Never mind

Forget what I said about progress being made. 

Every time we go to another appointment, he goes deeper and deeper into shut down mode, even though he just told me that he has accepted what's happening. 

We had a good appointment with the perinatal doctor yesterday. Peanut is growing well and everything is checking out fine besides the already known heart issue. 

I feel like I'm not allowed to be excited. I have no one to share my excitement with. I even hid the side profile pictures we got yesterday. I don't know if I've ever felt so alone. 

I'm finding myself putting up a wall between me and Hubby. 

I'm dreading today's appointment with the pediatric cardiologist because he's just going to fall deeper. 

I think I need to accept that I will be handling this alone...again. 

I want to cry. 

Sorting it all out

Oh, what a time we have been having.  This has been such an emotionally trying experience. I've been writing and editing and re-writing this for over a week because I still don't know what to say or where to start.

I've grown to strongly dislike the saying, "We don't care what we're having, as long as it's healthy!"  Who actually says that and is concerned about the baby being sick?  I think it's just someone's way of saying they don't want to admit they have a preference (though I think it may be a true statement for those who have experienced losses or infertility or medical issues previously...which is not the majority, I hope).  I was someone who said that and I even said it this time, not even thinking about the possibility that something could actually be wrong.  I did go into the two routine ultrasounds with anxiety and I remember being anxious the first time the doctor tried to find the heartbeat with the doppler.  I will never say that again.

I am happy to report that at least now Hubby and I seem to be on the same page regarding continuing with this pregnancy, but we aren't quite seeing eye-to-eye yet on what we should do after he is born.  I think progress is definitely being made and I feel kind of bad trying to sway him to do what I want, but gosh, I'm so sure it's the right thing to do.

While he was in a state of hopelessness and only being able to imagine terminating, I offered the idea of adoption.  We met with a genetic counselor last week and she said that there is a 5 year waiting list of people who want to adopt a child with special needs like ours, which is awesome, but it's not what I want to do and I don't feel it is specifically our obligation to fulfill those peoples' desires.  Right now if feel that if I agree to it, it will be just to make him happy or feel better, not because I think it's best for Peanut or because we're incapable of raising this child.

Every time we had one of our emotional discussions I could feel him moving around and poking at me...my heart would break and I would start to cry.  Now we can have small discussions about it without becoming angry with one another.  Hubby still seems to shut down and he has admitted that he is dealing with depression, but he doesn't shut down for days at a time anymore.  During our last "argument", he said he didn't want to hear my opinions and that I am ignorant for only looking for the positive.  He wanted facts. Well, I'm sick of facts.  All of his facts are negative and these facts are not the rule.  Every baby with Down Syndrome is not a text book case.  There are some that are worse off, there are some who are affected very mildly.  Heck, I even saw a video of the guy who has it and owns a restaurant and other than some tell-tale physical features (which didn't even seem as evident as I have seen before), I don't think I would have even know he had a disability if I saw him in person.

Screw the facts.  I think we have a certain amount of control over making Peanut the exception.

Last night, for the first time ever, we laid in bed spooning with Hubby's hand on my belly.  I fell asleep with that warmth and the sensation of Peanut rolling around and practicing his karate skills.

Progress.

I really think attitude is everything at this point.  If he/we/I decide that he isn't going to have a life or hopes and dreams or succeed in anything, then that is what is going to happen.  If we decide that he can't do anything because he's too handicapped, then he won't.  If we decide that we're going to make the best of it and do the best we can to help him succeed and make sure he meets his full potential, then I strongly believe he will.

I'm not saying any of this to make Hubby look bad.  I don't think either of us are wrong in our thoughts.  This has been a huge emotional blow and a lot to take in in a short amount of time.  This is still a new discovery in the grand scheme of things and there is still a lot that we don't yet know.

I try to remember that this is a grieving process to some extent.  I think when someone finds out they are pregnant, they mentally decided what they the baby will look like, his/her personality, intelligence, favorite things...this mental baby is molded and changed based on what is learned throughout the pregnancy and officially when it is born.  As bad as this sounds, we lost that mental baby when we got our news.  Now we have a different baby, who I love just as much as the other one, he just won't have the typical life we're used to.  And that's okay. [Note: I'm not comparing this to an actual loss, as I can't even imagine how that would feel.  It was bad enough when the perinatal doctor made me think that was going to be the end result no matter what.]

