12:08am:

Tonight at 9 pm DH called the NICU and they have turned down the vent some with no issues and are going to try to turn down the dopamine which she is on for blood pressure issues. We are hoping to get her weaned off the both of them soon. The Ventilator the longer she is on it is causing more issues for her lungs. The dr is almost positive she has Pulmonary Hypoplasia which is from no fluid in the womb. Only the following weeks will determine how badly and how much help if any she needs with breathing.

Sometime this week they are hoping to start her on my breastmilk through a tube and begin Kangaroo Care.

7:43am:

This morning I got 6 oz in one pumping! I immediately froze it. I'm so glad I can do this for my pumpkin. We're going to call Riley about 9 am for an update. I have a home care nurse coming today to do a check up on me since I had such problems in pregnancy and delivery.

11:13pm:

They checked her blood gasses at 1 pm and 4 pm and they were good. But DH just got off the phone with the NICU and they've had to turn up her oxygen again. Last night she was at 21% but they've had to go up to 25%. I can't wait for her to get off the vent. I want sooo sooo badly to hold her against my chest, his her head, and smell her hair, and let her feel my heart beating.

I saw a movie a while back called DragonFly. And at the end of the movie they told the husband that while they could not save his wife's body. They had saved her soul (meaning her child)

Leaving my tiny baby in the hospital that rings true. I feel like a part of my very being has been cut off and I know it won't feel better until she's home

4:24pm:

We're back from the NICU. I took over 22.5 oz in for her. When we got there she had just come off the billi lights and still had her mask on.

They were able to turn her oxygen back down to 21%!! I was so excited about that. They've lowered her dopamine from 7 to 6! So she's heading in the right direction.

They had to do labs and were having a hard hard time drawing blood and ended up poking her about 11 times. During one of the first pokes she desatted and I about had a cow. But the nurse left her alone for a while and I got to love on her and she stableized very very good. As I was petting her head she was trying to turn towards me.

We also got a surprise, Yesterday the NICU nurses made fathers day cards for all the daddy's. They took a handprint of Calypso' s hand and a picture and put them on a beautiful bunch of paper and then had a poem. I'm going to put a picture of it in the photo section.

We'll call tonight before bedtime and check on her for the Day.

11:34am

We have WONDERFUL news from the NICU! She's been weaned off the high frequency ventilator (Oscillator) and onto the REGULAR Vent!! Her dopamine is at a 3 and they are going to try to wean her off that today also!!! Thank you GOD!

Baby girl also has another bladder u/s today to see if there is a blockage in there or what is going on with her not being able to pee by herself.

2:21pm

We just got off the phone with the NICU. When we saw it was them calling we both about died. We were thinking it was one of those calls that EVERY Nicu parent dreads. Instead it was good news!

The CAT Scan of her head came back fine!! No brain bleeds!! Thank you GOD!! They haven't done the u/s of her bladder yet but depending on the results of that she may be seeing the Urologist tomorrow. If it's not a blockage they think the nerves just aren't firing right and telling her she needs to pee. She's doing VERY well on the regular Vent and off her Dopamine!!

5:55pm:

We spent 2 hours with baby! She's doing really well! She's been off her Dopamine for over 24 hours and is holding her blood pressure good. She's doing ok on the regular vent. They haven't been able to turn it down any yet but they didn't have to turn it up either which is great.

They STARTED FEEDS!! Even though it's not a lot it's mama milk which is what she needs.

They still are not sure what is going on with her bladder. When she gets off the vent they are going to inject dye into her bladder and see if she has kidney reflux or what is really going on. They replaced her Foley Cath today cause she peed out the other one lol. They are also sending her Urine off to be tested for Protein. If there is Protein in it that means her Kidneys may not be working like they should so she'll see a Kidney Dr.

8:36pm:

They stopped her feeds and that's all I feel like posting

So all in all it was a 'stable' day.

6:02pm:

They've started her on feeds again. She's getting 3ML 3 times a day. Hopefully she'll tolerate them and in about a week she'll be at full feeds.

Her vent pressure is still at 17. When we were there today baby girl was being a drama queen and didn't really want touched much. If we touched her she'd wave her arms and act like she wanted to cry lol so we only stayed about an hour and told her we'd come back for longer on Sunday. We're going to stay overnight at the small hotel in the hospital on Monday and love on her at night time too.

We bought her some preemie outfits and some hats. She can wear the hats now and the outfits are for later.

