are going as smoothly and perfectly as they possibly can, and we couldn't be more thankful. I'm officially half way there, and am scheduled to give birth somewhere in the middle of finals... lol. This will be one hell of a semester!

One down, 19 to go!

I completed my very first round of treatment last Saturday. I checked in around 10am and left somewhere around 4:40pm, spending all but about an hour of that time hooked to an IV. Trying to look at the bright side, I'm thinking this doesn't have to be such a bad thing. Really it's forced relaxation time. No cell phone reception, but I do have WIFI, a TV, and a comfy recliner to hang out in all day. They even have coffee and snacks! Of course I say this after one treatment... I'm sure it's going to get old by week 20. This time around my amazing sister in law woke up at the butt crack of dawn and drove four hours with my brother, their two hound dogs, four month old son, and a packed car just so she could sit with me for my first infusion. Just her being there brought my anxiety level down several notches! 7 hours of trashy VH1 shows didn't hurt either 8-)
THANK YOU RHIANNON (and Hulu)!!!

Anyway, everything went really well. I had a small drop in blood pressure somewhere in the middle of increasing the rate of my dosage, but nothing to think twice about. The baby bounced around like he was on crack the whole time! The only real reaction I had was a few hours after I got home. My chest started getting extremely tight and it was hard to catch my breath. I was told if that happened to go straight to the ER, so that's exactly what we did. It was scary in the moment (or rather hours that I was sitting waiting in the ER), but looking back was a whole lot of nothing. They basically ran a million tests, asked me a bunch of times "What is IVIG? Why are you having it?" called it an allergic reaction to the treatment, gave me a benedryl, and sent me on my way. By that time the problem had pretty much resolved itself anyway. I guess it's better to be safe than sorry, especially when dealing with something that has such a broad range of side effects, but it sure felt like a big waste of time to me!! Why don't they tell you to take a benedryl and see if it helps BEFORE going to the ER instead of scaring the crap out of you and then sending you home? Oh well, such is life I guess! I count myself lucky that was the only side effect I had. Many of the women that go through this end up with violent migraines for days after their infusions, or fevers, or worse. With everything I have to do with school, and the apartments, and Jax, I was really worried that I would have to be laid up with a migraine for days. Thankfully that doesn't look like it will be the case! It's all about the small miracles in life, let me tell you!

SO, if any of you are ever in the area on a Saturday, feel free to stop by the Stanford Hospital Infusion Center and visit me! I'll be there every Saturday for the next 19 Saturdays from 10am to 5pm...

The HUGE bottle of IG. The nurses kept joking around and covering it up so we wouldn't watch it sloooooowly dripping.

My arm was FREEZING where the IV was, so we piled on the blankets!

Rhiannon, my IVIG buddy :)

15 weeks and a little bit

Yesterday I went for my last appointment before starting my treatment at the beginning of January. I came in with one of those "bad feelings" we paranoid mommies get, and it didn't help that the resident took 15 minutes trying to find the heart beat (to no avail). They ended up hauling in the ultrasound machine to take a look and make sure all was well. The little monster is doing great, he was bouncing all over the place hiding from the poor resident. He's getting so big and has a big fat belly already 8-) So cute... I'm starting to be able to feel him move, and Nolan was even able to feel a little kick last night. 

The whole appointment was a little weird. At one point I believe there was my doctor, a resident, and three nurses crammed into the little exam room. Everyone seemed just as on edge about beginning treatment as I am, which was oddly comforting. They are all working really hard to make sure everything is perfectly coordinated and will go smoothly, which I am grateful for. We're starting to get into the nitty gritty parts of NAIT, and even though my doctor has treated many patients with this disorder, it's still a little bit like driving a car blind. So needless to say I think there is a little anxiety across the board. We're going at this pretty aggressively , starting treatment a month earlier than most and doubling the amount of IVIG that a usual NAIT patient gets. I will have the anatomy scan around 18 weeks (you know, the one that reveals the big mystery sex), and then another one every four weeks after that to check for bleeds. I feel very confident that we are doing just about all that can be done at this point, with the exception of adding prednisone (a nasty steroid with even nastier side effects) which we plan on holding off on for as long as we can.

Anyway, I will post belly shots soon (I keep getting demands for them). But until then, Merry Christmas everyone!!! Thanks for all of your support 8-)

It's a boy! (You're shocked, aren't you?)

Yesterday I went to yet another ultrasound (this baby is going to come out striking a model pose, I swear)... this time for what is called the Nuchal Screening. They measure the pocket of fluid at the base of the babies neck (among other things) which helps tell them the likelihood of the occurrence of Downsydrome and Trisomy 18. Everything looks great! Brain looks normal (BIG sigh of relief), and our risks of the baby having any of the syndromes they tested for was something like 1 in a bazillion. I asked if they were able to tell the sex yet (I'm only 13+ weeks, so it's still a bit early, but the parts are there, just hard to see) so they poked around and said "I'm almost positive that's a boy!" 

