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)...

Tuesday, March 18, 2008

Eva Update...

I thank you all who continue to check in on us and those who are respecting our needs and not calling. I do want to talk to everyone but have been so exhausted and experiencing a mix of emotions. Please bare w/ me.


I'll attempt to start at the beginning w/ hopes to not jump around too much.


We arrived at the hospital around 6:45am Monday morning and things moved very fast. I mean so fast that I was on my way to the OR at 8:25 w/ my doctor and anaesthesiologist and my nurse had no clue where I was. Boy was she mad at those boys! I was given a spinal...Vinnie barely made it as he was waiting in the waiting room by accident instead of in my room where he should have been. So no one could find him either. He made it though...just in time..."scrubbed in" and all!


Eva was delivered at 8:47am. I saw her for a second...she was extremely blue w/ a low heart rate and needed some assistance to start her breathing. Once she got the little bit of help she pinkened up, her heart rate inceased and she began to cry. Music to my ears! Vinnie held her for 20 seconds, they turned her to me, took off her hat revealing that full head of hair...then whisked her away to the NICU. I then puked several times due to the movement from OR table to recovery bed and was heading back to my room to recover by 9:03. Now that's what I call a speedy delivery.


It only took a couple of hours to feel my toes and move my legs, thank the Lord! We then met w/ our pediatric cardiologist and neonatologist to get a report. At that time Eva was doing pretty well, on some oxygen and not too bad off. The echo revealed what we already knew, the 4-5mm VSD and the mitral valve defect. The MVD is (as we previously thought) pretty bad, maybe even worse than we expected. And another defect was seen as well. Something w/ the aorta flaps where there are usually 3 and Eva has 2 (not sure on the medical lingo for this).


Even though these things were seen, our case was discussed w/ the surgeons at Children's Hospital and we were advised that it was likely that Eva would be considered a surgical candidate for her heart. This was surprising to us because of the T18 but the docs knew our desires and wishes and were treating her as a "normal" baby. So we vouched to have the transport set up and to have Eva transferred to Children's to be monitored and evaluated. We felt that if she couldn't "room in" with me at the hospital that I am in then why not have her where she could get the attention she needed for her heart from a surgical stand point. Now please understand we did not want anything done surgically if she would likely not make it. Then again they would not do a procedure if it were harmful to her in any way but at this point we needed a more thorough evaluation before making such decision.


So on that note, the transport was set up and we went to spend some time w/ her before she was to leave. This was the first time I was really getting to see her. By this time she had gone from the minimal oxygen to the cannula to C-PAP (not a good sign if you ask me). We were able to get some picture w/ our NILMDTS photographer w/out the tubes but only lasted maybe 3 minutes because her color started to change drastically. So our photo shoot was cut short and she was put back on the C-PAP which got her color back, back to where she was at least. I got to hold her for those 3 minutes, not even and then sat next to her for an additional 10 minutes or so.


Right before Eva was ready to leave and in between Vinnie taking our family in one by one to see her she began having greater issues w/ her breathing which required her to be put on a vent. This was upsetting to me, not because they put her on (as we wanted it done if necessary) but it was just upsetting that she had gotten to that point. So after the vent was placed and she was stabilized she was ready to leave. Again, upsetting to me cause I then didn't want her to go now that she was on the vent but felt a sense of peace about it...praying for angels to surround her as she travelled just a few miles from here.


I received a call a little later from her nurse at Children's stating that she was doing well and was being evaluated. Next call came from a doctor stating that her vent tube had become clogged w/ blood (must have been from the placement of the vent causing irritation and bleeding) and it needed to be removed. He wanted to know if we wanted it replaced. Ummm, hello...Yes, we wanted it replaced, dummy! If she needed it and was depending on it than put it back in! Anyways, it was put back in but then needed to be set higher than it was for whatever reason. So again, more upsetting news.


I need to back up a few...before Eva left to go to Children's she had an ultrasound of her brain due to an enlarged spot which appeared to be fluid to the neonatologist. The findings from this was that she has an enlarged ventricle on/in her brain w/ blood in it. This was new to us. This was never visible or at least never brought to our attention prenatally. So knowing this and her being on the vent prior to being transferred seemed to me that she would no longer be a candidate for surgery. And after it being brought to the teams attention at Children's they still insisted her coming over to evaluate her heart regardless of the T18 and the other now known issues. They said that it didn't matter.

