My week of hell

I have gone back and forth several times over the last week on when to post about this or if I was even going to.  Partly because I wasn't real sure what to write and secondly i was still probably in a daze. I always thought i remembered certain things about that horrible day in December of last year, but based on what happened Tuesday of last week I was thrown back into that spot and it was just as bad as I remembered.

Last Tuesday I had my 20 week scan.  This to me was my last mental hurdle to get past to believe that I was actually going to have a living baby...at least until the last month kicked in and then i knew the fear and stress would return.  I have never been nervous about these things because I have always had a quick, boring, baby looks great kind of scan with all 4 of my pregnancies.  Even Logan was big and healthy and measured just like his brothers and sister.

Well this one, like everything else in this pregnancy, did not go so well.  I learned I have an anterior placenta, which is why it has taken so long to feel all of my little guys kicks...not good when I am relying on fetal movement to prove to me he is still alive in there. Of course the next thing we see and hear is heart beating and that relieves my initial stress and then not 5 minutes into the u/s she says, "well I have to show you something". On her monitor is Layton's head and she is measuring 2 small circles.  He has bilateral choroid plexus cysts.  Now to me anything on the brain can't be good, but our tech reassures us that 90% of babies have this just most are gone by 20 weeks and the rest by 24-28 weeks. The next thing she points out is a small dilation in his kidneys where the ureter connects the bladder and the kidneys. She does tell me that they are on the high end of normal, but since he has the cysts she has to mention it, but not to worry.  I think she intended for this to relieve some stress, but all it did was cause me to get numb and try real hard not to throw up all over her.

At this point I am done. My husband is no longer looking at the screen and I just want to go back to bed and start all over.  I am trying to comprehend what the hell is going on.  This is my rainbow baby, my light after the storm and hellish nightmare my life has become in the last year. A time for smiles and hope not this. It is not supposed to be like this.  How the hell am I supposed to handle all of this when my heart still aches horribly for Logan, but I find part of that being replaced with the fear I now have for this baby.  I instantly look at my husband and asked why the hell did I put us through this again.  I should have just been happy with the 3 healthy kids at home and the sadness i still have for Logan.  I don't have room in my already broken heart to mourn 2 sons.  I was a mess.

The rest of the scan was a blur.  My poor tech was showing us how "healthy" the rest of him was. She did make a point to point out that his hands and feet looked good and he did not have a cleft palate. Little did I know that the reason she was doing this was to see if my sweet Layton had Trisomy 18, which is a chromosomal defect incompatible with life.  She did spend some time on the heart and showed us the 4 chambers and said everything looked good, but we still had the 2 anomalies to deal with.  When I tried to ask her questions she told me not to panic, but just wait for the doctor to go over everything...that is NEVER a good sign!!!

So, once again I am that pariah in the O.B. office.  Don't want to leave the crying pregnant woman around all the other pregnant women because I might start unnecessary panic around me so i get put directly into the room.  No blood pressure taken, weight, urine nothing!!!! This is 9 months ago all over again.

I am numb waiting for the doctor.  All these questions swirling in my brain because I read WAY too many blogs when I first lost Logan. Submerging myself in other women's misery to let myself know I wasn't alone.  I learned about syndromes, and birth defects, and certain things I never ever wanted to know about, but in reality it is life and I know babies are not always born the way they are supposed to and they die.

Shortly my doctor comes in and the first thing I say to him is why is this happening?  Haven't I had my share...I don't understand what is going on.  He looks at me and says, " i don't know why this is happening to you, but I have to go over the 3 soft markers we found".  3? WTF????  The look on John and my face must have said it all.  I finally said, "she said we only have 2...the cysts and the kidneys" and his reply, was " I don't think she had the heart to tell you anymore".  Now we are pissed.  What's the damn difference at this point.  She knows my history. She has already flattened any hope I have, what good is it to not tell us and let us get knocked down lower than we had already felt at that moment by the doctor.  I HATE surprises!!!!

Well, apparently he also had a bright spot on his heart called an echogenic intracardiac focus (EIF).  All of these "soft" markers by themselves are no big deal and found in normal population, but together can be a warning sign of chromosomal abnormality like Down Syndrome (DS).  My husband and I have always been against any "invasive" testing, but at that point I don't know what to do.  I know the cysts are a sign of T18, the kidneys and heart are sign of DS and I don't know what to think.  All I know is I am scared again that my dream of bringing home Logan's brother is slowly slipping away.

When I had my first appt. in June my doctor agreed it would probably be better for me to NOT to go through the  first and second tri screening.  I know many people who have had false positives and have gone through hell to find out everything is okay at the end. With my anxiety already at a super high level we figured it wouldn't do any good and then when i dealt with the SCH I was happy to NOT have to worry about anything else.

Fast forward to last Tuesday and here I am getting blood drawn, 2 weeks later than they like to, for a quad screen that I never planned on doing.  Now the waiting begins.  I have to wait 2-3 days to hear on blood work, i have to wait for the MFM to call to schedule my Level 2 ultrasound and all I can think about is burying another child.

