Week Two September 28 - October 4

*We decided to publish the weekly update blog, and we will post daily updates to it. It will keep the blog more condensed than having one blog per day.*

Monday: I went into the NICU at 730 this morning. Jeremy went to work, but found it a nice surprise when no one else was at Steelco. It is Yom Kippur, and he had the day off. Jeremy joined me at the hospital. Cheryl was the AM nurse. She said because of the events of Sunday Maddie needed to rest. She was under sedation for most of the day. Jeremy and I returned to the NICU later in the evening. We were met at the scrubbing station by Maddie's PM nurse, Kami. She said Maddie had a blood clot in her feeding tube leading into the bellybutton. They had to do a procedure to remove the tube, and attempt to replace it. They were not sure if they would be succeed, but everything worked in our favor once again, and the procedure was successful. We did not stay long, because Maddie needed her sleep, and she gets agitated when there is too much noise. She is still breathing 21% oxygen, which is what we breath. The medical staff can no longer hear her murmur, which we are hoping is closed. We find out the results tomorrow.

Tuesday: Madelynn heard her first fairy tales today.
Maddie had her echo in the morning. The scan showed the murmur to have closed, though not completely. The medical personnel over her decided not to perform another round of medication, and let her body close the rest of the murmur.
She needed another transfusion. This time the line is in her hand. She likes to tuck her hand under her head, but her wrist is not strong enough to support the line. She settles for placing it by her head.
They are hoping to get the umbilical tube removed tomorrow.

Wednesday: Huge step today! Madelynn had her umbilical feeding tube removed in the morning. She is getting her nutrition from her pick line, but the nurses introduced milk to her stomach today. I got to give her the first feeding, and Jeremy did the second. She gets .06 mL of milk for every feeding. It is put into a line that runs into her tummy. They are monitoring the size of her stomach to make sure her digestive system can tolerate getting the milk. Jeremy got to change her diaper twice, and he picked her up to help the nurses weigh her. It's the only time he's had the chance to "hold" her since she is in the incubator. He said it was like picking up air, but feeling the air. He was on cloud 9 for the whole night. I am so proud of him, and how well he does with her.
The medical staff still cannot hear a murmur, and they are trying to determine if they want an echo, or if they should declare it clinically closed.

Thursday: Maddie had a head ultrasound done, the tests results are pending. She's lost 100 grams. She now weighs 1 pound 3 ounces. The medical staff are going to use this as her real weight. Whatever she gains from now on will be counted, and no longer be fluid.

Friday: The hospital "lost" the scan again. This happened with the first head ultrasound. She is susceptible to the bleeds because of the medications given to her for her heart. We got the results late in the night. It showed a small bleed, nothing concerning to the medical staff. They said we all probably had that amount of blood on our brains when we were little.
She is struggling to maintain her oxygen level. She goes from 21% to 40%. The medical staff doesn't worry, though, until the level exceeds 50%.
I had visitors today who came to see me and Maddie. Norma, Anna, and Peggy came to see how I was holding up. It warmed my heart to have people around who care about me. Peggy gave us a little onsie coat. It is adorable.
Late in the night we received news that Maddie is sick. She has an infection in the intestines. She was taken off milk, and placed back on antibiotics. They are taking x-rays of her stomach every six hours to make sure there is not extra air in her tummy. This would indicate the infection has spread. The nurse practitioner tells us if this were to happen it is very serious, although they have yet to tell me what "very serious" means.
All her other vitals are good.

Saturday: She was on her stomach today while receiving treatment for her jaundice, the Billy Light.
The intestine is pushing air into her abdomen, but the medical staff cannot find a bacteria. They are taking every precaution to prevent surgery. They are pushing antibiotics in her IVs, and will do so for the duration of five to seven days. If air and bile rupture her intestine then it would prompt the staff to send her to Primary's for surgery.
The good thing is she has gained three ounces. She is up to 1 pound 6 ounce. The medical staff are seeing she is urinating at a good rate and amount, which means the weight gain is all her, and not fluid.

We went shopping, and were in Bath and Body works when we met a woman named Emily whose son who was born at 26 weeks. It was very serendipitous. The baby was nine months, and as big as our nephew Matthew. The baby is very healthy, the one thing he struggles with is Chronic Lung Disease, which is essentially asthma. He has to be on oxygen at night, but is being weened off of it. She was so kind to take fifteen minutes out of her day to tell us there is light at the end of the tunnel. To hang in there, and everything will work out. She gave us a hug, and told us she would add us to her prayers.

Sunday: Maddie's intestines have started to improve. She is now 13 inches long and 1 pound 9 ounces. She met her cousin Brandi, who flew out from Oak Harbor to be with us for three days. It is so nice for me to have someone form home. Sunday, thankfully, was pretty non eventful. In our world, no change can be good change.