Saturday, January 26, 2013

Little update

I know I haven't posted lately, but here's what's been going on lately. We went in for our 2 wk visit and my incision looks good and is healing nicely. Of course Dr Martinez talked about the possibility of depression, which is completely expected, but he said he doesn't believe that we will. We also talked about next pregnancy, and he let us know if we wanted to try right away we can, and waiting is completely fine too. In this moment Chris and I have both talked about it and we agree that we want to have another baby sooner then later, but as Chris said its when I'm ready.

I also want to thank all the women who have reached out to me and let me know that you have been through losing a child. It helps me realize that we aren't the only ones going through losing a baby, and seeing that y'all have children after your loss gives me hope. As I've told Chris I know in my heart next time will be better, but I can't help but have those "what if's". I know that we will continuously be watching the sonograms to see if we can see any similarities to Chloe's. As we've said I'm pretty sure we should go become sonogram techs because we know almost everything to look for, and looking back on some of the sonograms right before we found out Chloe's condition and you can tell that the fluid was lower.

Some days have gotten easier, and some
nights too, it's def gotten easier to talk about and as I've told friends I don't mind them asking about how things are, or how were feeling. I want others to talk about Chloe and recognize us as parents, cause we are, we just have a child in heaven. We also got our tattoos we wanted to get for Chloe, we both got anchors for her because she is the one who has held us, and has been our rock to pray to and lean on. When I see others who in my opinion could be better parents to their children I tend to think about life because Chloe has shown us what life is really about, and we look at things so differently now. I feel that if any of those people were to be in our shoes they wouldn't be able to get through it as Chris and I have. Our relationship hasn't only gotten stronger, we've both became such strong individuals as well, and I know that we will be able to get through anything, and we will have our Chloe with us every step of the way. We also received our pictures from the hospital, and I have to say they are so amazing, I'll share a few at the end of this post. For those who haven't seem either Chloe's memorial service is going to be Thurs Jan 31st at 6:30 pm at Ellis funeral home. Thank you to everyone who has read the blog and been with us through this trying journey, y'all have helped more then you know, and we are grateful for you all to be in our lives.









Thursday, January 17, 2013

What is holoprosencephaly?

As many have read our Chloe had holoprosencephaly, in this post I want to share something's from a website in hopes for others to understand holoprosencephaly a little better.

Holoprosencephaly (HPE) is a birth defect that occurs during the first few weeks of intrauterine life. HPE is a disorder in which the fetal brain does not grow forward and divide as it is supposed to during early pregnancy (incomplete cleavage of the embryonic forebrain/failure of the prosencephalon to cleave into the cerebral and lateral hemispheres).

There are 4 different forms of HPE, Chloe had the most severe form of HPE called Alobar Holoprosencephaly. Alobar is where the brain is not divided and there are severe abnormalities (there is an absence of the interhemispheric fissure, a single primitive ventricle, fused thalami, and absent third ventricle, olfactory bulbs and tracts and optic tracts).

It is estimated that HPE affects between 1 in 5,000-10,000 live births. Since many pregnancies with a fetus diagnosed with HPE end in miscarriage, the frequency of HPE among all pregnancies may be as high as 1 in 200-250. Current studies indicate that only 3% of all fetuses with HPE survive to delivery and the vast majority of these infants do not survive past the first six months of life. The prognosis for a child diagnosed with HPE depends on the type of HPE and the presence of associated anomalies. It is said that some children with this are born with abnormalities, or facial deformities But our Chloe didn't have any of that, she was perfect, she had mommy's nose, eyes, and as we say the Hart toes, and Daddy's lips, hands, and long legs.

As all of our Drs have told us, HPE has no known cause, and as parents that is the hardest thing to accept. It has been hard to lose our beautiful daughter, but we know that Chloe was given to us for a reason, and we are always going to love her, and her siblings are always going to know her, and know how beautiful she is.

For anyone who would like to read more on HPE here is the website that we've read and got this information from.
http://www.carterdatabase.org/hpe/about/



The silver ribbon is the awareness color for brain disorders.

Saturday, January 12, 2013

So many questions

As the days pass, we miss our Chloe more and more, and wonder why she couldn't physically be here with us.  On Friday the 11th we had to go to Ellis funeral home to sign the rest of the papers for her cremation, and that has to be on of the hardest thing that a parents has to do.  I've been walking around a lot easier thankfully, mainly just sitting down and getting up are still a little sore but not as bad.  Chris has been absolutely amazing with helping me, and just being the amazing person that he is.  I keep telling him hes going to bust my staples cause he keeps making jokes and its so hard to laugh, but its nice to laugh and smile when we just want to cry. 