8:40pm:

I feel stupid. Turns out she's on 3ML every 3 HOURS not 3 times a day. LOL my bad. She's had 3 feeds today with no issues so far!! I'm praying to GOD she keeps taking them well

6:55pm:

1 step forward 2 steps back. Baby girl is peeing on her own!!! For the first time since birth!!! The Foley Cath is out!! The nurse changed her diaper while we were there and was like 'wow you are soaked baby girl!' YAY!!!

However Calypso is NPO again because they think she's got NEC (Necrotizing Enterocolitis) a severe infection on the intestines. They've started her on 2 antibiotics and they are doing a blood transfusion. They also gave her morphine for the pain.

Her vent settings are still the same 50 for rate, 17 for pressure, and a peep of 5. Praying sooo hard it's not NEC. They are going to continue to take xrays of her stomach and keep doing blood work to see how everything is. Today they didn't even want us to touch her. They kept saying she's way to sick :(

8:38pm:

They are doing Calypso's blood transfusion right now. She's doing pretty well with it. No reactions. They weighed her tonight and she was 4 lbs. But that isn't very accurate because she's so swollen. We'll have a more accurate rate after they get the water and such out of her system

4:17pm:

They were going to put in a PICC line but decided to wait till tomorrow. Baby bean is having an icky day and they stopped feedings. They are just gonna leave her alone today

11:27pm:

 Baby girl is back on feeds!! Her blood gasses were great tonight and they'll redraw them in the morning

12:58pm:

Baby girl is back on the Oscillator. She's not having a good day. The drs are really concerned because by now she should be doing much much better then she is. I'm starting to wonder if my baby girl will ever come home. I feel horrible and am now petrified that we've got all this stuff for her........that she might never use

2:37pm:

Called the NICU. They are going to do another transfusion. Calypso is back on the Foley Cath again also. She's having a really icky day

3:56pm:

So the NICU called again. They are going to put a central line in baby girl. They said it will be in until she's up to full feeds. It can stay in up to 3 weeks

9:56pm:

We went to visit Calypso. I hated the thought of her being sick without loves from mommy. Her tummy looks a lot lot lot better. Hopefully that means those antibiotics are doing good. We're praying she'll go back on the regular vent soon. We took some pics of princess today and I'll stick 2 in the photos area for you all. Still praying for good news tomorrow!

1:03pm:

She's back on the regular vent!! Oxygen is set at 30 and the pressure is only at 10!!! She's still on the Foly Cath BUT is peeing more in her diaper then in the cath! Her blood gasses at 8 am were wonderful!

9:44pm:

Her central line is in. As of 8 pm she's on the Oscillator again while she recovers from her 'surgery'. I'll call back about Midnight to find out how she's doing.

6:09pm:

Happy 2 week birthday baby girl.

Calypso is in critical condition. Her Kidney's aren't working right. She's still on the Oscillator. Her body is so swollen she is not able to be moved to the conventional vent. She's very very sick. They are doing some tests on her and taking hourly xrays to see how stuff moves through her stomach and bowels. We are staying at Riley during this time and won't be able to check back much at all. I am hoping that in a few days we'll have a wonderful happy update. The drs are very concerned about her Kidney's but said this happens quite often in the NICU and that things could resolve themselves today or sometime in the next week.

They have baby girl very sedated and on morphine and they've put in a PICC line in her head. Her central line area has not had anymore bleeding problems which is wonderful.

Please please please continue to pray for our little princess. I have spent the last few days in constant prayers. I keep thinking God got her through so much already surely not just to take her from us now before we've even got to hold her.

8:36pm:

Baby girl seems to be loosing her fight. Right now she really really needs a miracle. She's even more swollen today and has not had any urine output for over 15 hours. They've triple dosed her with Lasix. If that doesn't work they are going to try other meds.

We're waiting for surgery to come up and acsess her. There is a big possibility of her going into surgery if they think she is stable enough. They've got a tube down her stomach that is sucking up old blood.

I am really getting scared for her. Today she is even more swollen then she was yesterday. I'm staying at the RMH here in Riley on the first floor. Tonight however I'm alone and I hate it. I feel so emotionally broken

8:22pm:

It's been 24 hours with no urine output. The nurse is doing her blood gasses now. They had to sedate her because she was acting like she was in pain. The drs are going to call me sometime tonight and discuss our options.

