Tehilla has been doing much better. In fact, she has been doing extremely well. We made some very big changes with her the past week and we have seen a huge difference. We moved up her bedtime and started her on a very exact nap schedule during the day. We also started letting her cry it out (not for too long). I now refuse to nurse her throughout the night.
As well, we started giving her a lot of new foods: rice cakes, egg yolk, yoghurt, cottage cheese, cheese. When we gave her pizza, she wolfed it down.
Overall, she is pudging up, is happier, calmer and things have returned to a nice normal. We are all getting more sleep.
As well, we have made changes in our home. Tehilla is still in interstage, which means the circulation in her heart can very much compromise her overall health and any kind of infection can be severely dangerous. It means she often turns a bit blue from low oxygen saturation. Lately, bli ayin harah (without an evil eye), she has been doing well and we have not had to run to the ER for any emergencies. Usually HLHS babies are only in interstage for 4-6 months. Once they have the Glenn surgery, they are in a much better position to ward of sickness and have a more normal babyhood, until they require the Fontan surgery, later on.
Tehilla is now 8.5 months old and we don't know when she will get her Glenn surgery because her pulmonary arteries are too small. Her next cardiology appointment is in two weeks and I pray that we see something significant and can progress. But in the mean time, as one of our doctors said, "we are in a holding pattern."
Until now, we have not let anyone into our home unless they were family or a healthy adult friend, or a herd of 30-something clowns that was totally unexpected. We do not take Tehilla to any crowded places and avoid public indoor places.
We made a decision to start having people over in our home, one family at a time, and as long as they are completely healthy. It's summer time now, and there are fewer viruses and illnesses. Because we slowly started letting people (except for the clowns) into our home and now are having kids, as well, we are slowly building up Tehilla's immune system and her antibodies.
This change has been incredible for our entire family. We are finally able to spend time with friends. It has been extremely therapeutic for Mechal and Tzviel, as well. We are all benefiting and loving it.