Today was my third day of feeling terrible. At 8 pm last night, Shawn took me back to the ER as my fever just would not break after 48 hours on the antibiotic. The doctor put me on IV antibiotics and told me to return to the hospital in the morning for my next dose. I'm not a fan of having an IV in and the idea of having one left in for days is somewhat unsettling. This morning I woke up with a fever of 102 and headed over to the hospital. They gave me the second dose of the antibiotic but, after the doctor came in to see me, she decided that if it was working my fever should have broken after the first dose. So, she switched my antibiotic a third time and started me on another IV one. After that I was taken for an ultrasound to see if there was an abscess that could be causing the resistance to the medication. Nothing was found in the ultrasound, so they sent me home and said to return tomorrow for my medications and on Thursday the doctor would see me again to see if it was finally working and I was getting some relief......sheeeesh......this is not fun!
My mom wheeled me up to the NICU to see Hope for the first time in over 60 hours. She looks so much more comfortable without her breathing tube in and is just on oxygen now, which is much more comfortable. She has 10 more lines, IV's and tubes to go before she's wire free! She also had her last chest tube removed. This seals all the open wounds and greatly lowers her risk of infection. We were told we were finally able to hold her, but I was too sick to keep sitting up and had to get home to bed instead. My mom was the first one to hold her and had a good 2 hour snuggle with her this afternoon. When Shawn returned from work, he went over to the hospital and is there now having a snuggle with his girl after a long wait. I am praying that this fever disappears and I feel up to going over tomorrow. I'm starting to feel very frustrated!
We've been thrilled with Hope's progress and truly feel like she is an extreme fighter. We are also trying to be realistic and remember that we are in a critical place for the next 6 months. Most HLHS children that don't make it are not lost during the surgery stage, they are lost between the first and second surgery because of heart failure or minor illnesses that their little hearts aren't strong enough to fight. We are praying that our little girl will fight through to the six month mark and are hoping that you will all stay with us as we pray through this continued critical time. The next six months will be difficult for me socially, keeping Hope from getting sick will mean not attending a lot of events that I'll want to, having to turn sick people away from our house and limiting how much we pass our little one around for snuggles with others. These things will not be easy and we truly hope that our friends and family are understanding through this all. The doctors keep telling us that heart babies take two steps forward and one step back. Hope continues to step forward and is rarely stepping back. As a result, we are always a little on edge and praying that she continues to make progress in her recovery and doesn't take steps back at all.
Over the last few days we've started to receive Hope notes for the scrapbook. We have 21 of them so far and have so enjoyed reading them and seeing where they arrive from. So many people we don't even know are praying and this is such an encouragement to us. Being stranded in my bed, it has been a joy to receive these letters and distract myself momentarily. Thank you for taking the time to send them, we will cherish them as Hope grows up and we can tell her all about the people who surrounded her in prayer as she grew.