Introducing Lola Day Wilson!

 After the birth of each of our children I have written the story of how they came into the world. I do this for a lot of reasons, but mostly so that the memories will not fade for me, and so that each of them can read about their birth when they're grown. With that said, I give you little miss Lola's birth story:

Because my pregnancies are so high risk, I don't get the experience of guessing when I'll go into labor, or worrying about my water breaking in public. Our babies are scheduled months in advance and are born via c-section at 36 weeks gestation to avoid head trauma. We have frequent ultrasounds and non-stress tests throughout our pregnancies, so by the time the baby arrives he or she is no stranger. Because of this, Nolan and I decided not to find out the sex of our third baby, we wanted to hold on to one surprise, one little thing we could have some control over. This decision of course drove everyone around us completely crazy, which if I'm being honest, kind of added to the fun. Everywhere I went strangers informed me that I was having a boy based of course on some strange old wives tale. Neither Nolan or I could imagine anything else, and truly had no intuition either way.

The nature of NAIT (Neonatal Alloimmune Thrombocytopenia) is that it gets more severe with each pregnancy. Being my third pregnancy I was very closely monitored, and our treatment plan was very aggressive and proactive. I began IVIG (intravenus immune globulin) twice a week at 16 weeks pregnant, each infusion took approximately 6 hours. I saw my OB every two weeks from the start, had an ultrasound every four weeks, a non-stress test every week, and infusions twice a week. All of this equals to more time at the hospital than at home with my family.

At 32 weeks pregnant I was put on a very high daily dose of Prednisone (a steroid given to weaken my bodies immune defense against the baby). What was already an incredibly difficult pregnancy for me physically was kicked into high gear during that last month. My body began to reject all of the intervention, which ironically enough, just led to more intervention. The IVIG was causing me to be severely anaemic and my platelet levels to drop. The Prednisone was making my blood sugar go crazy, and despite my best efforts to control it with diet and exercise I was put on insulin. My morning routine involved a cup of coffee, a finger prick, 15 pills, and stabbing myself to inject my morning insulin dose. On weekends this drug cocktail was followed up with six hours of IVIG. I was literally just trying to hang on until the end, but it felt like at every turn my body was shutting down. I was physically feeling worse every day.

At 35 weeks pregnant my best friend flew in from Texas to have a fun filled week before my c-section. Unfortunately a few hours after picking her up from the airport my doctor called with my most recent blood test results. My red cells and platelets had dropped again, and he wanted me to check into labor and delivery for the night, with the possibility of delivering earlier than planned. Kuddos to Annie for rolling with the punches. The girl had just gotten off of a six hour flight, was adjusting to a two hour time change, and still came with me to the hospital and slept in an awful recliner next to my bed so that Nolan could stay at home with Jax and Maddox (who were both sick). What are best friends for, right?  I was eventually released, with the plan of sticking to our original delivery date. However, throughout the next few days my c-section date bounced around, moving up because my levels continued to drop, and then moving back to the original date because they couldn't get ahold of blood for me in time for an earlier surgery. Now not only were we concerned about the babie's health and wellbeing, but we were concerned about mine as well. Because my levels were so low, there was a real possibility that I may need a blood transfusion after surgery. Stressful does not even begin to describe that last week. In fact I don't even know how to articulate how I was feeling in those last days, aside from slightly crazy, and incredibly focused.

Thursday (our originally scheduled c-section day) finally rolled around, and Nolan and I said our goodbyes to the boys and took off for the hospital. I was prepped for surgery, and before I knew it we were in the operating room, I was numbed, and the curtain was up. This surgery was so much more stressful than my c-section with Maddox. My doctor was tense, the NICU team was standing in the corner ready to rush the baby to the nursery, Nolan was nervous, and I was struggling to stay in control and focused with an ice chest marked "human blood" sitting next to me. Its a surreal feeling to be sitting next to blood bags that are marked for you in case things should go poorly.

After what seemed like an eternity the nurse was instructing Nolan to stand up and look over the curtain, our baby was being born. I watched him stand, smile as everyone commented on how much hair the baby had, and then suddenly look completely shocked and confused.
 "It's a GIRL?!" He yelled, like it was a question rather than an announcement. To which I essentially began to hyperventilate.