Short and sweet...Eva is no longer a surgical candidate due to a number of reasons. Reasons being the T18, the numerous heart defects (would require multiple procedures to fix), the lung failure and the need for bypass to fix the heart which it is likely she would have difficulties coming off of the bypass if put on. All in all she would likely not survive surgery so we and they have vouched against it.


***In a nutshell - Eva left to go to Children's Hospital on Monday around 2:30pm and returned Tuesday around 5pm. She is still here, in the NICU and on a low vent setting until at least tomorrow. We have many other obstacles to overcome. From the looks of it w/ her heart disease causing lung failure, her lungs disease causing heart failure, the bleed on her brain and now intestinal issues causing the concern to feed once off the vent it is likely that she will not be a long-term survivor like we had hoped. There is always a chance of her heart failing even on the vent. It is likely that if we have her weened off of the vent, stable w/ oxygen and on iv fluids and nutrition we may get her home for a day or two before her heart and/or lungs fail . She doesn't appear to be a Tristan, Jacob, or Molly. We are not giving up nor losing faith. I always knew that our story would be our story and that God's plan for us would differ from all the rest. I still pray that things will get better but know that if it's not meant to happen than it won't. God had provided more than enough and we pray for him to continue to provide and bless us w/ more precious time.***

Please pray for wisdom for us as well as for all of our doctors. Pray for peace for whatever decisions we are asked to make. We already feel at peace w/ where we have come so far but have further to go and need to know we are doing all that can be done. We know that God is in control and he will meet our needs as well as the desires of our heart. I hoped that I wouldn't have to give Eva back to God so soon and still pray that I won't have to at all but I am extremely content w/ knowing that I will, no doubt, see her again. I can rest knowing just that...

46 comments:

Anxious AF said...

I pray that God gives the doctors wisdom, and saturates you and your family in perfect peace in Jesus name.
Perfect peace, in Jesus name!

Anonymous said...

Thanks so much for taking some of your precious time to write and update us! It's nice to know that you are getting some time with Eva! We will continue to pray for your sweet baby girl and the rest of your family.
Kings in Vancouver, WA.

Anonymous said...

Still praying in SC...

Erika said...

We'll keep diligently praying for all of you!

Jane said...

still praying!

Mandy said...

Praying for you and knowing how hard all of this is to take in. You have so much support. I have checked here all day to find out some updates so please keep us posted as you can. Know that you are being thought of and prayed for. God bless you and sweet Eva.

Mandy
GA
www.madelinegracehopkins.blogspot.com

Anonymous said...

Praying for wisdom for the doctors, peace for your hearts, and more precious time with Eva.

Anonymous said...

I know you don't know me, but I came across your story a few weeks ago. One of my best friend's name was Eva. She was a very special lady and when I saw your precious bundles name I was overjoyed knowing that your little bundle would have "quite the fight" in her.

I am praying for you in NC. I found you through Joshua Sams blog (I think ...)

Anonymous said...

I continue to pray for all of you and claim Ephesians 1:17 "that the God of our Lord Jesus Christ, the Father of glory, may give you a spirit of wisdom and of revelation in the knowledge of him..." I pray that you feel strength and peace as you love on your precious Eva. Blessings - Lynne B.

Alicia said...

Chrissy,

So glad you are getting time with precious Eva.....thanks for the update.

Praying for Eva....(and your family of 5!)

Love ya!

Alicia

Rebecca (Ramblings by Reba) said...

Thank you for the update on your precious Eva. We'll keep praying.

Anonymous said...

WE LOVE YOU!!!

Enjoy every minute of life. It is all, we all have!!!

See you soon,

Gloria

Emily said...

Praying for your heart. Miller Grace was on a vent, too, and no matter what they say, you CAN hold her while she is intubated. Be persistent, grab a pillow and just breathe her in, every second that you can. You can do this, sweet Chrissy. You were anointed for this. Eva is beautiful and wonderful and fearfully made. And she's here. Go rest in that. God will take care of all your tomorrows. It's going to be alright.

