MRI results

As some may have seen on Chris or my Facebook, our Chloe has "severe atypical primitive holoprosencephaly" which is similar to hydranencephaly which we originally thought it could be. But we remember that Jamie the genetic counselor said it could be holoprosencephaly. 

Dr. Twickler was very nice and helpful, she showed us the MRI images and gave us a cd of them as well, as she had shown on an image Chloe's brain didn't form properly like we thought, and it appears that there is just primitive tissue in her skull that has fluid in it, and at the back possibly some cerebellum tissue as well. She stated what we had an idea of in that Chloe may not make it to deliver, or be able to live much after birth. She actually said what Dr Bruner said when she described this happening as a lighting strike. She let us know that for future pregnancies there is a very low chance of it happening again, unfortunately there's no cure, or reason why this happens and as she said there was nothing we did to cause this. She also said the images appear that Chloe's limbs are already being effected by this because her legs are in a locked and curved position and don't appear to be moving much. Her legs are like that because there's not very many impulses from the brain stem to make them move, and unfortunately all of her movements are just reflexive movements, Chloe's not aware of anything she's doing as it's been put. 

It's hard to still hear bad news, but we knew there was a very high chance we wouldn't receive good news. I think as Dr Martinez put it if you tell a woman what could happen she'll know what to do. We'll go back to our high risk Drs on Dec 6th to discuss the MRI results and I guess where we'll go from here, we'll also see Dr Martinez some time this week as well. I'll be sure to post another blog once we see them as well. Thank you to everyone's nice words and prayers we really appreciate all of them! 

Nervous

We go to the MRI appt tomorrow at UT Southwestern Medical Center in Dallas, and needless to say today has def been nerve racking.  From what we understand we will know exactly what Chloe has, and possible information for future pregnancies.  We're def praying and hoping for the best, but we are prepared for anything at this point.  Once we know what is going on I will be doing another post and explain it all the best I can of what we find out.  We'll go back to see Dr. Martinez once we're back, and see Dr. Blanco on Dec 6th, I'm guessing to just discuss everything that we will learn, I'm kind of hoping we will receive Chloe's bear then (once we do receive it I will post a picture).  Wish us luck, and please keep praying, they def help us, and mean the world to us.  Much love to everyone!

Anxious

Well I haven't posted in a few weeks, and figured I should post. These past few weeks/month have been pretty hectic and surreal for us, and has def been draining. Its hard to believe that Thanksgiving is already 3 days away, it seems like November just started, but then again we have been anticipating Drs visits to get here also.

Speaking of Drs, we will fly out on Wed the 28th, have the MRI on the 29th, then fly home on the 30th. From what Jamie has said once the MRI is done we will speak with Dr Diane Twickler (shes the one doing the MRI) and she will tell us everything that it shows. Chris and I were thinking that once we know what is going on with Chloe, we are going to get some silicone bracelets made with her name on them. Once we know for sure I'll let everyone know if anyone would like one, we might also do them for donations, and send all the proceeds to either the ABC Ministries (who is making her bear) or to a foundation of the disorder she has (like Hydranencephaly if it's that). I feel like one of the harder parts of our situation is that we've been so excited to see Chloe and have her in our lives for the past 5 months, and now we know that there is a huge possibility that she won't be here physically with us. We're already so attached to her, and love her it's hard to think that she is going to be our guardian angel one day. 

Also I just wanted everyone to know that they can talk to Chris or I, it's gotten much easier to speak about everything, sometime I know I get choked up at some points, but what we're trying to let everyone know is that we're not made of glass. I know I may of came off a little rude in the last post, but don't let that stop you from texting us, or asking a sincere question when you see us. 

MRI/ rant

Sorry I haven't posted sooner, I've been trying to get some work for school done before we go to Dallas.  Jamie actually called on Monday the 5th and let us know that Chloe's MRI is set up for Nov 29th at the UT Southwestern Medical Center hospital.  There we'll have the MRI done and Dr. Diane Twickler, who is a renown fetal MRI Dr will tend to us, and read us the results shortly after its done.  This will be able to give us a clear diagnosis of what our little Chloe has, and possible tell us more for the future, and future pregnancies as well.  We'll see Dr. Martinez once we're back into town, and then we will see Dr. Blanco, Jamie, and their staff on Dec 6th. Until then keep praying for our Chloe, and our strength to get through whatever life has in store for us, and for understanding.

