Week Three October 5-11

Monday: Madelynn is two weeks old, and gestationally 28 weeks and 3 days. We are going to call this a good day. Madelynn's intestine looks a lot better today. She will be on antibiotics until Friday. She has her heart echo tomorrow, and on Friday they will do a head ultrasound. These are just routine, I guess. I changed her diaper for the first time, and took her temperature. She was sprawled out again. She looked comfortable. She doesn't like her arms tucked in so I think she enjoys it when they let her lie like that.

Tuesday: We found out her murmur is open. It looks like she will need heart surgery to permantely close it. The medical staff seems to think most of her problems stem from her heart problem. She used to use only 21% oxygen, but now because fluid is leaking into her lungs she needs almost 70%. The NECK scare they believe may have been caused by the body not directing the oxygen properly because of the hole in her heart. They will let us know tomorrow what they when they will move her to Primary Childrens and when her surgery will be.

Wednesday: Madelynn was transfered by ambulance to Primarys today. There was an infection scare this morning, but the labs came back normal. The medical staffs at the two hospitals felt she was stable enough for the transfer. They loaded her up into a portable isolate and took off. Madelynn gets pissy when she is messed with too much. She frowns at everyone and her stats drop. She's a pretty funny little girl to watch with other people. We had to inform the new nursing staff of her idiosyncrasies: She doesn't like her arms tucked in, don't touch her if you don't have to and her favorite side to lay on is her left. They needed consent for another transfusion, this will be number 8 for her. They were unable to tell us if they surgery will be performed tomorrow or Friday. The Primary Medical staff will meet for rounds tomorrow with the cardiologist, and they will decide to either get an additional heart echo or go into surgery. We wait for the call.

Thursday: The call came at nine this morning. They are going to do the surgery at eleven. Jeremy and I went to the hospital, visited with Maddie, and signed the consent forms for surgery. Then we waited. The surgery lasted an hour, and she sailed through it like a trouper. Her lung partially collapsed, but they are not worried about it. She has to have tubes in her for a while. The Primary's medical staff said her vitals are excellent for a preemie who had just gone through surgery. She is heavily medicated, and sleeping through the day. I forgot my camera, so I apologize for the cell phone pictures.

Friday: Jeremy and I are both sick so we are not allowed to see Madelynn. I left work to go to the hospital, and then I could not go in. We've been calling the NICU all day to get updates, and her paternal grandparents, Grandpa Rick and Grandma Myker paid her a visit. Maddie pulled out her oxygen tube today. She decided she didn't like it. She gets pissy when she does not like something. They put her on nasal oxygen, not unlike a CPAP, but smaller. She did well breathing on her own for two hours, then she got tired, so they intibated her again. She got the chest tubes taken out today, which was a surpirse. We thought they would be in there for a while. I can't say it enough, we have been blessed with a very strong, resilient daughter. The medical staff keeps telling us she is doing extremely well given her circumstances.

Saturday: Day Two of being sick, and not seeing Maddie. It's really hard. We called for check ups. She is doing well on her oxygen, and they are going to start her back on feedings. They hope to be able to transfer her back to IMC on Monday. She was awake for most of the day staring at the nurses.

Sunday: Grandma and Grandpa Jones went and visited Maddie today, and came over with updates. The nurses have found she likes to be on her tummy. Madelynn is more stabilized this way.
She is on the nasal oxygen. She likes her purple binkie they have given her to help push the air to her lungs, and not escape out her mouth.
Without the oxygen tube in her mouth one can she her expressions. She seems to smile.
She had the hiccups today.
She tried to suck her thumb today, but the tubes prevented her from succeeding.
She made some noise.