Anonymous said...

hang in there guys...you are such a strong family and i don't even know you but I can't tell from reading your blog. I think this is why God choose you for this special journey even though it is soo hard for you. I will not try to pretend I understand your pain....i am only 15....but my heart aches for you....i pray that the Lord's will will be done and that God will give you peace. I am praying for sweet little Eva!!

moriah freeman

Meems said...

Chrissy and Vinnie,
Thinking and praying for all of you. Your strength is amazing. He will guide you every step.
Peace,
Cathy and Dave

Anonymous said...

Thanks for updating us.
Just wanted you to know I am still praying!

Anonymous said...

I'm continuing to pray for your precious Eva Janette and your whole family. May God comfort you and wrap His loving arms around your whole family, both day and night.

God bless you all.

Sarah Bishop
Bartlett, TN

The Bullards said...

You seem like such an amazing person. I will continue to pray for your family and baby Eva. She is just beautiful!
Shannon TX

Rachel said...

Chrissy-
Praying for your sweet Eva. May you be able to hold her and may you recover quickly so that you can enjoy each precious moment God has granted you with this perfect child. Praying for your hearts to be full of peace and comfort at this moment and in the days to come. May you rest assured knowing that God has ordained every precious day in Eva's life and that when she leaves your arms although you will miss her she will be healed and go straight into her loving Heavenly Father's arms. praying that when that moment comes you are able to expeprience God's love and feel His presence as you have never before.
Hugs and Prayers
Rachel in PA

Unknown said...

Chrissy I am so sorry you're not getting the news and prognosis you wanted! I'm definitely praying for all 5 of you. I'm praying the same thing for Eva that I prayed for Joshua - that you'll be able to enjoy ALL the days ordained for Eva Janette by the Lord. In the end for us that was 67 days. God only knows. Do what's best for Eva... that's all we can do as parents - our best. Such a blessing to have her alive isn't it? Xo Eva!

Anonymous said...

Thank you for the update Chrissy. She is so lucky to have you for her mom. God has really given you wisdom beyond your years. I will continue to pray for you all. Soak her in, she is precious!

Lisa in NC

Anonymous said...

Chrissy,

Your family are in my thoughts and prayers. My heart is with you all. Eva is blessed to have such a wonderful, caring family. You are blessed to have such an amazing, beautiful baby girl. I pray for peace for all of you. The 5 of you are truely remarkable. God bless you.

Mandy Rose

Anonymous said...

Thank you so much for sharing your story! You are blessed with strength and courage from God and He will continue to lift you all up! Your faith is amazing! I will continue to pray for your entire family, especially sweet little Eva.

Anonymous said...

Thank you for updaing Chrissy - I check your blog a few times a day and pray for you all the time. I found your blog about a month ago through Copeland Farley and baby Jacob's Blogs and you've been in my heart and prayers so much ever since! I pray for wisdom, peace and time with Eva! Love, Leah in Seattle

Kim (marygracesummons.blogspot.com) said...

Chrissy,
It's good hearing from you. It is so much to take in so I can imagine how you are feeling right now. I will pray for all your needs, especially peace with whatever comes your way. I am praying hard friend - you are definately covered in prayer! Give Eva lots of hugs and kisses from all her friends.
With love,
Kim

Anonymous said...

Chrissy,
Thank you for the update. I wish it had been "better" news, but I know Eva is receiving lots of love. Fill her up with it! She is just beautiful.

Praying,
Karen in TN

Anonymous said...

Hello. I found your blog through Susies and I've been reading for a few days now.
I wanted to let you know that I am keeping your family and precious Eva in my prayers.
God bless.
Love and prayers from Ohio.
Jessi

Catherine said...

Eventhough I have no clue what you are going through, I want you to know that I am praying for your entire family....you are a wonderful testament to God's faith and love and I appreciate you sharing your story.

Mountainmom said...

Thanks for the update---been looking forward to hearing more of her story. Praying for peace in the midst of the storm, and that you will have divine guidance every step of the way.
Lori in VA

Laurie in Ca. said...

