The other day, Collin and I got fed up with the nurses' and doctors' inconsistencies in how they were feeding Lennon (or not feeding her).
Thursday night, I go into Lennon's room for her 8:30PM feeding. The nurse has already attempted to feed Lennon and said she was not interested. So the nurse already had the feeding tube hooked up. This is about where I lost it. The nurse and FNP came in to talk with me. I told them that I was tired of the inconsistencies and that everyone seems to have a different rule. The FNP said that they were supposed to be going based on Lennon's cues (chewing her hands, waking up at feeds, etc). I asked about the fact that I had come in to feedings where Lennon was wrapped with her hands by her side and her eyes were wide open, but she was hooked up to the tube. I am pretty sure this is where the nurses thought I was crazy...
I asked if they would bring in an occupational therapist to address the feeding concerns. They mentioned that it was combined with the physical therapist. I told them that she was useless and gave very generalized goals based on a child development book; that the PT was not giving individualized goals for my daughter. The nurse thought I was discounting every PT. I told her that I have worked with some wonderful PTs, but I did not feel that this was one of those.
The next day while I was having a procedure done, Collin talked with Dr. Young (or as we call him: Dr. Feelgood - note the sarcasm!). He was not really happy with us. Collin said I scared them. I was just very honest with how I felt. Collin basically demanded that they feed Lennon every single feeding time. I went to a feeding later and Dr. Feelgood came in. I asked him about a feeding consult and he had requested one from UNC, but did not feel like it would do any good. I really don't like him.
Yesterday, Van and I went to Greensboro to spend some time with family and to trade some things with my sister. We had a blast! Van and Logan played with Shelley's kids and were very well behaved. They argued a little, but worked it out amongst themselves.
I got a text from Collin later that afternoon saying that Lennon ate 4 out of 4 feedings and 6 out of the last 8! That is amazing progress!! Collin fed her a 5th feeding and she took all of that too. I could hear her crying in the background because she was hungry. What a wonderful sound that was!! Collin said some of this has to be due to the amazingly patient nurses Lennon has had (Meg and Rosemary - we have loved Meg from the start, but never met Rosemary). Collin had to work last night, but I was up pumping when he got home, so we decided to call the nursery and see how Lennon's feeds were going. She had taken all of her bottles for the last 24 hours! The nurse even took out the NG tube, so there is no way they can feed her the lazy way. She gained only 1/2 of an ounce, but it is still gaining :-)
Collin and I were talking later. Yes, this may just be coincident but we can't help but feel like this is because we put up a fight. I know the nurses talked about the "lightbulb" that would come on in regards to feeding. But it is hard to have that light come on when you aren't giving the kid a chance to experience it. I am a bit of a stickler for wanting consistency. I think the nurses and doctors get that now.
Today, we are going to clean the house and get everything ready for Lennon to come home!
You did good! And you will keep on doing this... It's hard, so very hard to stand up like you did and it can feel very lonely, but you are Lennon's voice and you told them. So pfft to them ;) I have been and will continue to be in your shoes, with making people stand up and take notice. You are not there to be best friends with them, but to do what it right for your child... HIGH FIVE MOMMA
ReplyDeleteGood for you. While most of the nurses and doctors are awesome, it's very hard when you have a doctor for 3 weeks, then start over with a new group for 3 weeks, etc. And having different nurses every day too is hard. You do have to stand up and speak up. Most nurses take things seriously and treat these babies like they are their own. Some, on the other hand, it's just a job. So don't feel bad about expressing your feelings. Don't forget that she is YOUR child. Sometimes you can lose that sense of being the parent in this type of situation. Plus you are stressed and tired. So it's all to be expected! Praying she is home with you soon!
ReplyDeleteThanks ladies! I normally am pretty outspoken, but with Lennon I have been less pushy. I think I doubted my instincts. But when Collin was behind me too, I knew we had to say something. Problem solved :-)
ReplyDeleteLennon has taken all of her feeds by mouth since Saturday at 5:30AM!! She passed her car seat test last night and is still gaining some weight (slowly, but still gaining!). We are going to push for her to come home today! Wish us luck!!