I've had a people tell me that they have no idea the feelings that Chris and I are experiencing, and I must say I would never wish it on anyone.  Even though we knew she was sick and wouldn't be with us, no amount of preparation could have prepared us for the emotions that came with losing our little girl.  I just remember telling Chris that I felt like it was okay for her to go, but I really didn't mean it.  I know that her pawpaw, and great grandparents who are in heaven, and God and Jesus are taking care of her, but I want to know that she's okay.  As selfish as it is I just want her here with us, I wanted to be able to see her smile, watch her grow up, start a family of her own, just hear her say mommy and daddy, and just be able to hear her say I love you too.  As our genetics counselor told us the only thing she ever knew was love, and that's comforting.  I know that someday Chris and I will have more children, or as he says twins, and they will know all about their big sister and how beautiful she is, and that she will always be watching over them.  I just wish we could see our baby, and just knew why her, why did God choose her to come home so soon?  Chloe's days here changed everything, and she is so missed, and loved so so much.  I know it'll get better, and I know in my heart Chris and I will get through this, but its so hard.

Chloe's birth announcement

Wednesday, January 9, 2013

Our guardian Chloe Aria


Chloe Aria Martin

Born: January 8, 2013

Time 8:28 AM 

Weight: 10.4 ounces 

Length: 10 inches 

As we sit here in the hospital room and listen to the rain, I can't help but think how appropriate the weather has been for these past couple days.  We came over to the hospital on the 8th at 5:30 to start the process of the c-section.  They put us in the L&D room, and I think shortly after 6:30 the nurses started the IV and drew blood and everything which made me even more nervous.  It was about 7:45 when they took us back to the OR, did my spinal tap and did the preparation.  I believe the surgery started shortly after 8, which it went well, as Dr Fanous said they had to do a classical incision on my uterus (which means it was a cross incision).  He came in to speak with us today and let us know that the placenta was indeed covering over my cervix, which the sonograms were showing it was low lying and to the right.  So if we tried to dilate and have a natural birth it would of ended in a c-section. 

I was wheeled back into our L&D room after the section at about 9:30, and they brought little Chloe in as well.  I was kind of out of it at first but came to pretty quick, and Chris looked at Chloe first and held her and was telling me she had my nose, and as we say the Hart toes.  A few mins later the nurse came in and brought her for me to hold, and she perfect just how she was.  Even though she was so tiny she had long legs like her daddy, his hands, my nose, and as Chris says my squinty eyes.  The nurse asked if we had any arrangements made for her yet, and Chris had to unfortunately call the funeral home to set up the cremation and her pick up.  As he said that was they hardest phone call he's had to make.  We had Chloe in the room with us for I believe 3-4 hrs, and in that time an amazing lady came in and took some very sweet pictures for us, and we received a large memory box from ABC Ministry which came with a small pink hat and matching pink blanket.  (We brought her a hat and blanket but sadly the hat was way to large for her and the blanket was to big too.)  The memory box has a lot more items in it as well, and the hospital gave us a pillow that has a teddy bear holding a baby angel that says "Even Angels need a place to rest", which our nurse put prints of her tiny feet on and all of her birth information.  Shortly after we finished with the pictures a lady came from the funeral home to pick Chloe up which was probably the hardest part of it all, and she was speaking with us about what will be done and gave us a little more time with Chloe.  Chris picked her up from the little bed and let me hold her again,  we decided to say a little prayer over her and told her how much we loved her, how much she's changed everything for us already, and how we wanted God, her PawPaw and great granny to take great care of her until our time came.  Chris held her one more time and let the lady know she could come back on, and helped wrap her in the blankets, we told her we loved her once again and we sadly had to let her go.  Chris and I cried for a while and just hugged each other, and as I told Chris "we've got this, we are going to get through this, and Chloe is always going to be with us."  

It was about 1:30 when we were taken to our room now.  We've gotten a lot of nice flowers and gifts, and thank you to everyone who's sent them or brought them by to us.  Also for all of our amazing family and friends who have came to see us, y'all are so nice to make the little trip to Odessa, thank you all again! 

 My incision pain hasn't been to bad, and Chris actually was able to help me out of the bed several times today and have walked the hallway.  When Dr Fanous came to speak with us earlier and said he would be by tomorrow around lunch time and we would most likely be going home shortly after that.  We've had very nice nurses helping us, but I think Chris and I are both ready to just be in the comfort of our home and our bed.  Chris has been so amazing through all of this, and has been such a great help.  We realized when he held Chloe, he held his first actual baby (he's always afraid he's going to break them), but she fit just right in daddy's hands and that sweet look of love on his face, made me even more happy that we found each other.  

But I guess I will end this post here and try to get some rest, I will continue to blog if any of you were wondering! 
Thank you again to everyone for their kind words and prayers, it's comforting knowing that so many care and have love for Chloe and us! 


