The Story

Every person is born with a story.  Some people have simple stories while others are more complex.  Most newborn babies, like books, can be studied, tested and examined and it typically doesn't take too long to figure out what it's all about.  However, some stories are so complex that it seems like they are still being written.  Which brings us to Natalie. The Chief Doctor of the Neonatal Intensive Care Unit at UNC Chapel Hill spoke with Joanna and I today and told us that Natalie's story was one of the complex tales that can only be understood with time and perseverance. Here's her story so far...

Natalie was born at 8:17pm this past Saturday, the 21st.  Joanna's water had broken earlier that day shortly after 11:00.  I was at a job interview so when Joanna called to let me know to come home I quickly drove by and picked her up and drove her over to UNC Chapel Hill.  We were able to leave Isaiah with our neighbor until someone was able to come and get him for the rest of the time we would be in the hospital.  We got to the Hospital with no problem.  We checked into a room, watched some TV and waiting until Joanna could go in for the surgery.  As we waited we didn't know what to expect.  We were scared and excited at the same time.  The time came for Natalie to be born and out she came looking as beautiful as we had ever imagined.  They let me hold her for about 5 minutes before they took her off to the NICU and Joanna and I just stared at her and each other wondering what her health would be like.  She looked "normal" and she even cried like a very quiet little kitten. 10 fingers, 10 toes, 1 head, all the usual things.  "So what was all the earlier fuss about?", we thought to ourselves.  Well later that night they were able to give her a good once over and give us a preliminary update as to how her general health was.  They said that she was breathing well, she has never had to be given oxygen, her heart beat is very strong, all of her inside parts were connected and functioning and she even used the bathroom, twice.  However, there were 2 things that were not typical to a newborn baby. 1) She has very low tone in most of her muscles.  This "condition" is called Hypotonia which literally means "Low (Hypo) Tone (Tonia)".  The best way I can describe her is that all of her muscles are intact but her muscles are just very weak.  So she moves quite a bit but doesn't flail and kick like some newborns.  2) She hasn't figured out how to swallow.  She has to be fed by a tube so far.  She tries to suckle but just can't figure out how to.  Her tongue is weak and when she lays on her back it impedes some of the oxygen saturation causing her to struggle a bit.

What the doctors are trying to figure out now is, Are these symptoms part of a larger problem? Will the issues eventually correct themselves? Does she have some Neurological Issues causing her body to perform this way? And so far the Doctors have told us point blank that they just don't know.  They told us this morning that the medical field is sadly not advanced enough to swiftly interpret stories of little girls like Natalie just yet.  However, they are commited to taking as long as needed to figure out what was going on with her. They will be doing tons of tests and retests over the next couple of weeks and months.  They told us that some results can only be revealed with time.  We were told to take deep soothing breaths and enjoy our little girl while they work as hard as they can.  She's in great hands over there and I know they will be doing their best to find some answers.  

Yesterday they performed a brain ultrasound and an MRI and did not find anything abnormal in her brain. This is good news and bad news. It's good news because in this specific MRI and ultrasound they didn't find anything wrong with her brain.  The bad news is that these tests didn't narrow anything down. Now that those tests (The brain ultrasound and the MRI) have been completed to no avail they are breaking up her story to several different teams and they will all individually examine her from the standpoint of their respective fields.  We have a speech pathologist team examining her oral structure and attempting alternative feeding methods, we have a genetics team studying her DNA and asking Joanna and I if we are related, we have a Neurology team studying her brain as much as possible, and we have several doctors and nurses that are monitoring and testing her 24 hours a day.

So what does all this mean? It means that we have a beautiful baby girl that has been breathing oxygen and stealing hearts for almost 5 days now.  It means that we have our Natalie but it also means that her story is yet to be understood completely.  So now we have to wait for a diagnosis but at least she gets to wait with us.  The doctors said that they couldn't and wouldn't even begin to speculate when she can come home with  us.  For now, we'll most likely move into the Ronald McDonald house close to the Hospital so that we'll be able to visit with her as much as possible.  I'll commute back and forth to work and after a few weeks of that we'll see what's working best for us as a family. As cliche as it sounds we just have to take it one day at a time and wait it out.

Thank you all for your kind words of encouragement so far.  It's been a huge help.  We found out today that there is a computer in the NICU that we can use so hopefully I can take the opportunity to give specific updates to our family and friends beyond a simple status update sent from my phone.  Thanks for praying and being there for us.  Also, we'd love any of you to come over and visit with us but if you could just give us a call first then that would be great.  Thanks again.  More story to come.

P.S. Oh yeah, and about her feet. The doctors say that they will know for sure when her muscles tone up and strengthen a little more BUT they think that her feet are not clubbed after all.  They said that because of the position in the womb her feet had to position LIKE a clubbed foot but unlike a clubbed foot they can be extended and moved around enough to straighten and bend like an average baby's foot. And she has very long sweet toes :-)