Caleb came off the respirator Saturday evening. He is now on the high-flow nasal cannula.
He has had a couple of really good days.
His physical therapist is making him new hand splints. He has outgrown his old ones. (He has splints because he keeps his hands in fists so much. They want the ligaments in his hands to stretch, so he wears the hands splints a few hours everyday.)
He is scheduled to have a neurological consult sometime soon. They have not needed to tap his head (to remove the extra fluid caused by his brain bleeds and hydrocephalus) since February 9. The consult is to decide if it is time to remove the device they have in his head to drain the fluid.
He should start back on oral feeds soon.
Many people have asked how they can help. One way to help it is NOT ask when Caleb is coming home. The first time some one asks me that everyday it's ok. But, by the 5th time I'm asked that everyday it's not good. It just rubs in the fact that he is not home and if makes me feel like I'm a very bad mom because my baby is not home. I know people "mean well." But please DO NOT ASK! You will know when he comes home. I have no idea when he will be home and asking me the same question over and over again just upsets me - even if you do mean well.
7 comments:
Thank you for the new information on Caleb. He has come a long way.
I know you are frustrated that Caleb isn't home yet. No one thinks you are a bad mom. I think the nurses just enjoy having him around. Please cut us some slack, though, when we ask about Caleb. We just want you to know that we are still thinking about Caleb. We mean it to let you know that we love you, not to drive you nuts! We know that no one is more anxious to get him home than you are. What if no one ever asked about him? Would you still know that we care? Love you, MAC
You have a lot of people that love and care about you and Caleb. All we want to do is reach out to you. No one can pretend to know what you've been through and are going through. But be careful not to shut out friends and burn bridges, the time will come when you will want them and need them again
I can speak from experience. Answering the same questions over and over again from well meaning people can cause you to break down into tears at any moment. I did not spend near as much time as Elizabeth has spent in the NICU. My situation ended rather differently. I answered thouse questions for quite some time. You just want them to stop. You know people mean well, but you want the questions to stop. You don't want anyone to feel sorry for you or your baby.
Elizabeth has been kind enough to set up this blog to share the ups and downs Caleb has with us. I know that putting "pen to paper" is not always easy. I know that not having your baby home is harder than that.
If you have not been there, you do not understand. You may think you do, but you don't. If is harder than anything you have ever gone through. All Elizabeth is asking for right now is a little understanding. Give her a break and just be there to love her, Caleb and Cary.
Your comments may not seem harsh, but to someone who's emotions are exposed at every moment of the day, they are.
Remember all Elizabeth is asking is "Don't ask when Caleb is coming home" Believe me when he comes home EVERYONE will know.
....and she's pregnant. Cut her some slack and respect her boundary.
I just wish I had known that you were even having a baby or that you have such a wonderful and cute son! I look forward to coming 'home' myself and seeing his beautiful face in person! Keep the updates coming!
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