Our Million Dollar Miracle

By Ashley and Michael Hall

 

Daily physician’s fees at the NICU…$1800

Labs, medications, etc…$100,000

Room and board during NICU stay…$800,000

Bringing your beautiful girl home after 5 month NICU stay…PRICELESS!

   

Katelyn Marie Hall was born on Nov 16, 2003 at 25 weeks gestation via emergency C-section.  She came into this world at such an early gestational age due to the rapid onset of HELLP Syndrome (Hemolysis Elevated Liver enzymes and Low Platelets) and they had to quickly deliver Katelyn to save my life.  Prior to this event I had never heard of HELLP syndrome and little did I know that the likely cause for my case was a common blood clotting disorder that I did not even know I had.  Katelyn weighed 15.5 oz and was 11 ¼ inches long.  She had IUGR (IntraUterine Growth Restriction) and was the equivalent of a 21 weeker when she was born.  We were told she had about a 5% chance of surviving.  But, she had a different plan.  After 159 days (over 5 months) in the NICU at Georgetown University Hospital, Katelyn came home along with a “book” they gave us titled “Katelyn’s Discharge Papers” (it’s thicker than my entire lifetime medical folder).  To celebrate this wonderful homecoming, Katelyn even decided to stay up all night and spend some quality time with mommy and daddy. 

 

During her stay at the NICU she endured many of the obstacles that are presented to these micro preemies.  She was on the ventilator for 2 months and as a result suffers from chronic lung disease (CLD/BPD).  Finally after 2 months she graduated to CPAP and much to her dismay spent about a week with that awful thing strapped to her nose.  From there she went to vapotherm (high flow humidified nasal cannula) and then finally to a regular low flow nasal cannula.  She had heart surgery at one week old to close her PDA (Patent Ductus Arteriosis).  She had multiple blood and platelet transfusions during her first two months of life.  She suffered a number of brain injuries including:  a Grade I IVH, a lesion in the thalamus, suspected PVL that was later ruled out, 80% atrophy of her left cerebellum, 20% atrophy of her right cerebellum, and overall atrophy of the brain.  At about a month and half old, she started having seizures and they suspected a fungal meningitis, but a spinal tap grew nothing.  She had so many infections and was on so many different antibiotics that I get dizzy just thinking about it.  She developed Stage 3+ ROP (Retinopathy of Prematurity), which was corrected with laser surgery.  She also has hypothyroidism.

 

Katelyn came home on oxygen, an NG tube, an apnea monitor, a pulse ox monitor, neb treatments 4 times a day, and on 10 different medications.  For the first several months at home she was fed continuously through her NG tube via a pump due to risk of aspiration (something she did once in the hospital after an eye exam and had to go back on the ventilator for a brief period of time).  She finally got rid of her NG tube at 9 months of age (actual age).  She also suffers from a fairly bad case of GERD (Reflux).  She has quite the social calendar visiting doctors every week:  follow-ups with neonatologist, pediatric cardiologist, GI, ophthalmologist, pediatrician, endocrinologist, ENT, neurologist, and developmental pediatrician to name a few.  She goes to private speech therapy and physical therapy and receives occupational therapy through the county once a week.  Almost one year and 16 pounds later, she is a very happy and healthy looking cute little red head with bright blue eyes.  Those eyes are going to be covered with cute little pink glasses soon since we have learned she is far sighted in one eye and slightly near sighted with astigmatism in the other.  She is down to 4 medications, neb treatments twice a day and still on oxygen.  She is the joy of our lives – our little million dollar miracle!