On the 23rd of July, my sister Mindy and her Boyfriend Tim (who we got to meet for the first time) came to help out with the kids for three days. The kids took an instant liking to Tim and I think Lorelei had a little bit of a crush on him. Every time they came to the hospital Riley and Lorelei would beg Tim to go on a walk with him. Unfortunately, Tim put too much faith in them and they ended up taking an elevator to a meeting floor where people were having a meeting. He pleaded the 5th and realized my kids had no clue where they were going.
During the time of Mindy and Tim's visit, the doctors came back to us with more disheartening news. Doctor Butler informed us that water was accumulating in her lungs once again. We were back at the waiting game.
Mindy and Tim had to leave July 26th in the morning, but luckily was closely fallowed by Grandma Shelley arriving. We knew we were in for another couple of hard weeks and were grateful for the extra help and support.
On Sunday the 27th a Lady who specializes in placing PIC lines on the PICU floor was present and available. She was able to place a working PIC line through Natalie's thigh in one hour. I could not believe it. I asked the doctor why they did not have her do it in the first place. Her response was that the Lady only works on the weekends and the first PIC line was done during the week day. They used to have someone during the week, but they had moved and did not yet have a replacement. I understood the situation, but could still feel my pent up feelings yet again surmounting.
During this time I had put Riley's first day of school on the back burner. I thought I still had a couple of weeks before I had to worry about school supplies and his first day. That night I checked my e-mail and the harsh reality was revealed. I learned that that Thursday I needed to turn in his supplies. I went into freak out mode once again. When Shelley offered to go get the supplies a huge burden was lifted off my shoulders. It seems like such a little thing now, but in the moment it was more than I could handle.
While Grandma Shelley was entertaining the kiddo's, keeping us fed, and the house in check, Brandon and I were dealing with the latest situation with Natalie. Dr. Butler informed us on the 30th (a Wednesday) that she needed to insert a new chest drain to release the fluid in her lungs. They were afraid of her getting an infection. This was the day where my surmounting emotions imploded. Brandon and I were told to wait in the waiting room. The procedure seemed like it took FOREVER. It felt longer than her operation. The stress of all the poking, prodding, and hurt began to grate on my nerves. I began to panic and rushed into the NICU to ask about Natalie when doctor Butler walked out of her room. She informed me that they were done and that I could go in. My heart sank as I looked at the chest tube Meter on the floor. I also felt hopeless as the nurses were helping her. The anesthesia was still wearing off. I also noticed that she began to have a harder time coming off the anesthesia than she did before. She would cry out in pain and I could tell she was sore. The nurses hardly acknowledged our presence or how we were feeling. I turned to doctor Butler (already knowing the answer) and asked "does this mean we will not get to care for her as much as we were able too?" Doctor Butler began to answer but was cut off by a nurse who said "It's best if you leave it to us to get her in and out of her bed for now." Her comment completely threw me over the edge. I lashed back and said "Do you guys not understand what we parents are going through? I have not been able to take my baby home at all. I have not been able to care for her like a mother should. I asked Doctor Butler a question, not you!" Of course everyone in the hall and the front desk heard me. I was sobbing, Brandon was sobbing, and I felt awful for ripping into this sweet nurse.
Luckily, the Lead Nurse Kari, knew me well enough and came in to comfort and hug me. She told me that when her kids had surgery she acted the same way and that I was not the first parent to fall apart. They actually said that Brandon and I had been the most pleasant people they have had to deal with After Kari boosted us up I asked to cuddle and hold my sweet little angel.
The next day Brandon and I went in to find the goal on Natalie's board changed to
1.Increase feeds
2. Wean off oxygen
3.Give more parent support
After a night's rest Brandon and I found the last goal hilarious and thoughtful.
