Tick Tock

We spent the day moving around furniture to make room for baby.  Actually, Adam did most of the work.  Having your pelvis move apart too soon means that your mobility is limited.  I mostly organized drawers, oiled some furniture, and supervised.  After finishing, though, I realized that this week would likely have brought the arrival of Avalon had things gone differently.  I have made peace with the loss, but milestones like the due date are still a little difficult.  Every kick and stretch that in my belly is reassures me that this time will be different.  Even though it seems surreal, we will have a baby here in about seven weeks.

I also spent a good portion of the week going to and from Mercy San Juan.  The incision on my neck (over the Jugular) opened up over the weekend, and was gaping by Monday.  Unfortunately, the interventional radiologist was out of the office one day, and running late the next.  Despite that, I ended up lucking out with no infection despite the wound coming open.  I also found out that I have a new allergy to Neosporin after applying a little to the dressing over the opened wound.  My neck started burning when I put the bandage on.  When I removed the bandage, I found blistered, angry skin in the shape of the gauze.  One more thing to add to the list of things I'm allergic to. (That includes most adhesive tape/bandages, sulfa drugs, tetanus vaccines, and now Neosporin.)

I am looking forward to the coming weeks.  We are hoping and praying for a calm, natural birth and recovery, and a healthy baby.  Wish us luck. :)

In the Jugular!

It has been a long time since I've been active here.  I really should work on that.  Today I had a procedure to install a port that will make blood draws and IVIG much easier. (And much less painful!)  During my November infusion, the infusion nurses told me that it was time to consider a port as soon as possible.  My veins were getting more difficult to access, and the damage to the veins made IV placement more painful.  By the end of my three day set of infusions, I would be bruised, very sore, and without any good IV sites left. Having a nurse look at my feet and shoulders for an IV site was all the convincing that I needed.

I thought that getting a port might be an issue because of the pregnancy.  When I told my neurologist's assistant that a port had been recommended by the nurses, the assistant said "okay, let's get you scheduled." Considering that it wasn't really urgent, it was the holiday season, and that neurology doesn't normally order ports, things moved pretty quickly.  I had a surgery date scheduled, and we went from there. Well-meaning friends and family have asked if it was a good idea, if it was safe, or if it could wait.  Every medical professional I have spoken to about the port said that it couldn't wait.  They need good access to my veins, especially with me being pregnant. The risks of the procedure are outweighed by the benefits of having easy access to my veins for treatment and in case of emergencies.

The thought of having a surgical site near my face made me a little nervous.  I am claustrophobic, and the idea of drapes over my face freaked me out.  Luckily, I would be given conscious sedation to help with the nerves.  Since I don't need chemo or radiation (the most common reason for a port), the radiologist chose a Vaxcel port with valve by Navilyst.  I was draped, scrubbed, and had a local anesthetic injected into my chest and around the Jugular vein.  The interventional radiologist made an incision above the Jugular, and in my chest wall.  The catheter was run through the Internal Jugular, and down towards my heart. Through the incision in my chest, they made a pocket and sewed the port in place.  The port was connected to the catheter, the catheter was flushed to test function, and the incisions were closed up.  Unfortunately, my muscle tissue is very tough from having Stiff Person Syndrome, so I kept feeling pinching as the radiologist worked.  They did their best to numb me and finish up as quickly as possible.

Vaxcel Port Positioning

After they got a chest x-ray to verify placement (with my belly shielded well), I was brought back into the nurse's office to meet up with Adam.  The radiology nurse gave me some grape juice to get my blood sugar up, and talked with us about caring for the incisions and port.  I'll have to have the port flushed when I go in for my infusions every five weeks, or once every four weeks if it isn't being used.  I'm covered up with gauze and Tegaderm, so I haven't seen what things look like yet.  I'm interested to see how much of the port is visible under the skin.  I was told to expect some pretty colorful bruising for awhile.  Oh, and I can't shower for at least two days. After that, I'm supposed to cover the Tegaderm with plastic wrap until the incision heals.  If anyone can figure that out logistically, please let me know.  I have no clue how I could manage to pull that off. Sounds like sponge baths and a trip to the hairdresser for a wash or two.

Once we got out of the imaging center, it was time for food.  Fasting for that long stinks normally, but it is rough being pregnant.  We ended up at Fuddruckers to feast on what had to have been the best burger ever.  I'm currently propped up in bed, watching crummy daytime television.  So far the lower dose of Vicodin is making the pain manageable.  I'm crossing my fingers and praying that it is tolerable tomorrow, when the bruising should show up. 

All in all, I'm happy.  Dealing with literal pain in the neck for a few days is better than dealing with stick after stick in my hands.  (And soon, who knows where else.) 

