Thursday, January 3, 2013

Dearest Baby Eleven

 Dearest Baby #11,

Tomorrow morning I go to Eugene for a level II ultrasound. Because I will be 45 when I have you, we want to have you looked at closely, to make sure where I should be delivering.

At the beginning of this week I said I wasn't nervous...but as the time to see you approaches, I'm finding myself leaning more and more in that direction. Mostly because it's bringing back memories of when we saw your older sister on ultrasound for the first time, and all the emotions of that day are feeling very familiar right now.

And so we're bringing Lily with us - a gentle reminder to the doctors and technicians, and even ourselves - that the fears associated with "problems" on an ultrasound are very often unfounded. And so often there is beauty and joy in unexpected places...we should have no fear when we are safe in the hands of a loving God. No fear ~ only hope and faith.

So I'm reading again what we went through three and a half years ago on that day. We'll be seeing a different doctor tomorrow, one who I chose specifically because of his demeanor and his outlook for Lily during the final weeks of my pregnancy. But for now, I'm just remembering....



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 Dearest Baby #10,

I prayed for you a bunch this morning..are you feeling it? You were kicking and squirming so much while I was praying. I love those sweet reminders that you are inside my tummy and not "out there" somewhere. Your brothers and sisters love to feel you move. Jackson asks me on a regular basis "Is you baby feeling good??" Some of your siblings still worry about you, since I lost a baby right before you came along. Any time I come back from a regular doctor's visit I have 3 or 4 of them ask me, "Is everything okay? Is your baby doing good?" They pray for you all the time too. It always sounds like this, "I pray that Mommy's baby will be healthy" or something along those lines. You are just "my" baby now...soon I'll have to share you with everyone!

Soooo... now for part 2 of your u/s visit...

After we saw all the awesome pictures of your face, etc. and the sonographer took all the measurements, she left to get the doctor. She said he might want to take another look at you...and that's when I started to sense something was not right. I turned to Daddy and Mackenzie and said, "She spent too long on the heart." Daddy said I always worry about things like that on ultrasounds. I said no, she took a ton of pictures, and kept going back for a closer look and magnifying everything on your heart.


The doctor came in- after what seemed an eternity- and said he would come back in a few minutes to "do the sonogram". I was confused- did he know we just did it? I went in the hallway to ask to use the restroom...I saw my sonographer and asked "Does he know we just did the ultrasound?" She said yes, he just wants to come in and do it himself. More fear in the bathroom...when I went back to the room and laid down on the bed, I was starting to shake a little..Daddy and Kenzie said it was okay, don't be so nervous. The genetic counselor came in and said "So the doctor told you what we saw.." We stared at her blankly...Daddy said no, he hadn't said anything yet...She stared back at us and said "Oh, I thought you knew..." at which point the doctor came in and the counselor said in a flustered voice , "I'm sorry, I thought you had already been in here and told them..." now my legs are shaking and Daddy puts his hand on them and whispers, "Relax". I am trying very hard to be calm, but my dumb legs won't agree.


The doctor tries to make some joke about "advanced maternal age" only having meaning if you're older than your doctor. I ask him if I am older than him, and he laughs and says I'm very kind. He sits down and says "We saw several things that are concerning us, so let's take a look at them" and puts the pictures on the screen. He says let's start with the smaller "problem". He is talking in calm, matter-of-fact tones, but my heart is racing, and I feel like time is standing still.


Why have I felt all morning like I was going to hear something like this? Why when I was brushing my teeth and looking in the mirror, did I have the thought that tonight when I was brushing my teeth, things would be different? Was God preparing me? Or is it my anxious mind, trying to prepare for the worst, even when there are no indicators that anything is wrong? Why have I been praying for my baby's heart this whole pregnancy? Did God lead me to do that, or did I do that with all my babies, and I'm just more conscious of it now?


The doctor shows us the picture of your kidneys, and points out that one is larger than the other. He explains that they are both supposed to be the same size. He explains how kidneys work, and how if this remains this way, it could be a potential problem later on down the line with infection, etc. He says he is not overly concerned with this, as quite often this resolves itself through the pregnancy, and isn't anything to watch anymore.