Dear Chrissy,

It is good to hear from you sweet friend. My heart is heavy with prayer for you as you process the overwhelming amount of information on Eva. I know that God is holding her and He will give you and Vinnie the wisdom and peace you need for each decision you make for your precious baby. You are so right, this is your story in your journey, and she is your baby, hold her and love her as much as YOU want. I am praying for time Chrissy, time for you to love her fully as you have waited for her these past months. As Susie did with sweet Joshua, enjoy every single moment and take Eva into your hearts. My prayers continue for you here hourly.

Love you and Big Hugs, Laurie in Ca.

The Pittsburgh Hites said...

Chrissy,
Stay strong, keep praying, and enjoy every second you all get together. I'm glad that she is close, so you can be with her.
I'm happy that you have found NILMDTS, and if you need anything from any of us at NILMDTS, just call on us.
All our prayers,
The Hites family

Unknown said...

I came over to your site from Susie's...I just wanted to let you know that I will be praying for your family and for Eva. What a beautiful little girl!

Dana in Virginia

Anonymous said...

Continued prayers for you and your beautiful family. I am so thankful for the time you have with Eva...may God continue to guide you all with the wisdom and grace that only He possesses. Every moment is a gift...Lifting you up!

In Christ,
Trisha Jurgemeyer
San Diego

Kim said...

I pray that God will continue to pack life into Eva's days, no matter how many they may be. And I pray that you will be able to take in as much of her as is possible. She sounds lovely. :)

Chelle' said...

Praying for all of you. For peace, comfort and steadfastness in these uncertain times.

He holds you all in His hands.

-Chelle'

Judy said...

Congratulations on the birth of precious Eva! I'm so glad that she arrived safely and that you've been able to spend some time with her.
1 John 4:8 "Perfect love casts out fear." The love Jesus has for little Eva is even greater than the love you have for her. Knowing that Jesus loves her so dearly and knows what's best for her should bring some comfort and take away your fear. I'm praying that this verse will bring you peace. I've been checking for updates several times a day and praying for all of you. Thank you for taking the time to update everyone.
Blessings,
Judy in PA

Anonymous said...

Praying for you in Indiana...

-Melodie
www.xanga.com/Africaz_Melodie

Jen in Al said...

We are so thankful she is here!!!!! Covering you in prayer every day! thank you so much for the update and pictures of your beautiful precious Eva and the rest of your beautiful family! Praying and loving your family from Al, jen in al

boltefamily said...

Thank you for the list of specific prayer requests. I will be praying constantly. Try no to worry about things and enjoy your time with Eva no matter how long or short. Remember God is in control, and as long as you know that He will make your tough decisions for you.

Pauline said...

Chrissy,
Thanks for taking the time to update, as time is precious we are grateful you updated,
Stay strong
Prayers from California!
pauline

Anonymous said...

Your family is in my prayers...your little Eva is so beautiful.

My Busy Boys said...

My thoughts and prayers our with little Eva and your family. May God continue to lift you all up and hold Eva strong.
She is so beautiful.

Praying hard in Wisconsin
Kim

Anonymous said...

Because of the Lord's great love we are not consumed, for his compassions never fail.
They are new every morning; great is your faithfulness.
I say to myself, the Lord is my portion; therefore I will wait for him.
The Lord is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the Lord.
Lamentations 3:19-26

He gives power to those who are tired and worn out; he offers strength to the weak. Isaiah 40:29

Kenzie said...

Chrissy-
I have been praying for you guys and you have been on my heart constantly! I am so thankful that you have had this time to share with her, even with the tubes and tape. Praying for all of your requests and that the Lord will continue to bless this wonderful time. Everyone looks so proud of this tough little girl... praise the Lord for these days!

Love you and praying,
Kenzie

krueth said...

Thank you for taking the time to update us. Praying so hard for you all, and that you can have some time at home with your precious little Eva. Wendy

Anonymous said...

I continue to pray & pass your news as often as I get it to anyone who will also pray for you. We are all thinking & praying for your whole family & especially Eva. Stay strong! God won't give you more than you can handle, or Eva for that matter. :) Lots of Love!- Kathleen