The nurses and doctors use terms to describe a babies status that are a little miss leading. When one of the nurses says her baby is "misbehaving" as many many nurses said Ruby during the first 5-6 weeks of her it means they are not fairing well. As in medically they are doing poorly. Sometimes Chris and I would use the same terms here, without realizing that those who didn't have a front row seat to everything might not understand the extent of how close we came to loosing her many many times. Ruby is a fighter. She's proven herself more than once. She has fought the big bad pulmonary hypertention monster and for the most part is winning. She still requires some respiratory support and only time will tell how long she will need that. She defied the odds by being born sicker than expected and then did the same again in over coming so many things. Chris and I are still a little shell shocked. I imagine this is what post tramatic stress feels like. Chris and I have daily conversations about how to go about not spoiling her. I think it's going to be impossible. Plus she's over come more in her 10 weeks than most do in a life time. I'm just not sure where we are going to keep a pony.
We were able to aggresively wean her morphine and versed over the weekend. She's now down to 0.6 mg/kg oral morphine and 0.4 mg/kg oral versed every three hours. She was at 1.0 and 0.8 respectively last week. So, we have made great strides in weaning. The down side is that the with drawal caughtt up to her yesterday. Yesterday afternoon she was very cranky, restless, sneezing, and in general not a very happy baby. She did not nap all afternoon or evening. She finally fell asleep around 2 am after two versed rescues. We give her rescues to help her get through the with drawal, it's more effective than going back up on the doses. It is very hard to see her so uncomfortable. The best thing to do for her is to hold her. Luckily we had one of our favorite night nurses last night and she was able to hold her for long periods of time. I have a feeling Chris or I might be sleeping at the bedside a couple times during this process. Sometimes the nurses are too busy to sit and hold a baby for hours on end. Really though, that's our job as parents and we are more than willing to give up a good nights sleep to get her through this.
We have also switched the timing of her sedation and feeding. We were giving her her sedation and feeds at the same times. This caused issues with the oral feedings. She was either too cranky because she needed her meds or too sleepy because she had recieved them. Last night while she was so cranky we took advantage of it and moved the timeing of her sedation meds to an hour and half before her feeds. Hopefully this will help make some progress with the oral feeding. Having a tube in your nose and taped to your face can't be fun. We are more than prepared for her to have this tube for many many more weeks. The volume of her feeds have been increased to 70ml, too. Hopefully she can handle the extra volume resperatory wise. Her little lungs can't handle any extra fluid in the body. It's a fine line between giving her enough calories without giving her too much fluid. This is why she is getting fortified breast milk, that way she gets more calories without the extra fluid. She's already taking a diruetic to help her body with the fluid.
Now for the most important thing.
As you can see I had plenty of knitting time while she was on ECMO.
Having parrents like you two
Having parrents like you two is "a pony." Take my word of warning... be careeful how many toys you let in your house... It's like W. & military actions...once they're there it's nigh impossible to come up with an exit strategy and if you have 150 thousand, then you will need a surge of another 50 thousand more!
I gotta ask... do you have a matching hat to wear for the NY marathon? (i know matching shorts would be So impractical!)
I wonder... is it Verboten for you to wear something with a visible picture of Ruby and the Cherubs logo? That would make this little "New England Jog" into an Awareness Run! :-) Some local reporter might latch on to Ruby's story (and the fact that you are running a marathon so amazingly soon after becomming a mom!) and get the cause some press time.
I am in awe of you guys as
I am in awe of you guys as parents and your leveled headed approach to all of this. Your blog is amazing and will benefits many parents. PS- Hectors has become a servent to your cats. Debbie (Tim's much older sister)
Ponies come in all
Ponies come in all sizes....
and don't make much noise (I have heard every argument for one.... all from my kiddos)
Ruby will look grand on one!
You are so talented, Holly.
You are so talented, Holly. Cute little outfit!! And, remember, you can't spoil a baby. You can worry about discipline and all that other stuff later. You'll figure it out. Natalie
Spoil, shmoil. You go ahead
Spoil, shmoil. You go ahead and give that little girl whatever she wants!!! She is an amazing little fighter! And you guys are amazing parents! Love that outfit - Ruby looks so cute in it! You are a great knitter, Holly!
Continued prayers for smooth weaning and daily improvements in feeding....
Pam
Holly - You're an amazing
Holly -
You're an amazing woman - you knit (beautifully by the way), you run marathons, you're so positive, and you are a great mother to that gorgeous little girl. You're awesome, woman. YOu're really are....
Alejandra
She is soo cute! Holly, we
She is soo cute! Holly, we really feel for you. It's so hard watching your own baby going through all this. I wish we were closer to give you a big hug. Ruby is such an amazing little girl and a true fighter and you guys are such wonderful parents. We are thinking about you and hoping that Ruby will continue to make good progress.
What a fashionista! :) The
What a fashionista! :)
The progress Ruby has made is amazing.....no more misbehaving for her. :)
All our love from the 'Lou,
Tami, Chuck, Aisling, and William
What a cute outfit!!! Go
What a cute outfit!!! Go Ruby Go!! Many prayers for continued progress with her feeds and pain med. weans. She has overcome so much and will continue to do so, with the fight you both have given her.
Hugs, Tracy Meats - Ian's mom
P.S. I am sure now that things have calmed down some for you, I know your followers on CHERUBS would love to hear an update on your super star!!
Way too cute!
Way too cute!
A DOR A BLE
A DOR A BLE
only one pony?
only one pony?
That hat and shorts are sooo
That hat and shorts are sooo cute and I loved the colors that you used! I'm glad to hear that the weaning is still progressing well. And seriously, she deserves a pony after all she has been through!! No one will ever accuse you of being parents dote too much on their little girl!
Holly and Chris-I can assure
Holly and Chris-I can assure you that no one who is with you now will ever say, "My, my, they really spoil her rotten..." If you don't buy her a pony I will complain with her during her teenage years that her parents are MEAN, MEAN, MEAN! Every parent is so proud of their new baby, but I never knew how much one little baby could accomplish in her first year of life. I am so proud to know Ruby too, as I talk about her with everyone who will listen. She is an awesome gift for all of us. Her g-grandma would be so honored to share her name with such a spirited child as well. I could go on and on, but this is too much for a Wednesday morning. Hugs and kisses all around, Sarah
Oh and I almost forgot, that
Oh and I almost forgot, that is the cutest hat and shorts I've ever seen! Sarah
What a cute, fancy outfit!
What a cute, fancy outfit!