We have known since before Ty was born that he would require some assembly, so to speak. His aortic arch had to be reconstructed at only 9 days old and, as most of you know, we have been in the hospital for the most part since then.
Ty has been a bit of a mystery. Although we know he has a transitional AVSD (holes in his heart and a leaky valve), we also know that he should be able to live a pretty healthy life with his anatomy until it can be repaired at 2 or 3 years of age. Apparently no one filled Ty in on that plan. Our surgeon says he sees a baby like Ty about once a year. A baby that, for whatever reason, can't thrive with his given anatomy and needs a repair much sooner. Our goal was to make it to 6 months of age before the repair. After 6 months, the repair is much less risky. Unfortunately, given Ty's struggles, we moved our goal up to a window of 4-6 months of age for open heart surgery #2. Now we are changing our goals again.
Yesterday Ty headed into the OR for a sedated echo and bronchoscopy. We got a lot of answers that we have been seeking for some time now. First, we met with the pulmonologist after the bronch part of his testing. Ty has a few little quirks that are not uncommon in an heart baby that he will out grow. His airways are a little floppy and that may be contributing in part to his respiration difficulties, but will resolve with some age and size. The best news from pulmonology was a huge answer to prayer and what this mama has wanted to hear for so long: It is very likely that the pulmonary hypertension we are seeing in Ty is due in large part to his heart. They would expect and we will all hope, that after the repair his pulmonary hypertension will be reduced to the point of being a non-issue or even that it completely goes away.
The echo part of his test also gave us a lot of answers. They weren't necessarily the answers we wanted, but it is certainly nice to have answers instead of having a little mystery baby that no one can quite figure out. Let me tell ya friends, it's a little unnerving when an entire department of cardiologists at a premier children's hospital are scratching their heads about your little one. So what were the answers we found?
Ty's heart failure is getting worse. Now in addition to an enlarged right atrium, his left ventricle is beginning to enlarge. The added pressure has caused some LV to RA shunting in addition to the mild LA to RA shunting we were already aware of. His valve that we knew was a little leaky is now looking very leaky. He is overcirculating. We don't know exactly why his heart is reacting this way to a defect that others are able to cope with, but the evidence is there. In short, we can't wait any longer. Ty needs his heart fixed and he needs it fixed soon.
So, it looks like we'll be camped out here for quite a while longer. They are talking to our surgeon today and Ty will be a topic of cardiac conference again at the end of the week to make sure the whole department is on board with his treatment plan. Once these things have taken place, we'll have a surgery date. We were told that our surgeon may want to wait another two or three weeks if Ty can do okay during that time. It really is up to him, Dr. Mettler, who thankfully has already open Ty's little heart up and seen the defect in person. We have complete faith in God to watch over our sweet boy and to work through Dr. Mettler and his more than capable hands. We again feel so blessed to have been gifted such a talented surgeon and such a spectacular medical staff to take care of our baby boy.
We will keep you posted and as soon as we know our surgery date I will be certain to update everyone. In the mean time we are hanging in there, taking one day at a time, and soaking up the little moments of "normal" when we are able to get them.
We have been overwhelmed at the prayers and generosity that friends, family, and strangers have showered on us. We are humbled. Still people continue to ask, and some have even begged, as to what can be done to help. The number one thing we appreciate and covet is prayers and lots of them. We also enjoy visitors - especially during the day time. As hard as it is, we try to be home for dinner and evening hours so that the girls maintain at least a little bit of normal routine. We also appreciate close family and friends who are willing to give a few hours of time in a block to sit with Ty at the hospital (hold him, put him on his play mat, talk to him) so that Chris and I can spend time with the girls as a family or with each other. We are almost never all together at the same time and that is something that would be so meaningful. Especially with it being summer, we feel that it is important for the girls to get to do things with us that they normally would... we don't want them to feel like Ty is overshadowing them.
As for today, we are thankful. Ty has been trending in a good direction the past couple of days. His sats are good, his color is good, and this morning he had LOTS of energy to play on his little play mat - working on his grasp and kicking and waving and cooing until he was completely worn out and ready for some milk and and a nap! Through all of this we are learning to enjoy the small things, to look for the blessings in each moment, and to not take anything for granted.