Today was Zoe's follow up visit with Dr. King, our Cardiologist. One of the issues I wanted to address was the dry cough that Zoe has as a result of the Captopril that she takes three times daily for her blood pressure. Her cough has gotten significantly worse since we were in the hospital and when you combine that with her reflux issues, you get a lot of vomiting. The poor thing has been just miserable as she is either coughing, gagging and spitting up or recovering from just doing so. I have also noticed a huge difference because she isn't able to sleep easily during the night because wakes herself up coughing. When she recovers from spitting up, she moans and whimpers. You can tell she is in pain and so uncomfortable. It breaks my heart that she can't get a break from discomfort, but Dr. King changed her medication to Lisinopril and we're crossing our fingers that she might have less of a reaction. As with all ace inhibitors, a cough is the most common side effect... but I really hope that this will be a better option for her.
After the echocardiogram, Dr. King explained that the leakage from her Atrial Septal Defect has not increased (hallelujah!) and that everything looks about the same. He did notice that her kidneys are looking larger than expected but he attributes that to the high calorie/high volume diet.
The only setback is that as a result of her stroke, it will be at least two months before we can consider surgery. We have been waiting and working so hard to get Zoe's growth up so she can have the Glenn, which is the second of three open heart surgeries that she needs to give her heart a fighting chance for the rest of her life. Zoe's weight gain has progressed beautifully, currently weighing 9 lbs. 14 oz. (gaining over an ounce per day) and if it weren't for the stroke, we would probably be scheduling her surgery very soon. It is such a strange feeling to want so badly for your baby to have another operation. The Glenn is so critical for Zoe because there is a good chance that this procedure will not only significantly lessen the work load of her right ventricle, but has a very good chance of also repairing her Atrial Septal Defect. There is no surgical repair for the Atrial Septal Defect, but Dr. King has seen many cases where following the Glenn procedure, leakage from the common valve is no longer an issue. The leakage from her common valve has always been a huge factor in Zoe's treatment because we have been told that if the leak increases significantly, she will no longer be a candidate in continuing with the three-stage surgeries and will then only have transplant as an option. Transplant terrifies me because transplant is it... the last and only option. Zoe needs all three surgeries to buy us as much time as possible, allowing transplant to be available in the future.
I don't want to see her go through any more pain... but the reality is that it is inevitable. But she is a fighter... and has a strength within her than I cannot even comprehend.
Following our cardiology appointment, we took her back to Randall for another try at a blood draw to check her Heparin level. After 4 nurses and 5 attempts, including IV team on Monday... I was extremely hesitant that the outcome would be the same. I made sure to give Zoe her Lovonox shot at exactly 7am to allow for the most accurate result as the draw needs to be done exactly 4 hours from the dose. I also kept her overly hydrated on a slow and continuous feed, all night and all morning. Danielle from IV Team came in and was able to get plenty of blood from the very first vein she poked. I was so relieved. Zoe is so amazing. She flinched a little bit at the initial poke, but didn't even make a sour face or a peep. She just slept right through it. Although I know this is a tender mercy, it makes me sad to see my tiny baby be so used to needles and pain.
At about 8pm tonight, the Hematologist on tonight called and said that her Heparin level was back and way too high. She wanted me to skip her morning dose and she would send in an order to the pharmacy for a prescription of the new dosage to be picked up tomorrow. She has currently be getting 0.25mls of Lovonox twice daily but the new dosage will be 0.1mls twice daily. We will also need to take her in on Monday for another blood draw to see if the level is in the right place.
It is afternoons like today, when Andrew and I are snuggling both girls in our bed that I feel much needed peace and 'love at home'. We truly are raising daughters of God... one day at a time.