Updates! Double Treatments, FBS & C-Sections-- Oh My!

I've been meaning to write this post for a few weeks now, but we have been so busy!!  Since I last updated you all, we've been on all sorts of summer adventures including the beach, carnivals, pool days, zoo fun, and lots of outside play time at the park. I've never been this pregnant in the summer, so these adventures are a lot more exhausting than I expected them to be.  My waddle is in full force, and my Mom's pool and all places with air conditioning are my best friends.  Props to all you Mommas who have experienced your third trimester in the Summer.  It's definitely easier to be full-on pregnant in the Winter, in my opinion.

 

We also had a small sprinkle with close friends and family, and their generosity and excitement for our little girl really touched our hearts. Sometimes with your 3rd baby, it can feel like people aren't as excited for your family, or kind of forget that you even are pregnant.  We are equally excited for this baby girl as we have been for our first two, so it was really nice to celebrate her pending arrival with others who are just as excited for us. Something that hit me harder than I thought it would was the absence of my Grandma. She loved my girls so much, and would have loved that I was having another girl.  Not having her at the gender reveal to cry tears of joy that it was a girl, or at our sprinkle to share in our excitement was something that I had to quietly deal with.  It just breaks my heart that this little girl in my belly will never know the unconditional love of my Grandma. I know she is looking down, happy as can be for us, bragging to all her friends up there... and I can take comfort in that.  She is and always will be our girls' guardian angel.

Well, after finally adjusting to my single dose IVIG treatments and feeling as though my side effects were low, and finally feeling like we were in a good rhythm, they DOUBLED them. YAY (that's a sarcastic YAY)!!! This is a different plan from my pregnancy with Mackenzie, but since her platelet counts were so low with single dose IVIG, the thinking is that doubling the dose of IVIG will hopefully protect this baby's platelets more effectively. The fact is, they don't know if it will work, and in fact they still don't know why the single dose didn't work for Mackenzie's platelet count.  So, it's kind of just, let's try this and see what happens, which is super scary.  As long as it prevents brain/belly bleeds it is considered by all a success, so while high platelet counts are great, no bleeds is the ultimate goal!

The double treatments were a pain in the butt to get approved, and still weren't approved the Friday before my first Sunday infusion. The home-infusion center I work with was having a really hard time getting confirmation from the doctor assigned to my case.  The doctor listed on the orders was not my doctor, so after lots of back and forth between everyone I had to call my doctor, and she took care of it for us.  Then we ran into another issue because the pharmacist from the home-infusion company told me that I couldn't have both bags of IVIG in one day, which was in direct conflict with what my doctor had told me.  I was told to try it in one day and see how I felt and if I could not handle it, they would split it into 2 days.  So the run-around of phone calls began again, until finally they agreed to send me both bags of my medicine with a stern warning from the pharmacist that I could have severe side effects, including a fluid overload which could cause thrombocytopenia.  So, that was comforting.

 

The actual infusion itself is really long, anywhere from 10-12 hours depending on the vein used. We really love our nurse, so while the length of the infusion is annoying she is so sweet and fun to be around so that makes things better. For my first double infusion she got the girls a bubble machine to pass some of the time, and the girls LOVED it.  She is always willing to go outside, or play with the girls or clean up their messes and I'm so grateful for her.  It has been increasingly more difficult to get a good vein at this point after over 20 infusions. My veins are flattening out, changing shape, and rolling away.  The past few infusions I was stuck multiple times, usually the 3rd time being the charm. By the time we find a good, plump vein it's usually in an uncomfortable spot that kinks a lot, or hurts throughout the infusion.  I just suck it up and try my best not to complain because there isn't usually another option and we need to get the infusion started.  I've also had my IV/vein blown out accidentally (thanks Aaron!), or they start to leak and then my IV needs to be changed in the middle of an infusion also. I only have 2 more infusions, so here's to hoping my veins will cooperate. 

 The side effects have me back at square one, where I pretty much feel like crap from Sunday-Wednesday.  My headaches are barely manageable during the 24 hours following the infusion, and try to linger for multiple days.  I'm getting flu-like symptoms for at least a day, sometimes two and all of this is in addition to the normal aches and pains of being 8.5 months pregnant. Even with all of that I still really enjoy being pregnant.  It will never, ever get old to feel life moving inside of you. It's such an amazing thing to experience.

I know I've said it before, but I really try my best not to let it affect my life as much as I can.  I try my best not to complain, I still go outside, go to the pool, and play monsters and hide and seek with my girls.  They understand that Mommy's medicine for the baby makes me feel sick, and they are so sweet about it-- especially Izzie. She is always telling me "It's okay Mommy... you're okay," accompanied by lots of cuddles and kisses.  And thank God for Aaron, because he makes sure the girls are quiet so I can rest or plays with them when I just can't.  He is the best Daddy, and husband and I definitely could not make it through all of this without him. But when I'm feeling exhausted, or sick I also feel guilty for not being the best I can be for the girls, and even more guilty that I may be upsetting them because I'm different than normal Mommy. So for the most part, I just push through because I don't want to miss out on making memories with them, and I don't want them to feel that I don't want to play with them.

 

So up next for us is our Fetal Blood Sampling this Friday. It's the same procedure that I had with Mackenzie to check her platelet count, and it was literally the worst experience of my life.  I ended up having extreme back labor contractions throughout the procedure, and it brought on real labor and then a placenta abruption, followed by an emergency C-section for which I was knocked out. So to say that I'm anxious for this time around is an extreme understatement. We are taking some extra precautions this time around, including an epidural for me in case I start contracting again. I am also getting steroid shots beforehand to help mature baby girl's lungs.  I'll be observed and monitored closely after the procedure with an option to stay the night just to be safe.  During the procedure, my doctor will insert a very long needle into the baby's main vein that runs through the liver, and extract a blood sample. The sample will literally be run over to the lab and the platelet results will be ready pretty much instantly.  During the platelet reading, the needle will stay in my stomach, in the baby's vein and matched platelets will be on hand to infuse in case her platelet count is low. If her platelet count is normal, then I continue with home IVIG treatments until my planned C-section in 2 weeks.  If the platelets are low, I will reschedule a C-section for within 1 week because that's about how long the matched platelets would last in baby girl's blood after an infusion.  Whatever the outcome of the sampling is, we are just praying that our baby girl is born healthy, with NO BLEEDS, however/whenever that happens.

As always, we feel so blessed to have so many people supporting our family, and following our journey.  We appreciate all the thoughts, well wishes, and prayers that are said for us. Thank you all from the bottom of our hearts. I will try to update the blog again after our procedure on Friday.