Summer is continuing to do well, all things considered. She has become a favorite in the NICU...many nurses and others come to coo at her and smile at her sweet little self. The nurses and docs are very pleased with her strength and ability to bounce back from 2 traumatic surgeries. She has been off the breathing tube now for 5 days and needing only a little extra oxygen. She has gained a little weight and is right around 3+ pounds. This last Monday marked 4 weeks old already! Her face is starting to fill out and her arms and legs are not quite as spindly as they were. She is back to sucking on a binky, wrapped up, and cozy in her incubator...I hold her as much as possible. :)
Big brother, Andrew, and SummerThe last few days, the docs have talked to us about her PDA (the blood vessel they closed at Evergreen with medication right before she got NEC) They have heard a loud murmer in her heart leading them to believe her PDA has reopened. Just to refresh your minds...the PDA is open while a baby is in-utero and closes within the first few days of life...except in preemies. Sometimes it will close on it's own, sometime it needs help. Hers was closed, but as a result of the infection and trauma from surgery, it reopened. With it open at this point, the blood flow that should be directed through all chambers of the heart, bypasses the left chamber and sends too much blood across the lungs. Summer has very healthy lungs, but increased fluid in them could cause respiratory issues and takes the blood flow there instead of to the vital organs that need to grow. With most of her intestines gone, Summer needs all the blood flow and growth potential directed to her gut she can get.
Tom and I went to the hospital today and talked with the docs. We agreed to have the PDA surgically closed...which they feel is best and will improve her chances of remaining healthy and strong. They make a small incision (small is relative...it is about an inch long. On you or I that sould be tiny...on her it seems huge!) in her left side, go in through the ribs, past a lung and close off the vessel with a tiny staple. I hated the idea of another surgery, but put our trust in the docs again. They have assured us that these babies who have had surgeries so young heal nicely and soon the scar is just a pencil line that will eventually blend and hardly be noticeable...I hope so...she has been through so much and will need at least two more surgeries(one in a few months to hook her bowel back up, and one for a transplant later down the road), that we know of, in the future. We were there for about 3 hours before the surgery and I held her for that time. She is still smiling a lot and loves to be held :) The surgery only took about 15 minutes with a little more time for prep and clean up...she was in and out in an hour. She came back to her room sedated, with a breathing tube. When she wakes up, the nurses are going to hear about it! Before Summer came back in, the resident doctor popped her head in, and said she is not looking forward to seeing her intebated again. She looks forward to Summer "letting them know" she is ready to have it out (if you remember, she coughed against it, making the nursed run to the bells and alarms). She has enjoyed seeing her without the tube, wrapped up in a blankie, and doing well...we have too! Summer did great and remained stable during the surgery. All went as planned, no complications. She should have her tube taken out in the next few days.
Cute smiles quickly turn to a grimace when I pull out the flashy camera!
Some interesting info we found out while waiting.... We talked to the attending doc about Omegaven again. She had made a phone call for us to one of the docs who has helped other families and he said they are not as open to dispense it as they were without a research program in place. The kids who are currently on it with a compassionate request, are those who have shown signs of liver damage and/or have no intestine at all. They are not in a position to dispense it as a preventative measure at this point. However, she just found out that a surgeon who specializes in SBS (short bowel syndrome) from Boston is joining their staff this Fall. He is part of the Omegaven program there and she hopes he will heading up a research study at Children's. This would be great news for us...maybe we would have a better chance to use it as preventative with a research program in place. The doc also assured us that Summer is in very good shape right now, and even before the NEC hit. She has healthy, strong organs, and her Biliruben is very low...a high count is one of the first indicators of liver damage... She will more than likely be able to "cycle" her TPN (be on for a time and be off for 4-6 hours a day) They don't know why, but being able to eat regular foods and be off TPN for a time, helps reduce the amount of damage. We had been given the option of taking Summer back to Evergreen sometime soon, but I think we will stay at Children's to remain connected with what is to come...
Take a deep breath.....that is what I have to keep telling myself.
