Saturday, January 28, 2012

Human mistake or Holy miracle?

After much waiting, we heard on Thursday that Ray's test results for PKU came back normal. In processing our experience, I really felt compelled to ask the specialist why they took the approach with us that they did.  Going from blood from the newborn screening test, they discussed Ray's condition in the affirmative without having a confirmed diagnosis.  Why was that?  Wouldn't a more logical, conservative approach be something along the lines of..."Come on in, let's retest him, we'll see what comes back and we'll take it from there...but in the interim, do you have any questions?"  I understand that Vanderbilt is a teaching and research hospital, so maybe that has something to do with it, but the whole experience left us feeling like we'd been slammed into airborne debris due to the wrath of a tornado.


So, when Natalie called to share that the third and final test was normal, I asked her "How many false positives have you encountered?"  Astonishingly, in her four plus years of experience, she's only seen one other false positive and that was with a patient they were already treating.  They've NEVER seen a false positive with an outpatient.  We're the first.  Wow.  In learning this, I guess I have to give Natalie and the over eager team the benefit of the doubt.  If they've only seen one other false positive in over four years, then I can see why they took the approach that they did.


We quickly spread the good news to family and friends along with this mind-blowing news about the rarity of Ray's case.  My brother-in-law's response really got me thinking...Was this purely a human mistake or could this be a Holy miracle?  Did Ray have PKU and by the grace of God, through all the prayers that were lifted, did God take this disorder away from my son?  Or is it just a statistical outlier?


I wouldn't call myself a religious person.  I haven't been to church consistently since I was a child and I had a born again experience in college that was short-lived.  However, I do consider myself a spiritual person and a firm believer in miracles.  Is this God's way of showing us His power and love for us?


What do you think?  Have you ever experienced a miracle and felt God's hand in it?

Sunday, January 22, 2012

PKU...

...stands for Phenylketonuria.  (Yeah, try and say that three times fast!)  Because Ms. McDavid was such a phenomenal AP Biology teacher in high school, when we got the call on Friday from Vanderbilt Children's Hospital saying that Ray's newborn screening for PKU came back abnormal, I was able to recall a few things.  Genetic disorder...missing an enzyme that processes phenylalanine...warnings on yogurt, gum, Diet Coke...but, that's about it.


This sweet-voiced woman on the other end of the phone said that we needed to retest Ray for PKU and could we come in at 4pm?  We'd get the results back that day.  After a quick feeding and with my pulses racing, Rich, my mother and I got the diaper bag packed (which we subsequently forgot in our haste), snuggled Ray in his carrier and got on the road to the Children's Hospital.


My mind was racing and I was freaking out.  Our midwife said that the heel stick test she did  sometimes needed to be redone, so wasn't that just the case here?  My Mom assured me there was nothing to worry about.


Upon arriving, I'm immediately feeling resentful because a hospital environment is exactly what I didn't want for Ray.  I'm irrationally envisioning germs everywhere, dancing around my newborn. 


We check in and are met with a triage nurse that weighs Ray, takes his measurements, etc.  Even though she's nice as can be, I'm immediately annoyed.  She starts telling us that they work with PKU families all the time and she would be seeing a lot of us.  Then she starts oozing compliments about the PKU specialist, Natalie-- how sweet she is, how she's a new Mom too...my mind just can't wrap around what she was saying.  I mean, weren't we just here to retest?!  Ray didn't have this for sure, right?


From there, we go into an examining room and Natalie comes in.  Cherubic-faced with long dark hair and beautiful blue eyes, she calmly starts to walk us through what PKU is, the metabolic biology of it all, what happens if left untreated, pathways for treatment, etc.  Again, like the triage nurse, she's talking in affirmative, telling us about support groups and a local Foundation that was formed several years ago by PKU parents.  All I could think is, "WTF?!  This is all happening so fast!  My son is healthy.  Just look at him!"


