Wednesday was another care team meeting. The surgeon came in briefly to describe his plan for Natalie's belly recovery. He started backing out some of the tubes. When they are no longer draining fluid the tubes will be removed and ideally the incisions will heal on their own without stitches. She will remain on the antibiotics until at least 24 hours after the tubes are removed.
After that, they will watch for signs that her stomach is ready for food again. The suction on her stomach (the tube that runs from her belly and out her nose) will be moved from suction to just gravity. If she tolerates that the tube will be removed for some time and we will see how she does. At some point someone will have the guts to try feeding her again. The process will be veeeeery slow. There is a chance that she has developed strictures or blockages from the NEC and we will not know until feeding is resumed. In the meantime, we wait for signs that her belly is waking up. Ideally she will grace us with a bowel movement but that may not happen until she is eating again. Another complication is that she remains on high levels of sedation and that slows the intestines. Hopefully she will continue to need less and less medication to be comfortable.
She has, however, passed gas three times in the past two days (well, three times that I was present for). I take that as a very good sign that her belly is starting to move again. I have never been so happy to hear a toot in all my life!
The rest of the care team meeting was run of the mill. In general people feel she is recovering from the NEC much better than anticipated (although I hesitate to put that in print and tempt fate). Basically from here we wait and see what Natalie does and then respond. One doctor commented that she is "writing her own book." No one dares predict what the child will do. They did spend a few minutes thinking of clever adjectives for her.
All the necessary paperwork is compiled for the second opinion. The doctor at CHOP should receive it early next week. Praying and hoping that he has some insight into our little girl.
After the meeting we returned to her room to find her very uncomfortable. She was requiring A LOT of suctioning and was miserable. Her CO2 had been high again all day for no good reason. That is such a scary feeling.
We left the hospital feeling terrible. Sometimes it is just a matter of getting through the night and hoping the morning brings better news or a new attitude. I kept reminding myself that we have had terrifying times before and come through to the other side.
Today was, in fact, better. Her morning CO2 was normal and she tolerated another MAP wean (now down from 22 to 20!). I spent the afternoon with her and enjoyed a lot of awake time. Her O2 requirements were better than they had been this week (as low as 38%) and she was much more comfortable than the previous night.
I was able to help with weighing her and changing her linen (always nice to have a fresh bed). While we were getting ready I noticed a dark spot on the back of her head. I looked closer and to my horror discovered a pressure sore the size of a dime. It looks terrible. She is very limited in positions so I understand that she is vulnerable to sores but I do not understand how one could go unnoticed this long. It is being treated with ointment and I asked the occupational therapist to come in a take a look at her positioning. She is supposed to have a gel pad under her head but somehow it keeps disappearing. Yet one more reason why I can not wait to have her receive her trach and be able to move more like a normal baby.
In other news she had a double lumen PICC line placed Wednesday so she no longer needs peripheral IVs. Hallelujah! Once again it required a cut down. The area above the incision is red and swollen so she is on a 3 day course of...wait for it....vancomycin to ward of infection. I think this may be her 10th course of vanco. It is incredible.
I finally was able to record the books for her tonight. When she developed NEC it became a low priority and she was honestly too drugged to know what was going on around her. I am glad to finally have it done so hopefully she will be more familiar with my voice.
I reworked some of the stories to fit her circumstances. Baby books are not written with critically ill babies in mind and I felt she should have some stories that fit her and her world.
I retold P.D. Eastman's Are You My Mother? with Natalie in mind. I am typing it here so I can remember it for her later. Humor me.
A mommy sat by her baby’s crib. The baby slept. “I must pump some milk for my baby girl to eat!” she said. So away she went.
Inside the crib, the baby woke. “Where is my mother?” she said. She did not see her anywhere.
She moved her arms and kicked her legs. The baby girl could not cry, but she could watch patiently.
“Now I will look around and find my mother,” she said.
“Are you my mother?” the baby girl asked a big machine. The oscillator just tissed and tissed. It did not say a thing.
“Are you my mother?” the baby girl asked a nurse.
“No, said the nurse, "but I will take very good care of you.”
“Are you my mother?” the baby girl asked a doctor.
“I am not your mother. I am a neonatologist. I will do what is best for you.”
“Are you my mother?” the baby girl asked a respiratory therapist. "How could I be your mother?" said the therapist. "I am a man!"
The baby girl stopped to think. The oscillator and the nurse were not her mother. The doctor and the respiratory therapist were not her mother.
“I have a mother,” said the baby girl. “I know I do. I will find her. I will. I will!”
Just then the baby girl saw a big thing. “YOU are my mother!” she said. The big thing just said “Stand back, X-RAY!”
“Oh no!” said the baby girl. “You are not my mother. You are a scary X-Ray machine. The machine took a picture of the baby’s miraculous lungs and then left the room.
Then something happened! The glass door slid open and the mother came back to the baby’s crib.
“I know who YOU are,” said the baby girl. “You are not an oscillator or a nurse or a neonatologist. You are not a respiratory therapist or an X-Ray machine.”
“You are a Mommy and you are MY mother.”
The mommy kissed the baby’s cute bald head and they were both very happy.
ps I gave up on editing this post. It is what it is.