Day 9 Update

BEST day yet AND worst day yet. Came into the NICU at 8am to feed Ruby and our favorite nurse Gina was sitting in a rocking chair on the opposite side of Ruby’s bed and holding a baby. I did a double take. I looked in Ruby’s crib…she was not there. Our nurse was holding RUBY which meant that Ruby’s belly IV was OUT!!! Hallelujah!! Dale’s favorite saying, “She is a free range baby now!”

Yesterday, we had made it pretty clear that we’d like the IV to come out rather than take the risk of infection on her belly IV. Typically, the IVs stay in between 7-10 days. I would rather it come out than take ANY risk of infection. Feeling a little pessimistic, but knowing our chances, she’d get an infection and then have to stay another week just for that. Worse comes to worse, they’ll put an IV in her hand again if her blood glucose levels cannot stay up.

Had some lovely visitors today, that always helps with the mood. It was nice to have a good day for once. One of my best friends came around lunchtime to pick up Lindy for the afternoon. Even though Lindy loves the playroom, I thought she should have a little bit of time with friends elsewhere. Dale decided to work for a few hours -so I had the afternoon, holding my sweet Ruby and snuggling with her. I took a nap in the playroom. At 5, Dale arrived and we headed in to feed Ruby again. Once inside, we saw a LARGE machine next to her bed…NOT A GOOD SIGN. Our nurse Gina said that the cardiologist wanted to take a look at Ruby’s heart a little bit further…we were completely freaked out.

The cardiologist did her thing and I went to pump so we could stay distracted. Our nurse came to get us and told us “it is not as bad as we thought.” I just figured they were following up on the murmur and nothing else. WRONG.

The cardiologist pulled up the echo results and started to tell us about the whole in the heart that we usually see in utero and is closed by birth. Ruby’s hadn’t closed, revealing to us that she has Atrial septal defect, or ASD for short. Sometimes referred to as a hole in the heart. People with ASD have an abnormal opening in the dividing wall between the upper filling chambers of the heart, or the atria. Ok. We could deal with that. A lot of times, the hole just heals itself.

…She then proceeded to pull up ANOTHER screen. The lower chambers of her heart ALSO have a hole, a ventricular septal defect (VSD). An opening in the wall (septum) between the right ventricle and the left ventricle. Another hole in the heart. The blood flowing through the hole creates an extra noise during the listening exam of the heart, known as a heart murmur. Ok. So 2 heart defects. We are bubbling in tears now. Our sweet little girl has 2 heart defects.

…She then proceeded to pull up ANOTHER SCREEN. My heart dropped. I had no idea how many more things she was going to find. She proceeded to show us her pulmonary valve and that it was slightly narrowed…making it harder for the leaflets to open and permit blood to flow forward from the right ventricle to the lungs. She didn’t quite diagnose Ruby with Pulmonary Stenosis but said that it could become worse as she grows or even just get better. Something she wanted to keep an eye on.

3 heart defects. We now have to become experts on heart defects. I’m not even sure how to pray anymore. Feels so much like God doesn’t care about the little things let alone the big things in my life.

Of course, the cardiologist kept pulling out the term, IDM (infant of diabetic mothers) and that is when I lost it, specifically asking her if my daughter had these defects because of me. She avoided answering directly that way and said, 1 in 1000 babies will be born with these defects.

You’d be surprised how many people have said, “you should just be happy she is here and safe.” Well no duh. Those words make me angry. If you plan on saying that to me in the near future, you should probably think twice about it. Yes, I am elated that she is here and “safe” but I don’t have to be joyful over the fact that my daughter is being poked and prodded and tested and handled by 25+ other women, when all I want to do is take her home, nurse her, snuggle, and have complete JOY instead of hindered by IV lines, sleeping in waiting room chairs, entertaining a 4 year old in a waiting room, and nurse’s opinions.

We are completely exhausted and devastated that Ruby’s heart is not functioning properly -googling EVERY symptom of heart failure and how we would know the symptoms of her heart defects.

It was time to pick up Lindy now from my friend’s house. It was tough, because just 5 hours earlier, life was awesome, the IV was out. Now, I come into her house a sobbing mess with completely shocking news.

What will take away the pain? Why not spend some money? Lindy’s favorite restaurant is Applebees, so we went out to dinner. Put her to bed and called another dear friend to come sleep on the couch so we could go spend time with Ruby for her 11pm feeding. We just wanted to be close to her.

How much more can we take?



 

Leave a Comment

*