Relief

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As most (or probably all) of you know, baby Maddox has finally joined us in the world. With everything we went through to get him here safely, now, two weeks later, I feel like I can breath for the first time.

Maddox was born via scheduled c-section on May 19th at 9:55am. Because he was only 36 and a half weeks, and not full term, there were concerns that his lungs may not be fully developed. Although our nerves were pretty shot, we felt confidence in the team of doctors and nurses surrounding us that day. Every person that was involved in Maddox's delivery, right down to the anesthesiologist, had copies of my complete chart. They were all given a print out from a medical journal providing a run down of NAIT. My OB said they were more prepared for my surgery than any other she had ever done... and it showed!

After getting prepped and numbed in all the right places, Nolan was brought into the OR to sit next to my head. Before we knew it my doctor was saying the words I had been waiting to hear for 8 months; "here comes your baby!" She pulled his head out, and before the rest of his body had left my stomach he was screaming. I have never heard a more relieving sound in my life. Screaming equals breathing. I cried harder than I have cried since Jax was born. It's impossible to put into words the amount of pressure and fear that was lifted from my body with Maddox. Physical, mental, and emotional pressure that I had been carrying for months, finally gone. Well, mostly gone anyway. He was out, but we still didn't know how successful the treatments had been. Because he seemed physically stable, the nurses allowed Nolan to hold him by my head for a little while. I gave him plenty of kisses before he was whisked off to the NICU for testing. As I was being stitched back together, the nurses explained to me that they found only one small patch of petechia (broken blood vessels that can sometimes signal internal bleeding) near his groin, but insisted he seemed healthy otherwise. By the time I was wheeled to recovery the numbers were back and seemed promising. Maddox's platelet count was 92k, 30k above what Jax's were at birth. I'll admit, they weren't as high as I had hoped for, but they were still great counts. And better yet, an ultrasound performed on his head found no signs of brain bleeds. The pediatrician let us know that they would test his platelets again in six hours, and if they continued to climb over the next few tests he would be allowed to room with us.

Unfortunately, like dejavu, six hours later his had counts dropped down to 50k, and then 33k six hours after that. It was Jax's delivery all over again, with one thing majorly different. We were in control. I decided years ago that if we ever had another child I was going to be armed with as much information as I could possibly get my hands on. I absolutely refuse to be in the dark again. So with the help of hematology we came into Maddox's birth with a game plan. If his counts were to fall below 50k but above 30k they would administer IVIG (the same infusions I had been receiving all the way through the pregnancy) and test again an hour after the infusion was complete (infusions take about 5-6 hours). Because Jax only needed one round of IVIG our hopes were that Maddox would only require the same. If Maddox's counts dropped below 30k they would transfuse with the donated platelets we had standing by. My sincere gratitude to the three donors that gave their platelets for my son... Thank God they weren't needed! After one round of IVIG Maddo'x platelets climbed back up to what they were at birth. They dipped again a few hours later, but have steadily been climbing since. By our third day in the hospital he was released to our room and was able to spend the remainder of our stay with us. We were all released after five loooooong days in the hospital.

Now, two weeks later, Maddox's platelet count is finally within the normal range (150k and up). I didn't realize this whole pregnancy it was as though I was holding my breath, just waiting for something to go wrong. Now that it's over I can breath. Best of all I can enjoy this little person we have created. Sometimes I can't help but wonder what I did to deserve one miracle, let alone two... but I have a feeling God has great plans for these boys. I'm so blessed to be their mother, I truly would walk through fire for them.

Anyway, that is Maddox's birth story in a nutshell.

Anyone wanting to have a better understanding of NAIT, please check out this amazing video my friend (and fellow NAIT mommy) Sarah made. It really helps put things in perspective 8-)

Go to:
http://www.onetruemedia.com
Login:
snekane@hotmail.com
Password:
nekane02

Click on the video called NAIT and enjoy!

Thank you everyone that was such a huge support to us during this journey, and most of all thank you for your prayers! They have meant the world to us 8-)
~Tracy

Welcome Baby Maddox!

When Jax was almost two my husband and I began trying for another baby and almost instantly became pregnant with another boy. I can’t pretend I wasn’t afraid, deep down to the core afraid, but I was also more determined than I had ever been in my life. I was going to protect this little man if it killed me. I must have said to my high risk doctor over and over again “pump me up with whatever drugs you need to, just get this baby out alive and healthy.” I started IVIG treatment once a week at 16 weeks pregnant. Each infusion lasted approximately six hours, and essentially wiped me out for the whole day. I also began taking daily prednisone at 20 weeks which brought me to being border line diabetic. I pricked my finger three times a day to check my glucose levels and was fortunately able to keep it under control with diet and exercise. My doctor sent me for non-stress tests once a week for the entire third trimester, and I had monthly ultrasounds to check for hemorrhaging for the entire length of the pregnancy. The nurses all knew me by name (even the ones I had never met), and my doctor joked that they should set up a permanent suite for me at the hospital because I was there so often.