 They brought Lola to us, and I was able to hold her and kiss her before they took her to the NICU. Nolan followed, and I stayed to be sewn up. As my doctor was finishing putting me back together, he told me that he had never seen anything like Lola's birth. My uterus was apparently so paper thin where the incision from my previous c-section was, that he could actually see Lola looking up at him before he cut. Not only had my body been rejecting all treatments, but I was also within weeks of rupturing my uterus.

Within a few hours we had results from Lola's first CBC. Her platelet count was 147k upon birth, just 3k below the range of normal. This was so much better than anyone anticipated, including our doctor. 47k would have been what we expected, but 147k was purely a miracle. For a disorder that gets worse with each pregnancy, ours got better, it defied logic. In fact, after one round of IVIG Lola was doing so well that we were all released a full day early.

Now, two weeks later, we are all completely smitten with little Lola. She has everyone wrapped around her tiny finger, including her big brothers. She does indeed have a crazy head of black hair, and was born with frosted tips and distinct highlights. It's as though she spent time at the salon before she was born, rather than balled up in my thinning uterus. We feel so blessed and relieved to be out the other side of this ordeal, and to have our beautiful baby girl. Our family truly feels complete, in ways I didn't think it could. I wonder every day what we did to deserve to be so blessed, and still can't come up with an answer. We are the parents of three strong, beautiful, loving kiddos who had to fight harder than any baby should to be born healthy.

After the craziness and stress of the last eight months, we're ready to start living again, and being free to enjoy our little miracles.

Last picture as a family of four. HHeadedto the hospital!

My best friend Annie and I. I do believe my belly is trying to eat her alive.

"I can't believe it's a girl!"

Lola Receiving IVIG in the NICU

Me, looking a bit like a man, but so in love with my daughter!

First bath! Gotta love the look on her face!

Jax holding his sister for the first time. Believe it or not, he adores her!

Not that you can tell by this picture, but Maddox is completely in love too.

The Power of a Prego - and a Terrible Dose of Reality

My friend Tegan, who just so happens to be an AMAZING party planner, offered to throw a baby shower/brunch for me next weekend. I am so excited I can hardly stand it! I am so happy and lucky to have met such an awesome friend and developed such a cool relationship with her over the last few years. It doesn't hurt that our husbands grew up together either :-)

We decided to hold the brunch at Casa de Wilson, which means that my crazy pregnant self has spent the last month in full blown DIY mode. I finally finished reupholstering my hidious old Craigslist armchair. I painted the boys' bunk bed, not to mention the walls in their bedroom, and four new bookshelves. I finally got their toys under control with a new modular shelf turned on it's side (for the final touch I even upholstered a cushion for the top to make a bench). I pestered Nolan until he gave in and built my pallet bookshelves for our bedroom. It's been a busy few weeks... I was feeling like a pregnant Wonder Woman, until yesterday. It hit me. I feel like I can barely stand up now! I went shopping last night without the kiddos, and felt the need to get a shopping cart just for the sheer ability to lean on it while I walked waddled. I think I need a Rascal Scooter. I wish someone would inform my body that all of this hip spreading isn't necessary. I'm having a c-section for crying out loud, nothing is going to be passing through those things! Anyway, although I limped through three stores trying to find something as simple as wooden numbers (to finish up another DIY project) without success, I was rewarded with these beauties:

I have to remember I have nothing to complain about. In the grand scheme of things I really don't, and that's easy to forget sometimes. This week I was given a heartbreaking reminder of just how bad things could be. I am part of a worldwide support group for NAIT effected families. This group was started several years ago by one desperate and determined mama, searching for answers, and for anyone (just one person) out there who was suffering through what she was trying to navigate. Stephanie's son had been born to term with a bilateral brain hemmorahge (which means his brain bled in both hemospheres) due to a rare disorder, then almost completely unheard of... NAIT. Her first baby, after a normal pregnancy, was not expected to live. Chris is now 12 (or 13 now?) years old, and inspires us all every single day. The support group that Stephanie began so many years ago, now has hundreds and hundreds of members world wide. We are sisters bonded by something terrible and devistating, and we lean on each other every day in ways outsiders can't really understand (hard as they may try). We fight for awareness, for research, and for prenatal screening. We have accomplished more in the last few years than we really hoped possible. This is why when a tragedy effects one of us (the way it has this week), we all feel it. We all cry. We all pray. We all want to run to the side of the mama who is suffering and just be there for her.

