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Friday, January 14, 2011

The Plan

Yes, we finally have one to give Jonah a chance of life without NG tube after 5 long months.  We're nervous and trying not to get our hopes up too high, but most importantly we are happy to finally give Jonah an opportunity to do this.  We have felt very alone in dealing with Jonah's feeding issues.  Cardiology was concerned primarily with Jonah's heart, so removing the NG tube and starving him because of feeding issues would not be recommended.  They would tell us to talk to Speech Therapy to look closer at his abilities.  The Speech Therapist would talk to us but get concerned about his nutrition and recommend we consult with the pediatrician.  The pediatrician would get concerned about the effect on his heart, therefore deferring to cardiology.  Round and round we went, thinking we were going to be on our own to figure out a plan that would not be approved by Jonah's medical team.  So when last week when Jonah's cardiology team presented us with a plan, we were shocked!

Sunday is the big day.  The tube is coming out.  If he loses more than 5% of his body weight or becomes severely dehydrated we will have to put the tube back in.  They would like to see him take at least 13oz each day, but this is a tall order for the first couple days post-tube since he has never taken more than a half ounce in one sitting.  We will have to check-in with the Cardiologist daily and visit the pediatrician every other day so they can weigh and assess him.

He had been doing so well last week that we were very optimistic, but this week Jonah has taken another turn for the worse.  Since Friday night, he has been extremely fussy.  I'm talking non-stop, inconsolable, God-help-me-I'm-dying screaming and crying.  He's not sleeping through the night.  He's always been a good sleeper, but now he only stays down for 2 hours max during the night and during the day maybe a couple 20 minute naps.  Maybe 10% of the time he's awake he's in a content mood and willing to play a little, but it's made it very difficult to work in some bottle and food practice.  Last week we had been experimenting with pears and sweet potatoes, and he really seemed to like it so much better than cereal.  But this week we haven't had those opportunities to try because he has been so upset.  He seems to be in soo much pain, but we don't know what to do to help him.  Our initial theory was maybe the formula.  He has been transitioning more and more to formula, so maybe his stomach wasn't digging it.  So we tried a Gentlease kind and now we're tyring soy, but these changes don't seem to be making much of a difference.  Now we think it could be reflux.  It's definitely the worst it's ever been.  You hear it, see it, and smell it.  And then you can tell immediately the discomfort it causes him.  So if the tube it what is causing some of the reflux, it couldn't come out at a better time.

Please pray for us.  We need all the prayers we can get.  Please pray Jonah can resume sleeping and napping.  Stacie has had no more than 2 hours of sleep for the last week.  She is running on empty and hasn't left the house in 5 days.  Please pray that Jonah feels better after having the NG tube pulled out.  Please pray that Jonah will figure out how  to drink from the bottle and try more solids.  Please pray that we are strong enough to provide Jonah with the best possible chance at success.


  1. I will be keeping all of you in my thoughts and prayers. We were finally able to get Hope off NG feeds, but it was hard and she lost a little in the beginning. We had to switch to formula because my breastmilk was causing her reflux. She is now eating and drinking...still not gaining, but that is because she is much more active (in my opinion). I am glad you are trying and I will pray all is worked out and successful.

  2. I don't comment very often, but I do keep up on Jonah's trials (and yours too). I am really praying and hoping for you guys and your sweet little boy. You sound like you are doing the very best you can. Hang in there! You were definitely chosen to be Jonah's parents and I can tell that you both have so much love for him. One day through all of the sleep deprivation, tears, and struggles there will be a sense of peace. Praying that removing the tube goes well!

  3. Forgive me if I've missed some prior posts if you've already discussed this topic, but... is Jonah on any reflux meds or been evaluated for reflux? Zoe has horrible reflux and without her Prevacid she will not eat and is extremely fussy. I hope he keeps up with the 13 oz per day and gains weight. Praying for the three of you and keeping you in my thoughts.

    Heart hugs,

  4. Hi Stacey,
    Yes, Jonah has been on 2.5 ML of Prevacid daily. Docs say that is the max dose. He really didn't have much reflux until just the last week though, but since we've pulled the tube we haven't seen any yet (knock on wood).

  5. Glad to see he is eating better without the tube! Zoe is on 2.5 as well, the max dose. I hope it holds her over for some time; otherwise, we're in trouble!

    Keeping all three of you in our thoughts and prayers. Keep up the good work and send that positive energy to Jonah during feeds. I know it sounds crazy, but positive energy worked many times during Zoe's feeds.