Mommy Time

This morning I woke up to what felt like two hot rocks pushing on me.  When Adam came in the room, I realized those hot rocks were two not-so-little-anymore feet.  Emma woke up during the storm last night, came in the room, and said "I need mommy time."  She curled up next to me, and was out.  Adam moved her out of the room at some point, and she came back in about a half hour later for more "mommy time."  It was all fine until she tried to push me out of the bed during her sleep. 

The night before, she woke up hungry.  Then she thought her pillow was a skeleton, and came out of her room scared as can be.  It took awhile to for her to understand that the reason her tummy hurt was that she was hungry.  Then it took forever to figure out what she wanted to eat.  After that, she still had to calm down from the fear of her pillow shape-shifting and coming to get her.  She keeps asking to go back to the Halloween store, but I think we might just have to hold off on that for awhile. 

The little one is proving to be just as active as his big sister was while she was baking.  Emma thinks it is awesome to talk to my belly.  It is cute as heck, but it wakes up the baby at the precise time that I'd like to be getting to bed.  He moves, and dances, and wiggles around for what seems like forever.  It is cute and reassuring, but I definitely can't sleep through it.  I can't wait until she can feel him kick.  She'll enjoy that. :)

Sweet, sweet relief!

Yesterday I went to see the nurse practitioner over at Mercy.  She is the sweetest thing ever, and she's also the only nurse they have in the Sacramento area that can do an occipital nerve block.  Before getting started, she came in, gave me a big hug, and asked how my family was doing.  She spent a few minutes talking about my pregnancy and how that was going.  THEN we went into the headaches.  Now, how often do you get that kind of bedside manner?  I know that I'm a bit of a "special" case with such a rare condition, but I am SO happy to have caregivers that CARE.

The injections go into my scalp, near the occipital nerves.  Spasms and rigidity irritate the nerves, causing me to get raging migraines.  Right now we're trying to take the safest route, and injected steroids pose MUCH less risk than narcotic painkillers.  Only about 1/1000th of a dose (or less) crosses the placenta with steroids.  They've also been around for ages, so the safety in pregnancy is pretty certain.  Anyways...

The nurse injects a mix of Solumedrol (the steroid) and Lidocaine (an anesthetic) into the muscle that covers the occiput (the back of your noggin).  I get a muscle knot near that area, and it has been huge lately.  We chose to inject 2/3rds on that side, and the other 1/3rd on the other side. It actually hurts a lot less than you'd imagine.  It isn't any worse than a flu shot...if you have a good nurse.  She warned me that I might bruise a little more this time because of the extra blood pumping through my system.

I went home and iced my head, and looked forward to the sweet relief.  After having a migraine every single day for a month, anything was better than nothing.  I just realized that while my head is sore and bruised today, I haven't gotten a migraine.  Not even a hint of one!  As much as I hate having to take medication to feel better, I have to love that. 

The colors of the rainbow...so pretty...in the sky

This week has had the usual challenges.  The stiffness. The rigidity. The walking in wet cement feeling.  The headaches. All in all, this week actually hasn't been so bad.  We saw our little boy dancing around in my womb, and fell madly in love.  The little flutters I felt have turned in to little kicks.  Some of the fear of losing another little one is starting to melt away.  It isn't gone, but the pain isn't so fresh.

Despite her shock at discovering that she was having a brother, she has also fallen madly in love with him.  She has been talking to my belly, and giving me two kisses at night instead of one.  One kiss is plopped on my belly, and rubbed in with her hand.  That kiss, she tells me, is for the baby.  Once this week, she fell asleep with her head against my belly.  She told me that she wanted to cuddle with her brother.  My heart can't help but melt at how precious it all is.

Our sick little silkie is getting better, but slowly.  She has wry neck, a condition that causes their neck to flop over.  In many ways, it is similar to the issues I deal with in regards to my muscles.  If she is startled, she'll lock up and her neck flops to the side.  The episodes are getting shorted and less frequent, though.  She's still getting her vitamins twice a day, and gets to sun herself in front of the window during the day.  I pray that this little one continues to improve.  She's (or possibly he) is such a sweet little thing. (It is difficult to sex silkies before they are about ready to crow or pop out eggs, unfortunately.)

I check in with the nurse practitioner at the neurology office tomorrow.  I'll probably get my Solumedrol injections.  They were approved by the perinatologist, and they do help with these migraines.  Speaking of migraines...they have been constant the past month.  They are getting better, but very slowly.  I can't wait for the injections.  You heard me - I can't wait to have needles in my scalp!  We'll schedule my infusion at that time, as well.  I'll hopefully get the infusion around the second week of October. 

Before the infusion, I get to shoot some maternity pictures for my cousin.  It is an honor and a pleasure to take those pictures for her.  We're trying to decide on a park, and work around the rain next week.  I love the post-processing part of things, and can't wait.  :)

By the way, we saw the most beautiful rainbow in the sky above our backyard this past week. When I can, we take walks to see the sun setting over the fields.  Emma and I talk about what colors God used to paint the sky that night.  It doesn't get much better than that.