We don't know how severe his condition will be.  We don't know what kind of Down Syndrome he has.  We don't know what other health problems he will have.  We don't know why this is happening to us.

We know that per the genetic counselor, this was a random event and neither of us had any risk factors going in.  We know that I can carry on with this pregnancy as if there is nothing wrong because nothing will change until the baby is here.  We know that he will have to have surgery when he is 4-6 months old.  We know that he is growing and other than his heart problem, he is healthy otherwise right now. We know that this has been hard on our marriage.  I am confident that God has given us this baby for a reason (we just don't know what that is yet) and that He will provide.  We know that despite all this, Peanut is still half me and half Hubby.  We are fairly certain that we can handle the financial responsibility.

To throw a wrench in the works, he admitted last week that he would probably want to try for another one after this.  Imagine my shock with that suggestion.  I am officially putting that thought on hold!

I'm saying all of this based on assuming that we are absolutely certain that Peanut has Down Syndrome.  I don't think it would be any other way.  The genetic counselor said that she has personally never seen a high risk baby come back without it, but it is still possible.  I'm not relying on that less than 1%.

Well this was a mish-mash of thoughts.  There are more, but I can rant about them another day.

At a loss

99% chance it is Downs Syndrome. 

Hubby is angry. 

Peanut is reminding me he is there. 

I am heartbroken. 

Please keep praying for us. 

When it rains, it pours.

So...

I don't even know where to start.  My brain and heart are overloaded with everything that has happened in the last 48 hours.

My tuxedo kitty was put to sleep Monday night.  He got very sick the night of my birthday.  He got so dizzy and weak that he couldn't walk or stand, wouldn't respond to being cuddled or provoked, starting vomiting foamy saliva or bile, panting and gasping for air, no longer eating or drinking.  We took him to the vet Monday after work and she said that he had a very bad heart murmur.  After talking to her a bit, I realized that the little spells of vomiting and lethargy that he would bounce back from (though each time they happened they got a little worse...maybe 3 spells total?) were just part of the downhill spiral.  Without tests she seemed certain that he had heart disease, but didn't know the cause.  She said that he was suffering a lot and even if he bounced back from this episode, the next one would be worse and possibly his last.

So I made the heart-breaking decision to let my sweet fur baby go.  I feel like I killed my cat, but I couldn't stand the thought that he was feeling so miserable and nothing could help him.  I feel terrible that I couldn't bear it and watch them put him to sleep and that I didn't want to take his body home and bury him or keep his ashes.  We opted to do a mass cremation and his ashes will be spread at an orchard.  The vet is going to send me clay impressions of his paw prints.  Even while writing this, my heart is breaking all over again.  I'm so sorry, Caesar.

That night was up there as one of the worst moments of my life and I thought that the next day would have to be better, but it wasn't.

I worked for a couple of hours on Tuesday and then headed with Hubby to the appointment with the perinatologist.  The ultrasound tech told us that she did think there was a problem with Peanut's heart, but the doctor would be in to take a look herself and talk to us about it.

The doctor came in and took a look and said that there is a problem, and I would need to see a pediatric cardiologist and have a fetal echocardiogram done to get more information.  She also asked me about genetic screening, as certain heart defects can be caused by chromosomal abnormalities.  She said that if I get the testing done, then I may change my mind about the pregnancy.

I couldn't speak because I think I stopped breathing, so she kept talking and made it sound like with these heart conditions and the other possible complications if it was caused by a bigger problem, the baby was going to die, whether it be before, during, or after birth.

I controlled my tears and the pain that was manifesting in my chest enough to tell her that I would not change my mind about the pregnancy, regardless of the test results, but if it meant that we could decide the appropriate treatment for the baby, I would do it.

I chose the blood test at the risk of the 1% chance of inaccuracy because I'm not risking losing him with an amniocentesis.  I had to decide this without Hubby because I think he had emotionally checked out by that point.

They drew my blood in the office and I was so sick of being wished a happy 4th and a good day that I wanted to run out of there.  I hate that I have to go back in a month because I think the doctor was too insensitive and was possibly trying to scare me into getting the genetic testing done.

