Monday, May 14, 2012

Our bumpy road continues..

Here's what has happened since I last updated:

...Clay is totally OFF morphine! Yayyyyy!!! ! No withdraws, either...thank God!
...Reflux has still been an he still hasn't been fed :(
...We had a g-tube study done on Friday to see what may be causing the reflux problem. The study was done by putting a contrast dye through his g-tube and then shooting x-rays to see how it flows through his digestive system...or not flowing, in Clay's case. For whatever reason, Clay's stomach is not emptying. So the reflux problem has been caused by his lil tummy getting too full, thus making him puke. 
...Now his g-tube is set to drain, so it's pulling all the secretions/saliva/etc. off his stomach...thankfully, this has gotten his reflux under control. So no more pukies (for now)!
...Dr. Draus wants to wait a couple of weeks before we investigate the problem any further. He wants the g-tube site to heal really well before they have to go poking around it again. They will probably start out with an endoscope, to see what they can see..then go from there. This may end up being yet another surgery for Clay. Boooooooooo. I swear, we are going to hit every possible bump in this CDH road. But we WILL get through it! Please pray that it is an easy fix.
...The g-tube has created some problems, but I think it has helped Clay's breathing--now that his stomach is off his diaphragm. He's been on ROOM AIR (21% oxygen) since Thursday!!! This is really good stuff!  The ventilator is still giving him extra pressure with every breath, but the settings are relatively low--especially considering all his little lungs have been through!
...Also, Clay now has an uncuffed trach, instead of a cuffed trach..and he's doing really well with it! He's still getting good pressures from the ventilator, despite the air leak he has with the uncuffed trach. And we are lovin' that air leak, because we are getting to hear his voice. I'm not gonna lie, it really freaked me out at first, to hear him whimper and cry and makes noises around his's just so weird to actually hear him! He's also let out a few giggles and squeals..and boy, does that sound so sweet! :)

Even though we're facing another hurdle, my baby is happy and we are thankful. He is such a blessing to everyone who sees his sweet smiley face and I am so so so grateful to be his mommy.  I couldn't have asked for a better first Mother's Day, getting to hold my baby in my arms.

He is just amazing. And God is so so good.

Thank you all for standing by us...your love & prayers & support mean so much to us. We can feel them..they are carrying us through!

Keep praying & believing, my friends. Much love to you all!


  1. rad rad rad! happy belated mother's day gorgeous!

  2. Hearing his voice-awesome!! Before you know it he will say Mama!

  3. Blessings to you, Hannah! Your picture and post today brought tears to my eyes. So sorry for all that you guys are going through, and still lifting you all up in prayer!

    So happy for you that you got to hear your little guy laugh!

  4. he is beautiful...just adorable

  5. The stomach problem sound much like Jacob's and they were talking about placing a G-tube since his stomach and nd/nj tubes were no longer working. We came to find out after a lot of mishaps that he had developed pyloric stenosis, a thickening of the pylorus thus not allowing his stomach to drain. After many invasive procedures, a simple 15 minute ultrasound determined this problem. When I suggested pyloric stenosis, the doctors just kept saying that would strange for a baby "like Jacob". Here is our blog post describing the whole ordeal:;postID=2079207035089054078 Maybe it will provide some useful information for you. Good luck to your little guy that this gets figured out soon and no more pukies!

    Mommy to Jacob
    RCDH Survivor

  6. Your story has brought back so many memories.... I've watched your baby through the ups and downs you all have shared over the past few months and I know the tears that you've cried, but never give up.... God has a reason, he always does!!! I know I do not have to tell you... that pretty baby boy is worth every mintue that you lose of sleep, every tear you've cried and every moment of impatience that you've had just wanting him to "hurry up and be okay".... Don't lose sight, and don't lose FAITH!!!! Lean on GOD, he's always there to tell you its worth it in every tear and every smile on that baby's face!!!

    Trisha W. Allen
    NICU Mommy of a little girl that the "doctors" said would never make it...
    WELL, SHE DID!!!!!! GOD HAD A PLAN FOR US...& she is PERFECT!!!