Update on Monday, April 27 and Tuesday, April 28 - The days on the 
15th floor are starting to run together just like the days in the NICU were. Before I know it it"s midnight and all I want to do is crawl into bed and sleep until I can't sleep anymore. Those days are long gone!! Monday morning the cardiologist walked into Elle's room and announced that they were going to take Elle off of all her monitors. I almost laughed out loud because I didn't think they were being serious - bu
t sure enough - an hour later - Elle was officially wireless. It was so weird not to hear all the beeps and alarms. I spent a majority of the day staring at Elle making sure she was still breathing because I have never seen her without all the monitors. The good thing about no more monitors was that I could pick her up a
nd walk all around her room with her. That was definitely a first for us! My mom got Elle her first mirror and she was enthralled when she saw her self for the first time. It was pretty funny to watch! She has been staring out the window for the past few days so seeing something new was exciting for 
her! Monday night was a relatively good night. Elle slept until around 3:00am and then was up off and on for the next few hours. First thing Tuesday morning, the nurse told me that surgery had been scheduled for Wednesday morning. I spent the day going over consent forms with the various doctors and also moving rooms. Elle has been down-graded so we aren't in the step down room anymore. The room she is in now is 1 nurse to every 5 patients instead of 1 to every 3 patients. Moving just a few doors down was horrible - I can't believe how much stuff we have accumulated in the last 5 days! The room we moved into is smaller so all the stuff barely fits! Elle had an ok day - she hardly slept at all so we thought she would sleep great tonight - 
NOPE! Poor thing just fell asleep and it's 1:06am as I write this! I think she knows that she is having another surgery tomorrow so she is nervous. She will be having her feeding tube put in and Dr. Edmonds will also be taking out her nose stints to see if they can stay out of if she can put in bigger size stints. I am praying those stupid stints can come out. The last few days have been horrible to take care of them. None of the nurses hav
e ever seen those stints so they don't exactly exude confidence while they are standing over my 5 week old daughter about to stick a catheter down her nose. I have showed them all how we have figured out how to take care of them - but it is still difficult for them to do it. I hope and pray they come out tomorrow!! For some reason, I am more worried about Elle's surgery tomorrow than I have been for the past few surgeries. I think it is because I haven't met the surgeon so I haven't been put to ease as I have with the past 2 surgeries. Hopefully we will get to meet him tomorrow. The bad part about being on the 15th floor as compared to the NICU was that in the NICU - the attending doctors and fellows and residents were always walking around - so if I had a question - I could ask them and would have an answer immediately. Here - I only see the cardiology team once in the morning and then don't see anyone except our nurse for the rest of the day. If I have a question - they have to call the resident on call and then maybe we get an answer - but most likely not. I really wish we were back in the NICU right now just for the support from all the doctors, nurse practitioners and nurses. I feel like we are going into this surgery tomorrow for the G Button half way prepared. I am just going to have to place my trust in our doctors tomorrow and in the Lord - that He will guide the surgeons as they operate on our little baby.
15th floor are starting to run together just like the days in the NICU were. Before I know it it"s midnight and all I want to do is crawl into bed and sleep until I can't sleep anymore. Those days are long gone!! Monday morning the cardiologist walked into Elle's room and announced that they were going to take Elle off of all her monitors. I almost laughed out loud because I didn't think they were being serious - bu
t sure enough - an hour later - Elle was officially wireless. It was so weird not to hear all the beeps and alarms. I spent a majority of the day staring at Elle making sure she was still breathing because I have never seen her without all the monitors. The good thing about no more monitors was that I could pick her up a
nd walk all around her room with her. That was definitely a first for us! My mom got Elle her first mirror and she was enthralled when she saw her self for the first time. It was pretty funny to watch! She has been staring out the window for the past few days so seeing something new was exciting for 
her! Monday night was a relatively good night. Elle slept until around 3:00am and then was up off and on for the next few hours. First thing Tuesday morning, the nurse told me that surgery had been scheduled for Wednesday morning. I spent the day going over consent forms with the various doctors and also moving rooms. Elle has been down-graded so we aren't in the step down room anymore. The room she is in now is 1 nurse to every 5 patients instead of 1 to every 3 patients. Moving just a few doors down was horrible - I can't believe how much stuff we have accumulated in the last 5 days! The room we moved into is smaller so all the stuff barely fits! Elle had an ok day - she hardly slept at all so we thought she would sleep great tonight - 
NOPE! Poor thing just fell asleep and it's 1:06am as I write this! I think she knows that she is having another surgery tomorrow so she is nervous. She will be having her feeding tube put in and Dr. Edmonds will also be taking out her nose stints to see if they can stay out of if she can put in bigger size stints. I am praying those stupid stints can come out. The last few days have been horrible to take care of them. None of the nurses hav
e ever seen those stints so they don't exactly exude confidence while they are standing over my 5 week old daughter about to stick a catheter down her nose. I have showed them all how we have figured out how to take care of them - but it is still difficult for them to do it. I hope and pray they come out tomorrow!! For some reason, I am more worried about Elle's surgery tomorrow than I have been for the past few surgeries. I think it is because I haven't met the surgeon so I haven't been put to ease as I have with the past 2 surgeries. Hopefully we will get to meet him tomorrow. The bad part about being on the 15th floor as compared to the NICU was that in the NICU - the attending doctors and fellows and residents were always walking around - so if I had a question - I could ask them and would have an answer immediately. Here - I only see the cardiology team once in the morning and then don't see anyone except our nurse for the rest of the day. If I have a question - they have to call the resident on call and then maybe we get an answer - but most likely not. I really wish we were back in the NICU right now just for the support from all the doctors, nurse practitioners and nurses. I feel like we are going into this surgery tomorrow for the G Button half way prepared. I am just going to have to place my trust in our doctors tomorrow and in the Lord - that He will guide the surgeons as they operate on our little baby. 
3 comments:
Wow, tell Lee to give you a hug from me. The lord will take care of Elle. Jennifer and I will keep you, Lee and Elle in our prayers. Please let us know if we can do anything.
lisha, she is SO beautiful. am praying for the surgery.
We are thinking about you guys often, and I am so glad to see the photos of Elle and no machines!! Can you believe she is almost home :) Just a little advice, when the doctors start telling you all the discharge info write it down yourself. They will give you a copy of everything, but it is hand written and illegiable. All the doctors are a phone call away, but it is nice to have your own readable list of what to do and watch for. I would LOVE to meet her one day, maybe when you guys get on a routine at home we can arrange something :) I wish you the best in your last few days at TCH, I am so happy for your family that this is almost behind you all :) PS ~ I love the yellow dress, very springish!!
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