IVIG 11

Last week I did some searching and found a few other blogs about others who are doing IVIG.  It was nice to read about their stories and also hear I am not the only one who deals with these headaches...One blog even pointed out how much water she drinks to avoid headaches and even counted up how much IVIG has been pumped into her system thus far....I don't have the patience for that....It's a lot. A lot of water, and  a lot of IVIG.

This week I got some homemade vanilla extract from one of the nurses (so fun!) and was able to catch up with other nurses who stopped in to say hi.  I can't wait to use that vanilla!  Thank you Joyce!

I am going to miss the staff here.  I feel like we are friends that get to catch up every week...I know about their kids, they all know our story and really, it is just fun to hear about their lives.

Today the Klenke's, Steve and Abby came to visit and brought me Chicken King for dinner!  So delicious!  I love having visitors!  It was nice to show my family off to everyone.

Tonight I even met someone who has a niece at the AFA!  She is a senior this year...Crazy small world!

Tonight was a tough night on the L&D floor...I don't know everything or really anything that happened tonight, and don't need to.  I just know it was a tough night for the nurses and some of the patients.  It's so heavy....Makes me realize I could never be a nurse in L&D and respect and appreciate those who do work here even more.

Only one more week left here at St. Joes...That makes me so sad.  They are wonderful here. Fabulous really.  They make my day all the time.

IVIG #12

My last IVIG at St.. Joes....I am trying to enjoy every minute of this even though it is Christmas night...I love that my nurses are so helpful and on top of it.  I have Sumer again, she was one of my nurses at the beginning of all of this and understands my desire to get out of here ASAP.

The best part of tonight was having the Klenke's bring me dinner again.  We got Chinese food because, really, what else is open on Christmas day?  Chinese was delicious, Abby loved it and ate almost all of mine. But, sharing dinner with her isn't a hardship...especially when I get to cuddle her in her Christmas PJ's.  

One of my old nurses left me a note in my bag full of IVIG fluid....She knew today was my last day and it was super sweet of Joyce to think of me one last time.  I can't wait to send the nurses here a picture of our healthy baby girl!  

IVIG bottle #1 took forever today because the machine was messed up and air got in the line...Which is a pain in the butt and a troubleshooting nightmare.  However, Sumer fixed it and when we got it working, it all went really smooth.

Tomorrow Steve leaves for CO, I leave early on Thursday morning for the airport.  A move is really happening.  My fortune cookie tonight said, "You will soon be reunited with old friends...." Ironic?

Root beer and a letter from one of my favorite nurses....Merry Christmas!

At least I got special visitors on my Christmas IVIG!

Last time for glass bottles...They do plastic bags at Memorial.

Already missing my old "room" at St. Joes....

IVIG 10

Oh my gosh!  Where do I even begin this week....?

I walked in to decorations all over the room.  Had a wreath on the door, stocking hanging by the sign that says, "Welcome Carey" and snacks on the tray!  Sharon is my nurse and I immediately gave her a hug, she brought tears to my eyes.

So I don't forget all that was done, I am writing it out:

• Christmas music streaming through a computer
• Candy canes taped to the IV pole
• Snacks: cheese and crackers, veggies and ranch dip, chocolate, candies, coke (in mini cans - perfect for me to take home and get a coke fix when I really need it - I LOVE some coca-cola), ginger ale, water, ice, and a table cloth with mini trees 
• A smiley face on the bulletin board with thumb tacks and a santa hat.
• A wreath on the door.
• A welcome stocking on the door

I can't even believe how blessed I am to be at St. Joes.  They are amazing here, treat me like family.  There is no reason they have to do all this, but they do...Because that is how they are.  

Joyce even came to talk to me again.  Last time she was here we talked about making vanilla extract, she came in to give me an update on her vanilla extract adventures.  She even remembered to ask about one of my friends who I told her about last time...

