Life as we know it…

Life as we know it now consists of days in the hospital room, sweet moments with our precious boy and eating. Yes, you read that right-eating. It seems that we are living life on repeat with little difference from one day to the next. We’ve settled into a routine of getting ready, eating a fiber bar for breakfast, heading to see Evan, waiting on rounds, eating, sitting in Evan’s room, eating, doing laundry and then sleeping. Repeat. Our weekends are typically filled with visitors so they are a little different and we do try to get out from time to time but that’s basically what we do. It’s so hard to leave Evan, even to go sleep or eat. We just want to be with him ALL the time. Even though he sleeps 20 hours out of the day! (at least)
For the past week or so he has been stable with not much changing. His electrolytes have remained about the same, they’ve been weaning him down on his vent settings, and increasing his feeds. This is what they say pretty much every morning during rounds. He’s been much more alert after coming off his pain medicine but he’s still comfortable because they’re still giving him some medicine to keep him comfortable. He has proven himself to still be a little fighter by extubating himself twice! We weren’t here for either of those events but they had to intubate him again and apparently it was quite an ordeal. Last Friday night he did have an event we were here for. Mom and I were just sitting in his room and I was about to pump and his monitor started going off because his heart rate was dropping as well as other things. Mom ran and got the nurse (who was on her way but not quick enough for us). She came in and called for help. They started bagging him but that wasn’t helping so they called for the nurse practitioner as well as the fellow. So all these people were in here and I texted Brent to get back in here because I didn’t think Evan was going to pull through. His heart rate continued to drop. They finally were able to intubate him and get everything back to how it was supposed to be. That had to be the scariest thing I’ve ever experienced though. I felt like I was having an out of body experience. Kind of in shock! The dr during rounds said the next morning that he felt like it was probably a mechanical issue with the tube. Sometimes mucus gets in them or he may have spit up and aspirated. All that I do know is that it happened in a split second and was scary as all get out! It definitely made me not want to leave anymore! With all those events they STILL wanted to try and get Evan off the ventilator so Monday they attempted that (putting him on CPAP). Brent and I were in here and he did fine for the first few minutes but he didn’t last and they ended up having to intubate him again. Dr. Black said that she felt that it was not his lungs but actually getting the air to his lungs. Since Evan has been intubated his whole little life he may have some swellings or scar tissue where that tube has been. They are going to try giving him steroids for a few days then try to extubate him again on Friday. (( Prayers that this is successful)) Otherwise ENT will have to come and look at him and see if he has scar tissue from the tube. I’m not going to borrow trouble and worry about this until we get to this point!! Just going to continue to pray that the steroids help and he does well extubated next time!!
Also, on Tuesday they did a sweat test because his newborn screen came back abnormal for cystic fibrosis. This was definitely a scary possibility for us because the gene for CF is recessive and we were a little concerned about what this could mean for our future children as well as what it could mean for Evan. His sweat test was negative though! Praise The Lord!!
Well the doctors are near for rounds. I’ll continue to update as there are changes.
Keep us in your prayers. I definitely feel like Brent and I are beginning to grow a little weary of this hospital life!

Happy One Month Evan!

Today Evan is one month old. What a blessing we’ve been given! Every day for the past month we have just thanked God so much for our little bundle of joy. Even though it has been a roller coaster ride we have so enjoyed every single second we’ve spent with Evan. He’s taught us so much and I know he will continue to bless us! He has remained pretty stable over the course of the past week or so. His blood gases have been good so that has allowed them to go down on his vent settings. Also, he’s been tolerating his continuous feeds and that is also good news! All his labs have been about the same for the past week so not much has changed. We are thankful for that! Over the weekend they did begin weaning him off his pain medicine and now he’s completely off it, so he’s been having withdrawals and that’s been difficult to watch. Brent and I hope this passes quickly. We’ve been praying for that because I don’t like seeing my baby going through that. Unfortunately we haven’t been able to hold him for the past week because he’s been more agitated than he had been. As selfish as we want to be by holding him we know we have to do what is best for him and let him rest. It stresses him out to be held or touched and coming off the pain medicine has just made these things even more stressful experiences for him. Sunday morning we arrived to find out that he’d pulled his tube out the night before and had to be intubated again. They had a difficult time and several attempts were made before they were successful. I was a little agitated because no one had called and let us know after this happened. I have made it very clear that they are to call us when he has a bad night or an episode of some sort. Even putting my phone number on a piece of paper taped on his wall. Needless to say, I reiterated to the staff that I NEED them to call when anything like that happens. I just need the peace of mind that I can go get some sleep but will be informed of any changes like that. The nurse informed me that it must have just been forgotten because she’d been told that the nurse practitioner was going to call and obviously didn’t. I felt better and I know that the nurses and nurse practitioners are human and can forget things just like anyone else! I think I just got off on a tangent..
The outpouring of love from our family and friends has been so awesome. Evan has had many family and friends come to meet him! We are so happy that the hospital allows visitors!

Here is a picture from Evan this morning. He had an ok night. A little fussy from being off the pain medicine but hopefully he will just get better and better and not be too fussy today! We are praying for a good day! Waiting now on doctors to make their rounds!