"Blessed is this life--and I'm gonna celebrate being alive." --Brett Dennen

They had to put Isaac back on the CPAP to be held instead of the cannula. His blood gas was coming back with too much CO2 which means trouble, so they decided the cannula was no good for now. Totally helpful for Isaac, but also a total bummer. He loved being off of it so much. He hates the CPAP. Can't say I blame him, it's super annoying. It's sad to have him all hooked up again after being able to hold him without the CPAP. It's certainly better than no holding though so I will take what I can get.

They are definitely concerned that he is still on the CPAP and on just about the highest setting. Discussion is beginning about where to go from here. There is of course the hope that Isaac will wean himself soon, but there is also the possibility that he won't and then what? They are discussing a round of steroids for him which should help clear up the fluid and inflammation in his lungs due to his lung disease.

Isaac's medical team is soon to include a pulmonologist (lung doctor) who will advise on where to go from here and Isaac's potential long term care.

The liver ultrasound came back totally normal (whew!). But, he had a full CBC (blood work) yesterday and again today that did not look good, so they are currently trying to figure out why. He acts fine, needs very little oxygen (28-32%), but there could be something going on. They don't think he has an infection, but they can't rule it out either. We should know more in a couple days. If he did have an infection, it would most likely be something mild like a Urinary Tract Infection, but at this point just the word 'infection' turns my blood cold.

He's been tolerating the quarter breast milk fine for the most part. There was some irritation, so they waited an extra day to increase the amount. Today he was fine, so as of tonight they will be giving him half breast milk at every feeding. Yay! They decreased the total amount to 33 mls while he still has so much fluid in his lungs hoping it will help.

He is 4 lbs 5 oz. and totally loves his big boy crib. They snuggle him up nice and tight with blankets and he loves it. He hardly makes a peep. As Jonah says, "Baby Isaac is cozy." Jonah is into 'cozy' things lately. His jammies, the bathroom rug, blankets. It's funny.

Jaska and I are getting tired. It's tough to keep up this pace. As time goes on it's getting harder and harder to keep my chin up. We're still staying positive and just trying to get through each day. We really need a jump start. Each day of this last week it feels like we're dragging just a little bit more than before. I will never EVER complain again about being tired.

We're hanging in there though. It helps so much to go and see and hold Isaac every day. It helps when Jonah is so awesome. It helps when we have the support and prayers of so many. It helps when I can take a moment during the day and just be grateful for what I have--a wonderful, beautiful family, a growing little miracle, wonderful friends, and a God who is watching over me and my family every day.

I am really trying to stay positive--I have been given so much. But days like today are just hard and the only thing I can really do is just go to bed early and try again tomorrow.