Avery is 13 weeks old today!
Well we had our meeting with the doctor, nurse practioner, occupational therapist, respiratory therapist and social worker today. They didn't tell us anything that was a big surprise, it just made us sad because they confirmed Avery is not coming home anytime soon. There is probably a 99% chance that she won't be home by Christmas. She is making progress and has come a long way from where she was, but she is taking her sweet old time. I think she takes after her Mommy sometimes. The occupational therapist seems to like how she is coming along on her feeding. We should have the results of the sleep study by tomorrow night.
They did mention that when she becomes more stable, she will most likely be moved to the Children's rehab facility in Shaker Hts which we aren't very excited about. It is more difficult to get there than Hillcrest. They want her to go there because she would be working more closely with Physical Therapy and Occupational Therapy. It is closer to a home atmosphere than at the NICU. They would be able to work with her on the ground on a mat and do stretches with her, etc.
After the meeting, we met with the Occupational Therapist and watched her feed Avery. She described how to use the bottle and told us how to watch Avery for cues. We will be meeting with her next Wednesday to learn more about the feedings and she is also going to show us how to give Avery a massage. She said Avery really enjoys it and it definitely calms her down when she is upset.
The nurse manager then came in. Tim and I were really turned off by her. The first words out of her mouth were that Tim and I don't spend enough time at the hospital. She wants us to be there and learn about her care, etc. First of all, I don't believe she has ever had a child in the NICU before so even though she works in the NICU, she really has no clue what we are going through. There are a couple nurses here that have also had preemie babies and they said it is much different being a nurse in the NICU than being a mom with a baby in the NICU. They said they were very stressed out when their babies were here even though they knew everything that was going on.
Also, Tim and I are working fulltime. I need to keep working to have insurance to pay her hospital bills. She doesn't realize that half of the parents in the NICU are not back at work. Also, most of the babies in the NICU have only been there a few weeks, not 3 months like we have. If we weren't working and our baby was just born, of course we would be there all day. They want us to be there in 4 hour increments not just an hour here and there. They also want us to sleep over and spend a whole 24 hour period in the NICU.
Mommy and Daddy are proud at how far I have come.
I'm sure this has been a very difficult day for you all. I just do not think it is realistic to expect you to be there 4 hours at a time, especially with your new work schedule. I know it's important to learn more about Avery's care but they also need to be understanding that your situation is different than most in a lot of ways. She's basically asking you to skimp on sleep and/or neglect other responsibilities and that's just going to make you more stressed out. Please feel free to reach out to your friends and family if you need help at home, with the pets, want a buddy to keep you company at the hospital, need someone to make dinner or bring you food at the hospital or anything else. I know there's a lot of us who are here for you!!! *hugs*
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