In the ups and in the downs, God is always good.

The past few days have not been the least bit mundane, to say the very least.  Alexis has had more challenging and "head scratching" days, than promising and informative ones.  Upon arriving back to the NICU Monday, after my last blog entry, I was greeted by the pediatric cardiologist.  He was there with a radiologist, echo-cardiogram, and a purpose.  Dr.  Mcquilkin watched the echo in its entirety and with great attention, then discussed his findings with me.  When he told me my innocent 2lb 13oz child had a heart that was thickening and hardening due to her prolonged (and unexplained) hypertension, I am sure my heart skipped a few beats.  Further explaining his additional findings, he also informed me that she does in fact have a PDA (Patent Ductus Arteriosus) which is a hole between the pulmonary artery and the aorta, that should close at birth but had not.  About 15% of babies born at her gestation have this heart condition and it is something I had studied during my pre-term worries.  It can close on its own as she matures but can also cause narrowing and secondary problems stemming from it.  Only time will tell.  She is closely monitored by a group of three pediatric cardiologist and is having yet another Echo, tomorrow.

Two other specialist have been called in to consult on our baby girl's condition.  Trying to find out where her hypertension is coming from, is at the top of everyone's list.  She has had many renal (kidney) tests come back abnormal, as well as a lot of blood work.  Dr. Bunchman (pediatric nephrologist) will be pulled into the great mystery that is Lexi's hypertension, tomorrow.  This afternoon, Dr. Tyson (pediatric endocrinologist) requested all of "baby girl Cimburke's" history and test results and she is going to look into it as well.  In the meantime her dosage of blood pressure medicine has been doubled twice and her numbers have not really come down.  Her average/mean number should be about 34 now and it has ranged from about 85 to as high as 106!  Her sodium levels have been low but the supplement to balance that electrolyte, has become affective...so that is one problem under control.

So, as I warned you, little Lexi has had a couple pretty nerve wrenching days back to back.  She ended up needing that blood transfusion Tuesday and within the 1st hour of increasing that supply, she started to look so much better.  Mommy sat there with her for 2 of the 3 hours of the transfusion and watched the color come back to her little body.

With 2-3 bad days, we were granted a wonderful day to keep us going!  Today was that day.  A day that changed from frustration prompted by insurance stresses and financial medical burden to pride and promise.  Alexis was given the "okay" to start attempting 2 bottles a day. 

This is such a huge milestone that after almost 3 weeks of struggle and progress, we were happy to welcome.  Daddy even left work early to spectate the great event!  As expected, she was not sure what to do with this silicone, milk-filled nipple between her lips.  Even a NICU veteran mom like myself, could not encourage this little lady to go beyond 1tsp.  But 1tsp was progress, progress of her sucking and swallowing and...almost breathing. That is one of the hardest things for a preemie to "learn".  Learning that "suck-swallow-breathe" reflex is a tough one for them.  She dropped her saturation and heart rate a few times as she was forgetting to breathe and choking on her nutrients.  A quick bottle time out a swift pat on the back, brought her back to us each time she dropped.

Tomorrow is a new day, and she will be that much more mature.  I love to watch the progress as she grows and learns and we are constantly encouraged by Emily and Josiah.  Knowing they had similar struggles and are now so....dare I say, "normal", is a great reminder of the possibilities of the future. 

Gaining control over her hypertension is one of the main goals at this time.  It seems that Miss Alexis Ruth continues to keep the Neonatologists, nurses and specialists all on their toes. But then again, this child has been a grand mystery to me since those "two pink lines"!!