Babies with PKU cannot process phenylalanine (we'll call it phe for short), thus turning it into tyrosine.  A normal level of phe in you and I would be 1 and a normal level of tyrosine would also be 1.  For individuals with PKU, their levels range from 2-6 for a mild case and 6+ for a more severe or "classic" case.  Turns out, the heel stick test they received yielded a level of 2.7 of phe in Ray's blood.  If left untreated, the high levels of phe cause brain damage and lead to mental retardation.  (For more information on PKU, see this comprehensive March of Dimes article.)   


When we ask Natalie if the results could be wrong, she says she rarely sees a false positive.  I'm dumbfounded, completely overwhelmed.  I understand that this is a treatable disease through a special diet, but how can this be?!  PKU occurs in about 1 in 25,000 births, so how is it Rich and I could have passed this on?  Turns out both parents have to be carriers and off-spring have a 1 in 4 chance of inheriting the disorder.


Natalie asks if we have questions, but I can't process.  Dietitians are brought in and introduce themselves with big, toothy smiles, saying "We'll be seeing a lot of you"...but I'm thinking, "I don't want to see a lot of you!"  A bright neon sign is flashing through my mind-- SPECIAL NEEDS---over and over again.  We have a child with special needs?  How can this be?  What about when he goes to daycare?  What about school?  What about his teenage years and into adulthood?  


They need to take blood from his tiny arm, so Rich goes with Natalie to have that done while I stay in the examining room with my Mom, crying my eyes out.  Turns out they tried one arm only to have to draw blood from the other, so he came back with two tiny band-aids on both arms.  When they come back, I try my best to keep it together.  Ray must know that I'm having a really hard time, so he provides some comic relief by farting loudly as if on cue several times. 


Right before leaving, Natalie comes back to tell us that the machine that processes the blood samples only processes ONE sample at a time and it takes 2.5 to 3 hours.  Unfortunately, the machine is acting up and while we were initially told we would know the results that evening,  it looked like we wouldn't know until the next day.


That night, I'm spent.  Rich is too.  I have a pounding headache that wouldn't go away.  My eyes are swollen from so much crying.  We are still processing.  We alert friends and family as to what's going on and immediately, prayers are unleashed into the Universe. 


The next morning, we try to remain present and in the moment while awaiting the call from Vanderbilt.  We don't hear from Natalie until about 10:30am only to get news that the machine is still acting up and we probably won't hear word until Monday.  Sigh.  How is it in this age of technology that test results can take 48 to 72 hours to process when I can mail a letter and have it get to its destination in less time?!


Fully expecting to hear from Natalie on Monday, on Sunday evening we're surprised to see the Vanderbilt number show up on my phone.  With my heart racing, we put the call on speaker and to our cascading relief, the results came back NORMAL!  OMG.  I immediately cry in relief and a tangible shift of energy radiates throughout the room....ahhhhh.  Wow.  I guess we're one of the rare cases of a false positive!  We were instructed to come back to do blood work for a third time just to be sure, but we're feeling extremely positive that sweet, brave baby Ray does NOT have PKU.


All of this has left us light, jubilant and incredibly thankful.  I know that if he did have a positive reading for PKU that Rich and I are uniquely equipped to handle such a challenge, to embrace it, learn from it and do whatever we would need to do for the health of our son.  However, we are sooooo grateful that this is one challenge that we don't have to face.  This roller coaster of an experience has only brought us closer together as a family and has reconnected us to the power of prayer and the undying support of our friends and family.


To everyone that prayed for us, THANK YOU.  We felt your prayers lifting us up these past 48 hours.  Your thoughtfulness, compassion and love means more to us than you will ever know.   

Saturday, January 21, 2012

Birth Story: Raymond Russell Teising


Our beautiful son, Raymond Russell Teising, was born Saturday, January 14, 2012 (his due date!) at 1:32am weighing 8 pounds and measuring 21 inches long.  If you've been following my blog, you know that Rich and I opted for a natural home birth experience with The Farm Midwives and this is the play by play of how our son came into the world.


