Well we have not updated the blog because there have been just little changes nothing big to report. There still are only little things going on. Danielle is doing good still on CPAP. Last weekend there was a controversial effort made and she was switched just to regular oxygen thru a nasal canula. This lasted for about 24 hours and she was switched back to CPAP. We were very surprised that they attempted this because she is just so little, one doctor was not happy they tried it. But as the head doctor said 'they gave it the ole college try and it was a failed attempt, as I knew it would be.' Not a bad thing, it took Dylan 4 1/2 months before he got to try just regular oxygen. So when they put her back to CPAP they upped the settings from 4-6 which is still low. Tonight they actually did a chest xray and she was a bit over extended so they lowered the CPAP to 5. But these changes from CPAP to canula and back to CPAP caused her to get 'gassy' air inside her tummy and it to push up on her diaphragm and her belly to get distended. So they have her belly venting thru her feeding tube in her mouth and it is much much better, they still have it vented just to be sure. But she has had dirty diapers which is great. It is amazing with these little preemies how excited we get about poop and pee! I mean it is a really big deal!!
So on to pee. It was thought and still is that there is a bit of renal failure going on. I say thought, because her kidney ultrasound is normal, they give her fluid and she pee's it out, she is not puffy at all but her creatnine or kidney function numbers are elevated which leads them to believe there is some renal failure. This is a touchy subject with us. We don't want to be ignorant if this is a serious issue, which is it concerning. But depending on who you talk to, which doctor, the situation is different. But tonight the update Brad got was that she pee'd great today and her numbers are better. So we are great with that report!
Because of the gas in her tummy they stopped her feeds. As a result they are giving her obviously IV nutrition, this caused her electrolytes to be out of whack a bit and her blood sugar to be elevated. So they have adjusted her fluids a few times and the numbers are now good. They were hesitant to start feeds again today to be sure the numbers were good so hopefully tomorrow she can get mommy's milk again. But I have been giving her lollipops because she has been such a good girl! You know what her lollipops are right, the q-tip with breast milk. I just wanted to clarify!!
We or I the previous two days had experiences with nurses that we wish we could forget. The issues have been addressed and I stated our concerns. I for the first time yesterday felt like I could not leave, not that I wanted to but I felt uncomfortable even leaving to use the bathroom, it was that bad. Its just one of those things that we have learned that there is a developmental care plan for our daughter for a reason and if that isn't being followed and we feel like we are not being informed and nurses are being lackadaisical then we are speaking up. Unfortunately we have had to. We don't feel that her overall care by the docs is compromised, they are doing great. Just a few nurses who have treated our baby like she is 'just another preemie' is not what we are taking lightly.
So I have been able to Kangaroo now 4 times and Danielle and I both love it so much. It is such a bonding experience and it is amazing to look at her coloring after the Kangarooing and see how much better it is. It is just so great physically and developmentally for her. Hopefully daddy can do it soon, but he wants her to get a little bigger. She also is no longer under the bili lights. So her bed is always dark and covered with a thick quilt blanket. So it is very hard to get good pictures because it is so dark in the room. Here are a few new pics, she is now swaddled all of the time now and loves it. But you can't really see her face because she is so tiny and swaddled plus the room and her bed are so dark, but you can get the just of her in there.
So we just want her to keep going at an easy pace and just to be able to stay healthy, off the vent, be able to have feedings again and just to grow. It is really the prayers that keep us going strong and our little ones fighting.~
1 comment:
Thanks for the "lollipop" clarification...I was a little confused. Sounds like she's getting stronger and stronger each and every day. That's too bad about the nurses, but hopefully after a little tongue-lashing they'll get it together. I also wanted to tell you how much I appreciate your blogs, its hard being so far away and I'm always thinking about your family, so its nice to get an update every few days, it makes me feel a little closer to home. Every day I come to work and the first thing I do is check my email and check your blog. Just know you guys have so much love and support coming from all over the place. So, thank you. And I will continue pray for you guys and send love your way. Take care.
Jennifer Hupe
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