Monday, November 11, 2013

Thankful Hearts

My heart is feeling so full of gratefulness and love.  The Lord has given us so much through so many of you.  Our life is rich and beautiful, and so much of it is due to you.

We have lived in three different states over the last two years, and in each place, we have been so blessed by love from family and friends.  I wish I could list each and every blessing that was given to us from you.  From your words, to your presence, to tangible gifts and cards…I just can't say thank you enough to each person that has loved us so well.  And I'm afraid that if I did list out the people that come to mind, I would forget some very important encouragers.  So, just know that to each of you, our hearts overflow.  Thank you.

This weekend, my parents spent one night with us on their way to my grandfather's 80th birthday celebration and my brother and sister-in-law's baby shower.  We were so sad to miss these family events, as Julia's health prevents us from traveling, but our hearts were with them.

To encourage us, my sister and brother-in-law spent the weekend with us.  Natalie LOVES these two, so their presence was a double blessing.  And because John is a NICU nurse, they are also world-class babysitters for Julia, enabling Taylor and I to go out on a date.

Thanksgiving will be a quiet holiday for us this year.  So, we decided to have Thanksgiving dinner this weekend with John and Sarah!  You all know how I love food, so here was our menu:

Rotisserie chicken from the store (suuuch a good choice compared to making it ourselves this year!)
Mashed potatoes and gravy
Sweet potato casserole (try this and you'll never go back to marshmallows:
Green beans
Cranberry sauce
Aunt Gussie's rolls (family recipe!)
Pecan Pie Bars (because I've ruined so many pie crusts that I don't even try any more)

I think we should just freeze this stuff to eat on the real Turkey Day!

Wednesday, November 6, 2013

A Reason for Everything

Well, we've got our heads up again.  I'm an Allen, so I have this incurable optimism.  It is a good thing, but I'm aware that it can be super annoying to others.  :)    

We are so grateful for everyone's encouragement!  We have needed it.  Along with so many positive thoughts, prayers, and truths that you all have given us, here are two very concrete reasons why it is AWESOME that Julia did not get her surgery yet:

1.  One of my speech-language pathology mentors, with whom I did my pediatric inpatient rotation, reached out to me to tell me how good it was that the surgeon delayed our surgery.  She cited a recent pediatric patient who went in for a relatively straightforward surgical procedure.  Unfortunately, the fact that the family had been passing around a virus was not disclosed at the time of surgery, and the child was on a ventilator for two weeks.  That is definitely not an outcome we want.

2.  When we received the news that Julia had tested positive for rhinovirus, the medical team also informed us that about half the children that they see also test positive for this right now.  A common cold?  We thought that should be no big deal.  Well, we just heard from a local friend whose 11-month old, typical daughter was just released from the children's hospital after being in the ICU for complications related to... rhinovirus.

You know, it's probably good that we're hunkering down in this season, anyway.  When Natalie was a newborn in Tucson, we never had to deal with a real winter, so cold/flu season was quite different there.  I think we are learning in the extreme what it means to have babies on the east coast/midwest!  Not a bad thing to keep everyone well.

Natalie enjoying part of a care package that the sender probably had no idea would be as fun as it was.

Monday, November 4, 2013

Surgery Postponed

You can tell I'm an iPhone newbie because my finger is always over the camera.

We received a phone call on Saturday evening saying that Julia had tested positive for rhinovirus, a common cold.  On Sunday, the surgeon confirmed that he was postponing the surgery until December 10.  This was shattering, truly.  I cannot believe how many hurdles we have faced this year.  Especially after they examined her on Friday and found her in perfect health, with no symptoms of a cold.  They said that because the risk of pneumonia and difficulty extubating is increased so much in kids with viruses, and in kids with DS, that postponement is essential.

This is so hard for many reasons.  We have worked hard not to expose ourselves to any viruses.  I know, in fact, exactly where we got it: at the pediatrician's office, where we waited for less than 5 minutes in a waiting room full of sick people, for Natalie to get her flu shot in order to protect Julia.  The next day, Natalie was sick.  Oh, the irony.

I had no idea that postponement would be so long.  When we heard it would be 6 weeks until she could have the surgery, I wanted to crawl in to a hole.  Because in fact, that is what we will be doing until then.  And it is essentially what we have done for the last few weeks.  We haven't had any children at our house in months, and our only interactions with other kids have been outdoors.  We don't go to church and we don't put Natalie in the nursery.  Julia is with me nearly 100% of the time.  I continue to pump for her to gain antibodies.  We didn't do Halloween.

Well, we dressed up.

But, with lots of encouragement from so many of you, I've got my head up again.  The extended quarantine - especially during the Christmas season - is what I am least looking forward to.  I feel bad for Natalie, being stuck at home with mom.  But, we will get through it.  

How I Feel About Surgery Being Postponed (PG Version)


Also, there was a broccoli incident.  :)  No, I have no idea who threw it against the wall...

Friday, November 1, 2013

Pre-Admission Testing

We went to Nationwide Children's Hospital today for "Pre-Admission Testing."  It wasn't too bad; just long.  We left the house at 8:30am and returned at 2pm.

High point: Meeting Dr. Galantowicz.  What an incredibly kind man.  Very gentle and sweet with Julia.  Very peaceful and down-to-earth.  Some of you know that we had a "hilarious" meeting with another surgeon in Raleigh, just to learn a little more about the surgery.  Whereas that individual treated us as if we were scum that some how came to inhabit his office, Dr. Galantowicz was kind, attentive, and treated our daughter with dignity.

This is such a happy hospital.

Low point: Blood draws.  Julia is such a trooper during all of these appointments, and she is so adorable and sweet despite some of the things they put her through.  For instance, the blood pressure cuff left significant bruises on her leg today, yet she didn't whimper a bit.  However, when she got her blood taken, she screamed.  This is so unusual for her, so you know it had to hurt.  When we got blood drawn about a month ago, she didn't even bat an eyelash; I wish I knew what was different today.  Her blood was pretty thick today.  The one good vial will go to testing her thyroid level, as her TSH level a month ago was sky-high and led to her being put on Synthroid.  The other vial that they got wasn't usable because it had a clot in it.  Thankfully, the doctors decided she didn't need to have all the other blood drawn that had been ordered because they saw how much pain she was in.  We'll know Monday if her TSH level has come down sufficiently to allow for surgery on Wednesday.

Beautiful spaces.

Everything in between:
We met a lot of wonderful people today who may care for Julia when she is inpatient.  They swabbed her nose to check for any viruses; we'll know on Monday if she is clear and will be able to proceed with surgery on Wednesday.  They did a complete physical on her and got her weight (4.65 kilos [10.25lbs]!  Dr. G congratulated me on "really fattening her up!").  A nurse practitioner went through the surgical process in detail with us, which was so helpful.  I'll spare you the details, but we talked for an hour and half about this.  Some interesting facts: Julia's heart will be stopped while her blood pumps outside her body during during surgery through the heart-lung machine.  Tiny stitches will be made to attach 2 Gore-Tex patches (yep, same material as your rain jacket) to her heart wall to separate right from left side.  Her one common heart valve will be gently separated in to two (the mitral and tricuspid valves).  Her breastbone will be separated so they can repair her heart, but it should repair itself quite quickly.  They use dissolvable stitches to repair bone!!

How Julia feels after such a big day!