I am hoping to post pictures when I get home.  The internet isn't fast enough here to upload pictures....I added some on facebook and instagram, I'll just post a link here, because if you follow me on those two things AND my blog, you will see that picture wayyyy too much!

https://www.facebook.com/photo.php?fbid=10100717394981804&set=a.710436976744.2270457.30313284&type=1&comment_id=169488725&notif_t=photo_comment

Thankful

Life has been stressful.  There is no doubt about that.  I am constantly fighting frustration, anger, and disappointment with our lives right now.

Our lives are great...wonderful!  We are so blessed, but knowing that the next three weeks are completely unknown is hard.  I get frustrated easily because I feel like our hands are often tied and we have no control.  This is the Lord teaching us though, He set us up in this situation and He has it under control.  After all, he created the universe.  The least I can do is trust him.

Today I was challenged to make a list of things I am thankful for...I am thankful for so much:

• Healthy babies: Abby is discharged from all her appointments.  When we were in the NICU we were told she would have "severe developmental delays"  Not so much now, huh? 
• Medical interventions: because of all of this, we can keep BK2 healthy and avoid issues after she is born.
• Melissa: she calls me and asks how I am doing even in the midst of craziness in her own life.  She even lets me complain (a lot of complaining)
• Katie: her texts make me smile every day.  Most make me laugh out loud.  It is pretty impressive when you can constantly send texts that make someone laugh out loud and you are 2000 miles away.
• Family: they have been there throughout this whole time.  They bring food, help pack, give us things we need, call for updates.  Really, it doesn't get much better than family.  We have loved living so close this past 18 months.
• Amber: she watches Abby every week while I do IVIG.
• Dr. Williams: the first Dr. I have met here that knows more about NAIT than I do.  She understands our concerns, questions, and asks questions when she needs to.  Just this week she called the NAIT specialist in Chicago to ask for advice with our situation.
• The Labor and Delivery floor at St. Joes: Every week they are super prepared for me and they make this as easy as possible for me.  When I forget food, they have some, when I come in, they are ready, they greet me by name.  I can't even begin to tell you how wonderful they are here.
• Levi and Iris: I get to watch them every week and I love taking care of those precious kiddos.  They are developing little personalities and I love watching them grow.
• Abby:  when she grabs my face and says, "mamaaaa" it doesn't get any better than that.
• Steve: He got Abby this morning, changed her diaper, and brought her into bed to cuddle with me before he left for school.

Really, our lives are WONDERFUL.  I need to remind myself of that when we are waiting on the military to make decisions for us.

Amnio results came back...

Well, our amniocentesis results came back and the baby has the "not good platelets"  

We are super bummed.
IVIG every week till the baby is born.
Steroids starting at 28 weeks
A c-section at 35 weeks.

I meet with the doctor tomorrow to talk more about what the upcoming weeks will look like.  Hoping to clarify exactly what we should expect....I know IVIG gives me headaches and I can handle that, however, I don't know what the steroids will do....

The good news is that this baby is monitored and the chances of her being born with the issues Abby had are very slim because of all these medical interventions.  Thank the Lord for medicine.  I'd much rather deal with some inconvenience in pregnancy to have a healthy baby at the end.

IVIG #9

Doing IVIG #9 now.  Deanna was my first nurse and she was awesome.  Got me in right away, started the IV and checked everything out to make sure I was all set.

We chatted a lot about life and I was amazed at how busy she is. It made me realize that even though I feel like our life is just crazy right now, everyone's life is crazy.  That is just life sometimes, especially before a holiday.

I now have 8.5 bottles to go through, so it takes a while.  I need to just be sure that I bring a lot to do on these days...

IVIG #8

Well, IVIG was doubled this week.

I was hoping that it would double in concentration, not in amount...It doubled in amount.  So now, I have about 8 bottles to go through instead of four.

The reasoning for this is that at 20 weeks, BK2 has more blood pumping through her body...More blood pumping means that if my blood mixes with hers, we could have an issue.  So we have more IVIG in my body to neutralize my antibodies.

Despite being stuck at the hospital for almost 6 hours, it wasn't bad.  They let me order dinner (delicious hospital food) and were very caring as I had a lot on my mind last Wednesday.

I now know to come to my treatments prepared....5 hours of time stuck in a bed is time I can use to get things done.