Wednesday, September 22, 2010

Wednesday, September 22, 2010

No Respiratory Support!

Today, Caleb was breathing on his own for the first time in 34 days! As you may guess, today was another good day.

Caleb had a good night with no problems. This afternoon around 4:30 pm, he was taken off the high flow air. When I left the hospital around 7:00 pm, he was still doing great. He will have another chest x-ray and bloodwork tomorrow to see how his body is tolerating breathing all on his own. It was so nice not to have to fight with the nasal cannula (we spend half our time trying to get it in his nose) and the associated tubing. If he tolerates this well, we are passing a huge milestone!

This afternoon, I didn't think we were going to get anywhere near this point. Caleb's alarms were going off because his oxygen saturations were reading in the 50 to 65% range. He is supposed to be in the 70 to 80% range. I figured that we were back sliding again, like we usually do when we try to wean him off his respiratory support. Luckily, the wonderful nurse we had today was suspicious and changed the oxygen sensor. With the new sensor, he was right where he was supposed to be. I had gotten quite concerned - we have gone down this road at least at six other times, but this time, it was not due to Caleb. Needless to say, I was very excited about the sensor failure!

Because Caleb's kidneys are working better, they changed the formula they fortify the breastmilk with from the special stuff to regular Enfamil. They think that the phosphorous build up they were seeing previously should be taken care of now and regular formula will work. This change now should allow us to take the formula out of the picture when we begin working on feeding changes.

Most heart babies are on what is called a "complex feeding protocol". It is a standard of building them up to normal size and spaced feedings. The nutritionist said that the first step would be to put Caleb's feeding tube into his stomach instead of his small intestine and feed him with continuous feeding for 8 hours. The nurse practioner said that Caleb will be staying on continuous feeding for 24 hours or as we call it "Caleb's ultra complex feeding protocol". I think the nurse practioner has him figured out!

If things go well tonight, Caleb could move forward on the feeding changes and may be able to move out of Moderate Care as soon as tomorrow. The nurse practioner said that the feeding changes will take us through the weekend. If things go well, we can discuss the "d" and "h" words - discharge and home. We have now heard these words two days in a row. We MAY be nearing the end of our first hospital stay! Please pray for strong lungs and a cast-iron stomach!


  1. I'm busrting with joy and am so happy to hear all these wonderful answers to prayer- Priase God!

  2. Jen he is SO cute--Phil all over! So glad to hear this positive report. We keep all of you in prayer constantly! Praise God for His mercy and grace! It is hard to believe it's been 5 weeks! What a journey this little guy has taken you on already! Stay strong and hug all those other cuties you have for me! I hope school is going great!
    Rachel Mullins

  3. Great news this morning!! He is so cute with those big brown eyes and looks healthy in spite of all his problems. Breathe, and relax a bit.
    Aunt Marie

  4. What good news! He looks great too! We all continue to pray for you, and anxiously await meeting him!


  5. Oh Praise be to God!! Brought tears to my eyes! You guys have been through so much and have been such a testimony to all of us!! We can't wait for you all to be together!!! God bless you all!!