Held

What a wonderfully stable few days we’ve had! Emy is off of two of her blood pressure medications. The doctors are planning to wean her off of a third medication within the next few days. This is a huge win for her as she was on the maximum dose of both of these medications during her first week of life. She has been able to receive more nutrition due to these adjustments. Hopefully she will grow at a faster rate with the increased nutrition.

They are also hoping to remove her arterial line soon. The purpose of the line is to measure her blood pressure. As her blood pressure has been stable, they are planning to take it out soon. It will be nice for her to gain some mobility in her right arm again. A line in her forehead was also taken out recently. She appears less fragile without a “unicorn” line sticking out of her head!

Dialysis is going well. Her dressing was changed today and there was no sign of infection. She hasn’t leaked anymore, which is amazing. We are happy that gravity did its job and kept the fluid down in her belly where it needs to stay. She is still on 10 mL per pass, with 30 minutes between each pass, 24 hours per day. We are thankful for the nurses who carefully carry out this task around the clock.

A highlight of the week is that I got to hold her today! She seemed to enjoy it; I know I did! It was sweet holding my precious daughter in my arms for the first time, with her little face nestled against my chest. Time seemed to stand still as we shared our first cuddle; what a joyous moment.

We are very thankful for her progress. Please pray that her dialysis continues to go well. Pray that her catheter doesn’t leak, and that she continues to pull off excess fluid with the dialysis. Pray that she avoids infection. Pray that her labs remain stable despite the inefficient dialysis regimen she is on (the small and inefficient amount of dialysis is necessary to avoid leaking). Pray that her blood pressure remains stable, even as she is weaned off of more blood pressure medication. Please pray that the additional nutrition is enough to grow her. Pray for the doctors and nurses who are overseeing her care. We believe God is with our baby girl. We believe He is with us and He is holding us through this medical journey.