Saturday, September 25, 2010

iPhone Airport Update

Our hands have been full with preparing for trip to Duke and taking care of lite Lady Hawk. So here I sit, typing on my iPhone at SeaTac, attempting to get out a quick update. Please excuse spelling and grammar errors. It's tough to type with thumbs at 6:50 in the morning.

Here are some quick points of update:

-Baby Hawk is one month old! She's growing up so fast!

-Aurelia currently weighs 6lbs 11ozs. Her weight gain has been slow, but we're happy with any gains!

-Our Endocrinology and Genetics appointments went well. Her growth hormone and stress hormones were low, but that's fairly normal for infants. Her growth hormone will be retested in a year and we'll follow up on her stress hormone in a few weeks. Poor little thing had to give 4 ml of blood at her endocrinology appointment, so Joey and I jumped at the chance to give our blood instead of her at the genetics appointment. The results from those tests will take 6 weeks to come in.

-We are so excited to be on our way to Duke! And it will be great to spend some time with Mamaw and Papaw Hawkins while we're there.

And that's about it, or all I can handle from an iPhone!

Travel update: Aurelia travels like a champ! She slept and smiled all the way from Seattle to D.C.

Thursday, September 16, 2010

Our Baby Blue Devil

Baby Hawk is going to Duke!  When the diagnosis of hydrocephalus was confirmed, I started doing some research on treatment and options.  What I found was that there is not much out there.  There is no cure for hydrocephalus and the shunt surgery used to treat it hasn't changed in the last 40 years.  Although the surgery is successful in relieving the pressure put on the brain, it comes with a whole host of complications including shunt malfunction and infection.  And in the end, the shunt relieves pressure but doesn't repair any damage that might have been done by the pressure.  We knew from the beginning that the amount of pressure on Aurelia's brain was significant.  Of course, we still don't know what that will mean for her long term and we're slowly checking things off the list as we meet with specialists and as she passes milestones (i.e. we know she's not blind, we know she can hear, we know she has movement in all her limbs, etc.).  What I was looking for was something we could do to give her whatever intervention she might need to repair whatever brain damage had been done.

So, I googled "fetal hydrocephalus treatments" and found this website: Fetal Hydrocephalus.  As I read through the information provided on this site about caring for infants with hydrocephalus that have gone through the shunt surgery, I became increasingly interested in the cord blood therapy discussed on the website.  Before finding this site, I didn't know anything about cord blood banking beyond seeing a few advertisements for places like ViaCord in pregnancy magazines.  The theory behind the study being done at Duke is that the stem cells found in a baby's cord blood can help regenerate damaged cells.  The therapy is fairly straightforward since the blood being transfused is the baby's own blood.  There is no chance of rejection and it is a simple proceedure.  It only takes a few hours for the blood transfusion.  In fact, it sounds like the intake the day before the transfusion might take longer than the actual transfusion. 

After reading about the therapy, spending a lot of time in prayer, and speaking to several health care professionals we respect and trust, we decided to contact Duke to see if Aurelia would be a candidate for this treatment.  A week and a half before she was born, we got the thumbs up from Duke and were overnighted our cord blood collection kit.  When she was born, her cord blood was collected and overnighted back to North Carolina.  And now we're getting ready to travel back to Durham in two weeks for the treatment.  We are very excited to participate in this study.  We've been amazed at how well everything has fallen into place (from hearing back from Duke to the fact that Joey's parents live near to the university).  And we are so amazed at the stories from other parents of hydrocephalic babies that have gone through this treatment.  We're excited to see how it helps our little lady.

I plan to update more details about the treatment as we go through it.  It's been hard to find time to update the blog since we've had Aurelia home with us.  As we get into a bit of a routine (a very flexible routine), I hope to be able to update more.  But we are so thankful that she is finally gaining a little weight (6 lbs. 9 oz.) and so thankful that she's starting to sleep more.  She is such a little blessing.