On a side note I need to get some frustration towards some people who seem to "not understand" whats going on.  First the chromosome test and infection test both came back fine, which is great because we know whatever may of happened in Chloe's development was not genetic, or an infection.  That being said just because those test came back fine did not mean that our Chloe was alright, we still knew that the sonograms were showing a problem, which I had told everyone when we got the news on the tests being fine.  Also yes I understand that the Dr's got her gender wrong, but that did not change that fact that we still knew the sonograms were showing a problem with her brain.  Secondly if you don't understand what something means in a text Chris or I send to you, do me a favor and don't question what we've told you, if we knew what caused Chloe's problem we would tell you!  But unfortunately we are all in the dark about what caused what we believe her brain not to develop properly, as the Dr's said, and as I had stated to many people, and on this blog, THEY DON'T KNOW WHAT CAUSES THIS.  Obviously our Chloe was to beautiful to come into this world, and if only our love and prayers could make her healthy, she would.  It may sound a little harsh how I am putting some of this, but some need to understand that there was a problem from when Chloe started to develop that was out of our control, and Chris and I understand that there is a very high chance that she won't be able to physically be here with us.  We still pray for her everyday, and we love her unconditionally, but we know that we have to prepare ourselves for the day that she becomes our guardian angel.  These past few weeks have been mentally, and physically draining for us, and I could never imagine us ever going through this, but sadly we are.  I know some of you have an attachment if you will to Chloe already, but before you go talking and asking us questions, imagine how it would feel if you were in this situation with your child, I'm sure you would be just as frustrated when someone does that.  Now not saying that all of the questions that have been asked to us have frustrated us, because they haven't, just the occasional one that has been explained, and its almost like those people are just hearing what they want to hear.   This will always be with us no matter the outcome, and I know we will be awesome parents, whether it's in 5 months, or some time from now.  I know in my heart that all this happened for a reason, what that is we don't know yet, but I know that we will always going to love Chloe with all of our hearts no matter what, and this situation is going to make Chris and I stronger people. 

We appreciate everyone's love and nice words, and prayers that we have received, y'all will never know how much they all truly mean to us.  When I get those texts from dear friends that say "I just wanted to see how you are doing", or the ones that say "if Chris and you need anything let us know", and the ones that simply say "I'm sorry, and we're praying for you" help tremendously and you will never know how grateful I am to all of our amazing friends for those.  I may of sounded rude or harsh in this blog post, but I needed to say how I've been feeling, some people know how it feels to be in a situation like this, and when they message me, or text me and say that they can relate to all of the emotions that we've had, it is comforting knowing that what we are feeling isn't bad.  So thank you to everyone who has been here for us through this difficult time, we appreciate and are thankful for you all.  And don't let this stop you from texting me or asking questions about things, just some need to think before they text certain things.

Chloe Aria

Well the Dr was wrong on the sonogram about the gender of our baby, the chromosome test came back and we are actually having a little girl, her name is Chloe Aria. Chloe means 'blooming' and Aria means 'melody', so if you think about it she is our blooming melody.  Honestly I love our child no matter if we were having a Lucas or a Chloe!

On to the news we received today, we saw Dr Bruener, who works in the same office with Blanco, and today we discovered our Chloe's brain did not develop and she only has a brain stem, and the Dr's have no idea how much longer she will live. If she lives till birth, and is born she could be a still born, or if she is alive she will not be able to do anything and be in a permanent vegetative state, and there is a high chance she will not make it past a month of life. They believe she has a condition called 'Hydranencephaly' which is a rare condition that effects about 1 in 200,000 births in the U.S. or there's a possibility she has another rare condition called 'Holoprosencephaly' which effects about 1 in 5,000-10,000 births. Both conditions are very similar, and just with the sonograms they are unable to be 100% sure what is going on.  We are going to be sent to Dallas for a fetal MRI to give us a better diagnosis of what she has within the next couple of weeks. Sadly there is no known cure, or reason why this happens, or what causes it, as the Dr said this is like a 'lighting strike'.  Also our chromosome tests all came back fine, and also the infection test all came back negative, which was a plus of the visit.  The genetic counselor spoke with us as well, and she was very helpful, she told us about a perinatal hospice care that is available, and also gave us some website with support groups of families who have went through this, she also informed us of an organization called ABC Ministry (Angel Baby Creations Ministry in Midkiff and St Lawrence, TX) who takes a recording of the baby's heart beat, puts it into a teddy bear, and monograms the baby's name on the front in a heart.  We decided to go ahead and do the recording and send off for a bear, because I know that there is a chance that we could go to any one of these visits and not be able to hear our Chloe's heart beat again.

It's been a long day, and hearing more bad news hurts, but I believe Chris and I are in a better place to hear it all and take it in this time, because sadly its not that much of a shock for bad news this time around.  We understand that we may be delivering our little Angel much sooner then we thought, and that is tough to comprehend, but we both understand that she will be in heaven watching over us, and her future siblings, and she'll get to meet her PawPaw, her many great grandparent's, and many other relatives that are in heaven as well, which helps.  We won't go back to the Dr's until Dec 6th, which hopefully by then we will have already been to Dallas for the MRI and have the results.

Good news

The genetics counselor Jamie called me while I was at work today and said that she had some good news for us. They got my chromosomal test results back earlier then thought and she thought we could use the good news. Said the chromosomes all came back fine! Even though we aren't in the full clear yet, we know that our baby doesn't have anything genetic. Now we will go on with more test of course so we can try to determine what could be going on, but it has def been good to hear good news since what we've got lately has been not been the best! Please everyone keep praying for us and our amazingly strong child, we appreciate them all!