Wednesday, April 1, 2009
Wed, April 1/09
Well on Sunday night I did Evan's bath...and I was terrified!!! OK, I've always been confident with babies...but big babies...not my itty bitty baby! It was just nerve-wracking because I was scared I wouldn't hold him correctly. Thank goodness for the encouragement from the nurse! She guided me through. It was just awkward bathing him in the basin while still in the isolette. I would have felt more confident outside the isolette, but it's too cool out there for little Evan. And once again he LOVED the water! It must be such a familiar feeling for him. THAT'S what he is still supposed to be in within my tummy! He is continuing to gain weight steadily which is great, and he is 2cm longer too. To people who haven't seen him he is soooooooooooo tiny...yet to us we see the changes and the weight and length he is putting on and he isn't AS tiny to us anymore! Once he hits 5lbs he is going to look huge to us, but still so tiny to everyone else! It's funny! I went to the hospital early yesterday morning to be a part of rounds. I wanted to hear straight from Evan's doctor his perseption of things. OH...and on Monday Evan was taken off his highflo air...so no more nasal prongs!! Monday he had quite a few brady's, but they just kept testing him through the day. A few of the brady's he was able to pull himself out of, which is GREAT! That's what we want to see. The others he just needed gentle stimulation. Yesterday he had no brady's up until later last night and then he had one. So that's still good. His caffeine has been increased because his weight has increased. Lucky kid!! He is getting the caffeine and I am drinking decaf if anything! ANYHOW, jumping around here. SO, I went on rounds and his doctor said that he is more than happy with how Evan is doing and said there are no major medical concerns. He said that Evan will outgrow the Brady's/Apnea's, and that they just want to continue to see a steady weight and growth gain...which he is doing "wonderfully". It was so nice to hear his doctor share such encouraging news when the same doctor had to deliver the life changing news to us about Zac. It must be hard on the doctors too. Like in our situation...you deliver the worst case scenario news to new parents on one of their children, and take part in this child's last breaths...then you continue to watch the other child thrive and fight and grow. It has to be odd no matter how many years or how desensitized a doctor might try to make themselves with their patients. These little patients aren't your typical patients. I spoke with Evan's nurse at 5:30 this morning and Evan had a really good night. Just one brady/apnea, so that's awesome! She said that he was awake for a few hours too just looking around and squirming around. He had awake time while Brett and I were there last night too. It's so fun watching him when he is awake! He is trying to hard to focus on things and just goes cross-eyed and then puckers his lips. He makes me laugh when he does that!! I'm still finding it hard to balance home and hospital. I know there is so much to do here, but I have no drive! We started a project yesterday and my mom was a MASSIVE help!! So that was step one. I need to start scheduling my time now so that I am not racing all over the place when I want to be at the hospital. This is where we thank those of you who have been preparing meals for us!!!!!!! This amazing gift has been WONDERFUL!!!!! And SOOOO appreciated!!!!!!! I just have NO time/drive to prepare meals. I'm literally at the hospital from 1-5:30 and then back from 8-about 10pm with Brett. The mornings are rushed with trying to tidy up and do company paperwork. Yesterday I finally dusted and swept and mopped my floor and cleaned out my bathroom. Anyhow, I'm going to cut this off here as I need to start getting myself organized. Please continue to pray that Evan will do well without his air so that his nose gets a break from those prongs!! Pray that his lungs will continue to strengthen, and that his mind will remember to signal his body to breathe through these brady's and apnea's so that they are no longer a situation!! And pray that he continues to gain weight the way he should. He is actually being increased with his feeds from 16mls to 17mls. And please continue to pray for strength and wisdom for Brett and I. The daily struggle with dealing with the pain of the loss of Zac, yet the joy of Evan...it really messes with the mind and emotions.