Today was a good day. But I'm scared to say that because I am terrified that I will jinx myself... but it was. From Daniel's update earlier today, you know that Caroline came off of the ventilator at 3 AM this morning. The NICU nurse practitioner woke me up to tell me this because it was big news. I am so glad I was too groggy to recognize who she was before telling me, or else I would have panicked. She went on to the CPAP, and I was so proud to get her there. In my morning visit she was looking so great that the respiratory therapist tried her off of the CPAP cold turkey. She held on great and was breathing on her own for about 4 or 5 minutes before her oxygen levels began to drop. Caroline was telling us that she still needed help breathing. The staff worked quickly and got the CPAP back on but on low settings. Though I wish I didn't have to experience the trauma of her bottoming out on Tuesday night, it actually has helped. I can handle these small panicky moments so much better because I am more confident in the staff and in her resilience.
Whitaker came to see me after my morning visit in the nursery. He was so sweet and really gave me a pick-me-up that I didn't realize I needed. Children have to be 4 to go into the NICU so he will not be able to see or hold Caroline until she is home. He saw the first picture of her today. He asked if he could please hold her and rock her. I know he is going to be the best big brother. He was also very interested in my c-section "boo boo" and how to put together the breast pump. "Mommy, can you please show me how to put this together?" literally came out of his mouth. So together we put it together and he pushed the button to turn it on. He then proceeded to lift my gown every couple of minutes and say proudly "look, your getting milk". We did not prep him for that at all so he really amazed me today. I am so thankful for all of the help at home with him!
I got this picture tonight from my sweet friend Sara of Whitaker and Nora. Sara fed both of my boys, bathed Whitaker and of course provided entertainment! Thank you!
By the afternoon, Caroline was doing so well that they took the CPAP off again, but this time replaced it with a nasal cannula (the small prongs of oxygen that you have seen a hundred times in patients). With this she has to initiate all of the breathing but she pulls the oxygen out of the cannula for a little bump of O2. Of course I loved that she was making the progress but honestly it was making me so nervous. Her levels were great and she was so comfortable on the CPAP. Just like any normal motherly instinct, sometimes it is hard to sit back and let them try new things. I had to keep reminding myself that the nurses, doctors, etc were not going to let her do anything that she was not capable of doing. I asked them so many times if they thought that she was wearing herself out. My little Caroline had just gone from the ventilator to basically breathing on her own within 12 hours. That just couldn't be right. She has held steady all afternoon. This makes me so emotional because so many people have reached out and prayed for our little girl. And today I truly felt that.
She has started with apnea and bradycardia. This is when her oxygen levels stay the same but she has sudden dips in heart rate. They started her on caffeine today to help with that. She will receive it every 24 hours. She will eventually grow out of this. Unfortunately, this happened today when my brother got to see her for the first time. He was already so timid about being in there (it is a bit shocking) and had already declined my offer to touch her little hand. When the machines started beeping and the nurse began to shake her a little Michael ran out of that NICU so fast. She was fine within seconds so his reaction was a bit of comic relief.
Tonight when I went to check on her she was so alert. I love seeing her blue eyes and rubbing her already blonde hair :)
The nurse was changing her bedding, weighing her, and I got to change her diaper. One of the hardest facts of this experience is that I can't provide for her. I can sit in my room and pump milk that she can't even drink yet. So minimal things like changing a diaper are a bonding experience. She has belly lines in right now and she can not be held until those come out. I was told they generally leave them in for 7 days. I also learned what "hand hugs" are tonight. So when she was worn out from us messing with her and the nurse had her positioned just right for proper spinal lines, I "hand-hugged" her until she fell asleep.
I look like I have man-hands in these pictures, but really she is just that tiny.
On another note!
I really am so happy with the NICU staff at Rex. They have really made me feel so at ease when it comes to Caroline's care. I know she in good hands.
Here are two videos that Caron Hodges shared with me. Her son was born at 30 weeks and she volunteers in NICU. I cried when I watched them because they capture what it's like to be the parents of a NICU baby at Rex.
Mom to Mom video: Caroline's neonatologist is in this video! She is fabulous!
Dad to Dad video: https://www.youtube.com/watch?v=3Ubftv9TWU8