Brinson had 3 Grandparents visit tonight. Everyone is happy about the pee. Brinson is too, so much so.....she was moving around so much that she would de-sat herself. They gave her some morphine to calm her down.
The eight pm diaper was 15cc...yeah!
KD came as well to visit with Lisa....someone to talk to other than me...I know she is excited about that.
Tonight we graciously accepted dinner invitation with the Baldwin's. It was nice to break away and have an adult conversation.
Oh yeah, I wanted to thank the anonymous nurse from the 4th floor that gave me her own bottled water in the elevator. The vending machine was out and she gave me hers. Super nice...and would not let me pay for it.
This place is awesome. I am so glad Brinson is here. I can't image her being anywhere else, except maybe home with us.
Yesterday Brinson got a few new bunk mates. 1 for her first Easter and 1 from the Baldwin family. Thanks guys!
Lisa called at 12 midnight after returning home and Brinson has only peed just a tiny bit....barely measurable. So we need more Pee Prayers......big pee....not little pee.
Besides the pee, everything else is going fine....she is stable, but still critical. Since yesterday she is 1 to 1 with a nurse.
Oh yeah, over the last few days Brin has a gotten a few new hats. In celebration of easter this weekend, she has her bunny hat on. Don't be alarmed with how she looks....she is puffy from all the fluids. But she is still her same wiggly self.
Take at look at my thumb against her foot. Even with all the fluids and 10 days behind her, she is still small. Life is Amazing!
We all finally have a quiet night. Lisa and I slept all the way through the night and that goodness no phone calls. Brinson as well had a nice quiet night. She is still critical but stable (still mainting bp and pulse without any medicine....good girl).
They did get a brain scan early this morning so we should have the results later today.
Also she is still not peeing as much as they would like to see....I suspect something will happen later today to address this issue.
Elliot, Marion, Bert and Kit, plus us came to visit Brinson this evening. She has quite the fan club.
She is still doing well considering. Her oxygenation, bp, and heart rate seem to be holding steady. They are still giving her fluids and blood to catch up from the surgery. She had not really peed much since this morning and everyone seemed quite concerned....then all of the sudden we got 7cc. Yeah we have some pee! Now this is not a lot, but it means things are sort of working.
We left tonight hoping for no phone calls. BTW it has now been just over 24 hours since the surgery.
Tomorrow is a big day, she gets a brain scan and we find out whether she has a bleed in her head or not. Bleeds by themselves are not always bad....but if the bleeding continues it can cause pressure on the brain and then you can have problems.
Brinson is holding steady. Her BP is stable meaning not swaying which is a good sign and she able to maintain it without dopamine....which is really good. Her oxygenation is good (98-99 out of a 100). They put in an ART line so they could remove the umbilical line (usually they want it out as soon as they can withstand it.) But the ART is not working yet. They can draw blood, but monitoring via the line is not working correctly yet....sometimes the arteries can spasm.
Her color is not great and her feet and hands are chilly...but her core is nice in warm. She was uncovered for quite a while because they had lots of trouble doing an ART line.
Also her heart is very consistent which is good...usually babies with this kind of trauma can't maintain their heart rate and BP.
She is a fighter.
Lisa is pumping right now and we have to do some paper work for SSI later this afternoon. Apparently the goverment will pay medical bills for babies under 2lbs if insurance does not cover. I don't expect a problem with my insurance....but just in case.
We arrived this am to a critical but stable Brinson after a long night with a startling phone call from the doctor at 2am to tell us she was paler and needed more blood.
They have been giving her blood and fluids. She looks black and blue from the surgery. Her stomach and head are soft and they are confident that the blood is for the recovery of the perforation and not a bleed.
So she looks worse than she is but she is still very sick and next 3days are going to be the most critical..
Tomorrow is the scan of the brain to see if she has a bleed.
Thanks for all your thoughts and prayers....please keep them coming.
She had a localized perforation and they did a stoma. They will go back later after she develops and fix it. She is stable and will be sedated for the next 48 hours. She will likely be back on dopamine and so we will start over....trying to get where we were today. Because it was localized the prognosis is good for recovery. She will also likely be swollen from all the blood and fluids they have given her because of the perforation as well as the surgery.
It is so hard to see her like this...not moving. It is not natural. Keep the thoughts and prayers coming...she still needs them.
Big Thanks for Stephen and Kim, who came up and sat with us and just listened before, during and after the surgery. Thanks Guys.
We also want to thank Mom and Bert for coming up with food and listening and supporting us during this difficult time.
Thanks Marion and Elliot for offering dinner. Mom and Bert beat you to the punch.
Tomorrow is new day....we just hope it is a better day for her.
Lisa and I going in early this morning. I finally had a good night sleep....amen! Lisa is a bit sluggish this morning. Today we goto the Parents Group for NICU.....and hopefully meet lots of people just like us.
If you want to see my first diaper change here it is....by popular demand.
Because of an early morning meeting I did not get to see Brinson till around lunch time today. I was missing her already.
