Still Stuck

God continues to teach us patience as we pray that Noah and Nichole can come home soon. It has been over a month now and although Noah is doing really well, he is having difficulty retaining all of his feeds and therefore still needs his IV to subsidize his fluids.

There is no "pause" button on life though. Kailyn and Joshua and I miss their mom and Noah a lot and ask for prayers that we can have them home soon.

If you are reading this and wondering what you can do for us, just let me say this. God is good and has given us Noah and all the miracles done through him so far. Do not let the glory of God be overshadowed by anything we may consider hardship. Share Noah's story and more importantly God's power and goodness to those around you everyday.

Surgery #4 Complete

Noah's 4th major surgery was done yesterday to place a portacath under the skin on his shoulder into his internal jugular for easier circulatory access. The toughest part of the surgery according to the surgeon was gaining the IV access (which what the new port is there to do) to sedate Noah for the surgery itself. After an hour and many many needle sticks, they finally found one in his scalp and the rest of the surgery went smoothly. Thank you to all who have been praying for us as Nichole and Noah have been in the hospital over the past three weeks. Continue to pray that they both can be home soon.

Surgery on Monday

We have Noah's surgery for the port scheduled for Monday around 1pm. The surgery should take about 1 1/2 hours. He will go to PICU for at least one night after the surgery and then he should be able to go back to the ward on Tuesday. Please pray that all goes well. Noah has been spiking fevers again, but his chest sounds clear, so surgery should still be a go. We are really looking forward to having this port in. No more IV starts and multiple pokes every couple of days for Noah!!
We also got the results from Noah's sleep study. He is having both obstructive and central apnea episodes as well as many hypopneas. So this likely means we will go ahead with the jaw surgeries before any palate repair. We will meet with our ENT and Plastic surgeon in April to discuss the plans.