Day 101 of Life!

You don't need that yucky pacifier
yes I do!

Is that a smile!

Are you peeking?

Nope, I am sleeping Daddy and Mommy

Brinson is strong girl even throughout the day of not breathing five times, she was still sucking on her pacifier, crawling out of her snuggly and backing out of the prongs like nothing was happening.

She has gained about 100grams to 4lbs 12.4oz or 4 3/4 pounds

They are going up on her feeds from 6cc to 12cc......BTW we are still waiting on the poop. Also Brin will be put in a crib today, because she is able to maintain her own temperature.

Thanks family and friends, it is good to see everyone pull together in good times and bad.

Treatment

We talked to the doctor after the cardiologist consult and Brinson will be treated for Cor Pulmale with Nitric and maintain O2 saturation between 95 and 100% If she still needs more help and she is ready for cannula, they put her on viagra. Yes the same drug but it will be used for what it was developed for.

Brinson will also be taking Zantac for reflux.

Next week she will get another echo and EKG of heart to get a good baseline.

She is doing pretty good on her feeds, but not well enough to move up.

Lisa got to hold Brinson this evening and I will post photos later. She was a bit squirmy but tolerated it just fine. Mommy is very happy.

Prayers are working, Thank you very much.

Reflux?

Hmmm....is my baby in here?
As big as she is, this puts her size in perspective. She is still quite small.

Mommy is so happy about Brinson being here, can't you tell?

Stork Bite!!!

They have determined that Brinson probably has Reflux and could be the cause of all the lack of breathing episodes lately. They used a scope

Still waiting to hear from the Cardiologist.

BTW she is 4lbs 8.7oz and still has had no lack of breathing episodes since 8pm last night.

Scary adventure

Last night Mommy and Daddy got the proud privilege of seeing Brinson cough out a lugee and then proceed to not breathe until being suctioned & bagged. Not very fun.....hopefully we don't do that again.

The good news is she has not an episode of not breathing since last night at 8pm.

Her oxygen requirements are also way down....from 50-60% last night down to 35% this morning.

I talked to the doctor this morning and he is not going to pursue the nitric if her oxygen requirements are this low. He is still concerned with the thickness and is consulting with a cardiologist today and we should get to talk with him/her.

There is possibility she just has a head cold, but it does not reduce the fact that there is thickness on the right side of her heart. Hopefully the cardiologist will figure this out.

Thank you for all your prayers and keep them coming.

Calling all prayers

Brinson is not doing so great. She is stable, but has had several non breathing episodes and is a real touch me not.

So either her ASD is causing a thickness of the heart because of having to pump blood twice OR she has Cor pulmonale which causes a thickness of the heart because the lungs are stiff and therefore the heart works harder.

Either way Brinson has a bumpy road ahead of her and will need a lot of thoughts and prayers.

Things are going ok

Brinson seems to be pretty stable, but the are keeping a close eye in case their is an infection developing. Most likely it was due to congestion from a nasal and throat irritation (cannuals, respirator tube, feeding tube...etc) , asking Brinson to hold her temp in a cold room and probably the increase of holding from once a day to 4-5 times a day. All of those things probably tapped her reserves until finally she caved.

Brin got an echo of her heart yesterday to make sure something major is not going on. We hope to get the results today.

They did start feeding her pedialyte (vitamin water) yesterday; 6cc every 3 hours; given all at once at a beginning of the 3 hours. Brinson seems to be tolerating it pretty well.

On Monday they also checked again for the weakness in the bones and she is better now and does not show the weakness anymore.

She is still on CPAP and we hope to get her back in a incubator soon so she can get some rest and get caught up.

A set back makes for a long night!

Last night Brinson got cold and had to be put back into a warmer. She also had trouble breathing and had to go back on CPAP. Needless to say Mommy, Daddy and Meme did not sleep very well.

She is not acting sick (white blood cell count is ok), but her hematocrit is lower and her lungs are hazy.

They think it is mostly environmental (66-68 degrees in pod) and asking Brinson to do something she is not quite ready to do (keep herself warm at the cooler temperatures and breath).

The good news of the morning is her eyes are much better (complete resolved in one eye and the other is mostly resolved). So likely her vision will be minimally affected.

Holding Brinson

Meme had a much better time holding Brinson. Previous times Brinson was acting up.
Wax on, wax off!Mommy trying to get Brinson to open her eyes. It was quite bright in the pod yesterday.

Can you say blue

Auntie Tiffani

Something is different....oh I am upright!

Brinson got held yesterday. Now that there is no limit on the amount of holding....she got held.

Today they do an X-ray of her wrists to check for weakness of the bones. Tomorrow she gets another eye exam.....keep your thoughts and prayers coming. Hopefully she will not need more eye surgery.

BTW over the weekend they moved her from 1L to 1/4L of O2. She is requiring less and less oxygen. Go Brinson!!!

Where are my teeth?

What a beautiful family!

Pumpkin!!!

Mommy is so happy

Yesterday both Daddy and Mommy got to hold Brinson. What a treat. There is a lot of guesstimating going on around when Brinson will go home and go to Level 2 NICU (where they focus on getting you out the door).

Mommy and Daddy were a bit freaked by the comments of she could be home in less than 1 month (1st week of July) and maybe even on her original due date (June 26th).
She is doing so well. When they put her on nasal cannulas she was using 1L of O2 at 100% and now she is on a 1/2L. Today we will see her blood gas and know how well she is really doing.

Also they still have her in a warmer without the warmer on. She is bundled up. The jury is still out on whether she can continue to tolerate the environment without a warmer. She may go to a crib or an incubator...not sure.

To go home she needs to be breathing on her own (check) and regulating her own temperature without a heater (maybe check) and drinking 8 bottles a day (no progress yet).

We will start feeds 7 days post operation (Tuesday). Based on her age and size they are assuming she will take like a duck to water and accelerate quite rapidly.

Who is tickling my head?

Where are my teeth?

I don't know where are you teeth?

Watch the video, the gumming is pretty funny. We think she is just hungry.