NICU Rollercoaster

Tuesday, November 10, 2009

2 steps forward and 10 back...

When I got to the hospital yesterday morning, expecting to find things as we'd left them (and hopeful that they'd be even better), I was greeted with a huge shock. Maya was in an isolette and on CPAP. From 7am until 10:30am when I arrived, she'd gone from stable to struggling to take a breath. Because she focused so much on breathing, she stopped trying to keep her temperature and, at 8am when she was checked, she'd gone from normal at 5am down to 95. They wrapped her until they could get an isolette warmed and then got her inside. She was slowly coming up and was 97 when they checked at 11:30.

The steroids wearing off were much worse than they anticipated when we'd called for a morning update. The inflammation was just too much and her throat swelled as soon as the effectiveness was gone. They tried upping the litres on her cannula, adding oxygen, but nothing. They were on the verge of reintubation but the CPAP was able to stabilize her. Even when we left late last night, she was still breathing so hard that her little tummy was caving in with each breath.

They are giving her 9 (instead of 3) doses of steroids. She had her first at 11am yesterday and is on a 12 hour cycle. Her hard breathing has caused a patch of fluid to build up in her lungs. She had several sessions of bradycardia and low oxygenation yesterday. It was another day of hell, both for her and us.

Please pray. Hard. She is such a little fighter, but we'd love it if she didnt have to fight so hard for every little step forward.

Pray for Maya. Pray.

43 comments:

Seraphim said...

Oh the poor sweet darling! Michele I am saying fervent prayers for Maya and hoping for you and Pete that you are given serenity to get through these days xxxx

Our Journey... said...

Praying hard...

nikki wood said...

I pray for them both on a daily Michele, you are always in our thoughts!

sprogblogger said...

Oh I'm so sorry she's having to work so hard. You're all in my thoughts and prayers - here's hoping this complication goes away soon so she can concentrate on catching up to her brother.

A n T said...

Praying for Maya and that things start to turn around for the better.

paulsgirl1297 said...

I will keep her and your family in my prayers ! Sending you lots of hugs ,I knwo this is a difficult time for you and I wish I oculd say something to make you feel better, but I am here to listen if you need to talk...

sarah said...

Praying commenced. C'mon Maya!

AKD said...

I am keeping you all in my thoughts. Tears and hugs for you.

Suraita said...

Sending prayers for Maya - and the rest of you too!

k said...

I'm so sorry Michele. I will keep her in my prayers.

Marie W said...

Praying without ceasing.

Kristie said...

I'm so sorry to hear about what a hard time Maya has been having. I hope they get the swelling under control so she can focus on eating and growing!!

It's never a good feeling to get to the NICU and find things worse than when you left them. Did they even call you?? Ours was very hit or miss about what they thought was important.

mybumpyjourney said...

I am praying hard for Miss Maya. {{HUGS}}

Tash said...

Oh Maya. Hang tough, wee one. Hang tough.

Lachlan's Mum said...

Poor sweet Maya. Thinking of Maya and hoping things get easier for her.

Rachel said...

I'm praying for strength for Maya and peace for you and Peter. I wish I had more to say but just know I'm praying, praying, praying.

Hang in there...**HUGS**

areyoukiddingme said...

Praying for Maya - and for Bobby, and mom and dad, who are all worried about her.

projectkjetil said...

Here from LFCA, and thinking about all four of you. What a scary setback, one which I hope is a thing of the past soon! Heal, Maya, heal.

Catherine W said...

Oh Michele. I am praying for your little Maya. I hope that the steroids helped. That tummy caving in breathing is just so painful to watch.
J had a swollen throat from her long intubation and the steroids really helped her get off the ventilator.
I hope that Maya will be off the CPAP and out of the isolette soon. Thinking of you. Much love xoxo

k@lakly said...

Holding you and Maya close in my heart.
xxoo

MFA Mama said...

Oh no! I am so sorry to hear that sweet Maya is still struggling; I was worried that the steroid wean might be tough for her but hoped I was just being paranoid on her behalf (it's strange how attached you can get to Internet nieces- and nephews-in law via blog!). Here's hoping she can turn this around, maybe with a slower steroid taper? And that the fluid goes away and she is able to return to feeding and growing SOON! Have you asked the neonatologists whether there is any concern with her adrenal function? I ask because I personally have had a bad experience with adrenal "shock" coming off of steroids and I'm sure that as a preemie her adrenal glands are as immature and delicate as everything else. When I had the bad reaction I accumulated fluid in my chest but diuretics and a slower taper-down from the steroid treatment reversed it completely. I'm hoping that what Maya is going through is a similar phenomenon since I had such a good resolution myself.

How are YOU holding up with all of this? You must be so worried, and I've been there, and it stinks :(

Missing Kasey said...

You can do it baby Maya!! Many prayers for you and your family!!

sonja said...

Praying so, so hard for poor little Maya. I am so sorry this is happening.

neaneah said...

I'm so worried about Maya's throat it seem all of her trouble started after the tube was placed I had a sore throat so bad once that I had to go to the hospital and they gave me steriods and it was instant releif so I'm glad their going to give her more this should get her out of pain so she can go back to just getting chucky I'm praying for Maya

Once A Mother said...

Sending prayers to Maya for strength and healing. She, and your entire family, are in my thoughts today.

Michelle said...

So sorry! As always I am praying hard for your precious little ones and you! ((HUGS))

Amanda said...

Praying right now! Keep up the fight, Maya!!

Jessica said...

I am praying for Maya *huge hugs*

Sophie said...

So sorry guys. I hate that rollercoaster ride. :(

I will be sending many many wishes/prayers/hopes for a quick recovery for Maya.

Bluebird said...

Ah, honey. Praying so very hard. Praying your little girl can just rest and recover, she shouldn't have to fight to much.

Holding you and Peter in my thoughts as well. ((Hugs))

Misty said...

How very frightening....

Praying.....

Misty said...

How very frightening....

Praying.....

Lea said...

Oh Michele - I was stunned to read this.

Praying.... so hard for Maya, for you and your family.

xo

Reba said...

thinking of you all, especially maya. stay strong little one.

Jimmie's Auntie Amber said...

Praying all the time for sweet Maya. Lord be near, bring strength and complete healing of little Maya's esophagus.

Busted Tube said...

You and Maya are in my prayers and thoughts. Lots of love and hope headed your way.

Wade said...

De-lurking to say I hope Maya improves soon. We are pulling for her.

Annalien said...

Oh, honey, I am sorry about the setback. I pray that she will soon be her old self again and that she will be going home shortly afterwards. Go Maya!

Malory said...

I will keep you all close in thoughts & prayers especially Maya.

Just Breathe said...

I am praying for Maya. I'm so sorry she is having these issues.
It's not fair, her poor little throat. May God heal her quickly.
((HUGS))

Holly said...

I am sending up a prayer for her now.

Aunt Becky said...

Praying without stopping.

one-hit_wonder said...

Prayer for Miss Maya.