I guess I need to start off by explaining the whole ROP thing. As mentioned he currently has level 2. Level 5 is the worst level – irreversible blindness. Right now he has bad vision – even worse than regular newborns. It’s likely that when he looks at people he only sees silhouettes. However, they won’t do anything about it right now. Frequently, level 2 fixes itself, but if it doesn’t then there is the option of glasses or laser surgery. Right now, they will do nothing. If it starts to get worse, then they will treat.
The registries are now up and running! We have registered at Target under the mother’s and baby’s names. We have also registered at Babies R Us with the mother’s name, but used Jordan Joseph as the baby’s name. Anyone who is unable to visit either store in person my visit the websites and make purchases online. His due date is Nov 3rd which is only 6 weeks away. Obviously we don’t know yet when he is coming home, but it could be a little early, or it could be really late. It depends on how he progresses on his stuff. No one is required to get him anything, but I do have one request. Don’t get him something from the registry and call it a combination Birthday and Christmas gift. If you can only get him one gift, that’s fine. No kid in history appreciates a gift that’s both birthday and Christmas – they just think that they were robbed of a gift.
Jordan really sucks now. In fact, they fed him his first bottle over the weekend. There are 30 ml in a fluid ounce – a full feed for him. He took 17 ml yesterday. That’s most of the bottle. Then he started getting tired. He is still working on coordinating the sucking, breathing, and swallowing all at once. He needs to be able to take the entire bottle, and then do it 7 more times a day. And then do it for several days. On top of that, as he grows they put more stuff in the bottle. I know all of you are asking how long that will take – it depends. Some kids take to it very easily. Any of you who have been checking the blogs on the left know that some kids never get there and get sent home with special equipment. Jordan is at the beginning of a long road that will take more than a month for him to finish, but he will let us know when he is ready.
Do you ever watch Deal or No Deal? It’s a game show on TV where they fly you to LA for an all expense paid 2 day vacation and they put you on a game show where you are guaranteed to win money. The thing is you win anywhere from a penny to a million dollars. I find it funny when the people who win the penny act as if they lost the game. I would love to have someone pay me a penny to take a 2 day all expense paid vacation in LA. It’s all about relativity. Yes you did win a penny, but you COULD have won a million dollars. I felt like that this weekend. Jordan drank from a bottle for the first time. He did drink half a bottle – which was great for his first attempt. However, he COULD have finished the whole thing off. He gained an ounce over the weekend, but he COULD have gained 3 or 4 ounces. I am so very proud of how far he has come since birth, and how well he has done this month, but I don’t win my million until I drive him home. My heart says they need to hurry up and feed him more, but my mind says slow down and appreciate the full nights sleep as long as I can.
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Getting even closer. I just checked back to our records. I began breastfeeding/bottle feeding the second week of Dec (around Dec 12 for Serena, and Edwin had a little setback where he went back to CPAP for a couple fo days so he started later) and the twins came home Jan 29th. They would have been home the week before but we were waiting for nursing. So it was a little over a month from when they started with the bottle and actually came home! So exciting for Jordan. As for ROP, things changed quickly for my kiddos...one day it was okay, the next check up we had surgery scheduled for that night (New Years Eve). I hope Jordan is one of the lucky ones who avoids the laser surgery. That was even more of a set back b/c both kids wound up back on the vent because they didn't breathe on their own once they were sedated, plus it threw off their feeding, and thus they lost weight. So all in all if Jordan does well with the bottle and no other issues arise, you are probably looking at about 4 weeks until he is home! So exciting!!!
Google freaks...love 'em! My question is really more along the lines of: when do they decide that his ROP definitely will or won't progress and decide what to do about it? (Or lets see how many google go-ers we get: when is his retinal vascularization expected to be complete?) Kinda like by 34 weeks or so he should start to suck, by what week (give or take) should his eyes stop developing? (and yeah, I was online @ 3am yesterday looking for the first bottle report- go Jordan!!)
In answer to the ROP, they will probably monitor until after he is released, but the risk goes down dramatically when he stops receiving xtra oxygen. Thx 23wkmommy for the encouragement. If Jordan is able to come home early, I am going to throw a micro preemie party. The party will be at my house, but in order to prevent infection I won't invite anyone, I'll just put up a webcam.
Big Ali, you have such a great attitude!! Keep it up!!! Before you know it you'll have the sleepless nights and you long for those NICU nights, ha ha!!
Sounds like he is doing GREAT 17 cc is a lot to drink!!! Have you guys given him a bottle yet??
Nina started bottle feeds on 6-1 and came home 6-21!!! I found the bottle feeding the most frustrating part of the whole 14 weeks we were at the NICU. We also had stage 2 that completely resolved itself!
COME ON JORDAN! KICK NICU ASS!!
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