She is doing great....still holding tight. All her vitals looking good except her platelets were a bit low. Pretty normal for preemies to need more, so they gave her some. They had to readjust her PICC line and now her foot is elevated because of some oozing....no biggie. Her foot is tiny bit brusied from the PICC line insertion and re-adjustment.
Lisa was having some trouble today....just a little overwhelmed. The doctor came by and reassured her that everything is going fine and that either today or tomorrow they would try her on CPAP. They are making sure all the sedatives are worn completely off. And she is still quite feisty even more so that the sedatives are wearing off and that she is getting caffeine.
Right before we left this evening Lisa and I met Zachary across the way from us in the NICU. Stephen and Kim were really nice. They are going through pretty the same sort of stuff we are including a rough pregnancy....actually in some ways they made ours sounds like a cake walk. It is funny because we both have been eyeballing each other.....and so we finally meet.
Their son is further along and he looks great all filled in.....still small though like our Brinson.
It was a nice moment to talk with people in the same situation.
We are going to parent group on Wednesday, I am sure we will see them there.
Brinson has been taken off the sedation and ,according to Lisa, back to her feisty self. Before the surgery and in several previous photos you may have noticed her leg kicked up. Well she is back to that....so that is good.
Lisa also said they have lowered her O2 to 22 percent....so almost room air. Great news!.
This morning I got to spend some quality time with Brinson. It seems as I learn how the NICU works there are some key times to call vs show up and get information.
This morning was a key time (right after morning shift change) because I got to see her a lot and do a little bonding. (BTW early morning is not necessarily a good time to see the doctor) At first I just spent 10 mins just talking to her, but then the primary nurse showed up and I got to take her temperature (98.7...good) and then change her diaper.
Her skin is still real dry, but she is still wiggling toes and fingers (still sedated). Actually since I was there right after shift change I got to watch the nurse do an assessment.
First she checks for a pulse on all limbs (including head) to make sure there is good blood flow (one problem that can come up is the lines through her belly button can cut of circulation to her legs) and then listens to the heart to make sure no anomalies exist (like a murmur). That was actually a funny moment. The nurse warmed the stethoscope and then place it on Brin's chest. Brin jumped like wow that is cold....obviously the nurse did not warm it enough. The last thing the nurse checked for was stomach contents.....eww yucky green stuff (bile, but a very small amount). This just means the stomach is still not ready for food (if you remember.
Her other vitals are looking good. BP is good....the dopamine is done to .2 (so they lowered from .8 to .2 in 12 hours) and BP is holding in the range. They still have her on some 02 but they expect after her last dose at 6pm today that the oxygen should go back to room air.
I had a lot of opportunity for pictures....but did not have the camera. I will fix that tomorrow....
Well I am back at work and questions are rolling....so more later.
We just arrived home from the hospital....long day.
Since mom's car was there, Lisa pumped so grandparents got some time with Brin and then we followed after they left.
Brinson is not able to withstand the FATs and Sterile water they were giving her. It seems her stomach is not quite ready for stuff yet. They will increase her proteins via IV in the meantime. Her dopamine was lowered to .6 while we were there, that is good.
Her O2 saturation looked good so they lowered her O2 from 25% down to 23%. They had to increase both dopamine and O2 after surgery. Also they lowered her rate from 34bpm to 25 bpm.
Ideally she needs to get back on room air (21%) and be closer to 20bpm before she can be moved to CPAP. Basically she would be breathing on her own but would have positive pressure of air through her nose.
Brin was also receiving photo therapy. Again expected....and she will continue to have it on and off again until her liver is more developed.
Oh yeah her temperature was 99.0 at the beginning of the 7pm shift, so she lowered the heater. Without the saran wrap over her, her temp would plummet. Babies without fat cannot hold body temp. This is usually a problem until 30+ weeks. (on the March 13th Brinson will be 25weeks)
Overall she looked good, lots of little movements even though she is sedated. Her skin is getting a little crusty from all the photo therapy. But that is only temporary.
Well it is back to work for me in the morning. And Lisa will be trying to keep busy.
Thanks for you all your wonderful comments. Goodnight!
A big thanks to Mike and KD for getting the painting done in Brinson's room. There is so much to do and not enough time to do it. Lisa and I spend 1 1/2 hours in the car traveling to and fro to see Brin. It is a long journey but worth it.
The carpet gets installed on March 11th. She will have a new room to come home too.
Thanks Bert for helping me with returning the furniture.
Today has been a hard day. Lisa and I started the day with going to the funeral home to take of Cooper. We picked out an aqua colored stone heart. it will be engraved with his name and possibly a teddy bear.
This afternoon we have seen Brin. She has a few setbacks with blood pressure which has been expected from the surgery. Also they have her paralyzed so her body can heal. we did get to see her wiggling her toes and fingers as we talked to her right before another dose was given. That is way more comforting for us to know she is still there.
Today we plan on finishing painting the room. Mike and KD are going to help. Yeah team.
Bert and I wil be returning the Cooper's furniture...another reality that no ones wants to deal with.
Both of us are still not etting quality sleep...I an hopeful that maybe some busy work will help.