A rough night...
Yesterday, Joe and I were feeling very guilty that we only spent a few hours with Will. It's very hard right now because when we are with Will we feel guilty about not being with Julianna, and when we are with Julianna we feel guilty about not being with Will. So after Joe put Julianna to bed last night, he came back up to the hospital for a few hours to be with Will. We are both very glad he did.
Will has been slightly jaundice, so they decided last night to start him on photo therapy. Sadly this means he has to be in an isolette. I hate isolettes. Even though you can open the little portholes and touch him, I still feel like he is "off limits" from me. Like he is being separated from me even more. One of my happiest NICU days with Julianna was the day she was taken out of her isolette and put into an open crib. I felt so much closer to her. Since he is getting photo therapy, he cannot be swaddled and he loves being swaddled. So he is much more fidgety and not as relaxed. This means his respirations are a little higher and his oxygen levels are slightly lower. He also doesn't like the mask he has to wear over his eyes.
He managed to get irritated enough that he pulled his NG tube out. This meant they had to feed a new tube through his nose and into his belly. Joe said Will did NOT like that, and screamed the loudest he has ever heard him. They also had to then do an x-ray to make sure the tube was placed correctly. Needless to say Will was very agitated.
But the main reason I am glad Joe came to the hospital last night was that Will's nurse let Joe hold him! Joe hadn't held him since the OR the day he was born. And Will hadn't been held by either of us in 6 days (since the morning he was born). I am extremely jealous that I haven't gotten to hold him (I have to wait until he is off photo therapy and after his cath-details below), but I am so glad one of us got to. Will needs to be held and cuddled by his mommy & daddy. He needs to know who we are and that we are there. I know how important it was for Julianna to be held as a preemie. It helped her get bigger and stronger and I feel it would do the same for Will.
Will had another echo of his heart today. Joe and I were hoping to make it up to the hospital in time to be here for it, but they ended up doing it this morning, and we were still celebrating Easter with Julianna (I'll be posting about Easter later). Dr. K (one of Dr. P's colleagues) saw "good improvement" in the function of Will's left ventricle! We are taking this to mean there was significant improvement since his last echo on Friday.
We were still unsure about what procedure Will would be getting tomorrow, so we talked with the nurse practitioner on duty. Because Dr. K saw the improvement, they have decided to do a heart cath tomorrow. Basically, they will be doing some diagnostic testing during the cath to gather some more specific data about how well his heart is functioning. From that data they will choose one of two paths for his little heart.
The first path is a single ventricle repair (or bypass) in which they will bypass his left ventricle and his right ventricle will support his body. This is the 3 stage procedure that would require all the open heart surgeries (the treatment for HLHS). This is obviously not our first choice of treatments. This would be the direction the doctors would choose if they find his left ventricle is just unable to pump enough blood to support his body.
The second path is a double ventricle repair. This one has more options and would depend on just what parts of Will's heart need fixing. If they find his left ventricle is able to pump enough blood, then more than likely they will use a balloon to widen the opening between his right and left atria and also to open his aortic valve more. Both of these could be done while they are in the cath lab. At that point it would be some more waiting to see how well his heart would do. This is definitely the much better route.
He is the second cath "case" of the day, which means he will probably go for his cath around 11 or 11:30 depending on how long the first case takes. He will be under general anesthesia for the cath, which scares me, but I know he will be constantly monitored and that he will be surrounded by great doctors that are ready for any emergency should one arise.
He is definitely having the cath tomorrow, and possibly other procedures depending on how well it goes. We are praying that the cath shows even more improvement in his heart and that his left ventricle will be able to pump enough blood to support his body and that Will handles the anesthesia well. We are also praying that his heart improves quickly and that he will be able to come home with his mommy and daddy and big sister, Julianna, very soon!