2:35am:

I contacted a woman from the ACPCG http://www.acpcg.com/index.htm they do free photography for parents with critically ill, premature, or early infant loss. The lady contacted me back and on Monday we're going to do Calypso's photoshoot in the NICU at Riley. Her name is Nicole Green This is her blog http://www.nicolegreenphoto.blogspot.com/ and it has her other works. She does AMAZING photograpy

9:53am:

WE HAVE PEE!!!! Not a lot but it's a step in the right direction!!! Praying her kidneys start picking up and she can pee all that fluid out of her

3:25pm:

We've had 6 CC of pee!! YAY baby!!! Her blood gasses were good. And the nurse said at one point she turned away and when she turned back Calypso was sucking on the tubes in her mouth. Silly Peanut

9:31pm:

Calypso's 8 pm blood gasses were good so they turned her vent down some! They've gotten 12 more CC's of Urine and they changed her suction and got a ton out! She said she's laying on her tummy and is crashed out without sedatives she was doing so well!! They are going to replace her foley cath with one a bit bigger so hopefully it will help get her bladder empty better.

1:44am:

Dh called the NICU and called to update me! They got another 6 CC out of Calypso!!! YAY for PEE!

5:10pm:

We just got back from the NICU. Nicolle took the pics and fell madly in love with baby Calypso. She said she'll try and get to working on the pics tonight and we should have them by the end of the week. The majority of them will be black and white! I'm soooooo excited!

Baby girl is on 70% oxygen and still really really puffy. When we got there she was asleep on her tummy and her bottom was very swollen I told her she had a J-Lo butt and she desatted on me. Drama Queen.

Her prayer blanket has replaced the Isolette cover and is big enough it covers her Isolette!! YAY!! So the nurses said they had no problem at all with leaving it there :)

10:37pm:

So Calypso's total pee output today was only 6CC BUT they went down on the oxygen setting on the Oscillator!! YAY!!

I'm hoping at 1:30 am when I call o check on her she'll have had more pee and we'll have more good news

2:58am:

126cc of PEE!!!! WOOOHOOO!!!!! She's up on her oxygen though. She's at 90-100% oxygen right now ~.~ I really hope that gets better soon too!

Nicole has given us some sneak peeks of our photoshoot on her blog at http://nicolegreenphoto.blogspot.com/

She did so great with these pictures I can't wait to see the rest! Now the only problem will be finding frames that we like LOL

1:01pm:

Calypso peed out her Foley today. When they went to put it back in they press on her bladder a bit to help it go in however she desatted really bad so they left it out for now. However she ALSO peed ALL over her bed! LOL

Her oxygen is at 100% right now and they are waiting a little bit and then they'll put her Foley back in. 
 

4:31pm:

Just called the NICU. They got the Foley back in but she desatted very bad but they got her back from that. She went very very low though.

There is some pee coming out of the cath now. They are giving her a triple dose of Lasix now also. They did an u/s on her bladder and xrays on her kidneys. We don't have the results of those yet though. Baby girl had another dose of morphine and is now asleep on her tummy.

I'm not having a good day emotionally. I just want this stupid NICU experience over and my baby at home with me 
 

2:12am:

A letter to God I wrote today

Dear God,

I know everything you do is for a purpose. And I KNOW it in my head but I can't for the life of me understand in my heart WHY my baby girl has to go through this stuff. She's so small but has already had stuff done to her that most adults haven't had done to them.

I realize that I may not be able to see her grow to adult hood but I beg you with EVERYTHING in me to let her come home. Even if it's just for a while. I want her to come home and be with her sisters and with me.

I want to hold her and rock her and actually be able to kiss her head. I want to sing to her and know she hears me. I want to see her eyes. I haven't even been able to do that. I want to be able to put her in clothes that WE bought her. And take her on a car ride and a walk through the park.

I want her to go to MOPS with me and the girls and smile at me. I want her to sleep in her own crib and use the diapers we have for her.

Please Lord I don't care if she's on oxygen or a vent or has been trached. I don't care if she's on a feeding tube or what. I just want her home. I want to hold her in my arms and tell her how much I love her. Please God you've done things so much more complicated then this surely it's not an unreasonable request?

In Jesus Name
Amen

3:59pm:

Baby girl peed about 6 cc last night. When we were there she had some pee in the catheter but it hadn't reached the measuring chamber yet. They've brought her oxygen down to 90% and are going to try to wean her down a bit more sometime today. Baby is back on Dopamine for blood pressure but not much (5) and since her bp is good they are going to wean her back off that. Dopamine also helps with the kidney functions in a lot of cases the dr said.

