Anna Grace - January 20 - Update #2

It has been yet another eventful day in the life of Anna Grace.

Feeds: Her feeds were compressed to 1 ½ hours today. As I type right now she has not had any spit up or vomiting today. Praise the Lord – it truly has been an answer to prayer. I was told today that they have ordered her swallow study for Thursday. If she “passes” her swallow study then they will let me start trying to feed her with a bottle working towards getting her off the NG tube. She is 3 ½ weeks old now and has never eaten by mouth. I’m told babies who have never eaten by mouth have a hard time learning this skill – we have been and will continue to work with her occupational therapist in helping her learn how to eat by mouth. Currently she has a daily session with the occupational therapist helping her to “use” her mouth so that she is used to having something in her mouth in hopes that when it is time to introduce a bottle that she will not reject it.

Blood Pressure: Anna Grace had a kidney ultrasound today as kidney function and blood pressure apparently are related. Her kidney ultrasound revealed that she has an abnormality with her left kidney. They have taken some blood from Anna Grace and sent it to a lab for some test to see if she has “renal” or “adrenal” problems. They said it could take a few weeks to get those test results back. In the mean time – they are going to start her on blood pressure medicine – probably tomorrow – to help get her blood pressure into an acceptable range. I feel bad that she needs yet another medication, but at the same time, I don’t want any undue stress on her already taxed heart.

High Heart Rate: The last couple of days Anna Grace’s heart rate has become elevated. The doctors are not sure why and have ordered some tests to look at things. We’ll see. Her heart rate is still in an acceptable limit, but on the high side. She also started running a fever today – more tests to try to determine the cause.

Incision Site: The “infection” on her incision site the doctors looked at today & said that it looked about the same still.

Things to pray for: Fever to come down, heart rate to come down, blood pressure to come down, ability to tolerate compressed feeds, “passing” her swallow study tomorrow, rest tonight (for Anna Grace & Mommy), discernment for the doctors.

Praise God that Anna Grace was able to tolerate her 1 ½ hour compressed feeds so far today with no spit up or vomiting. Thank you Lord for compassionate nurses and doctors. Thank you Lord for our family who has been caring for Zachary and who continue to encourage us through this journey, Thank you also Lord for the wonderful friends you have given us and the prayer warriors that they are for our family.

I am weary today. It has been a long week with so many new hurdles – unexpected hurdles. Brian will be here tomorrow to let me go to the townhouse & rest. What a great hubby he is – working, commuting and doing hospital duty. This is a hard journey – as a parent, especially for me who tends to be a bit of a control freak by nature – God is slowly teaching me to LET GO and I keep trying to fight Him on this. Ugh.