Hope randomly spikes fevers and throws up every 12 hours or so. She is still much happier than she's been and smiles on a more regular basis. She's grabbing her toys and much more interactive. Today the cardiologist talked to us about walking the difficult road and pushing through. We need to get Hope eating and her problems could simply be her body adjusting to the change. There is a chance that something is wrong with her stomach, but we're going to assume there is not. We'll up Hope's feeds 1ml per day and continue to move forward and give her time to adjust to the change. Please pray that her little body will adjust quickly and we'll be able to get her eating.
It has been so nice to have Shawn home from work over the holidays, and a friend visiting. It lightens the load and Shawn was able to spend most of today with Hope. This is something he isn't always able to do and I know Hope enjoys the extra cuddles from Daddy.
The doctors are fairly sure that Hope's line is still hiding some infection. They will have to put her back on strong antibiotics if she continues to spike fevers. This is pushing them to get her eating and remove the line more quickly. The last ultrasound of the clot, at the end of the line, showed that it is stuck to the wall of the vein. It is still attached to the end of the line, but is less likely to move when the line is pulled because of its new foundation on the vein wall. We praise God for that and continue to pray that it stays put when we're finally able to pull the line. Please keep this concern in your prayers as it could cause severe damage if it moves.
The cardiologist is pretty sure that the heart cath will not take place unless we are absolutely forced to do it. This is better for Hope long term, as long as they are right! Please pray that if she needs the heart cath, she'll make it very easy for them to see and we won't miss something important in her little body.
As a family, we are extremely blessed by others. We would not be standing without all of you standing around us. It truly takes an army to stay on top of Hope's care and other important aspects of our lives. We struggle with the fact that there is no end to Hope's hospitalization in sight. We are desperate for this all to be over and to bring our girl home. At the same time, with the help of so many, we are able to continue down this long and difficult road. We still find time to smile, to get the sleep we need and to enjoy life. It makes a huge difference and is so important. Thank you to everyone that volunteers to sit with Hope, feed our family and especially to those that give up sleep to have a sleepover with our precious girl.