The First Month.

The first week, she had what is called "the honeymoon period." She was stable, everything going better-no huge obstacles. We were optimistic. On the 7th day all of that changed. We received a call that she was having a hard time, and was put on a High Frequency Ventilator (HFV). It works differently than a regular ventilator. She had also developed a yeast infection in the bloodstream (Sepsis) and was very sick. They did not know if she would make it through the night. During that time she also had a Pulmonary Hemmhorrage. The nurse firmly told me that it was not a good thing, and that scared me. At this point, we were taking things hour by hour.
Moving on to about the 2nd week,her blood counts were good and the Pulmonary Interstitial Edema (PIE) looked much better. Then the bad stuff started again. My son started kindergarten. On his 2nd day I quickly ran down to the hospital for my morning visit to find the Respiratory technician there hand-bagging Gillian with oxygen as her oxygen sats had dropped down really low. They gave her surfactant and she improved. The Neonatologist was at her bedside and told me we needed to talk. I was sitting in the rocking chair at that time, and the Chaplain walked in. It all looked horrible to me. I started hyperventilating and I passed out. The neonatal nurses told everyone (other parents) to leave the room. They kept putting thoise smelling salts under my nose and talking to me, to try to get me to wake up. The nurses and neonatologists placed me on the floor and a pillow under my head and took my blood sugar. After I came out of it they gave me some juice and put me on a stretcher and took me to the ER. It was hard having to relay the story 3-4 times to all the different doctors, student physicians and nurses in the ER.

As time passed, Gillian started to look more and more like a little baby. She was constantly changing. Gillian did NOT like her diaper being changed-her oxygen sats would always drop. Probably because she was poked and prodded so much already. She also recieved many blood transfusions over her first month.

I was always amazed at Gillian's determination. She was always moody-everything had to go her way. She has been feisty since day one. We rejoiced over every small improvement. It was always "2 steps forward and 1 step back."

Head ultrasounds looked good-no brain bleeds. What a blessing that was.

I spoke to Barb Mordue, the Neonatal Nurse Practitioner (wonderful lady) and she had a plan for Gillian. They had such a hard time with her being on such a large amount of oxygen that they needed to do something. She had already been on 100% oxygen for weeks. The proposed that they start her on Decadron, a steroid. It would reduce inflammation of the lungs and then she would not require so much oxygen. At this point they warned me that it could cause some problems in Neurological Development, slower growth, etc. Within hours of administering the first dose, she started improving. It was miraculous and our prayers were answered. She had become much more stable and they were able to turn down the oxygen level.

The following week when they were changing her oxygen mask and carefully removing the tape from her fragile skin, the tape took some of her skin with it. It left an abrasion that looked pretty bad. Needless to say I was freaking out. Other than that, there was some exciting news. They had taken her off the HFV and put her on a conventional ventilator, which meant I would get to hold her for the first time ever. Gillian had become more active and was fighting the ventilator so they had to give her something to paralyze her. She was loosing some weight because she was moving around so much.

I got to hold Gillian for the first time when she was 1 month old. At first I was really afraid-she was so tiny and fragile. It was a great experience-it felt like a dream. The nurses around me were excited too. She had an air leak in her ventilator tube and she was making some cooing noises. Her eyes were open really wide looking around. Her oxygen saturation levels even went up. The "skin to skin" contact with preemies has been proven to help them with growth and development.

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