Test results come back in 2 weeks.

I think it's a God thing that we were able to get a same-day appointment with the pediatric cardiologist.  It ended up making their office a little crazy because somehow the new patient who originally had our appointment slot was deleted.  We heard the office people going back and forth and checking the program history and no one had deleted that appointment.  So not only did we show up (after frantic calls to my OB for a referral for my secondary insurance), but the original patient did, too.

The doctor who did the echo-cardiogram was much nicer than the last one I had seen.  The test took about 45 minutes and every time I felt the baby kick or saw him move on the screen, I had to choke back a sob.

I can't wrap my head around how he can be so active and strong in there, but still have such a seemingly serious problem (or even more than we know right now).  I feel like if he is sick somehow...I can't explain it.  The other patient who came in at the same time we did was a newborn.  The mom left him in his stroller while she messed with her phone.  I watched him squirming and wimpering in his carrier and it made me long to hold my own.

Before she shut off the imaging machine, the doctor explained the problem using live images, then we were taken to another room so we could talk some more.  I drew a picture of something similar to what she drew because it helped it make sense.

Peanut has an AV canal defect.  This kind of defect is common with Down's Syndrome.  That is why I got the genetic test done.  If he has Down's, there are other medical issues we will have to deal with along with the heart defect.

Nearly all of Peanut's upper septum is missing and a small portion of the lower is missing.  The doctor said that the middle portion of his heart is carved out.  The left and right chambers aren't separated as they should be and the valves between the upper and lower chambers are missing.  The oxygenated and non-oxygenated blood mixes together and will eventually cause the lungs to be overwhelmed by all the blood that is flowing through the pulmonary artery.

She said there are good things in all of this.  She said that because most of the bottom septum is there and the left and right sides of the bottom are similar in size, this is a simple av canal defect and it is fixable.  She said that when he is 4-6 months old he will have heart surgery to fix it.  She said that the arteries and aorta that come out of the heart are of normal size right now and they won't need surgery.  However, one could narrow if the blood favors a certain side of the heart and then it would need attention.  She said that depending on the thickness of the tissue in there, only one surgery may be needed.  She said that it is good that I already have part of my birthing plan in place (the c-section part).

She said this isn't my fault.  It didn't happen because I forgot to take my prenatal vitamin or I didn't drink that extra glass of water or I didn't exercise, etc.  I don't need to take any extra precautions and I can continue this pregnancy just as I did the other two.

I'm relieved because I don't have to feel like my unborn child is going to die at any time.  I still feel like I have some kind of responsibility for it happening because I'm the one who has been carrying him.  This 2 weeks waiting on the test results is going to be difficult.  

Hubby is afraid our marriage is too new to withstand this kind of stress.  I told him that if he's going to keep withdrawing into himself, I don't know if I have the emotional stamina to try and keep him afloat while dealing with everything else.  He isn't the only one affected by this.  We're in it together.  He isn't dealing with it alone.  Life doesn't stop because we got some news that we don't like.  There are 3 other children and 2 fuzzy ones who still need us despite all this and right now we really need each other...or at least I really need him.  

We had a pretty horrible discussion on the way home from work today. He said just wanted to share his feelings and get them out in the open. I wish I could have played back everything he said because it broke my heart. He in turn got upset because I got hurt and I don't  feel the same way he does.  I now not only am afraid for Peanut, but also for us and our relationship. 

We're getting a lot of well-wishes and prayers from people.  A rather vague e-mail went out on the church prayer chain and my mom told my brothers and dad and I put a small non-descript post on f@c3b00k, but anyone who doesn't read here or didn't get the e-mail probably think it just has to do with the loss of my cat.

I had someone else texting me without knowing all the details and I think she was trying to cheer me up, but all it did was make me feel like she was downplaying the situation.

Some may think it's not a big deal because it's fixable or it could be worse, but no parent wants their child to hurt or be ill.  No one likes the unknown.  No one likes to feel helpless or like it happened because you did or didn't do something.

I am no exception.  Yesterday's news was devastating.  The last 48 hours have been a massive emotional rollercoaster and have royally sucked.

Hang in there, Peanut.  I love you and I'm trying as much as I can to protect you.