Jared Conked Out
Anthony With No CPAP!
The boys have had a nice couple of days. They have both been relatively stable over the last 48 hours or so which is great.
Jared finished his last round of Ibuprofen for his PDA. Sadly we got the news tonight from Dr. Patel that the ductus did not close with the medication. This really doesn't surprise me since the prognosis was about 50-60% with the medication in the first place.
It did go from large to moderate though, and that is good. A few days ago the doctors felt that the large PDA was affecting his breathing. Today however, the doctors feel that the PDA is not clinically affecting him. This buys us some time because it looks as if surgery to fix the PDA of both boys is on the horizon. The good news is that the longer we can wait the better it is for both of them.
The backup rate on Jared's CPAP machine was shut off today. This means that the CPAP is only supplying oxygen, and all of the breathing is being done by Jared himself. Since the backup rate has been turned off Jared has done well. His oxygen saturation in the blood has been between 98-100% continuously. Dr. Patel thinks that tomorrow he will take the CPAP off completely and Jared will be on the nasal cannula only, like his brother. When this happens Jared will probably get his first taste of Momma's milk. This "trophic" feed will consist of 1cc every 6 hours to start, just like Anthony.
Hot off the press: Jared just peed on his night nurse during a diaper change. I guess it was a good one because she had to change her shirt afterwards. Their weenies may be tiny at this point, but they seem to get good distance so far.
Anthony is doing well too. He remains on the nasal cannula and off the light therapy. It is so great to see his face! His PDA as far as we know is still open, but like his brother it does not seem to be hampering him. So, we remain in a "wait-and-see" mode with it. The nurses say they cannot hear his murmur (PDA), but only an echocardiagram can confirm for sure if the ductus is closed. In any event, so long as the ductus does not affect him, surgery remains some distance away.
Feedings for Anthony are going great so far. He is now on a "four point protocol." Every four feeds the amount is increased while the I.V. food is decreased. At 2 a.m. tonight his food intake increases to 5cc. Let's hope he keeps it down.
Up to this point he has kept all of his food down. He has had a couple of spit-ups, but nothing out of the ordinary according to the NICU staff. An encouraging sign is that there is no residual food in his belly after feeds, which means he is digesting the food they are giving him. Perhaps more encouraging is that he had another nice poop today. I told the nurses that he's a Liso, so eating shouldn't be a problem for either of the boys. Check back in 16 years when they are in high school on that issue.
I must say, the feedings to me seem to be really making an impact on Anthony. It has really added color to him, and seemed to liven him up and strengthen him. I don't know how much affect it has had on his stability since he's been pretty stable the last few days, but I just have this feeling that he is going to really turn a corner now that the feedings are going well. I hope they continue to go well, and he starts gaining some weight.
I think Jared learned the peeing thing from his brother. We were told that Anthony peed on his day nurse twice yesterday. Says grandpa, "You're just like your Father." I guess what goes around comes around, and everything we ever did to our parents comes back to us double. For me, I think that is obviously true. So for now I'm glad they haven't peed on Daddy, though I suspect my day will come.
So, there's not much to report over the last 48 hours. No news is the best news for us. This journey has really taxed Danielle and I so far. We cling to the positive news and remain hopeful that they get stronger. We are always on guard for the steps backward, and pray our boys keep moving forward.
We are taking things one day at a time. The last two have been good, but tomorrow is always a new day. We are keeping our faith in God, and ask every day that he watch out for our boys. They continue to fight, and will continue to fight, and Momma and Daddy will continue to be there behind them the whole way.
Fight On, Little Fighters! - Love Daddy