Heart of Beckett

UPDATE (2/17/13)
First I want to say sorry we didn’t post anything last night, but some nights we just need to come home and crash. I am sure you all understand, but we just want you to know we try to do something every day because you all follow so diligently.
Now on to the good stuff. I want to begin with Friday night. Jonny and I were preparing to leave late afternoon, but he decided to hold Beckett for a little while first. At one point Beckett started gagging pretty hard and his heart rate dropped. This is actually normal (although still a little scary) due to the vagal response, but what followed was Beckett throwing up all over Jonny. While it was not funny for Beckett, it was funny that Jonny got puked on. Haha. Beckett had been a little fussy, but actually seemed to feel pretty good afterwards. So he got an impromptu bath and clean jammies. He has also had a different colored and textured stool earlier in the day, which the doctors said they would continue to watch. He hasn’t had one since. Praise the Lord because they were concerned he might have caught some type of stomach bug. But, ever since he threw up he has been just fine. That night our friend Seth Abram was scheduled to have a concert at Anderson University, which just so happens to be where my youngest sister goes to school. We decided to head up and surprise them both. Just saying yes to going was a challenge for me, as I have not been more than twenty minutes away from the hospital, and Anderson is a good forty-five. I actually almost made Jonathan turn around multiple times. To make matters worse, we showed up at the coffee shop and no one was there. I have to be honest I was a little upset. We called my sister and the show had actually been postponed. So we took her out to dinner instead and then surprised my other sister at work in Anderson. It turned out to be a good night and yet another baby step in me getting away from the ICU.
Yesterday, Beckett had a really good day. No major changes due to it being Saturday. The ENT doctor did come and do a scope of Beckett’s vocal cords. The results were what we were expecting, despite praying for the best. Beckett’s right vocal cord is currently working, but the left is not. This is why his cry is so hoarse. Technically it is not guaranteed that function will return, but they are expecting it to. It could take anywhere from a month to a year. Eventually he said the right will compensate for the left and close off the entire airway. So now that we know what we are dealing with, speech therapy will evaluate him to determine if it is safe to give him milk by mouth, and he will most likely need to have a swallow evaluation to check for aspiration. We don’t know any of those details yet. Beckett also sweats a lot. Partially because he is always wrapped up tightly and partially due to withdraw. Last night Grandma Linda and I gave him a very thorough bath and she rubbed him down with lotion. He always looks so great when he is clean. He has even started to like it more and more. He loves when we wash his head because it feels like a little massage. He didn’t cry at all last night during bath time. We also try to massage his arms and especially his legs when we put on lotion because he has a lot of negative touch in these areas from IVs and medications, so massage is positive touch for him. He was a little fussy when we went to leave, but it made me feel better that he was being rocked by his nurse as we walked out the door.
Today, Beckett has had another good day. They changed his methadone this morning, so tonight he was having a little rougher time. He was crying so hard when were trying to leave. His face turns beat red, he sweats like crazy, can’t figure out his pacifier is in his mouth, and he holds his breath. Not typically good for a kid whose oxygen is lower than normal due to anatomy. We tried rocking, rubbing, patting, pressure, talking, etc. Pretty much all the tricks that normally work. Of course none of them did. But the nurse broke out a sugar treat that helps take the edge off. It is a liquid they squirt on the pacifier. He took it right away and fell asleep instantly. He had been probably the maddest I have seen him yet, so I am glad he only had about two hours to go until his next methadone dose. They also said this morning Beckett is not gaining weight like they would want him to. They said they might need to either increase the volume of milk at each feeding or increase the calories they are using to fortifying it. This is especially stressful for me because, due to all the stress as well as not actually having a nursing baby, I have been having trouble with my milk supply (sorry if that is too personal). This is typical for these types of situations, but we have already depleted a significant amount of what was stored and I can’t really keep up with the demand. We are working on it. Anyway, he did gain weight today, so that is good. We are praying for continued growth, and especially for his heart and lungs to grow stronger each day.
So that is the latest. We delight in good days, and today was yet another. Continually praising God for His mercy on our precious son’s life.
— with Jonathan Rupp at St. Vincent’s Womens Hospital.