Thursday, May 3, 2012
Praise God we are home at last! Katie was discharged from the hospital yesterday and spent a large part of the afternoon looking around at her new surroundings and sleeping in her own crib. She seems very happy to be home, as are we. We are still working on unpacking and organizing her medical supplies and doing normal baby things, with some modification. Carrying her around the house is just not possible due to her feeding tube (she is on continuous feeds so is always hooked up to her food pump and a Farrell bag.) We moved her to the living room for a while yesterday but it took a coordinated effort to get her there and back. Since she is allowed two small bottles a day by mouth and her speech therapist got to see her gulp one of them down this morning, hopefully we will be able to increase her feeds by mouth soon and it will not be necessary to keep her hooked up to the bag all the time. The rest of this post will be dedicated to explaining the precautions we will have to take in order to help keep Katie well and alive until her next surgery. These precautions have been so well explained on some of our heart-friends' blogs that we have gratefully borrowed some of their words. We are incredibly excited to have Katie home. We also want people to be able to see her and visit her, however visiting has to be posponed and limited when it is allowed. Please do not be offended if we ask you respectfully not to pay her a visit (NO EXCEPTIONS!). When she is allowed visitors, she will not be able to be around anyone who is sick, who has been around a sick person in the past three days, or who is a smoker. Please feel free to call, text, e-mail, etc. anytime, to check and see how things are going. A lot of struggles begin for HLHS babies when they themselves get sick from something as small as a cold. Although Katherine is stronger, her immune system is still very weak and prone to germs, bacteria and the smallest of sickness going around. We will not be taking Katherine anywhere where there is a lot of people; church, birthday parties, etc., and no, not even Wal-Mart, at least not for a while. This is simply to protect her until she gets stronger, which may take several months. Our doctors have recommended that we keep her away from people until well after her second surgery, which will be somewhere between 5-6 months old. We do not want to offend anyone or hurt anyone's feelings. We are following doctors orders and trying to take as many precautions as possible. We are asking you, family and friends, to help us out with this. As Katherine progresses, gets stronger and grows, there will be plenty of time for everyone with her. Please continue to pray as we complete another step in Katherine's journey.