June 9th – It’s a Date…Surgically Speaking

Here’s the email that I sent on May 19th after we had set the date for surgery.  We don’t know the time yet, so I’ll keep you posted on that.

Mark your calendars, folks…June 9th is the day for Clara’s ETV surgery with Dr. Myseros.

Phil’s mom arrives tomorrow – praise the Lord!  We are running ragged over here and it will be so good to have family here in the trenches with us.  My mom will likely come out a few days before surgery.  So very thankful for our Mamas.

So, prayer:  Keep it coming!

Besides the obvious prayer for Clara’s peace, safety, and a successful surgery, please pray for Dr. Myseros and all the other people in the OR and otherwise involved in Clara’s care.  Pray for Phil and me as we navigate through this – we are both emotionally exhausted, but are receiving God’s love every day in many ways. Pray for me that I would remember to take care of myself physically as I am carrying Baby #3.  Pray for Phil…he has so much on his shoulders and is doing an amazing job caring for his family!  Please also pray for Adam – Phil and I don’t have nearly as much to offer him right now and he is struggling with that.  Grandma arriving tomorrow will help with that, though!

Many of you have asked how you can help.  I feel weird laying this out, but hey, you asked for it!

1.  This one is actually very important to me.  Your words of encouragement and love are HUGE to us.  I would love it if you would Cc Phil on your emails.  philip.swenson@gmail.com  I have been forwarding him things, but he needs to feel the love just as much as I…probably more so, since he has to deal with a crazy pregnant lady through all of this as well 🙂

2.  Meals – frozen or freezable meals would be helpful that we could pull out as needed.

3. Some have asked about gift cards…we have a take n’ bake place by our house called Dinner Done.  Clara loves Chick-fil-a!  Papa Murphy’s pizza is a good one, too.

4. Some have asked what kinds of things Clara is into.  One word: PRINCESSES!   Ballerinas and stickers are up there, too.

5.  Once Grandma arrives, childcare for Adam will be less of an issue, but knowing people are available is a big stress relief for us.  Thanks to those who have already offered and helped out in this area.

Again, I hesitate to even write these out, as your support and prayers are the most important to us, but so many have asked, i just figured I’d put it out there.  We are so blessed by all of you.

I’ll be in touch.

So much love,

Dana

The Princess and the Pea

One thing that I left off of my emails, but will share now, is that the reason for Clara’s hydrocephalus is a teeny tiny little tumor that is blocking the duct where her spinal fluid should drain out.  There is no way to biopsy the tumor at this time because of its location in her brain (too risky), but its size and the way it shows up on the MRI lead all the doctors who have seen it to believe it is benign.  She will have yearly MRIs to monitor the tumor, but it will more than likely just be something she grows up with.  That is not to say that it still doesn’t creep me out knowing it’s in there, but the doctors have spoken with great confidence that at this point it would be unwise to pursue biopsy.  All this explains the Title of this post “The Princess and the Pea.”  My neurologist cousin Lauren used that as the title for an email concerning Clara, and I thought it was just perfect with Clara’s love for princesses and all – so I’m stealing it!

Here’s another email that I sent on May 16th after we had met our neurosurgeon, Dr. Myseros:

Hello again, Friends.  First, I must thank you from the bottom of our hearts for the many sweet, loving, encouraging words you have sent our way.  I wish I had time and energy to respond to every single one, but please know how much they have meant to us.  I reread the notes often and we will be carrying your words close to our hearts through all of this.  I think I am going to print all of them in a book for Clara to show her some day how many people loved and prayed her through all of this.

So, we met with the surgeon on Thursday.  It was a hard meeting, but a good one.  Dr. Myseros is our surgeon and he is very good and very confident, which helped us a lot.  I told Phil on the elevator ride down that I probably wouldn’t be friends with the man, but he is EXACTLY the kind of man I want operating on my daughter.  He spent a lot of time with us explaining options and showing us many pictures of Clara’s brain.  Clara looked at the screen and said, “That’s me!”After getting all the info, Phil and I made the very difficult decision to have Dr. Myseros do an ETV surgery to treat Clara’s hydrocephalus.  ETV (Endoscopic Third Ventriculostomy) involves poking a small hole in the bottom of the third ventricle of Clara’s brain.  This will bypass the blockage that exists between her third and fourth ventricles and allow the spinal fluid to drain properly and be absorbed in other parts of her brain.  This is hopefully a one time surgery and will solve the problem long term, whereas with a shunt, there is potential for complications down the road.  She is so young, that we opted for a “one and done” situation.  It was the hardest decision that Phil and I have ever had to make.  There are many other factors that went into our decision, but I’m trying to keep this relatively simple.

We will hopefully have a date for surgery soon.  Dr. M was in surgery all day today, so he has to consult with the hospital schedule to see when it will all work out.  Surgery will be at Children’s in DC, just like the MRI was.  We are happy about that.  I will hopefully send another email out early next week with a date.  Now that we have decided what will happen, we want to just do it so that the “what if’s” will go away.

We are very tired.  Please continue to pray for our whole fam as we navigate one day at a time.  Many of you have asked how you can help – thank you!  Once I have a date for surgery, I will be able to see what the next few weeks will hold and what would be most helpful.  God is using all of you to minister to our hearts – we are so grateful.

Love, Dana

Clara’s Story

Yooohoooooooo!  Haven’t seen you in a while!  I’m resurrecting this old blog to share some stuff that’s going on in our family right now, specifically with Clara.  I will continue to email out updates, but I will also post them here for others who would like to follow and pray along with us on this newest journey.  Adam is doing well and all set to finish up preschool this year and move on to kindergarten in the fall.  Baby Boy is still on track to arrive in early August.  Here’s the scoop on Princess Clara:

This email was sent on Wednesday, May 14th…

Hello.  I am sending this info to our family and friends that we consider family.

Many of you are aware that we’ve been investigating some issues that Clara has been having with her walking/stability.  She also trembles whenever she tries to do something that requires any sort of motor skill or coordination, such as bending to pick something up, pushing a button, or pulling herself up onto something.

After some initial appointments with ortho and neuro, she had an MRI of her brain today.  They had to put her under since she is so little and would not be able to hold still.  The people at Children’s were wonderful.  We had a good experience and Clara was her charming princess self.  She has fully recovered from anesthesia and is watching Paw Patrol as I type.

A couple of issues did show up on the MRI, however, that were explained to me immediately following the MRI.  I will explain as best as I can (Lauren…you’ll have to excuse me!)  All people have fluid in their brain, but the MRI showed that Clara has too much fluid (called hydrocephalus).  This is apparently because the opening that the fluid is supposed to drain out of is too small.  This is called aqueductal stenosis.  The good news is that this is treatable.  The yucky news is that the treatment is brain surgery.  We meet with the brain surgeon tomorrow, so I will have more info and understanding after that.

So, we got hit with all this today and are feeling a bit blown away.  We are so grateful for all your prayers as we have been investigating all of this.  We know that our girl is in God’s hands.  I was driving home and I thought – geez, if we’d have known this was all going to go down, we might have reconsidered the timing of baby #3.  God immediately put these sweet words into my head, “I knew.”  God knows it all and will show us the way that He has planned.  He has already given us remarkable technology and wonderful doctors.

Just wanted to update everyone.  Please keep Clara and the fam in your prayers.

Love, Dana