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Saturday, March 15, 2008

Her eyes are no longer fused...yipee!

Lisa was able to get a shot of Brinson without her hat and eye shades. Look at that hair line.

BTW still peeing and lab levels are looking much better. Still waiting on the results of the kidney ultrasound....probably Monday. Halt the pee dancing. Thanks!

When we left this evening, she was resting comfortably. I will have shots of her new hat and ear muffs tomorrow.

Visitors for Brinson

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.

Wet diaper already....already!

Well I am not saying all is good but we are on the right track. So in less than 2 hrs and we have a wet diaper.

Thanks to all the PEE dancers!

We have more PEE!

Brinson had some more pee.....16cc to be exact. Excellent progress. Thanks to all the Pee dancers.

We just missed the ultrasound of her kidneys...but since she is peeing they cannot be completely lacking of blood flow.

We expect the results later today.

If Brin continues to pee then her puffy self will go back to normal.

thanks again..more later.

We have 5cc

Brinson gave us some pee, but we still need more. Later today they will do an ultrasound to see if she has good blood flow to her kidneys.

All her other vitals are ok.

We are running out for lunch and an eye back later.

Keep praying for PEE!

Morning Folks - still only small pee!

Lisa was awakened this morning by her milk producers. They were yearning to give. She pumped an amazing 129 ml (triple from 2 days ago). Heat really does work, thanks Kim!

Lisa called in this am and Brin has only peed a few drops since 12 midnight. But the good news is maybe her oozing has slowed or stopped. Her blood numbers looked good.

We are headed up to the hospital this am. We have eye appointments mid we need to get an early start.

Pee Dancing is required for all who read this blog!

Thanks to everyone for helping out!

New bunk mates and new hat

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!

Friday, March 14, 2008

Still waiting for....

Yes you guessed.....still no pee. Otherwise she is doing pretty good.

Brinson had a few visitors today, a few L&D nurses and Dr G. I think Nana is planning a visit as well.

We are headed for dinner and to get a little break.

Oh yeah the saran wrap is gone....she is able to hold her temp without it. She is also moving around quite a bit more....including her mouth, hands and feet.

Pray for pee.

We arrive this morning to a much pinker Brinson and to good results on the brain scan.....but.

We asked the doctor where we are and Brinson is in kidney failure. She needs to pee to release all the bad stuff. The next 24 hours will be critical for her.

So even though everything is going well with regards to brainscan and holding good pressure and heart rate....not peeing is bad.

Please keep her in your thoughts and prayers to help her pee.

Quiet night!

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.

Thursday, March 13, 2008

Lots of visitors tonight

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.

Thanks again everyone for awesome comments.

Vitals look good

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.

critical but stable....

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.

Wednesday, March 12, 2008

Update after surgery

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.

Steps backward

This evening around 6:15pm, Brinson started having low blood pressure, mind you this was after doing very well on the CPAP all day.

They suspect something is wrong so they get a couple of X-rays and it looks like there is a perforation somewhere....either her esophageal or intestines...only with surgery can you tell for sure.

They are preparing for surgery and right now we know very little....except that it will take a while for recovery and she is back on the respirator.

This is our first drop on the roller coaster.

Brinson has a strong grip on Mommie!

Lisa was able to capture Brinson gripping Lisa's pinky. Pretty cool. It is hard to see but her knuckles are white. Oh yeah...more photo therapy.

Brinson goes on CPAP

Because she was going on CPAP we get a good look at her thanks to the nurses taking a few photos......hummm who does she look like?

Look at how little she is next the bear

Look how big the CPAP is. Think of a hairdryer on full blast, blowing up your nose....oh your nose and now try to breath. That is what Brinson has to do.

She is breathing all on her own....very cool.

Brinson is 1 week old today

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 popular demand.

Tuesday, March 11, 2008

Watch for the tongue

Today Lisa was able to capture some video of Brinson practicing her sucking reflex. It is pretty funny to watch....and sometimes you see her tongue. hehe!

The video is blue because she is on photo therapy again. Just all part of the process of getting older all preemie babies need it. She looks like a little old lady gumming her dentures. :>

Lisa just called and Brin had her lumbar puncture....and she did fine. They did it tonight, because her platelet count was up after the transfusion earlier today.

Look at the hand size

While I was there with Lisa, I got a picture of Brinson's Hand next to Lisa's.

Just amazing how small she is....oh yeah

Brinson gets platelets

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 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.

Monday, March 10, 2008

Met Zachary and Parents

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 is ticklish

Lisa and I visited with Brinson tonight. She is doing well not off the respirator yet....probably tomorrow. She did get her PICC line. It is in right foot.

Somehow during the visit Lisa figured out that Brinson is ticklish on her left foot. It is kinda funny, check out the video and see what you think.

Since the saran wrap is now removed, we get to see her and touch her more easily. Here is a good shot of her new cap. Take a look at the size of button compared to her hand.

BTW she is on room air at 20 bpm and no dopamine....yeah!!!

Leann (Lisa sister-inlaw) is doing the march of dimes for Cooper and Brinson. She wrote something really nice on the website...take a gander.

Video of Brinson before PDA Surgery

This video was taken on the 8th before her PDA surgery.

Video of Mommie taking Brinson's Temperature

Elliot captured a video of Lisa honing her nursing skills.....I mean Mommie skills.

Brinson lends a hand and Grandfather's visit (said in an English accent)

It seems Brinson is so excited from being off sedation that she is gripping fingers now. This is apparently normal in utero ....babies are often recorded grabbing their umbilical cords.

Here is of a shot of Elliot, Grandfather (said in an English accent), and Lisa with Brin.

Brinson being removed from respirator..woowoo!!

Lisa is just called me. She is off minimal stimulation, She is going to get some caffeine to get her to breathing on her own. She is being moved from a tube in her mouth to her nose ie CPAP.

That means she will be able to cry.

Lisa and Elliot took some pictures....will post tonight.

Brinson is off sedation

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 is good.

Lisa also said they have lowered her O2 to 22 almost room air. Great news!.

She is on her way to full recovery from the PDA.

Father spends time with Brinson

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 more later.

Sunday, March 9, 2008

Parents late night visit (Grandparents too!)

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!

Painting is done!

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.

Hard day

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.

Well Lisa is done pumping. Back to see Brinson.