....Sorry for the Lack of Updates....

Day 59
Weight: 2 lbs 12 ounces

Thank goodness for weight gain! Because of the weight gain, the doctor has increased his feeds again and has added an extra protein to help him grow quicker. He is behind where he should be on weight gain but I feel that's understandable with all that he has been through.
This is day 8 off the ventilator.....and my goodness have the last few days been a roller coaster! Instead of being on the ventilator, Samuel is on a nasal cannula - air flow into his nose. When they took him off the vent, they put him at a flow of 3. Throughout the next couple of days they lowered the flow and then raised it....lowered and raised it. Today we are back to a flow of 3. Samuel came off the steroids three days ago and has begun to desat again (drop his oxygen level.) He is supposed to be outgrowing this soon. He doesn't seem to be in a hurry....
Wednesday night we had an intestinal scare - Samuel had blood in his stool. He was also dropping his heartrate (called a brady) frequently. We had to wait it out to see what was going to happen - and luckily nothing did. We are still very nervous about Samuel's gut. A lot of Samuel's sickness began with his bowel perforation. By God's grace we have been lucky enough to avoid another catastrophe.
The big topic right now is the diuretics that the doctors have had Samuel on. He is having to have a very strong diuretic called Lasix. Lasix is very hard on the bones. (In fact, a baby next to Samuel just broke a bone last week because of it.) Without diuretics, Samuel would retain fluid. Some of that fluid would stay in the lungs and cause them to have to work harder. The nurse practitioner tried to switch from Lasix 2 times a day, to once a day - but Samuel's urine output decreased dramatically. Now they are trying to give another diuretic that isn't as strong as Lasix in place of it once a day. It's all a balancing act - I just hope they can figure out what Samuel needs soon. Peeing too much means not enough weight gain, losing electrolytes, and his CO2 rising. Peeing too little means more desats, wet lungs, and hard work for his heart.
Michael got to hold Samuel for the first time yesterday. Usually we hold Samuel skin-to-skin so that he can take our body heat. This time, the nurse handed Samuel to Michael all wrapped up. It was so funny and sweet to see Michael hold him. It took him a while to relax!

Yesterday around noon, I left to go home. I was so scared to leave but too exhausted to stay. In the last eight weeks I have been home 2 days. I pray that nothing dramatic will happen....that only leaps forward will be made in my absence. I pray for rest and peace for Samuel while I'm away (he is very active and cries often.) I pray that he has only the best nurses working with him - that they will be attentive to his needs and watchful of his vitals.