She has a belly button. Looks like an "inie", not an "outie" This evening they removed her umbilical arterial catheter. The UAC was used to get to blood and measure her BP in real time. But hers had been used too long. Time to come out.....
They put in another arterial catheter but so have no been able to get real time BP. So they are using a cuff to get her BP every 2 hours. So far her BP has not been a problem.
Around noon the starting giving Brinson a continuous feed of Mommy's milk. They check every 4 hours and the first time she was able to digest .4cc and then 1.4cc. So Brinson is making progress.
Here you see it going in her OG tube. Later it will go in via NG and then via bottle. So we still have a long way to. I say again she is making progress.....yahoooooo!!!!
Here is Tiffany, a day time nurse (working on being a nurse practioner), taking care of Brinson. Tiffany is one of Lisa's favorite nurses.....she really likes to fuss over our child. We love that! Thanks Tiffany.
Hello all, Lisa here. (I can't remember my login info so I'm using Ned's) I just wanted to give a huge thank you to all of you who have sent us flowers, gifts, cards, thoughts and prayers for Brinson and Cooper. I have been meaning to send out thank you cards, but can't seem to tear myself away from my daughter long enough to do so. So I just wanted to make sure all of you know how MUCH we appreciate everything. It means alot to us to know we have so much support from friends, family and even strangers. Brinson is such a tough little cookie and I know she will continue to fight. She has her daddy's genes! Please keep the thoughts and prayers coming. We can't wait to bring our little girl home. Love to you all and thank you again from the bottom of our hearts.
Well Brinson even surprised the doctor with the best x-ray Brinson has even had. They were a bit suspicious that the x-ray was from her. But it was.....yeah!!!!
So far no infections (blood, urine, LP...etc). There is still a possibility of a urinary or blood infection. But for right now, she is doing pretty well.
The lungs are better than yesterday but over all she is still on the vent and probably will be for awhile. The surgery really set her back.....
They are proceeding with the pedialyte and if all continues to go well they will start with breast milk in 1 or 2 days. Milk does the body GOOOOOOOD!!!!
Also she they have reduced the paralytic from 2-4 to 4-6 hours. She is more wiggly, but pretty calm overall.
Her kidneys are working, but not good enough to have diarrhetics for long periods of time. So they will try and giver her lasix (diarrhetic) every other day. The diarrhetics are to help get the water off her lungs.
Well we came in this morning and Brinson is down to 29% on the Oxygen. Yeah!!!! We have not seen the 20's since her perforation, more than 2 weeks ago.
She is still paralyzed and planning to stay that way for now. She is starting to get a bit puffy. The medicine does that. Also the x-ray of her lungs is much better this morning....
Last night they did an Lumbar Puncture to make sure she does not have spinal meningitis. I think the results take 24 hours to get back.
Today we picked up Cooper, her twin, on the way in to the hospital. He is resting next to Brinson. They have been together their wholes lives except for these past 3 weeks, so we only thought it appropriate that he is with her.
Here is Kim Baldwin (Zachary is her son and former pod mate of Brinson) coming over to visit Brinson in her new quiet pod. It is hard for me to get a good photo....those ladies like to avoid the camera.
We called this morning and Brinson had a nice quiet night. They tried to make some changes on the respirator and she did not like them (probably rate). But if there is a bunch of fluid still in her lungs likely it will take some time before the rate can be adjusted.
But her O2 is down to 36% and she is still processing some of the pedialyte (like gatorade for kids). It is on a continuous drip.....to stimulate her.
This is definitely going to be a setback for her. Only time well tell how well she can recover. This is now 4 insults she has had to recover from....PDA, Perforation, Lack of Pee and Infection?.
Brinson may have had a set back with her lungs, but her O2 is down to 60%. So that is progress.
But likely she has an infection, so it may take her a bit to recover. We won't find out for 24-72 hours.
But the real news is we have small poop!!! This means she is digesting, which means she will lose her copper tone tan. The tan goes away because the direct bilirubin levels in the liver go down. YEAH!!!!
Well it seems at ~3am, Brinson started having trouble saturating her oxygen and they had to turn it up to 100% and were not able to lower it. But her BP was good and she was wiggling a lot.
So this morning they decided to paralyze her, like after surgery, so she can rest. Since then they have been able to ween her down to 88%. They also grabbed blood and fluids and preliminarily there are no infections. She does have a lot of fluids in her lungs. They are not sure if it is pneumonia or just excess fluid from being on the vent. They may try lasix again to see if that will dry her out bit.
