What a great Sunday! I'll skip to the best, most important news, Maggie is set to come home tomorrow.
The past few days have been wonderful as she's checked off her to-do list from the doctors. What a productive girl! The nurse told me today that the skin on her back has grown a centimeter. So that big yellowish area on her back is a patch that the neurosurgeon in Houston put on because he couldn't pull the skin tight enough. Opinions have differed, but I think the current consensus is that Maggie's skin will grow over and cover the patch. If her skin does not show sings of significant growth, they will do plastic surgery to close it. For now, we have a dressing that we put over it and change often. We cannot put any pressure on her back, so she lays on her side and will ride in a special carseat. In the NICU, a nurse is with her 24/7 to make sure she is positioned correctly. Not sure how Matt and I will swing it, but we've had to do that for Davey a couple times, so we'll figure it out.
My favorite moment was when the physical therapist evaluated her. Not only did Maggie feel all of her poking and prodding, but she wiggled each individual toe. My eyes filled with tears to see this miracle!
Maggie is not able to fully empty her bladder, so we will start using a cathetar twice a day to prevent her urine from refluxing. Bladder/kidney issues are ever present with spina bifida. The nurses say that cathing is no big deal, but I tried it today and failed. I was sweating bullets as I tried to navigate her tiny anatomy. I have to pass it off tomorrow before they will release her to my care...yikes! Davey has not had to be cathed. His issue is that he goes and goes. But now that he is older, we'd like to get him out of diapers. This requires that he start taking a medication that will tighten the bladder muscle, so he can "hold it". Then we will cath him every 3-4 hours, so he will be socially continent. I'm sad with the thoughts of having to start this process. It seems like a loss of freedom to be tied to such a routine. But it has to be done and I think Davey's anatomy will be much easier!
For now, Maggie's ventricles and head size are looking good. The fluid on her brain is not causing pressure. We will continue to monitor it closely to make sure she doesn't need a shunt.
Oh I can't wait for tomorrow!
Here's the link to the last news story. Glad the media footage is behind us. But I'm thankful for the experience. http://kutv.com/news/top-stories/stories/vid_1528.shtml
The past few days have been wonderful as she's checked off her to-do list from the doctors. What a productive girl! The nurse told me today that the skin on her back has grown a centimeter. So that big yellowish area on her back is a patch that the neurosurgeon in Houston put on because he couldn't pull the skin tight enough. Opinions have differed, but I think the current consensus is that Maggie's skin will grow over and cover the patch. If her skin does not show sings of significant growth, they will do plastic surgery to close it. For now, we have a dressing that we put over it and change often. We cannot put any pressure on her back, so she lays on her side and will ride in a special carseat. In the NICU, a nurse is with her 24/7 to make sure she is positioned correctly. Not sure how Matt and I will swing it, but we've had to do that for Davey a couple times, so we'll figure it out.
My favorite moment was when the physical therapist evaluated her. Not only did Maggie feel all of her poking and prodding, but she wiggled each individual toe. My eyes filled with tears to see this miracle!
Maggie is not able to fully empty her bladder, so we will start using a cathetar twice a day to prevent her urine from refluxing. Bladder/kidney issues are ever present with spina bifida. The nurses say that cathing is no big deal, but I tried it today and failed. I was sweating bullets as I tried to navigate her tiny anatomy. I have to pass it off tomorrow before they will release her to my care...yikes! Davey has not had to be cathed. His issue is that he goes and goes. But now that he is older, we'd like to get him out of diapers. This requires that he start taking a medication that will tighten the bladder muscle, so he can "hold it". Then we will cath him every 3-4 hours, so he will be socially continent. I'm sad with the thoughts of having to start this process. It seems like a loss of freedom to be tied to such a routine. But it has to be done and I think Davey's anatomy will be much easier!
For now, Maggie's ventricles and head size are looking good. The fluid on her brain is not causing pressure. We will continue to monitor it closely to make sure she doesn't need a shunt.
Oh I can't wait for tomorrow!
Here's the link to the last news story. Glad the media footage is behind us. But I'm thankful for the experience. http://kutv.com/news/top-stories/stories/vid_1528.shtml
Hours before saying hello to Maggie.
The lady crew. What would I do without my mom and sis?!
The man crew.
Love the warm blankets after giving birth...the best.
Meeting her Hattie.
Maggie's other mothers, a sampling of the neighbors
who helped so much the past few months.
Did he really just say that?
I think Maggie looks most like Josie.
The crew!
Hooray!!!!! I'd love to help with the caths if you need back up:)
ReplyDeleteI am so happy for your family. Good luck having Maggie at home. Love the last picture of your beautiful children.
ReplyDeleteSo happy for you guys!!!
ReplyDelete--Angee :)
Millie We are so happy for you all! Maggie is very beautiful!! Have a wonderful time with Maggie when you get home!
ReplyDeleteMillie, I was a pediatric nurse for 14 years. I may be a little rusty but I would love to help with staying the night and making sure she stays on her side as well as with the Caths. So happy for all the great tender mercies for your little Maggie!
ReplyDeleteYay!! So excited you get to bring your sweet girl home!
ReplyDeleteYay! Can't wait to meet her! Your family looks great!
ReplyDeleteYay! We are so excited that everything has gone well and Maggie gets to come home! So wonderful! What wonderful miracles have happened all along the way.
ReplyDeleteI'm so happy that she is coming home! What a little miracle she is! Your family is in my prayers!
ReplyDeleteThanks so much for the update, Millie! We loved the pictures and we are thrilled Maggie is doing so well. I loved the picture with all four of your children. What a beautiful family you have! We love and miss you!
ReplyDelete