Tuesday, September 7, 2010


September is Hydrocephalus Awareness Month.  It's interesting that a few months ago we didn't have much to any awareness of this little condition.  Last night when we found ourselves at the ER at 1:00 AM with a screaming baby, we were very aware.  Aurelia is fine, we're fine, we think everything is fine for now.  But last night made us realize how quickly things can become scary.  We went from being bleary eyed, frustrated, exhausted parents who hadn't slept for what felt like days to alert and out the door in a matter of seconds.  To make a long story short, our little lady had barely slept in the days since we brought her home.  We've been told that newborns sleep a lot, but when we started keeping track we realized that our daughter was averaging about 2 hours a day/night.  The tipping point is when she started having regular fits that appeared extremely painful and almost seizure like.  We know that seizures and hydrocephalus often go hand in hand, so we made the decision to rush to Mary Bridge.  As we held our little girl in the ER and talked to the doctors, we watched as she slowly drifted off to a peaceful sleep, her fits become fewer and farther between, and we left the hospital at 4:00 AM exhausted but reassured that it wasn't shunt malfunction or anything more serious than an overly exhausted baby.  She slept from the time we arrived in the ER until 5:00 tonight with only a few nursing breaks in the middle (this includes sleeping through a cranial ultrasound).

When we first learned about Aurelia's condition, I found the following article about learning to live with that fact that the child you expected to be healthy might have some challenges:

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
- Emily Perl Kingsley

There is a lot of things that we are unaware of until it becomes a part of our lives.  We felt this way when went through our miscarriages.  And we definitely feel this way now that we're living "in Holland."  But like the article says, Holland has windmills and it also has great beer.  We've met some amazing people that we wouldn't have met otherwise (major props to all our doctors, nurses, case managers, etc.).  We get to participate in a really neat clinical research study at Duke.  And our little girl has the most amazing smile.  We're learning to appreciate the small and large victories of this new journey.  

A few things to pray for if we come to mind:

-Aurelia needs sleep!  She won't sleep unless someone is holding her, which means we aren't sleeping much at night and only when we have pinch hitters come in to hold her (thanks Dad, Mary and Sarah for holding our baby today).  Please pray that she'll be able to sleep and that we'll get some sleep too!

-She also needs to start packing on the o - z's (and hopefully adding up to some l-b's).  When we left the hospital she weighed 6lbs. 8 oz.  She's eating like a champ, we just need it to show.

-We're pretty worn out.  We feel like we're living in a fog.  We need an extra measure of strength, grace, patience, and whatever it is that makes people good parents.  

And just 'cause we think she's too cute: 

Monday, September 6, 2010


Yes, this update is late in coming.  But we are in our first few days of being home with a newborn.  Needless to say, we're running on fumes, and loving every second of it.

Thursday morning we were told that the hope was to send us home that afternoon.  There were some things on the MRI that needed review before we got the go ahead and Aurelia needed to pass the car seat test before we could be discharged.

To sum things up, she passed the car seat test.  The MRI results were a little more vague.  The good news is that there was nothing that warranted immediate attention.  The three biggest concerns are that she has two small hemorrhages in her brain, she has damage to her midline structures (i.e. the pituitary gland, the corpus callosum, etc.), and there are parts of her brain that don't appear to be getting enough blood.  What does all this mean?  At this point it's anyone's guess.  None of the findings were too surprising to the neonatologist, but they did add to our list of upcoming appointments.  Here is a short list of the specialists that we will be seeing in the upcoming weeks: endocrinologist, geneticist, developmental pediatrician, neurologist, physical therapist, occupational therapist, speech pathologist, neonatologist, neurosurgeon, and our regular pediatrician.  Yes, Aurelia already has a busier social calendar than I do!  Oh, and we're going to Duke for a clinical research study on hydrocephalus and cord blood infusions in three weeks. . . So did any of that make sense?  We're still figuring it all out ourselves.

But for now, we're just happy to be home.  It's so surreal to have this little person in our lives after years of waiting for her.  We're so proud of our little fighter (currently fighting sleep).

Meeting cousin Padraig for the first time!