Uploaded from the Photobucket iPhone App
  1. Chloe's tiny foot prints with our wedding bands

Monday, January 7, 2013

Extremely sad day

It's hard to type this blog tonight, as most know our precious Chloe's big heart stopped beating, we think she may have passed between Thursday the 3rd and Friday the 4th.  As i posted previously we went to Dr on the 2nd and we got to hear her heart beating, but on Fri Chris got out our home fetal heart beat machine and tried for about 30 mins to find her, and we weren't able to.  Of course being hopeful we just thought maybe she was turned where we couldn't hear it well, we tried again Sat with no luck there either.  We kind of thought maybe she had passed, but were holding onto the hope that she hadn't yet.  I called this morning and talked to the nurses and we got into one of the high risk Drs at 9:30 this morning.  Which when we got back and started the sonogram Chris and I couldn't see her heart beat like we normally could, and the nurse seemed kind of sad but didn't say anything.  A few mins went by and before the Dr came in the nurse did another scan and we could see she had put the pointer where we could hear the heart beat, and unfortunately we couldn't hear anything, and there was a straight line on the screen, I of course started to tear up cause we've seen so many sonograms in the past couple months that we know pretty much a lot of whats going on without anyone saying.  Shortly after Chris asked if her heart had stopped, and the nurse was kind of quiet for a moment and said unfortunately I couldn't get it, and it appeared she started to tear up as well.  The Dr came in a little while after and was speaking with us, and said well as you know her heart has stopped, which we knew without her saying, it just sucked actually hearing it.  She went on to talk to us about everything, and was extremely kind and said that she could tell that we loved Chloe very much, and that she was lucky to have us as parents.

After we left that office we headed over to Dr Martinez and Dr Fanous' offices to speak with Dr Fanous about the delivery plans.  We also got her measured before we left, and she is def tiny, her head was measuring about 20 wk, and her body is averaging about 18-19 wks, which is what she measured about 7 wks ago.  We are going to go to Odessa Regional Hospital tomorrow morning to have a c-section at 7:30 am. They let us know that we would get prints of Chloe's hands and feet, we have the opportunity to have some pictures of her taken, and we can even have some time with her privately to hold her and everything, we will also have a pastor coming by to give her a blessing, and to pray with us, and I'm sure few other things I'm probably forgetting.

 I just want to say that everyone we have come in contact with at both Dr Martinez, Fanous, and the regional perinatal centers have been so amazing and so kind to us, and have help so much with everything.  The nurse's have been so stellar and the Drs are amazing, I know Dr Martinez, Dr Fanous, and all the nurses don't have to deal with sick baby's like Chloe everyday, but they have been so amazing and helpful to us every step of the way, it makes me so much happier that we have them.

Also on a happier note, we have raised a little over $200 so far with the donations we have received for Chloe's bracelets!  I know we still have some donations coming in, and thank you to everyone who has donated, it makes me very happy that ABC Ministry is going to get so much from all of us.  I know some have asked what the address is to donate and here it is:
ABC Ministry
c/o Diane Eggermeyer
PO Box 65
Midkiff, Tx 79755

I just wanted to thank everyone once again for all of the kind words, and thoughts for us and Chloe, she is our little guardian angel, and I know she will always be with us.  We will keep everyone up to date as things come along.  We love you all!
 
"So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand."
Isaiah 41:10

Saturday, January 5, 2013

Update so far

I know I haven't updated lately, but to be honest nothing has really changed since the last post. We've been to the Dr one other time since the last post, and Chloe's hearts still beating, which we are thankful for. Esp because we were able to bring in the new year with her, even though she wasn't physically with us, knowing that her heart was still beating makes me more grateful for how strong she is.

For those of you who haven't seen on my FB, we received a heart monitor from a friend for the house, and I have a video that I will post at the end of this and you can hear Chloe's big heart just beating away. We also go back to the Drs on the 9th, which we will see Dr Fanous, because Dr Martinez will be out of town. He is the Dr who covers for Martinez. We will also go back and see Dr Martinez on the 14th, then Dr Blanco (the high risk Dr) on the 17th.

Also we got in the bracelets we ordered for those who haven't heard, and so far we have raised $95 for ABC Ministry from the donations received from the bracelets!  I also wanted to say thank you once again to everyone who have donated, and who have been thinking about us and praying.  It really does help to know that others are praying just as much as we are!  I guess I will finish this post here, and I will let everyone know how our next couple appts go, and I will post some pictures below, as well as the heart beat video.

Here is the picture that was suppose to be
with the last entry, tiny 6 month belly
 
 
Photobucket
The bacelets, we did silver which is the awareness color,
and her name in hot pink, and on the inside it says "Isaiah 41:10"
 "So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand."
Photobucket
Daddy giving Chloe her first NYE kiss
 

Here's where we were able to find her heart beat on the heart monitor