Really, at this point why do we even bother with ultrasounds in our family? What is this, boy number 20 in a row, in the last 17 years? Correct me if I'm wrong here, but I think it's something close to that. It's just laughable now... we were holding out hope for a girl (not sure why we even bother), but of course we are thrilled for another boy. They're so much fun!!! I'm already feeling severely outnumbered, but that's okay, there are worse things 8-)

I suppose there is always a chance they could be wrong, we'll find out at the next ultrasound (around 20 weeks I think...), but I highly doubt it!
~Tracy

Pregnancy Uptade

Thought I would make an effort to update everyone on the pregnancy so far.

I just had my fourth doctors appointment in six weeks... that's right, fourth (I think most people would have had one, maybe two by this point). Something I guess I'm going to have to get used to having a NAIT baby (for those of you just tuning in, check my previous notes which explain what NAIT is and the details of treatment for it. Most of them were written this time last year, as the doctors were uncovering everything. I know quite a bit more about the disorder now than I did then, so if you have any questions feel free to ask!). My last appointment was with my high risk doctor (Dr. El-Sayed) who is the chief of obstetrics at Stanford Hospital. It's a little different getting used to a new doctor and his style of handling things compared to my regular OB (Dr. Chein) who we grew very close to during the last pregnancy and aftermath. All in all Dr El-Sayed is a good man, and definitely knows his stuff. We trust him, it will just take some time to form that bond that one gets with their doctor. The biggest relief so far is that he has agreed to allow me to deliver at Sequoia Hospital (where I had Jax) with Dr. Chien leading the c-section. This is of course all assuming that the pregnancy goes smoothly and that the NICU at Sequoia is comfortable knowingly taking on a NAIT baby. Everyone keep your fingers crossed! Sequoia is a wonderful hospital with kind nurses, knowledgeable doctors, a strong NICU, and private rooms for all the moms (with beds for the dads too!). I loved giving birth there last time, and have heard it is day and night from what Stanford has to offer. 

According the latest ultrasound I am actually a full week further along than what we previously thought. Actually this explains a lot to me! It makes me feel a whole lot better about some of the things I have been feeling, not to mention the size of my belly already! I swear I can feel kicks already. I know that's impossible for an 11 week old baby, but I still swear I feel it 8-) As far as we can tell everything is normal and perfect so far. The worst part about all of this is the unknown. The risk of the baby hemorrhaging this early in the pregnancy is unheard of, most happen after 20 weeks, with some as early as 16 weeks. The most important thing to decide now is when to start treatment. I am hoping to start as early as possible reasonably. Dr. El-Sayed usually begins around 20 weeks... he is going to look at the latest research during the next two weeks and we will settle on a time frame at my next appointment. I appreciate his willingness stay as up to date as possible on this disorder, since unfortunately it is severely under-researched, and admittedly it is extremely confusing even to those who treat it. As long as there is an explanation behind whatever time frame is chosen I will feel comfortable. Right now 20 weeks sort of feels like an arbitrary date someone picked out of a hat, and since that time every NAIT patient has began treatment at 20 weeks just because that's the way it has always been done. I need a more of an explanation than that. From what I understand if you're previous child did not have an ICH (inner cranial hemorrhage) you are placed in a "low to moderate" risk category. And since ICH usually don't occur until after 20 weeks they assume that that is the best time to start treating a "low to moderate risk" patient. The problem I see with this theory is that 48% of babies who have and ICH at birth are siblings of children that did not. To me that indicates that maybe they should take a look at starting treatment earlier regardless of your risk category. 

Anyway, I'm babbling. This was supposed to be a quick update!
Hope everyone else is doing well, Happy Thanksgiving!!
~Tracy

Grin and bare it...

For those of you waiting in anticipation, I am indeed pregnant with #2! Jax is going to be a big brother, God willing, towards the end of May. And so this starts what I hope will be a long line of journal entries to document what will more than likely be a very difficult and trying pregnancy. I have thought a lot about how much to make public regarding what is to come, especially considering the risks, and have come to the conclusion that it is more important to educate people than to pretend everything is normal and perfect. Those of you that know me well enough know that I will tell anyone that will listen about how NAIT has effected my life and the life of my family. Some day, hopefully not far from today, NAIT will be as well known as RH disease, and like RH will be tested for prenatally.

I'm going to try to dig up my old blogs from after Jax was born, which have more information about the logistics of NAIT... I'll post those when I get a chance.

Please if anyone has any questions feel free to ask! I'm happy to talk about it!

Jax Ellis- 9lbs 5oz, 2 days old. Biggest baby in the NICU!