This week a fellow NAIT mamma lost her baby at 20 weeks gestation. This was her fourth child, and her second NAIT effected pregnancy. She was receiving treatment just as I do every week. This mama had to labor and deliver her baby girl, knowing full well that she wasn't alive. NAIT had stollen her. The treatments had not worked. It is a fear that we all share, and yet we can't help her. Not really. As NAIT mamas we put all of our faith into a treatment plan that is ever changing, under researched,  and flat out isn't a cure. What choice do we have but to trust it? The truth is it only works about 70% of the time. By "works" I only mean that your baby has made it out unscathed, not that his/her platelet level is normal. There is still NICU time for most, involving platelet transfusions and/or IVIG. 

My point is, it could be so much worse. As I sit through my 31st infusion, butt numb and bored out of my mind, I am thankful that my baby and I have made it this far. These last four weeks cannot pass fast enough. They are the riskiest, and therefore the most nerve wracking. I am now on a course of Prednisone (steroids) that will take me through my final month, and will be one more barrier between my killer immune system and the defensless baby It's fighting.

I pray for my fellow NAIT mama, that she and her family would feel a peace and comfort that suprasses all understanding. My heart aches for her as she suffers through something we all hold our breathes and hope against. This is the reality of NAIT.

"Just another manic..." Wednesday?

Life with two kiddos is crazy, and I'm beginning to have minor anxiety attacks thinking about what a third will do to our delicate balance. Turns out in six weeks I will find out! We finally have a delivery date for baby #3- he or she will join us on February 28th, just six days before Jax's fifth birthday.
Yup, fifth. As in five years old. As in I just filled out his kindergarten registration forms. I'm sorry, what the what?! When did this happen??? I'm just not sure I'm alright with this.
On the other hand this means that he'll be at school all day, Maddox will start preschool as soon as he gets off of his lazy butt and potty trains, and then it will be just me and baby #3 for most of the day. Hmmm...
I digress. For now we're playing the waiting game. Well, Nolan is waiting, I'm running around like a crazy pregnant chicken with it's head cut off. Nesting? Not exactly. More like reupholstering and arm chair, painting rooms, building furniture and cornices. This is how an interior designer nests. Have I washed any clothes? Nope. Built the crib? No way. Bought a car seat? Negative. But don't worry, the important things will be done, I will have a freshly recovered armchair.
In the meantime, I have twelve infusions left (yay!), six non-stress tests, one ultrasound, two glucose tests, and four weeks of Prednison to consume. One meeting with neonatology and the bigwigs, a hospital tour, and a hospital bag to stock. Oh, and somewhere in there I'll need to donate my own platelets for the baby, in case he/she needs a transfusion (which is a good possibity) after birth. This is the most risky part of the pregnancy because there is less room for the baby (and more opportunity for "trauma") my body is amping up it's attack on the little one (diminishing it's platelets at a faster rate). So, bottom line, we hold our breath, hope my infusions are doing their job, and wait. Baby will be 36 weeks and four days old when it's born.

Baby Baby

Just a quick update-
Baby he/she is doing great! We had our fourth (or fifth? I'm losing count) ultrasound today to check the baby's brain for hemorrhages, and thankfully the scan was perfect :-)  I hold my breath at every ultrasound until they show me that the brain is clear of bleeds, and then I can enjoy looking at his or her cute little face :-) Actually, that's a lie. Really we just look at his/her elbows and hollow little eyes glaring at us.
Every ultrasound up until this point has gone like this: as soon as the wand touches my stomach baby turns, looks right at the camera, punches the wand, throws an arm over it's face, tucks it's chin to it's chest, and sinks back toward my spine. Literally we had NO profile pictures, no face pictures, nothing! At one scan it actually took them 20 minutes to confirm that our child had lips. No joke! Today however, we were able to catch the not so little bean off guard and snag a few cute pics before he/she started trying to hide. Let's face it, there's not much room left to disappear in!
Let me introduce baby #3, weighing in at about 3.5lbs, 29 weeks but measuring almost 31 weeks (surprise surprise):

That is Maddox's nose for sure!

   

What's your guess, boy or girl?