My last prenatal appointment was Wednesday the 11th and I was dilated about 1/2 cm.  Over the next couple of days, things started changing and I just felt different.  Contractions started in the wee hours on Friday and by noon we were at our birthing house in Hampshire, TN in the care of our midwife, Joanne Santata.  Upon arriving, I got checked and was only 1 cm dilated.  Sigh.  We were encouraged to settle into our birthing house, walk, and rest.  By 9pm, I was only 3 cm dilated.  This was after hours of contractions and I was incredibly frustrated (active labor begins at 4cm).  Joanne encouraged us to try and get some sleep because contractions often let up during the night.


After she left, the contractions did not slow down.  In fact, they were increasing in intensity and I thought, "How in the hell do people sleep through this?!"  By 10:30pm, I was in desperate need for our doula to be with us, so Rich called Jolynn Lewis and she arrived a little before 11:30pm.  Joanne checked me again and I was at 4 cm.  Really?!  I was still fighting the contractions and through Jolynn's gentle coaching and my sweet husband letting me grab him in places that were extremely uncomfortable for him, I decided to really let go...just to embrace the process-- all the messiness, pain, discomfort, and raw animal behavior that was coming out of me.  From then on, I felt like Rocky.  I was bound and determined to get this baby out of me!


At 12:45pm, I was checked again and was at 8cm!  YES!  (I actually did a fist pump.)  From there, I quickly felt the overwhelming urge to push and with less than 30 minutes of pushing, Raymond was born and I felt an overwhelming sense of release.  He came out wailing like a good boy and the first thing I noticed was how long his fingernails were.  Seriously.  They grow 'em long in utero!


The midwives attended to me and then to Raymond.  Once we got settled in, we called our good friend Stephanie Maas who we asked to play the role of our postpartum doula in taking care of us in the first few days of Raymond's life.  Once she arrived, Jolynn left and we were in fantastic care.  The days that followed were incredibly precious and we are so thankful for the opportunity to get to know our son in a sweet environment of our own creation.


On Tuesday, we left to come home and create our nest here with Raymond in it.  Although we've had some rough nights, we are soaking in every moment with him.


I have to give a huge shout out to my husband.  Rich was an incredible partner during the labor and delivery process and seeing him become a Dad has been one the greatest things I've ever witnessed.  He's a natural with children and has quickly bonded with Ray.  I am more in love with him now than I've ever been and with each passing day, I remain thankful that we found each other and created this amazing human being.

Monday, January 2, 2012

Nursery Revealed

It's true that nurseries are for the Mommies, not the babies.  I mean, newborns can't even hold their heads up for four months, so what do they care about how their room looks?!  


Nonetheless, I had a lot of fun putting this room together for my son and I want to thank my sweet husband for helping me with all the hanging (especially the "family wall"!), breaking down/recycling of what seems like thousands of boxes and overall enduring my lunatic behavior throughout this process.  To my mother, thank you for working your organizing magic and for calming me down.  To our extended family, thank you for sending us all your photographs.  The ones that didn't make it on the wall will have another place of honor in our home.  And to our friends that have supported us throughout this journey and know how much we adore children's books, thank you for your contributions.  Several of your gifts have a place of prominent display in this room and we look forward to spending a lot of time in here!


Yes, you will notice that our son's initials are featured in a couple of places in this room.  Please do not try to guess his name or try to weasel it out of us.  All will be revealed once he's born....we promise! xo


Oh, and one more thing...the cats in the pics are real (can you find the cat ears in one pic?!).  Not stuffed.  We have a pet menagerie that will undoubtedly have some adjusting to do once our son arrives!














If you have any questions about where something came from, ask me!  We worked with several amazing Etsy vendors and I'm a huge fan of modern furniture stores like West Elm and CB2.