Long time, no talk. I am so sorry for not being better at keeping the blog up to date. And then when I do finally get the chance, it won't let me blog using my laptop. Grrrrrr. So, I am writing a quick note to everyone via my cellphone. Things have been verrrryyyy busy in the last year. After her last cath, they conferenced on Lil Miss and without going in to major detail, it was determined she was note a candidate to have her valve replaced via open heart or through the cath lab. The surgeon felt she was too high risk, we consulted her previous surgeon who is now in St Louis doing heart-lung transplants and he felt in her case again, too high risk 😞 Not something we want to here. It was yet another moment of disappointing news that we were at a stopping point to "fix" her. So, the team felt at that point the safest option was to attempt to begin a medication to see if her little arteries in her lungs would respond and open up helping the pressures in her heart. So, we began that last October and have been taking it ever since. A bit pricey($2000 a month) but we will give it a shot. They don't feel it will work, but let's all remember Jenna is running the show, so you never know.
Throughout the year we have had our ups and downs. We were sick at least once a month, but managed to avoid the hospital. We saw her cardiologist at home for checks and things were fine. We had one episode where Jenna had "chest pain" but it determines to be nothing. So they feel she is beginning to become aware of her condition. Overall it was a decent year.
School wise she has down awesome! We completed kindergarten and we will be starting 1st grade in less than a month. I can't believe it! She is 7 and all this is happening?! Where did my baby go? She is reading so much better, excelling in school and many other things. She is still delayed but making great strides! So proud of her. She has managed to potty train herself this summer(except at night) and begin taking all her medications by mouth. She is such a Rockstar!!
So-now that I have tried to quickly summarize things I will bring you up to speed. We are yet again back in our home away from home, Cincinnati. We are going in for Jenna's 13th heart cath tomorrow. It is to begin at 11, maybe sooner depending on the case before her. This time it will be another doc performing it, Dr. H. He is the pulmonary hypertension expert here, so they want him to go in and look around and see of there are other medication options for her. If there are any arteries to open he will do that as well. Her usual doc, Dr B wants to explore every option for her, as do we. So here we are, looking to see of the medication she has been taking is working and also to try a few other things to see if she will respond. We will see.
So, I just wanted to quickly let everyone know what was happening and ask that you please pray for baby girl. We are hoping that maybe by chance her numbers have gone down-they haven't since birth but you never know. Also, pray for us. Justin and I are nervous, anxious, scared, etcetera. The usual feelings we have before her caths and a little more. Only because they have no surgical interventions for her anymore and now it is just meds to try and it is all new to us. We are hoping for the best. Lil miss is very aware of going in the hospital now, she is asking questions and getting anxious. So hopefully she will do ok. I will hopefully be able to blog more tomorrow-sorry for the late update. We love you all and thank you for the prayers in advance!!