1/14/15

I've been meaning to write an update for a while, but whenever I have a free moment, I just want to sit and not use (what's left of;) my brain.  I'm trying to remember what all has happened since I last updated... The first thing that comes to mind is sickness. Whatever Nora had after we got back from NY hung on for forever.  She would start to get better and then get worse.  She was pretty sick on Thanksgiving with a high fever and throwing up, and you could tell she just felt miserable.  We took her in again and they still couldn't find anything, so we just had to wait it out.  As she was starting to get better, the other girls took turns being sick.  I was not surprised-the day before Christmas break started, I went to eat lunch with Lina at her school, and a girl at the table next to us threw up. Then Nora got sick again.  She didn't seem to feel too bad during the day, she just needed extra suctioning.  During the night, however, she would wake up crying and just want to be held, and needed tons of suctioning.  I hit a new record low for sleep!  There are times when I say that I didn't get any sleep, but really, I probably got a couple hours.  During this last cycle of sickness, there were way too many nights of literally no sleep.  Once the girls were better, I got sick. Shocker;) Thankfully, I didn't get sick until Christmas, so Evan was home to take care of the girls (and me:)  It was a pretty rough month, but I'm so thankful that we were all together.  (Last year, Nora was still in the NICU for Christmas) At the moment, we are all healthy!  

Nora ended up having the surgical drain in for a little over 5 weeks.  The stitch that was helping to secure it got pulled out about 4 weeks in.  It happened while she was sleeping-she woke up one morning with dried blood all over her face.  It kind of makes me laugh, thinking about how something like waking up to my sweet baby covered in blood doesn't make me blink.  It made me nervous not having the stitch to help keep the drain in, but we managed to keep it in!  The bulb that held the drainage smelled awful for the last two weeks.  I would have gone to get a new one, but I kept thinking it was going to be taken out soon.  After getting the OK to have the drain removed, I started calling Children's to make an appointment to have it pulled.  I was exhausted and really did not want to make another trip to the hospital that week, so I called NY back and asked if I could just take it out myself.  They said if I was comfortable with it, they could talk me through it.  Basically, the instructions were to pull!  It was pretty gross-It took a pretty good tug to get it out. Yuck.  But it is SO nice to have it out!  One less thing to deal with.  

I'm sure you were dying to see a picture of this lovely contraption;) The part that was inside was about 6" long? 

As for the next step, we leave January 20th for her next procedure.  That's next week!!  The actual procedure will be Wednesday, the 21st.  This time, they will be doing sclerotherapy (Injecting the cysts with bleomycin) in her airway.  This trip will be much shorter.  As long as everything goes well, we will be back the 24th.  My sister, Angie, will be coming with to help.  It will be interesting to see how the flight goes this time-Nora is a lot more mobile, and does not like to be contained!

Thank you so much to all of you that have been faithfully praying for Nora.  We are so grateful. Please be praying that she (and everyone else!) stays healthy for this upcoming trip, that things would go smoothly and that she would respond well to the treatment.  Please also pray for wisdom for the doctors as they evaluate her airway and decide what/how much to treat.  I am a little nervous, because this is the procedure that our ENT here isn't totally on board with.  But, we are confident that God has led us to this Dr in NY, and we feel very comfortable with his recommendations.  Above all, we are trusting that God has little Nora in His hands.  I love Psalm 139, and verse 16 was a good reminder today, "All the days ordained for (Nora) were written in your book before one of them came to be" We don't know what will happen as we continue on this journey, but God does, and that is such a comfort.  God is in control and knows all our needs, so I won't worry about tomorrow, tomorrow has enough worries of it's own! (Matthew 6:25-34) 

I will try to be better about updating while we are in NY.  I need to end this so I can (hopefully;) accomplish something today!  I'll end with a few pictures...

A few days before Christmas, my mom came over with a huge bag of wrapped gifts and another bag with matching pjs for the girls.  She said she wasn't allowed to tell me who they were from, just that it was a group from church.  Thank you to all you thoughtful, generous secret santas!  The girls were SO excited. 

Breakfast with Santa at my grandpa's nursing home 

 Nora loves cheering on the Packers!  She is starting to stand more by herself-she will be walking any day now