Mom and Dad are sure stressed, but Brinson seems to be sleeping now, which is good.
As I am sitting in the new pod I realize I hear something I have never heard.....the respirator machine. It sort of sounds like a vaccum on low....very low setting.
It was so loud in the other pod that Lisa could barely hear me talking at times.
One thing that you really notice is there is a wall between the other pods. That makes a huge difference. In this quiet pod, you cannot hear anything from another pod. That means Brinson only has to hear 3 other babies machines. In the other pod you could hear about 15 babies machines, sometimes all at once. Well if you were like me, I looked at the other picture and thought to myself "how is it different?" The location is different, but everything else is exactly the same. All of that stuff except the monitor on the right moved with her as a unit.... well with 6 people (4 nurses and 2 techs) helping. I bet seeing the move would have been scary.
She seems to be loving her new pod. Some good news is she is still digesting the 1.5cc of sterile water every 3 hours....woowoo!!!
Here is another Hiccup Video. She is just so cute. If you listen closely you can hear Lisa laughing quietly.
One thing we will miss in the new pod is Zachary, Kim and Stephen. They are still in the same unit but not for long. Zachary is doing so well, he will be upstairs in Level 2 before you know it. We will still see them....likely everyday!
Brinson had another restful night. She is still processing the majority of the 1.5cc of sterile water they give 3 hours. So that is real good news. They will probably try a larger dose in the next day or so to see how much she can tolerate....again to prepare for the good stuff (milk).
Her BP is lower this AM and her hematocrit is lower than yesterday. So they are going to give her some blood as a preventative.....to get her numbers better. She has not had blood for 5+ days so that is good.
Anytime you give blood you wonder where the blood is going. We don't really worry unless you have to give a number of transfusions in a row.
The photo above is from the 24th with herself all spread out and comfy.
Miss Brinson definitely has attitude. Giving Mom fits with diaper changes, de-sating at will and jockeying for attention (nurses are 2 to 1). Lisa tells me that Zachary and Brinson having duels all day long with there machines. Meaning when 1 is beeping and gets the nurses attention the others machine starts beeping. It is pretty funny!
Brinson was able to process another 1.5cc of sterile water (that 2 in a row) this evening. Only time will tell if she can keep it up. But so far so good.
BTW she was able to sleep just fine when the carpet was being cleaned earlier in the day.
I was able to capture a yawn, but unfortunately the video quality is poor because of the low light.
This afternoon after a 2nd attempt, Brinson was able to digest almost 1.5cc of sterile water. This good news because this is the first step before we try milk.
Lisa changed Brinson this afternoon while I was at work and Brinson did not like it. She kicked her legs and if there would not have been a tube in her mouth she would have been screaming. As soon as she dried her butt and got a new diaper on her, she quieted right down. I think Brin is going to be hell on wheels.
The nurse today got her down to 36% oxygen....the lowest she has been in 10+ days.
Today started good, but end poorly. So another mixed day. Hopefully she gets a good night rest with Susan at her side.
Brinson had some good loving on by Donna the NP and Beverly the respiratory tech. Just about everytime Brinson had trouble, Bev would talk to her with her soothing voice and let Brinson hold her pinky finger. Brinson loved it and settled right into a slumber.
Late this evening her BP was low and her saturation was all over the place. BTW the BP is probably low because of the changes in her steroid. They have been weening her off, but they went down 2 steps today. So they will go back up 3 and start weening again.......to see if she can tolerate the change.
Everything is a balance.....Acid, BP, CO2, O2, Saline in, Pee out....etc!!!!!
Lisa called on the way home and she is already doing better....with the unit quieting down. That is good.
They think she gets over stimulated......and just starts reacting to everything.
PS A Big Thanks to Aunt Barb for the Flowers, Candy and Bunny!
Over the last few days, not really much has changed. She does well at night, but because of her sensitivity to noise her O2 saturation during the day is mixed at best. The nurses joke she is not a morning person.
So she is doing no better or worse.
Yesterday they started her on Lasixs to try and get some fluid out of her lungs. If this is done, she should get better with the respirator and move closer to CPAP.
Oh yeah, no milk this weekend. They are waiting a few more days since there was blood in her stomach (2 days ago).....they want to make sure everything is ok and she is digesting.
She cannot get her own condo (isolette) until she is more stable with breathing.....ie CPAP.
We were able to capture something funny the other day. Watch the eyebrows. Brinson only does this when she has the hiccups.
Later this evening the family is getting together for a non traditional Easter Dinner. Happy Easter!!!