Prayer & faith gets you through days like these...

Savannah had a rough day yesterday.  The doctors had her set up for about 3 hrs worth of testing (2 hr  test to see how her feeds traveled through her body) and an upper GI.  During the test they had to do bolus feeds which she doesn't tolerate anyway.  After coming back, she began to reflux repeatedly causing her heart rate and oxygen to drop significantly.  The look on her face as she struggled to breathe is something I wish could be erased from my memory.  For now they have her back on oxygen, but she still continues to drop her sats occasionally when she refluxes.  The doc came in this morning and put her on meds to help with the heartburn and emptying of her stomach.  Please pray that she recovers from this setback quickly.  We feel too much was done yesterday at one time, but it was part of her prep for the g tube placement.  The surgical team also wants her closer to term before they will do the surgery.  Just praying and keeping faith that she will be strong enough for the surgery.    I'd give anything to trade her places-some things in life I will never understand.

Savannah came back from the swallow study yesterday acting as though it didn't phase her one bit-skipped right on into her session with the occupational therapist.  The OT believed she was doing well and was showing progress since last week.  I can tell you the OT was an angel-said things that I needed to hear just at the right time.

Got the call with the results from the study today-she will need surgery to have a g tube placed after all.  During the study she showed that she had nasopharyngeal reflux and was a silent aspirator.  Of course I didn't want to add any more surgeries to her list, but this could mean she could come home after the surgery.  I pray for God to watch over her through the surgery and to recover well from it.  The surgical team will be doing tests on her bowels, etc. to make sure she is prepared for the surgery.

Please help me pray for one of the NICU babies and his or her family.  They received news that their baby was born with trisonomy 18-the nurses placed rainbows around his crib-their rainbow baby.  God bless them and may He comfort them in the days ahead.

I saw a post on Facebook today-stated "I'm sorry I couldn't save you".  There couldn't be any truer words-the lives of our children are in God's hands, but what we wouldn't do to save them from death, sickness, pain and the list goes on.

I Serve a Risen Savior

Happy Easter from our family to yours!  I am even more grateful for our risen Savior..that He chose to die on that cross so that we could have eternal life and peace with Him if we accept Him into our hearts and lives.  That eternal life takes on a whole new meaning for me today...if I don't get to see my daughter fully healed of her infirmities on this earth I do know that I will see her fully healed one day with our Savior.  I still believe that God is in the miracle working business and Savi's condition is fully in His hands.  She's already proven herself as our little miracle and coming this far.

Savi was doing well today when we visited her to give her her Easter goodies.  They had to go back up on her feeds (every 3 hrs over an hour and a half span of time) due to her frequent decreases in oxygen.  Today she had a few episodes of desatting into the 70s, but nurse continues to think it's due to positioning and reflux.  She was sound asleep while I was holding her, but as I was saying my goodbyes she decided to wake up.  Little stinker has a habit of doing that.  She loves to be held, except for once yesterday...she let me know the best way she could that she did not want to be picked up.  Savi hasn't really fully cried...she lets out little squeals or cat sounds I call them. I swear she has hissed at me a few times.  She definitely has her daddy's temper.   :-)

It was a little overwhelming having to celebrate Easter with our other 2 kiddos separate from Savi, but it was good getting to see Brayden & Alayna's excitement over the egg hunts.

Moving on down...

Playing catch up

I arrived at the hospital on March 9th for my NST only to discover Savi's HR to be in the 80s.  30 minutes later she was out of my belly and set to be transported to Kosair Children's Hospital by 10 that evening due to being 6 weeks and 1 day premature.  She weighed a whopping 7 lbs, 7 oz.  Once getting to Kosairs, the answers to our questions were revealed:  Savi has a cleft palate, anal fistula, heart murmur and being fed through an NG tube.  She has come a long way in just 2 wks being weaned completely off the vent and straight to room air.  However, March 21st came with news we were not ready to hear...Savi's genetic testing came back with the result of a syndrome by the name of Pallister-Killian syndrome.  I had actually looked it up during my pregnancy due to my complication of polyhydraminos and docs suggesting possible Down syndrome.  Whether she has a mild or severe case of it will only tell with time and like it has been said it is up to Savi how well she does.  It's a very rare disorder limiting a child's ability to walk, talk, eat normally, etc., but the worst of it, her lifespan can be shortened.  We all know who holds the true answer for that though...Jesus Christ!

As of today we continue to wait on results from her brain MRI and she was assessed by a speech therapist who suggested a swallow study due to her weak gag reflex and evaluations from OT & PT due to her weakened arm & leg muscles.  Her main obstacle in the way of getting home to us is her feeding and gaining her weight back (she dropped to 5 lbs, 15 oz.) since birth.