Thursday, September 4, 2008

Chin up babies...

Chin up babies

No really, keep your chin up. Turns out the girls have a nasty little habit of having apnea and bradycardia. This is a fancy way of saying that every so often they decide to stop breathing which then drops their heart beat. Sometimes this happens because their chin drops and closes their teeny tiny airways, and sometimes it happens because the sneaky little monkeys just decide to stop breathing. Now if you are a medically ignorant parent, like myself, this is a pretty scary thing. You’re just sitting there loving on your baby and they stop breathing, which in turn convinces their heartbeat to slow way way down which in turn sets off a couple of alarms. Now what you expect, as a medically ignorant parent, is a sudden flurry of activity. Doctors and nurses to run in, your wife to go into hysterics, and generally people to be concerned. If this is what you expect you couldn’t be more wrong. No one comes running in, your wife glances at the screen and shrugs, and finally a nurse, or your wife casually walk over and give your baby a little pat. Often this is accompanied with a soothing voice saying something like, “Time to breathe sweety.” Now again, I’m expecting a frantic voice saying something like “BREATHE! ###%^!!” But again you couldn’t be more wrong. Now after a few times of this happening you begin to demand answers from your medically literate wife. You expect some technical answer but what you get is, “Oh they do that. We call it A’s and B’s. All preemies do it.” They do that? Preemies just forget to breathe? A’s and B’s? You know what I get when I put A’s and B’s together? Ab. That’s it. And if we have multiple A’s and B’s then I get Ababababab. But what do I know? I’m an ex-reading teacher turned vicar. Evidently this is just something I am going to have to get used to.
In other news Emma Jane had her echo today. Good news and bad news. The hole is still there, but it is smaller. So it looks like the ibuprofen is working, albeit slowly. The current plan is to give her another couple of doses and check her heart again tomorrow or the day after. Things are not going quite as smoothly with Parker. She received her first dose of ibuprofen yesterday but now we find she is not peeing. Ibuprofen is hard on premature kidneys so her urine output has decreased. The doctors are giving her extra fluids to try and get her to pee more so that any future doses of ibuprofen will do minimal temporary damage to her kidneys. When we left they had given her extra fluids but she still wasn’t peeing enough. So, one of my prayers tonight is that Parker would pee. I never figured I one day find myself praying for the pee of my daughter. But…here I am.

All this said, things are going fairly well. Again I want to thank all of you for your prayers and support. God bless, and good night.

9 comments:

Amanda said...

Mary Jane, it's been over a year since I've seen you or talked with you...moving to Minnesota, I just haven't kept up with people very well!! I'm sorry for that. I actually didn't know that you were pregnant. Angela Burns sent me your blog and shared with me that you unexpectedly met your daughters a little earlier than planned! First, congratulations-even with the ups and downs you are facing, it is an incredible joy to now see your two sweet girls. Second, God bless you and your family-I am not saying that to be cliche...truly, God pour your blessings all over this family, amen! Finally, I will continue to pray for you all. I wish I could do more for you but I'm just a bit too far away. If you have just a second, could you send me your street address? AVFLove@msn.com. I will keep checking your blog for updates. With Love, Amanda Robert (former SLCH PICU nurse)

Unknown said...

Praying for pee :)

The Byrges said...

Parker,
Aunt Mel and mommy know all about pee too. I am glad your daddy is learning all about these things. We need kids at work to pee a lot too! I pray that the four of you would continue to grow and get strong. I pray the Lord would bless Parkers kidneys and bring forth a fountain of urine. I can't wait to see you little amazing girls!! All my love.
Aunt Mel

Paul Luikart said...

Hey, guys. So, of course you continue to be in my and Emily's prayers.

I really appreciate the sense of humor with which you guys are dealing with things. I dunno. I just appreciate reading these posts and hearing your voice, Jason, as if you were describing this stuff to me in person. I realize that there are more times than not that there's not a lot to laugh at, but I'm thankful you guys are able to do it some. I don't think most people would be able to maintain a sense of humor at all.

Talk to ya...

kim said...

Ditto what Paul said....
Jason, you have an amazing ability to find the good in any situation, and what a blessing that is for Mary Jane to have you around to lighten the mood every now and then! I know it must be so hard to leave your girls and make those trips back and forth. We are praying for you in random little moments of the day and really appreciate the detailed updates so that we can be specific in our requests! Mary Jane, I love you, and I'm here for you if you ever want to talk...kiss those babies for me!!!!
Kim:)

Uncle Jim and Aunt Nancy said...

Jason you are so fortunate to have Mary Jane, who knows all the medical lingo. We did notice that you didn't have a gown on in the NICU. That has definitely changed since Tim was born. We had to go through a major scrubbing and gowning before we were allowed to go see Tim. Thanks for the upates and continued prayers for you and the girls.
Nancy and Jim

mrweaverphysics said...

when you are at home with the girls and changing diapers you will again be praying for pee, but in this case, you will be praying that they do not pee on you.

Anatomy helps you a bit there.

I avoided being peed on by Sam, but not Beth. It didn't help that I was standing in the doorway laughing.

Anonymous said...

Jason and Mary Jane,
Everyday I check your blog and pray for you and the girls. Today's prayer is for pee, holes closing, and one more day of growing bigger and stronger and closer to going home. Jason, you have a real knack for writing!
Terri Gibson

Todd and Mary Wolfram said...

Ah, the memories ... my preemie baby (5 weeks), the jaundice and bili lights, the "Mr Hollywood sunglasses" to protect his eyes from the bili lights, not being able to hold him because of all the "stuff" around, in, and attached to him. Patting his little baby butt because that's all I could touch. The apnea and bradycardia ... my preemie baby is now 19 years old and stands 6'2". Chin up, Daddy ...

Mary Wolfram