Autumn Rose Keeling
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My daughters name is Autumn Rose. She was born at 24 weeks, 1 pound 10 oz. She spent 4 1/2 months in the NICU. Her first hours of life where a struggle and it only got worse. From there she was put on a vent due to the fact her lungs where not strong enough yet to breathe own her own. Then 1 week after being born, they found she had a heart valve mummer. Which of course is normal with micro preemies, so they wanted us to try a round of Indocin to see if that would close it off. You usually only do two rounds, we ended up doing 3. It did not work, so off to surgery we go to have a PDA ligation. That went great. Well, next we got a phone call at 3am saying she was being rushed in to emergency surgery. She developed NEC and they removed a little of the small intestine and she had to have illostomy bag placed. She went through that fine and we thought we may get a break for a while. We did for 5 days, and then they found a grade one brain hemorrhage. We where told that was not a problem, that it was in the fatty tissues surrounding the brain and it would just soak in to the fat. After that was over things started looking better.
She was now 1 month old and getting bigger, but her lungs just did not want to get stronger. She did not like the vent tube, she kept pulling it out and this was scarring her trachea. We dealt with that for 1 more month, then at 2 months old they wanted to try and see if we could use steroid treatments (which had major side effects and they may not work well). We did and she was fine, no side effects. They where able to pull the vent and put her on CPAP, which was great. She was growing and her lungs were getting stronger, but of course that did not last.
We are now at 2 1/2 months old; they were able to wean her down to nasal cannula, then she sounded like she was wheezing all the time. She had strider and it only got worse. They were able to keep her off of CPAP for a week, until she developed septicemia (an infection of the blood stream). She ended up vented once more and we got a phone call that I needed to get to the hospital to meet with the doctors. My husband and I met with them and they said we needed to look at sending her to Chaple Hill 4 hours away from our home in Wilmington, NC in order to have a tracheostomy placed. I have never been so scared in my life. I had no clue what that was or what they where going to do, so we said yes and they put my little baby on a ambulance that drove her there. All I could do was follow her there.
They said she had subglottic stenosis and it was severe (about 90 percent closed) and she would need a trached placed ASAP. They did the surgery the next day. I was still unsure, I thought I was sending my daughter in to have them slit her throat. They finished surgery and I got to go see her. She looked so bad I thought she may die. But 2 days later things started going up hill. She was able to be put on a trach collar instead of the vent and just needed minor amounts of O2. I could not believe it.
She was sent back to our hospital in Wilmington 1 week later and she was now 3 months old and we where planning to do an illostomy take down to repair her intestines, which went great. She was able to take a bottle finally and we where planning a home coming. I could not believe this night mare was ending.
At 4 months old they moved us from the NICU to nesting, so I could learn trach care and bond with her. Oh, it was the greatest thing on this earth. I had my little girl in a room with me and I was taking care of her with a little help. I was suctioning her like a pro and changing the trach no problem at all. So, we got the news we could go home at 4 1/2 months. We got to take her home, but it was not over yet. We got home and 4 hours into it she stopped breathing her lungs had frozen from equipment problems the heater on her mist collar were not working, so she had cold O2 going straight to her lungs, which was not good. We got her to the hospital and they warmed them up and she was fine she came home the next day and she was fine. We then found out she had retinopothy of prematurity of the eyes, laser surgery here we go. It took 3 months to correct that, but she has great vision now.
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Autumn with her Nurse
Now to the great news, she is going to be 2 next month and walking and talking and completely caught up. She has no O2 on at all, she uses a Passy-Muir all day long. We know she wont be decannulated until age 3, but that's not that big of a deal. I am used to it now, it is a part of life. She now weighs 29 pounds and growing. The subglottic stenosis is all that's left. She wears a 4.0 peds trach, which we just went up too. I love my nurse that we have with her. I have 16 hours a day, Monday thru Friday and 12 hours on weekends. I would be lost with out them. Things are finally going better and I thank any and everyone who cared for her. Just keep her in your prayers.
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Thank you, her mommy Lisa Ann Keeling