I literally shook for the next 24 hours.  I couldn't eat, sleep, think, without imagining the worst.  My husband was in tears and I was numb.  Thinking of all the questions I didn't ask and researching every little thing i could find on choroid plexus cysts, renal pyelectasis, and EIF.  This is what happened with Logan.  My husband dealt with it within the first 48 hours and I took care of all the details and later had my complete meltdown.  I hate to say this, but death of a child takes something away from you and you never get it back.  I always thought I had gotten better, but when this happened I realized how bitter, angry, sad, and lack of faith I still have.  I have no reason to think this will turn out right because that was destroyed 9 short months ago.

My husband, God Bless his soul, was the opposite.  He took a positive stand and just left me alone to research the worst.  I got my blood work back on Friday and that did nothing to lift my spirits.  With my age, blood work and soft markers I was staring at a dismal 1:32 odds of Downs.  Now my husband kept telling me that it meant we had a 96% chance of a healthy baby, but that wasn't what I heard.  I head the "1"...so sick of being the "1".

By Saturday the numbness had worn off and we were off to my Level 2 ultrasound.  My anxiety level was off the chart and I literally haven't been able to function since Tuesday.  As we were driving I told John I don't think I can take this anymore.  I don't think I can wait until birth to find out our baby has something wrong with him.  I want to be prepared.  There are so many things I would do different immediately following Logan's death concerning my kids, family, pictures, etc. that I don't want to be caught off guard again.  He said he had been thinking the same way and maybe the amnio would be an option depending on what presented itself.

My tech was great and my doctor was very straight forward and thankfully, which may sound a little morbid, had experienced a loss right after birth with his first child so he understood how hesitant we were to do anything that may harm the baby in terms of amnio.  I also told him straight out that DS wasn't my main concern, but burying another child was.  We would love this baby the way he is, but I need to know the seriousness of what we are dealing with.

The scan went really well and we learned a lot.  First off we only had 1 marker for DS.  The kidneys were normal according to their report they got (GRRRRRR!!!!!) so I was worrying about it for nothing. My O.B. told me he thought it was 5 or 6mm when it was only 4mm and that this is very common in males. The cysts are not markers for DS and should never be considered.  The EIF was definitely there, but is considered benign and has no affect on the heart function whatsoever.

My doctor was very positive with us, but straight up in saying that the only way to know now is through an amnio.  John and I talked about it and decided to go for it.  It was not that bad and I actually felt a thousand times better.  Of course the maternal guilt kicked in about 1:30 am and I was up most of the night worrying about what if I just killed my baby.  My doctor has done over 7,000 amnio's and has had only 2 complications he is aware of. He even did his own wife's amnio, so I knew I was in good hands.

I am 53 hours removed from my amnio and so far so good.  I am still nervous to pick up Luke or do anything strenuous.  He said I would be fine after a few days of rest and I shouldn't have anything to worry about.  My mother was a life saver and stayed the weekend and gave all the kids the love and attention I could not.  I literally laid in bed for a day and a half drinking gallons of water doing my best to keep no pressure on my uterus and stay hydrated.

I took the time to actually watch my Lions win and to finally read The Help, which is a great book by the way.  My nerves were very high because the waiting game has begun again.  Technology is good and bad.  Good because they have tests that speed up results and bad because we see things that cause undue worry.

I was expecting my results tomorrow, but got an unexpected call from my MFM today and heard the most wonderful words I thought I would ever hear...your tests came back negative.  Congrats on a healthy little boy :)  I still haven't absorbed it completely.  I have spent 6 days preparing for a child with special needs or worse.  Trying to figure out what direction my life was going to go.  I was beginning to mourn my last child missing out on a normal life and what this exactly meant for Layton and our future.

Since it took me 6 days to get to this depth of crazy i am thinking it will take at least half of that to get me back to my "normal" level of pregnancy anxiety.  This last week has been the second worst week of my life. I have learned that the "unknown" is scarier for me than the known good or bad.  Through baby loss you are forced to "deal" with the worst and with me not knowing what to deal with I became useless to my family and there is nothing worse than having absolutely NO control over a situation.

I have overcome a huge hurdle, but I know I have a long way to go (17 1/2 weeks). I am going to FORCE myself to enjoy this pregnancy because he is healthy and growing, he has 46 chromosome and kicking me as I type this and he will be here come the end of January.  I am so glad this is my last pregnancy because I don't have it in me anymore.  This boy will be here and I will be more than happy to pass on my maternity clothes and stress to the next momma because I am done.

I am so grateful things have worked out this time around (so far).  It feels good to NOT be the one. Now we just have to keep him from getting all tangled in his cord like his brother.  I am depending on Logan to help look over his brother and get him here safely because my tank is empty...this family NEEDS a fairytale ending!!!