Wednesday, November 5, 2014

Sleepless Night

Tehilla barely slept last night. She cried and was very difficult. Today, she is completely unhappy. I'm hoping that her schedule is just thrown off from the catheter and hospital stay. Other than being extremely irritable, everything else is completely normal. If she continues on like this, then I'll put in a call to our doctor.

I managed to snap a few pictures of her being playful and spitting at me.

We have told Mechal and Tzviel about the surgery. Mechal was ecstatic. Her response was, "Yay! And then she will be doing much much better!"

We are starting to get ourselves organized and make a plan for the surgery, even though we do not have a date yet.

A few things that I forgot to mention in my previous post, is that the new medication, Digoxin that Tehilla is being put on, has to be monitored carefully. She will need a blood test in two weeks.

I received two messages from fellow heart mamas after they read my previous post. Both of their HLHS kids were started on Digoxin for the exact same reasons and it was successful! So, fingers crossed that it works for us, as well.

As well, Tehilla must start an iron supplement. For those that have been reading along, you may remember that the day we started Tehilla on an iron supplement, she had an allergic reaction and half of her face swelled up.

Cyanotic babies (blue babies) must have higher levels of iron, as their hearts depend on it greatly. Everyone on the team is aware of Tehilla's previous reaction, so they have started her on a different brand and a different kind of iron salt. Hopefully, she will not have a reaction.

We have received so many warm wishes and messages from family and friends. Many people are taking initiative in taking something on for Tehilla. This journey could have been very isolating, but with all the love we have received, we feel so much more strengthened. Thank you!

1 comment:

  1. Always remember - you are an amazing mother and advocate! and as you stated and I so strongly believe, whatever decision you make will be the right one for you and your family. Stay strong and know we are all thinking about you and davening for you and Tehilla