Baby girl is still really swollen but definitely not as bad as she was! It doesn't look like her little hands will split open at any time now.

I got to hold her hand today without her desatting! I sat there and held her hand and sang her a lullaby called Hine, E Hine for about 20 minutes and she tolerated it soooo well!

12:32pm:

Baby girl is stable. Her blood gasses were awesome so they turned down her vent some! YAY!! However we've not had any pee pee ~_~

The Social Worker has been trying to call us because the drs want to have a huge sit down with us and discuss our options with baby princess

2:37pm:

They just called. They've declared Calypso in Renal Failure and because of the NEC they can't do dialisis. I was pretty much told by the dr that he had thought her Kidneys would be working by now. And that if they didn't start soon her Kidney failure will kill her. I feel so fucking sick to my stomach

9:59pm:

Calypso's blood gasses are awesome and they turned down her vent some. No pee still though ~_~

Her blood pressure is still great though. She just needs to pee and her kidneys just need to work

11:00pm:

Whoever says compassion and is dead and humanity is selfish needs to step back and re-evaluate their lives. The amount of support we've have for our baby girl is so staggering it brings tears to my eyes.

The fact that these people online who've never met me or my daughter are supporting her and praying for her without ceasing. My family members and friends who've never met her. It makes my heart swell with gratitude and love to know so many people are so involved with my angels life story.

We sat down and met with a team of drs today. They told us her kidneys still aren't working BUT that her NEC is almost GONE!!!! They injected die into her stomach and watched it move through her body!!! Now we are simply waiting to see if her Kidney's kick in. Dr Engles said that he's seen babies in Kidney Failure up to 4 weeks and then BOOM one day they start peeing and don't stop again. He also said the fact that she had a few days of pee and then nothing also could mean that they are Starting to function because sometimes they do that start and stop.

Baby girl is still in Critical Condition of course but there is hope. He said if she starts acting like things are getting to hard on her they can try a medicine or try dialysis. This could be risky since her stomach and intestines ARE still healing BUT if she starts going down hill we'll do anything possible to help her.

Right now they are monitoring her fluid, electrolytes, and all that stuff. As well as her blood pressure and blood gasses. All those at the moment are stable.

Over all we're playing the waiting game. Wait and see if she can do this or wait till God takes her home to be with him.

So Kind of the same news we already had with the one exception about the NEC being gone.

I know the news will spread quickly and wanted to remind you all of this. Humanity and Compassion are NEVER NEVER gone. Sometimes there is just so much junk to wade through that the compassion and caring gets over looked. Please take a moment out of your day to smile at someone and give them a bit of hope in the world. And Thank you All for giving us and our earthly angel this hope that the world hasn't gone to hell in a hand basket

12:00pm:

Baby girl is going downhill. She's fighting the vents, in a lot of pain, and her blood pressure is going crazy. The NICU nurse wants us up there asap. We're really scared for angel today

6:18pm:

Calypso Paikea Rhyder got her angel wings today 7/7/07.
People say 777 is heaven's number and today I truly believe that.

As we were on our way to the NICU this morning about 10 minutes outside of Indy the dr called and told us that her oxygen sats had been under 60 for 4 hours and we needed to hurry because we were loosing her.

When we got there I called my parents and we went in to see her and talked to the doctors. I could tell just by looking at her it was obvious she was already almost gone. The drs said they could try another procedure that had little chance of working or take her off the vent. We chose to let her go. The hardest thing we've ever done in our life.

But doing the right thing is not always easy. As I held my angel today they baptized her and my girls got to come in and to see her. And my mom and my mil held her. Then we went to the other room and they were taking her off the vent and were going to bring her to us.

Oh Lord she fought! Even without the ventilator in my arms I could hear her gurgling and trying to breathe and I wanted to DIE. I was killing my baby and letting her die. My angel went to heaven in a room surrounded by my family and dh's family. We don't have an exact time of death because she died in our arms.

