Wednesday, December 15, 2010


Evan has made some major progress today. They have removed his chest tube, removed the line in his right leg, taken him off of milrinone, and stopped all of his medicine drips! He's now taking 20mg of baby aspirin orally and his seizure meds; and that's it! He's been stable all day and this was a huge step towards coming home. The only thing left is to remove his pacing wires and central line, and then learn to eat. I have known from the beginning feeding was going to be an issue, but I didn't realize how big of an issue it is. Last night Evan barely ate anything by bottle and had to have his whole bottle go down his tube. This morning I fed him and he took 17 out of 32mls by the bottle, which was awesome. They upped his goal to 40mls every 3 hours and it's been very challenging. He only took 5mls the second time, but in his defense he was asleep the whole time. They called in a speech therapist to work with Evan and since they gave him a dose of fentanyl to take the chest tube out, he was of course knocked out for that feeding too. She's going to come back tomorrow morning and try again. Evan only took 2mls this last time..

Before I get this off my chest, I just want everyone to know that I am still amazed and grateful for how fast Evan is recovering. He is only 1 week post-surgery and has made tremendous progress! I'm by no means complaining, just frustrated. An occupational therapist came today at the same time the speech therapist was here trying to work with Evan. They both really, really frustrated me and unintentionally hurt my feelings. Evan is only 2 weeks old and has endured more than most of us have or will ever in our lifetime. The OT had a negative comment for every movement or facial expression Evan made. She kept saying how he was showing how stressed he was and showing he didn't want to be touched. She was telling us how he needs to lay certain ways because he doesn't know how to lay like a normal baby would. And then she said she would come and show me how to hold MY BABY. No thanks. I've only been able to hold him a handful of times, and he has had lines and tubes coming out from every limb of his body; I've been too scared to cradle him or move him!!! He has a fresh incision running down his chest, of course I'm going to be extra gentle with him. Then it was the speech therapists turn to rub salt in my wound. Evan had gone 13 days without eating. Moms are encouraged to nurse their babies within the first hour of life! But not me, not my baby. He survived on liquid nutrition. He has also had a breathing tube shoved down his throat for 11 days, I wouldn't want anything in my mouth either if I were him! I felt attacked, like they were telling me that I wasn't doing something right. How am I supposed to "teach" my baby to act like a baby?! Poor little man, it's not his fault.. It just breaks my heart to see him stare at me when I'm trying to feed him, it's like he's asking me "What am I supposed to do with this?"

It's so hard to stay strong and keep a positive outlook sometimes. A lot of days I just want to lay in bed and cry, or drive far away. But I am here for my son. I may not be as strong as I should be, but I'm here...


  1. You are strong and Evan loves you and ignore the insane comments they are making. I don't blame you for being upset...I would have been outraged. I was super-sensitive when Hope was in the hospital and I took it out on a few nurses. I don't regret doing that at all. You are Evan's advocate and know what he needs and what he has been through better than any therapist.

    Hope came home on a feeding tube and did much better with a bottle at home. She would take about 10mls at the hospital, but would take the whole bottle when we got home. She was only on the tube for 2 weeks and then we took it out for good. I truly believe if you go home on the tube...Evan will do the same.

    Evan may be behind for a little while, but no worries. He has been through a lot in his short life and deserves to get a break. I figure Hope has spent 2 months in the hospital between all stays, so I set her goals at what a 13 months old should be doing (she is 15 months).

    I know it is hard to stay positive, but Evan is doing GREAT! I am going to continue praying that he will be home with his family for Christmas.

  2. My daughter, Anna Grace, is now 11 months old and has HRHS. She had a tough time with feeds as well. We stayed in the hospital for weeks just working on feeds. It was to the point where they were talking about a G tube to get us home. But, after a few weeks of working on it and working on it I finally convinced them to take out the NG tube even though she wasn't meeting her "goals" just to seee if that would help her be more comfortable eating. They said it could come out for 24 hours. If she didn't meet her goals then it would go back in. But what do you know, it did the trick! But, she was 5 weeks post-op before we tried that. Be patient... with the baby... with yourself. Ignore the comments. This is common and normal. The therapists should know that......