The Broken Can Be Fixed

Saturday, prior to the feeding tube coming out...and now on oxygen.

Wow!  What could possibly be so time consuming about having 3 children at home?? HA!  Well, I have to say that is the reason I am so slack on updating this all informative blog.  It has been almost 3 months and my-oh-my have we had some adventures. Alexis was discharged from the NICU on April 18th at exactly 2 months old.  She actually got to come home on her original "due date".  How cool is that?  Pretty awesome.  Since then we have had 2 more admissions and well....surgery in 10 hours.  The past 72 of her 122 days since birth, have been spent in the hospital.
In case you are still stuck on the "S" word...SURGERY....allow me to back up a bit and give you a quick overview of life since the last blog entry.

First off, the biggest news: NICU discharge!  Below is a quick look at what we faced in the Neonatal Intensive Care Unit;
-2 collapsed lungs, bilateral chest tubes
-1 week on a breathing tube. Ventilator 1 day, oscillator 6 days
-2 congenital heart defects
-unexplained hypertension (high blood pressure)
-congestive heart failure
-IVH (brain bleed)
-2 blood transfusions
-oxygen requirements
-short term seizure activity
-minor kidney issues
-apnea (not breathing for more than 20 seconds)
-bradycardia (low heartrate)
-GERD  (Gastroesophageal reflux disease)
 Feeding difficulties any many immaturities.
 

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When little Lexi first came home she was on so many medications.  I was giving her meds 18 times a day.  Currently she is on 1, yes ONE!

So, now to go back to the 2 admissions...5 days after coming home from the NICU we were re-admitted for failure to eat and failure to thrive.  A nasal gastric feeding tube (NG) was put in and tests and study's were conducted. I convinced them that I had already been extensively trained to use a feeding pump and how to put a new tube down, if she pulled the exsiting one out (which happened 6 times!)  I had all of this training because of Josiah's journey, so they let us leave after 2 days.  Yay, for a short stay!

Well, it is a gift that we know how to live "hospital life" to its fullest because we were admitted into the PICU (Pediatric Intensive Care Unit) a week ago and I am sitting in my chair bedside to Alexis as I type this.  We battled for 6 weeks with feeds and with apneas. She was getting all of her feedings through the nasal gastric tube (NG) but she was not tolerating it at all.  She was vomiting and having horrific apneas, some of which requiring vigorous stimulation.  Then right before admission, she had one requiring me to turn her over and hit her in the back :( ugh....that never gets easier.  Turns out reflux is the culprit for her pain, not wanting to eat, and obstructing her precious airway.  Soooooooo.....it is now time for the next step, to the operating room we go!  Well, to the operating room Lexi goes....to the waiting room mommy and daddy go!  Tomorrow morning she will be having the Nissen Fundoplication, which is a procedure to strengthen the "flap" at the end of the esophagus where it empties into the stomach.  During the same operation they will do another procedure.  Little Lexi is getting a new accessory!  Her abdomen will adorn a nice little silicone g-tube/button and she will make it look good, pppshh!  haha!  In short, Alexis is having the same surgery Josiah had in January of 2011 and she will have the same gastric feeding tube protruding from her abdomen, as Josiah had.

Yup, well I guess I have gotten yall back up to speed in as few words as necessary.

Surgery is scheduled for 10am tomorrow and will take about 4 hours.  We put our faith in Christ and that his will for her is only prosper her, not to bring her harm.


Jeremiah 29:11