Disappointed

We waited a whole week to see how the shunt was working.  We were so happy that we had gotten through it without any complications and had the ultrasound on Tuesday to see the progress.  One of the shunts was still in the same place (most of it in the chest cavity, the one we knew was not working) and the other one was unfortunately floating around in the fluid.  We watched as Caleb slowly moved his hand towards it and pick it up and wave it at us.  He was literally playing with the other shunt.  Now we don't know for sure, but we are assuming he pulled it out himself.  I didn't know whether to laugh or cry.  It's so nice to see such an active little guy but so disappointing that the shunt didn't stay in.  Also the fluid was almost exactly what it had been before, so we don't know if there was ANY benefit.

The good thing is that, again, the fluid is stable and is not progressing.  I had another ultrasound today and again, things are stable.  My doctor is out of town this week so we had his partner seeing us.  This doctor told us that most babies with this condition are more sick, less curious, less active, and are less likely to "play" with the shunt; however, Caleb is very healthy otherwise.  We are so incredibly thankful that he is doing so well, but do wish he would just leave the shunt alone.  Every day the fluid is there is another day his lung is not developing properly.  The next step is to attempt to put the shunt in one more time... I can get through it!  If Caleb pulls it out again, the doctor said the benefits of doing the procedure no longer outweigh the risks and we have to move to plan B.  Plan B probably being serial drainages of the fluid with a smaller needle, maybe even twice a week.  The purpose of having the shunt in is continuous drainage of the fluid.  However, if the shunt only stays in for days (or even hours) there is no benefit.  If we could get it to stay in place for a few weeks, the doctor said that it would start to scar down and it would be much more difficult for Caleb to pull out at that point.  We have another appointment on Monday morning with the potential of placing the shunt again, depending on positioning.

This has been one of the most mentally exhausting things I have ever went through.  The past four weeks have drug by.  I am constantly waiting for something, but I honestly don't know what I'm waiting for.  It is very strange.  Ryan and I make a concerted effort to take our minds off of everything, but it is almost impossible.  We are so sad that the shunt did not work as this gives our little man the best chance.

Jonah has kept us sane.  I love that little boy so incredibly much.  He knows Mommy has "Baby Caleb" in her tummy and to be gentle with Mommy.  He has even started to sing "Jesus Loves Me" to my tummy, it's so moving how aware he is.  We are planning to bring him to the Thomas the train exhibit this weekend.

Thank you all again for your support.




















Another picture of Caleb, this was right after he took his foot out of his mouth.  What are we going to do with this wild man?


















Jonah and Ryan in Branson for Ryan's 30th birthday.   It was very nice and relaxing.  We even got to see a production of "Jonah", the bible story.  Jonah liked it right up until Jonah gets swallowed by the whale and then it was too scary and wanted nothing to do with it afterwards :)

Love,
Ryan and Raquel

Prayer requests:
1)  If we have another shunt placed next week that Caleb can let it be!
2)  Give us the strength to get through this time together as a family and be stronger because of it.
3)  Put all our trust in Him, who lifts us up.
4)  Caleb stays strong, active, and otherwise healthy