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On May 4, 2009, Josh and I discovered that our soon to be little girl, due on August 25th, would be born with a CHD known as HLHS (hypo-plastic left heart syndrome). Upon hearing "something is wrong with your baby's heart" our lives changed completely. Our little Ruth Elizabeth was brought into this world on August 18, 2009. She was delivered via c-section and rushed immediately from Barnes to Childrens' Hospital for a cardiac cath intervention. Her arial septum was reopened and a week later, Ruthie underwent her first open heart surgery, the Norwood. Unfortunately, Ruthie was not able to survive on her Norwood heart and the Glenn procedure would not work for her. Ruthie was placed on the heart transplant list Feb.3, 2010. After waiting in SLCH, Ruthie received a new heart on July 5, 2010. We are so humbly blessed to receive this gift of life. We now are on the road to recovery. We have had our ups and downs. We have become SLCH regulars due to countless hospital stays and ER visits. We are learning how to manage life outside of SLCH and with another little girl. Now that we have two children, we are learning the about being a heart FAMILY.

Saturday, December 26, 2009

12.17.09

Two down, one more to go.

Posted Dec 17, 2009 6:48pm

This week is a pretty crazy week for Ruth. We went to the Endocrinologist Tuesday at 8:30 am and then to the Pediatrician at 1 pm. According to the Endocrinologist, Ruth is right on track. We are going to stay on the thyroid medicine daily at .25 mg. Apparently that is keeping her at the appropriate level. We don't have to have another blood screening for the her T4 until March now, which is right before we go back to see that doctor.
The pediatrician's appointment went well. Ruth is growing and is finally on the growth chart. She is at the 10th percentile for her height. So she is getting there, just slowly. She did receive 4 shots and one oral immunization. She loved the oral one, which surprised the nurse. No surprise for us, since she LOVES her meds each day. LOL. Ruth did not like the 4 shots though; nor did mommy. It was so sad:(
After a long day at the doctors on Tuesday we spent the rest of the evening fighting Ruth to eat. By the time the morning rolled around, we decided to call the doctors to see what we could try to get Ruth to eat and not scream at us each time the bottle touched her mouth. We tried new nipples, new bottles, different formula and Tylenol. After reaching the nurse at Dr. Goel's, our cardiologist, office we were on our way to Walgreens to get a prescription for reflux medicine. So here we are now. She has been on the reflux medicine for almost 24 hours now. She is starting to eat much better, but still fights a little. We hope this medicine kicks in tonight and that we have a more peaceful and less painful night for Ruthie.
We go back to Dr. Goel tomorrow at 8:30am. So hopefully after this appointment we will know more information about Ruth's eating (well not eating) habits and when her next heart cath will take place.
As always, we are praying for Ruth and her doctors.
I plan on updating soon after her appointment tomorrow but we will see what happens.
Heart hugs!

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