They dressed her in an outfit and wrapped her in a blanket and brought her back to us again to love on her. Before we left they gave us the clothes and the blanket she had been wearing as well as a lot of mementos. They did foot prints and hand prints and casts of her hands and feet which they will mail to us. We got a baptism certificate as well as a large teddy bear with a card that reads

'I know that this little teddy bear could never heal your broken heart or replace your child but, i will give you something to hold on to.
These teddy bears were given in memory of children that were called back to Heaven far too soon.
This teddy bear was given in memory of Scottie Michael Mullenix with love from his family'

And it has a picture of an angel on it. We also got every blanket and hat and anything that Calypso had used in the NICU.

My soul is half missing and it will never be whole until the day I am reunited with my princess.

12:15pm:

Calypso's Service will be held on Friday at 11 am at New Community Church in Martinsville Indiana.

9:28pm:

Today I got a memorial tattoo for Calypso. Her name and her foot and hand print and birth and angel days. Joe got her name on his arm also

7:48am:

We little knew that morning that God
Was going to call your name
In life we loved you dearly,
In death we do the same.
It broke our hearts to loose you,
You did not go alone;
For part of us went with you,
The day God called you home.
You left us peaceful memories,
Your love is still our guide;
And though we cannot see you
You are always at our side.
Our family chain is broken,
And nothing seems the same;
But as God calls us, one by one,
The chain will link again.

3:01pm:

Calypso's service yesterday was very sweet and very very full of love. More people showed up then I thought they would. We received beautiful flowers which were very very appreciaed.

Terry's service was wonderful. We got home and turned Calypso's changing table into a memorial for her. I'll post a picture of it in the photos for everyone to see.

Today is Calypso's 1 month birthday and her 1 week angel day. Her Heavenly birthday and her Earthly birthday. We have a candle lit on her memorial here at home that will stay burning all day long.

We miss you Princess very very much. I hope you are having a good birthday in heaven

12:05am:

Hi Baby Angel. I hope you are having a good day. I wish Heaven had phones like the NICU did and I could just call up there and make sure you are ok.

I am not sure if you checked up on what we were doing today so I wanted to let you know how everyone is. Your big sisters are good but I think Raeden might have an ear infection. We're not sure. She's been VERY VERY grumpy and screaming and crying for no reason at all :( She's going to go see her dr today and hopefully we'll get her all taken care of. Freja is doing fine, she got mad when she couldn't get a new Thomas Train though.

I've been painting on a box to put all your stuff in. So far I've gotten it painted a really pretty blue and have a ship painted on the lid and your name on the front. I still have a lot to add to it though. I really hope you'll like it when it's done.

Freja is driving us nuts to order her a pink twinkle star and you a yellow one. She said since 'baby calypso in the stars' that you needed a twinkle star too. So we're going to do that next week and order you both a twinkle star to go with Raeden's.

Daddy misses you so badly baby girl. Today he was looking at your pictures and started crying. He wants you to know he loves you sooo sooo much just like I do and that he's sending you kisses and hugs up in heaven. They might take a little while to get there so keep your eye out for them.

I love you my precious baby girl.

12:41pm:

Where do balloons go mommy when you set them free?
Do they float into clouds or get stuck in a tree?
Do they fly high in the sky or get popped by a bee?
Do they soar with the birds and the bugs in the air
Or stay close to the ground and get chased by a bear?
Does the wind blow them out over the Big blue ocean
Or do they climb up and over small hills and big mountains!
Do they go out in space and circle the stars
And then fall back to Earth after traveling so far?
Or does God collect them all in a big bouquet
And give them to children in heaven each day?
Where do balloons go mommy when you set them free?
I hope they go to Heaven as a gift from ME!

By Ann Deane

12:12am:

Happy 5 week Birthday Calypso. I miss you.

'Blessed Mother up above,
give my baby all your love.
Hold her tight against your breast,
let her lie her head to rest.

No more pain, nor endless suffering,
only tenderness and cuddling.
And please dear Mother hear my plea
When I die, give her back to me'

9:03pm:

Your angel's touch can be felt in a warm summer breeze, her music heard in the melody of a songbird, and her beauty seen in a rainbow sunset.... Your angel is always near.

-Suzanne Siegel Zenkel, 
 

12:30am:

'Praise You In This Storm'

I was sure by now
That You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say 'Amen', and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
'I'm with you'
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find You

As the thunder rolls
I barely hear You whisper through the rain
'I'm with you'
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

Everything from this point on will be on my journal at Calypso's main site at 

http://angelcalypso.bravehost.com

 You can get to it from the main page or from the side bar to the left. Or you can read about our family and our life without our angel at

http://andromedarayne.blogspot.com