My second child, “Maddox” was born via scheduled c-section at 36 weeks. Because he was not full term, there were concerns that his lungs may not be fully developed.

Although our nerves were pretty shot, we felt confidence in the team of doctors and nurses surrounding us that day. Every person that was involved in Maddox's delivery, right down to the anesthesiologist, had copies of my complete chart (including Jax’s history). They were all given a print out from a medical journal providing a run down of NAIT. My OB said they were more prepared for my surgery than any other she had ever done... and it showed!

After getting prepped and numbed in all the right places, Nolan was brought into the OR to sit next to my head. Before we knew it my doctor was saying the words I had been waiting to hear for 8 months; "here comes your baby!" She pulled his head out, and before the rest of his body had left my stomach he was screaming. I have never heard a more relieving sound in my life. Screaming equals breathing. I cried harder than I have cried since Jax was born. It's impossible to put into words the amount of pressure and fear that was lifted from my body with Maddox. Physical, mental, and emotional pressure that I had been carrying for months, finally gone. Well, mostly gone anyway. He was out, but we still didn't know how successful the treatments had been. Because he seemed physically stable, the nurses allowed Nolan to hold him by my head for a little while. I gave him plenty of kisses before he was whisked off to the NICU for testing. As I was being stitched back together, the nurses explained to me that they found only one small patch of petechia (broken blood vessels that can sometimes signal internal bleeding) near his groin, but insisted he seemed healthy otherwise. By the time I was wheeled to recovery the numbers were back and seemed promising. Maddox's platelet count was 92k, 30k above what Jax's were at birth. I'll admit, they weren't as high as I had hoped for, but they were still great counts. And better yet, an ultrasound performed on his head found no signs of brain bleeds. The pediatrician let us know that they would test his platelets again in six hours, and if they continued to climb over the next few tests he would be allowed to room with us.

Unfortunately, like dejavu, six hours later his counts had dropped down to 50k, and then 33k six hours after that. It was Jax's delivery all over again, with one thing majorly different. We were in control. I decided after Jax was born that if we ever had another child I was going to be armed with as much information as I could possibly get my hands on. I absolutely refused to be in the dark again. So with the help of hematology we came into Maddox's birth with a game plan. If his counts were to fall below 50k but above 30k they would administer IVIG (the same infusions I had been receiving all the way through the pregnancy) and test again an hour after the infusion was complete (infusions take about 5-6 hours). Because Jax only needed one round of IVIG our hopes were that Maddox would only require the same. If Maddox's counts dropped below 30k they would transfuse with the donated platelets we had standing by. My sincere gratitude to the three donors that gave their platelets for my son... Thank God they weren't needed! After one round of IVIG Maddox’s platelets climbed back up to what they were at birth. They dipped again a few hours later, but climbed steadily from there on out. By our third day in the hospital he was released to our room and was able to spend the remainder of our stay with us. We were all released after five long days in the hospital.

What I didn’t realize was during the entire pregnancy it was as though I was holding my breath, just waiting for something to go wrong. Once it was over I could breath. Best of all I could enjoy this little person we had created. Sometimes I can't help but wonder what I did to deserve one miracle, let alone two... but I have a feeling God has great plans for these boys. I'm so blessed to be their mother; I truly would walk through fire for them.

21st and last

I wanted to try to squeeze in one final entry before Wednesday arrives and all of the craziness begins... What better time than during my 21st and final IVIG infusion?

It's hard to even know what to say to sum up the last eight months. It's true you never know you're own strength until strength becomes your only option. NAIT is a disorder that you can't expect other people to sympathize with, or even come close to understanding (with the exception of my fellow NAIT mommies of course!). You give up trying to explain it and just push your way through it. I managed to keep myself distracted from the what-ifs and focused on a really LONG and difficult semester, and I honestly think my schoolwork kept me from losing my mind from worry. With the help of a team of AMAZING doctors and nurses I have never felt like there was something we could be doing to help protect Maddox, but weren't. I am completely at peace with every decision we have made along the way, and now literally all there is to do is wait. I am sitting through my very last appointment, which is a pretty amazing feeling when you consider that the last eight months have been filled with at least two appointment per week, usually more. I miss my family, I miss my weekends, I miss normalcy, and I miss being able to see my toes!
I get a lot of comments like "well, you knew what you were getting into when you started all of this." This is completely true, I did know. But that doesn't make it any easier. I knew the risks, and I knew treatment would be miserable. I also knew that our little family wasn't complete with only Jax. I didn't know that doctors appointments would take over my life, or that I would be pricking my finger four times a day to watch my blood sugar as a result of massive doses of steroids. I never expected to feel so alone in all of this. I thought there would be a better support system around me... I never imagined my two year old could get so excited about the possibility of a brother, or that he would tell me he wanted to be a "baby doctor" when he grows up. He has been such a trooper tagging along to appointment after appointment, and has been nothing but excited about every one. Between Nolan's constant support and Jax's positivity and excitement I can't help but try to match their attitudes (although some days are better than others). 

