Taking the Good with the Bad.

We had a much better week with Logan.  He has not had any crying fits at all this week.  He was just like a normal baby.  The medicine he is on (a beta blocker) is really helping him.  It blocks some of the hormones that we have that get you worked up so he is much calmer this week.  It also has something to do with it breaking a vicious cycle of him getting worked up, turning blue, getting uncomfortable and then crying even harder which then it turn makes him that much more miserable.  So this all sounds like great news but there is a down side.  Because he is much more comfortable he is sleeping better and for longer periods of time, which has equated to him not eating as much.  He has not gained anything in the last week (still at 8 lb 12 oz) and the pediatrician brought up feeding tubes.   Ughhhh…..I hate feeding tubes.  I really don’t want to go there. 

I HATE NG TUBES. 

They are the ones that go up the nose and down their throat.   Yuck.  They come out all the time and they are a total pain.  So the ped. wants him back to getting weekly weight checks, meanwhile I going to try my damnedest to wake him up every couple of hours and try to feed him. 

I am tying my hardest to relax, breath, and take everything one day at a time, but IT IS HARD (I would say that most days it is almost next to impossible).  I which someone would invent a brain switch so that at least at night when I am trying to sleep I could flip it off. 

Here are some cute pictures of Logan getting a bath.  He really likes the bath and loves to look out the window over the sink. 

5 thoughts on “Taking the Good with the Bad.”

  1. One of the first things we were told about heart babies is that they are lazy and will sleep as long as you let them. We fed Gabe every three hours whether or not he was awake. Sometimes he ate better when he was asleep. Since he was on formula, the bottle was only good for an hour and we took advantage of every minute of that hour to get as much into him as possible. I hope you can avoid the tube, too, but it’s all about what’s best for Logan.

  2. I definitely feel for you on the ng tube. We battled that for months until he had a g tube placed. Made things a bit easier. Less fighting but still the same amount of work.

    It is definitely hard to shut down at night and let go of the stresses of our day to day issues. Hang in there. Remember one day at a time! If you ever need to talk just give me a shout! Sometimes it just helps to vent about it.

  3. Texas Children’s Hospital Dr. Decker is the best cardiologist. He knows a lot about Heterotaxy. And Texas Children’s is one of the best hospital, the staff is amazing.

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