Keller, TX ~ August 7th, 2010

Keller, TX ~ August 7th, 2010
The "eight of us" together w/ our NEW babies after our losses...

Living Proof ~ June 13th, 2009 ~ Pittsburgh, PA ~ Beth Moore

Deeper Still ~ June 28th, 2008

Deeper Still ~ June 28th, 2008
The "eight of us" w/ Beth Moore (w/ empty arms)...

Saturday, March 22, 2008

Praising God for giving us more...

Wow, another day has passed!

And again, Eva has not!

We really never thought today would truly be "Good" Friday...and to think now that it was a "Great" Friday!

Eva has had an okay day. A little more fussy but we think that she is feeling a tad bit better and has realized all the poking that all are doing to her and just simply wants left alone. Her belly seems to be bothering her which is likely due to her intestinal issues. She doesn't like to be messed with that's for sure! She hates to have her head rubbed! She has a teeny tiny dimple on her left cheek, teeny like the tip of a pen...it is too cute when she decides to show it. Her lips tend to get try cause she is a mouth breather like dad and big sis so I have been putting "lip gloss" on her...(aka Vaseline - tee hee). I have changed 3 diapers, WAHOO! None poopy though. Tomorrow I will get to assist w/ her bath. Looking forward to this...and will drag dad alone too, even if just to be our photographer. Dad gets real nervous when the machines beep so this ought to be interesting.

Adding to my post yesterday...this is what I had originally said:

(Saturday the 22nd marks 18 years since Vinnie's Mom passed. Eva's middle name is Janette because of her grandma Janet waiting in Heaver for her...making Eva's initials EJ for Vinnie's best friend EJ who passed at the mere age of 18. Are these coincidences? 18 and 18? Will grandma Janet be waiting Saturday w/ open arms to hold her granddaughter? The first of her four grandchildren that she will meet?)

The following was brought to my attention today:
EJ was life-flighted to this hospital cause him mom worked here and wanted him here...this is where he passed.
Eva weighed 4lbs 11ozs, EJ's favorite song was "411"...
AND...Eva's Neonatologist said today (called me on her day off) that Eva has TRISOMY 18...
Hmmm...

As for today, March 22nd...we will be living in the moment as we have been all week and ever since September 28th!

(please pray for Vin and his family as today will already be a tough day full of meaningful memories of his mom)

Real quick, as I need to get some sleep...if I am spelling things wrong, bare w/ me. It is usually 2 am when I am typing these...in the dark...plus lack of sleep, lack of eating (due to my own lack of appetite), and spell check has a mind of its own at times.

We are still at the hospital as the plans to leave and transfer to TIC http://www.childrenshomepgh.org/chp.asp?SectionID=2 (here's where we were to go...you'll see why) fell through for today. Not because of us nor Eva...

The transfer was to be early this morning but there was come confusion. The doc here needed to check w/ them on the "food" that Eva is getting via IV to make sure they could supply it. Turns out they can but couldn't till Monday. After hearing this and thinking on it we had come to terms that it would have been okay to still go.

Then, the doc here said that we could not go there w/out signing a DNR (do not resuscitate order). This was NOT what we wanted. We do want basic CPR preformed (chest compressions and breaths/mask/bag) but do not want her put on another vent, meds nor shocking. We wanted to have in place something that we would be doing ourselves if we were at home. So again, we discussed and came to terms w/ the agreement that we would sign the DNR. This is TIC policy being that we would be going there for hospice care. We also would not be having monitors at TIC like we do here. Even though the monitors make Vinnie and the kids nervous (and me at times) we weren't really liking these terms but were at peace w/ our decision to go knowing that when God says it's time, it's time...not matter what. And we know that the monitors are not keeping her alive. TIC does not have docs on staff 24/7, just doing rounds once daily. WE needed to be there by 3pm to see the admitting doc...so we needed to get the ball rolling.

So at 12:30 all seemed to be in order. The doc here went to lunch as the doc at TIC was trying to call him to confirm all of this. So we paged the our doc (neonatologist) here. At 1:20pm our doc came in and asked if we were sure we wanted to go. We said yes. He says..okay well we have a slight problem and can't get you there till Monday.

WHAT?!?!? I couldn't even cry at this point! I couldn't believe my ears! Turns out that the doc at TIC's mom was rushed to the hospital (pray for Dr. G's mom, I do not know her nor her mom but know it was an emergency). And there is no transport nurse on the weekend nor do admissions likely occur on weekends. (All is supposedly in place for Monday, if we still want to go and if we see Monday).

It didn't take long for me to rest assured and feel at peace again. We just weren't supposed to go there today. Maybe we aren't supposed to go there at all. God will lead us as only He has all along. And I know this. So we are like I said still at the hospital. I was discharged yesterday. Last night we had the nesting room but tonight we have a patient room. Nesting is for sure better but no complaints here. We weren't kick out and are not paying for a hotel room. God is so good! Eva is still being monitored, we still have our CPR (if needed) in place and Eva is comfortable and has her "food" all weekend. Our God is an awesome God!

We had several visitors tonight as we know we are not promised tomorrow. We pray to see 12:01am tomorrow night/Sunday morning but again living in this moment...2am Saturday morning!

Please continue to pray for the obvious. Heart, lungs, intestines and brain. Her belly seems to be bothering her more. Praying for things to flow the way they are supposed to and to be easy on her tummy. And a praise...she suffers from NO apnea! Praise Jesus!

We love you all and are thankful for all of the prayers and support! We could not have come this far and neither could Eva if it wasn't for Our Almighty God carrying us through this storm. We know that there will be beautiful sunshine after this storm. Praising God for his perfect timing and for knowing the desires of our hearts. He knows just what we need and how much time to give us. And we praise Him for that!

I am okay if we don't make it home...for Easter...or even at all. That was my biggest prayer request but I didn't know the extent of Eva's condition either. I know how hard it would be for Vinnie and Dominic and even Mya to be at home and to watch Eva leave my arms to enter the gates of Heaven. If I were going home alone (just me and Eva)...likely I might have gone today. But I want Vinnie to be at ease w/ this as well as the kids...so I am at peace if we do not make it home. But no matter what...we will walk through our front door a family of 5 indeed! That is for sure!

5 comments:

Anonymous said...

Chrissy,

God is in control and HE IS GOOD! Praying for you today as always. Eva is precious. Glad to see the kids got a change of clothes! The shirts are cute! :)

Lisa in NC

Anxious AF said...

She is so beautiful, I love the picture where she is looking straight at the camra!
Praying for you, and Im so happy with the peace you have found.

Meredith said...

GOD IS GOOD!! I am praising his Holy name right now! Thankful for your 2 a.m. update....what great news to hear. She is so beautiful!!!

Praying without ceasing.....Many blessings,
Meredith/Orlando FL

Anonymous said...

Continuing to pray for your family. God is so good! May you feel his presence continually as you are carried on the prayers of many. Blessings to you!

-Melissa in Colorado

Mandy said...

I have been thinking of you and praying too. I am so proud of little Eva. She is a beautiful baby. I hope your Easter is a happy one.

Mandy
GA
www.madelinegracehopkins.blogspot.com