And now we wait. And count down the days (four now) until my surgery. 
Dr. El-Sayed feels pretty confident that the baby will have high platelet counts, and it seems pretty likely that he will be developed enough to breath on his own. We spent the last week getting three platelet donors lined up to stagger their donations before and after the baby is born. Since the donations are only good for 48 hours it's important to have people lined up and ready, just in case Maddox should need a transfusion. And since my antibodies are so high in his body, it's pretty likely that he would chew through the first transfusion and need another, and possibly another after that. The best case scenario, what we have been working so hard towards, is that he will come out screaming, breathing, healthy, and with platelet counts above 100k. I would love to have him be healthy and able to room with Nolan and I. Because of the way Jax came into the world, I can't even imagine another scenario besides having to trek back and forth from the NICU, worried sick about my child, and feeling completely confused and helpless. This time around I'm armed with as much if not more information than the doctors. I know this disorder frontwards and backwards, and I refuse to feel as lost as I did that day again. Fear has turned to determination at this point. 

Both hospitals (Stanford, who has been handling my treatment, and Sequoia where I will give birth) are coordinated with each other. All of the doctors, pediatricians, hematologists and the blood bank are up to speed and have copies of my chart, and the OR is scheduled. It's go time 8-)

30 Days and Counting!

Just a little update...
Today we officially scheduled the date of our c-section. Maddox will be born May 19th, as a late anniversary present for Nolan and I. I will be 36 1/2 weeks at that point, which means Maddox will be about a month premature. Of course we are concerned about the risks that come with this, but they are far less concerning than what could happen if he stays inside me much longer. Prematurity issues can be dealt with outside of the womb, but the longer we leave him in the greater the risk is that my body will cause him to hemorrhage in the brain (which is not something that can be repaired). 

So at this point we are asking for everyone's prayers. Maddox needs to continue to fight my body's attack and stay healthy for another four weeks, and in the mean time grow as big and strong as possible. We are hoping his lungs will be mature, his platelet counts will be high, and he won't have to stay in the NICU for long. Even though this is the home stretch, it's also the most dangerous time in my pregnancy. I'm relieved to be coming to the end of this pregnancy, but absolutely terrified about what may happen. I truly need everyone's support around me for the next month!

Thanks to everyone that has been giving their words of encouragement and endless support. We love you!
~Tracy

30 Weeks (almost)!!

I've had a couple of people ask me for updates, so I thought I would try to write a quick one while Jax is napping 8-)

I will be 30 weeks pregnant this weekend (hooray!), and hitting the home stretch so to speak. NAIT is sort of backwards from "normal" pregnancy complications in that the further along you get, the greater the risk to the baby. There is less room for him, and for whatever reason during the last trimester my body really steps up it's attack on the baby. SO, on the one hand I am relieved that I am getting to the end, and every day closer that I can still feel him moving is a relief. But on the other hand it's hard to fight off that fear of losing him so close to the end. There's a lot of anxiety that I am trying pretty hard to distract myself from at this point. School is helping me stay occupied, and I am spending my spring break redecorating the boy's room (I'll post pictures soon). 

Our schedules are CRAZY these days. I feel like I spend too much time away from Jax and Nolan, and not nearly enough time enjoying the last months of being a family of three. I knew this would be a crazy pregnancy, but I never imagined it could be this, well, busy. We joke that I need my own suite at the hospital at this point! The worst part is that hospital policy does not allow me to take Jax to most of my appointments, so he ends up being left with a sitter, friend, or Nolan has to take time off work. Every appointment is a scramble to find someone reliable that can watch him for a few hours.
Here's a little about my treatment at this point:

Sundays- IVIG (takes about 6 hours on average)
Tuesdays/Thursdays- OB appointment with my MFM
Thursdays- Non-stress test to watch the babies stress level (not mine!)
Once a month- Ultrasound to check for hemorrhaging in the babies brain or elsewhere

I take 9 pills a day, 15 on Sundays when I have IVIG. The latest addition to my cocktail is Prednisone, a steroid that will help protect the baby from me. Unfortunately a common side effect of Prednisone is the onset of gestational diabetes, so my doctor has me checking my glucose levels (with a meter) four times a day to watch for signs that my body isn't handling sugars and carbs the way it should. I feel like an old lady! But on the bright side so far my levels have stayed pretty normal, so there hasn't been any need to tweak my diet or add insulin.

Anyway, that's the boring medical stuff. On to the fun stuff! 
My belly is getting big, and Maddox is bouncing around and boxing with my bladder all day long 8-) I keep asking the doctors to guess about a size, but they won't even humor me! They're all so serious all the time! The doctor that delivered Jax guessed pretty early on, and she was right on the nose. I can't wait to see if this little monster is as big as Jax was!

In a couple more weeks we will get to pick the date for our c-section, and then it will really just be down to the waiting. We finally settled on a middle name, so there's really not much left to do. Can't wait to go home for a few days and enjoy my baby shower with my sister who's not too far behind me with her second boy as well! It will be so nice to see my family and friends before all the chaos breaks loose and we welcome Maddox Ian into the world 8-)
~Tracy

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 :)