Alyse Marieta - 7/18/13-8/1/13

Today around 1:00 p.m. our little fighter lost the fight. Alyse Marieta is now with her brother, Elijah and Grandpa Dana.

Thank you to everyone who has offered us their prayers and support.

Two Weeks Old

Today Alyse is two weeks old.  Things look so much different than they did a week ago today, when I started this blog.

The last two times they've tried to draw blood from Alyse's heal, they have been unable to get enough to run labs.  Her profusion is so bad that there isn't enough blood flow to her feet to get any out.  Because of this, they cannot check where her levels are, so they have to just leave her on the same meds as before.

Still no wet diaper.

Her stats are holding steady right now.  We had another slight episode with her oxygen levels dropping last night, but they suctioned her, got some junk out, and she stabilized.

While I was resting last night, Joey talked to a doctor and to a nurse practitioner.  The doctor told him that our baby is dying.  She said that Alyse could still get better, but that more than likely she would not.  The nurse practitioner told him that at some point we may have to make a decision to take her off some of her support so that we can hold her... Something that we haven't been able to do at this point.

So, please pray for her & us as we go through this.  Pray for her doctors to make the right decisions with her care.

Brain Bleeds

Well, we got the results back on the ultrasound of Alyse's brain.  She has a bleed on both sides.  On her right side, she has either a grade 3 or grade 4 bleed, and on her left side she has a grade 1 bleed.  Grade 4 is the worst type, and grade 1 is fairly minor.  Is it possible to have a grade 4 bleed without significant long-term damage?  Yes, it is, but obviously the worse the bleed, the more likely it will be that there will be a long-term issue.  They will repeat the ultrasound in a day or two to see if things have gotten any worse.

Right now they are using everything possible, trying to keep Alyse's stats at decent levels, in hopes that eventually her body will kick back in & start making things work again.  Once again, she has to pee. It's very important that her kidneys start disposing of the waste.

On her chest x-ray today, her lungs looked good, but her heart is small.  It is not receiving adequate blood flow, due to the fact that she's sick, she has leaky capillaries, & the rest of her body is filling up with fluid, instead of pushing the fluid into her heart.

The Alyse of today looks completely different from the Alyse of a couple of days ago.  She's very "puffed up" from all of the fluid they are pumping into her.  Honestly, it's very hard to see her like this.  She's also gone from a very active little baby to one who *might* slightly move a hand or foot occasionally.  She's on pain medication that could be partly causing that, or it could also be because of her brain bleed.

Sadly, with the many, many things going wrong right now, it's hard not to start to lose hope.  I know that God can choose to heal Alyse and turn things around, but I just don't know if that's going to happen.

Holding Steady

Currently, Alyse's vitals are still strong and have been for a few hours; although, she is on a lot of support.  Right now her blood pressure is where they want it to be, which is a good sign.  We have been warned that she is "touch and go," and that she could have another episode at any time.

She had a brain scan earlier, and we're still waiting to hear the results.

We're still praying for that wet diaper...

As I type this, Alyse's blog has over 11,500 hits.  Thank you to everyone who is checking in on & praying for her.

Scary Moment

Alyse just had a major episode.  Her oxygen saturation bottomed out.  Several doctors & nurses rushed in, and she was given oxygen manually through a bag.  After several minutes, they were able to stabilize her.  They put her on nitrous oxide to help with the constriction of blood vessels.

We just came very close to losing our little girl, and it was very tough to watch.

Please keep in her in your prayers constantly today.

Acidosis

We just spoke with Alyse's doctor and surgeon.  She has something called acidosis.  Basically, her body is in shock, her PH is way off, & her kidneys are not functioning.  They are trying everything they can think of, but her kidneys have to start producing urine to get rid of the waste.  As I said before, her profusion is not good at this time.  She will have an ultrasound later today to make sure she has been able to continue to supply blood to her brain adequately and does not have a brain bleed.

If things do not turn around, her heart rate & blood pressure will start dropping, which will lead to heart issues that she will not be able to recover from.  If things do start to turn around, the first good sign will be a wet diaper.

Doing Well

Alyse is currently doing well, post-surgery.  All of her stats look pretty good.  Her blood pressure is a little low, which is a little concerning with everything they have her on to bring it up.  They keep using the word "profusion," referring to the ability of her body to pump her blood to her extremities.  Evidently her profusion is still not that great.

She is all "puffy" from all of the blood and fluids they have pumped into her.  It's very noticeable in her face and neck.  She looks like a completely different baby.

The doctors are very pleased with how she is doing right now.  Hopefully she will continue to trend in the right direction.

Thank you to everyone who has been praying!