What a differrence a week makes. Last Thursday at this time we were headed to the NICU to give Cole moral support as he fought to stay on CPAP. Now tonight we are just chilling at home talking about how good the babies are doing.
We had our development meeting today with all the different *pists (all 7 of them). Apparently our kids rock! They are at least 1 week more advanced than your typical 24 weeker (who is now 30 weeks). They have already starting showing different mature actions that they wouldn’t expect from them for another week or so! In the coming weeks we are going to work with the babies to get bigger and stronger. Since we did have big babies (for 24 weekers mind you) who were in the top of the percentile for their birth weights, they want to get the kids back on course to their true corrected weight.
Cole’s number one priority is getting his tongue back in his mouth. Paige’s number one priority is to keep looking pretty. Apparently Paige responded perfectly to the steroids and they are very pleased with the way she is progressing. They don’t think Cole responded that well to the steroids, so more than likely if he has trouble again with breathing, they won’t be so quick to give him steroids again. There is also a very good chance that when Cole does come home, he will be on oxygen for 3 or 4 months based on his current respiratory progression. This seems more common in this day and age. I guess a few years back, babies born like ours more than likely would be on oyxgen all the way till kindergarten. The way Dr. Straylemyer put it: “We’ve come a long way in medicine”.
So all in all we were very pleased with the meeting. It helped reinforce the fact that our babies are getting better and there is an end in sight. It also helps with keeping our relationship with the staff open and direct. We have some excellent people on our team from the respiratory team (hopefully we will not be needed your services too often anymore) to our nurses. I’m sure the doctors do a good job too, but we don’t seem them that often because they are savings lives (the nerve, yes I’m kidding, we see them all the time). They have a good plan in place for tracking our progress. I’m glad we are in a very experienced NICU. They even think within a month we’ll be ready to go to the Thomas campus where they have nesting rooms. A nesting room is where we are able to actually move in with the babies and help get transitioned to our new lives. Suzan, did you do that? Has any of the other moms out there done that? Sound interesting to say the least.
To answer a few comments:
Depending on settings with your computer you will need to hit refresh to get the most current copy of the website.
Depending on the nurses that are on shift, we have certain nurses that are supposed to always be with our babies. We’ve pissed a few off because we had to choose one over another for our primary nurses. If it was up to us, we would pick multiple primary nurses per baby, but hey we don’t make the rules, we just live by them.
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Glad to hear that the babis are doing so well. A few more weeks and you will be even more amazed!
We never had a “nesting room” for our boys, but we did have a step down unit. It was a much quieter room where the babies were there to just grow and learn how to take their bottles on the own. We were much more involved in there care at this point. We were required to spend one night when our first son came home. Two of our boys did come home on oxygen for one month. At that time they kept pulling of the oxygen all the time and were doing fine, but continued to be on apnea monitors. The technology has changed alot even since my boys were born about 6 1/2 yrs ago, the CPAP even looks different, and when our boys were on CPAP we weren’t allowed to hold the boys due to the trama to their noses from the CPAP. Thanks for all the updates. I love reading about your babies and their progress. They will be home before you know it!
Angel (mom to Justin, Andrew, Brandon 6 1/2 yrs, Angie 12 yrs)
We did use the nesting room twice but it was more of a hassle than a help. By the time we were ready for the nesting rooms, we were pretty much familiar with every piece of equipment that we would need to bring the babies home. I think it was more protocol than necessity. The rooms over at Thomas are nicer thoughbecause they are more private. Hopefully you will get one of the rooms with the window.
our little guy came home on oxygen and finally came off it about a week ago. You will also be getting a monitor too then, which we can’t wait to get rid of.
Since thebabies have the same nurse now, does that mean Paige was moved? I am going to guess that you are in Pod 3 if you have nad Debbie. She was great. She was a co-primary for our Ella. Jane was with her too, whom we really enjoyed from Pod 3.
Yeah we have Debbie as a nurse. She was so instrumental in helping Cole through his vent to CPAP stage. She wouldn’t let anyone near his bed and told everyone around his bed to be quiet when they started acting up.