Christmas Time at the Wilson's!

Have I ever mentioned how much I LOVE Christmas? I am THAT person... you know, the one that busts out every last decoration the day after Thanksgiving is over. By December 3rd it looks like Santa and his reindeer threw up all over my living room. This year, we get to take the decorations to a whole new level because we are living in a house instead of an apartment. That means we have trees, a yard, and a roof to slather in Christmas joy :-)
I'm sure Nolan is thrilled by the prospect of spending all day on the roof hanging lights for his crazy pregnant wife. It truly is the most wonderful time of the year ;)

Two things to know about us:
In this house we celebrate "Christmas Adam (a date also know as December 23rd, which I invented as a child. My question was, if Eve get's her own day, why doesn't Adam? And right then and there Christmas Adam was born.)."

We believe in Christmas miracles. Actually, we believe in these year round... we even call them Christmas miracles if they happen to pop up in July.

And speaking of miracles-

25 (yes only 25) week belly. Pay no attention to the mess behind the belly... still unpacking.

Digging for ornaornaments

This is the first year they have had the attention span to decorate the whole tree!

We only suffered one ornament casualty.

"We love you this much mommy!"

"And we miss you this much!" - via email while I was at an infusion over the weekend.

And finally, I just have to share something I'm sure you have all seen... but just in case you haven't watch this (show your kiddos, they'll LOVE it!):

Christmas Lights Gone Wild!

Back from the dead

It's been a long time since I have posted... Here's why:

You see all of those "possible side effects" listed? Imagine you have all of those, at the same time, while being pregnant and responsible for a four year old and two year old little boy. Imagine you're also in the middle of moving. And while you're at it, throw in a sick two year old, and a compromised immune system. Now imagine that rather than getting a little better each day, you're getting a little worse, every week getting two fresh doses of the meds that are producing this misery to begin with. That was me, for a month.

It's been a rough month, there's just no sugar coating it. IVIG felt like it was very near killing me, and left my immune system completely depleted. After six infusions my body was beginning to shut down and quite honestly I had given up fighting it. Everything hurt. My skin, my eyes, every muscle in my body. I couldn't regulate my body temperature and was taking several baths a day to keep warm. I couldn't hold my head up, couldn't keep my eyes open, my breathing was irregular, I was constantly sick to my stomach, head pounding, and running a fever. There were several days when I almost drug my entire family to the ER convinced something more then just side effects from my meds was to blame. The final straw was when the flu hit out house... it took down Maddox first, then me (which wasn't tough considering my immune system was pretty much toast to begin with), then Jax, then Nolan. By the time I showed up for my fourth week of infusions it was pretty tough to hide how much pain I was in. The nurses called my doctor, and my wonderful doctor sent me packing back home. Thankfully I was still so early in my pregnancy that the chances of a bleed in the baby because of skipping one weekend of treatments were pretty tiny. My body needed to regain strength, and another two days of IVIG would have just made things worse.
After a bit of research I discovered that the hospital had switched their default IVIG brand since the time that I was pregnant with Maddox. I had previously received Previgin, and had never had a single side effect from the dosage. Now I was on Gammunex, at double the dosage from my last pregnancy. The question was, is the brand causing my body to react this way, or is it the dosage? Being that we can't help the dosage amount, the logical thing to me seemed to be to try switching back to Previgin.

I am now four weeks into treatments with Previgen, and aside from an occasional headache I feel FINE. Better than fine in comparison! It feels so good to feel relatively normal again!!! Now it's time to focus on getting through the next three months :-)

We had a wonderful Thanksgiving, as I hope you all did. We were even able to squeeze in a date night, and some family photos!!

Poison "Milk"

So the boy's and I are having daddy day while Tracy is at the doctor. We went to ACE Hardware and bought some ammonia for our fish tank. I picked up the bottle and there was a "Danger-Poison" label with the skull and cross bones stuck to it. I thought this would be a good time to teach the boy's about poison.

As soon as I said the word "poison," Jax interrupts me and says "like camping and poison milk!"
"I think you mean Poison Oak."
"NO Daddy, Poison Milk!"
 Around and around we went until Jax got fed up and said,
"NO! I will take the poison oak out of your voice and you will say poison milk"

I really hope I don't get poison MILK!!!
Nolan