Lots of changes happened this weekend in my absence, some good others not so good.
First the good news, Britian was taken off of the high frequency jet vent and put on a conventional jet. She tolerated the change very well which earned her a graduation ticket. Saturday afternoon I got the call that she had become Jillian's newest neighbor. I was so excited! With the girls so far apart for the past 2 weeks, I haven't been able to spend as much time with them both. This week will be so much easier because I can see them both at once again just like before.
The good news of Britian graduating out of ay 1 was tempered with the news that Jillian was put back on CPAP. Her breathing was becoming too labored so the decision was made to take her off of high flow and put her back on CPAP. I had noticed a change in her breathing on Friday before I left so this news was not totally unexpected but a bummer and a set back none the less. I know she just needs time to grow and get stronger so this set back isn't nearly as emotionally draining or frustrating as others in the past.
The highs and lows of the NICU roller coaster are definitely smoothing out. The lows aren't so low and the highs aren't so high.
I do have to say though that I caused a bit of a wave here in bay 2 when I returned for my weekend visit to see my husband and older children. I will spare you the boring details but suffice to say heads rolled a bit when I came in and started asking questions. I am far from a typical NICU parent. Not only do I have a biology background and understand the lab result values when they are spewed at a fast rate every morning during rounds and after every blood test. I am also here ALL week. Surprisingly this alone makes me an anomaly. Most parents understandably only come in the evenings or at other random and limited times. A list of things were changed with the girls' care this weekend without my knowledge. When I started asking specific why questions and not accepting their "generalized" responses the "higher ups" were called to answer my concerns. Other parents might accept the general answers without questions why, but I am not one of those parents.
I hope all of you have a great week and please continue to pray for my girls and their health and also for my wisdom and patience as their Mother and an integral part of their care team.
To my fellow 2011 May Moms of Multiples, keep those babies cooking.
First the good news, Britian was taken off of the high frequency jet vent and put on a conventional jet. She tolerated the change very well which earned her a graduation ticket. Saturday afternoon I got the call that she had become Jillian's newest neighbor. I was so excited! With the girls so far apart for the past 2 weeks, I haven't been able to spend as much time with them both. This week will be so much easier because I can see them both at once again just like before.
The good news of Britian graduating out of ay 1 was tempered with the news that Jillian was put back on CPAP. Her breathing was becoming too labored so the decision was made to take her off of high flow and put her back on CPAP. I had noticed a change in her breathing on Friday before I left so this news was not totally unexpected but a bummer and a set back none the less. I know she just needs time to grow and get stronger so this set back isn't nearly as emotionally draining or frustrating as others in the past.
The highs and lows of the NICU roller coaster are definitely smoothing out. The lows aren't so low and the highs aren't so high.
I do have to say though that I caused a bit of a wave here in bay 2 when I returned for my weekend visit to see my husband and older children. I will spare you the boring details but suffice to say heads rolled a bit when I came in and started asking questions. I am far from a typical NICU parent. Not only do I have a biology background and understand the lab result values when they are spewed at a fast rate every morning during rounds and after every blood test. I am also here ALL week. Surprisingly this alone makes me an anomaly. Most parents understandably only come in the evenings or at other random and limited times. A list of things were changed with the girls' care this weekend without my knowledge. When I started asking specific why questions and not accepting their "generalized" responses the "higher ups" were called to answer my concerns. Other parents might accept the general answers without questions why, but I am not one of those parents.
I hope all of you have a great week and please continue to pray for my girls and their health and also for my wisdom and patience as their Mother and an integral part of their care team.
To my fellow 2011 May Moms of Multiples, keep those babies cooking.
I would totally be like you, Alexis! In fact, I think I drive my girls' pediatrician batty because I know what she's talking about in terms of medical terminology, etc. (just wait until she tries to push Gardisil on us/them!). You are your girls' main advocate; keep strong for them. :^)
ReplyDeleteHow are your other kids doing, by the way? Is someone able to help them keep up with academics - or are they on hiatus for the time being?
Tina, Don't get me started on Gardasil, I won't be allowing it for my girls either. As for homeschooling, my oldest just finished the stare testing for the year so from here on out he will be on a more relaxed academic plan. But he will definitely still be learning. I plan my lessons on the weekend and my kids work on their stuff while I am away. I teach them any new concepts on the weekend while I am home. I am really looking forward to the fall though when we can resume a more regular school routine together as a family. I miss that bonding time together with my kids.
ReplyDeleteNo Gardasil here, either (my girls are 11 and 13), and I'm so glad to hear that you are asking lots of questions and being very involved in their day-to-day care!
ReplyDeleteHugs from a former preemie identical twin girl!
Julieanne
http://www.JoyInOurJourney.com
So good to get on my computer and see an update about Britian, so nice to know she is not "bunking" with her sis. Continuing to pray for you all.
ReplyDeleteStill cooking! I don't know how often you read the May board, but we've had several more gals deliver in the last couple of weeks. I expect there will be LOTS more in the next couple of weeks! We're all thinking about you guys. :-)
ReplyDeleteJen - jenny_journalist