He says "But let's move on to the bigger concern", and switches the picture to your heart. My heart feels like it is racing faster, and I think for the thousandth time- I hate the feeling of not being in control of my own heart, my own legs...maybe I internalize everything too much, try so hard to stay calm on the outside and talk calmly, and project relaxation- that my body says "FORGET IT!!! You are freaking out, and it's going to come out somewhere!" (Now you know what a neurotic mommy you have:))


The doctor magnifies the picture of your heart and points out the four chambers. He shows how the valves are supposed to function, separating the blood flow on each side of the heart. He explains that the structure of those valves is not looking quite right on the ultrasound. We ask lots of questions, Daddy mostly...Mommy is very quiet, not wanting to ask anything...maybe if I pretend this isn't happening it will all go away? Daddy persists, wanting to know everything- what about the blood flow? Can't you tell if the blood in the heart is flowing right by that other feature the sonographer used? The doctor begins the ultrasound, showing us in "real time", not images, how your heart is functioning, how the valves don't appear to be closing all the way, how they are appearing to form a cross rather than be staggered...He switches the image to show the blood flow pattern- blue on one side, red on the other- but explains that at this stage it is very hard to make out anything definite. He keeps saying "You're going to have to trust me on this"- maybe Daddy is making him feel defensive? He's not trying to- he just wants to know what the doctor sees that is causing him concern.


And baby...get used to it...your Daddy is the eternal optimist, always looking for the silver lining, always seeing the bright side of things, never believing something is bad until he knows. He says it's how he learned to deal with things growing up- Daddy had a lot of ugly things thrown his way from a very early age on...and this is how he learned to survive, by not worrying about things until they really happened, hoping for the best, and shelving scary things in his brain, instead of analyzing them to death. Because maybe they'd never happen anyway, and then you wasted all that time worrying for nothing.


And maybe that's why God put Mama and Daddy together- because Mommy needs some of that optimism, needs to know that worrying doesn't change anything, it just hurts, and that quite often life surprises us in good ways. Maybe I'm calling it the wrong thing- maybe I see it as optimism, but really it is faith. Faith that what might look bad can be turned around- and even if it isn't, God can help you through.



The doctor explains that what he thinks he is looking at is called an atrioventrical canal...more simply put, an "av canal". He says he isn't entirely convinced it is there- he would still give us a 10-15% chance that it isn't there. How do doctors get these percentages? The cynic in me thinks maybe it is like what I tease Daddy about all the time- making up random statistics to prove his point (ex. 98% of people don't think about ....blah, blah, blah....really? How do you know it's not 94%? or 46.7%??) Get used to it baby- Mommy is a born Mocker.


So here is what a "normal" heart looks like, and what one with an av canal looks like...




See the purple blood? That's not supposed to be there...It is supposed to be either red or blue. Daddy asks what happened before we had ultrasounds? The doctor explains that babies born with this defect used to be called "blue babies" and were rushed to surgery to find out what was wrong. Now we can see things ahead of time, and know if a baby needs surgery right away, or if it can be postponed until later, like before the baby is 6 months old.

Wait a minute...surgery? Open heart surgery? On my little baby? Why is Daddy sitting there so calmly, and even Mackenzie just smiles at me reassuringly as this possibility of my baby being cut open is discussed? Is everyone staying calm for me? My legs are shaking visibly again now, and the sweet genetic counselor pats them and smiles sympathetically at me. I don't like this ugly feeling of panic that just washed over me, the same feeling I've had when one of my children has gotten "lost" for a split second in a crowded place. I start praying inwardly- God, give me strength, and help me to just be "normal" and not a silly, shaking, nervous freak. Kenzie is here, and if I start crying or acting worried, it will scare her.

The doctor says he wants to see us back in 3 weeks- because the heart will have developed so much more by then, that we will get a much clearer picture of what is going on. He says we will do an echo cardiogram- every valve, chamber, etc. of the heart will be hugely magnified so we can see things very closely.

He says what we see will show us what needs to be monitored- if everything looks fine, no monitoring. If there is a defect (he says again he is pretty sure he knows what he is looking at) we will monitor it through my pregnancy. If it is minor, I can deliver in Corvallis- something more severe would require me to deliver at Doernbecher's Children's Hospital in Portland. Again, the timing of surgery would depend on the severity of the defect.

I finally ask him what is floating around my brain- is this a marker for Down syndrome? He blinks and nods his head and says yes, any time there is a heart problem, especially av canal, that is a strong marker. I ask- and the kidneys? He looks me in the eye, nods, and says yes, that is a marker too. I just stare at him, and he stares back and pats my leg and says "I know, it's not easy to hear." ...or something like that.

At this point he starts talking about amnios, and how this would be a very good option for finding out "for sure" what our baby has. But he's not talking about the heart anymore; he's talking about chromosomal abnormalities. He mentions Trisomy 21 (Down syndrome) and 13 and 18. Explains very matter-of-factly how 13 and 18 are lethal- a baby with those cannot live..and the amnio can be done at 33-34 weeks...etc.etc..Daddy starts asking questions about amnios and what about doing one now, and the doctor says even though the risk is low- one in a 1,000- that the water bag will rupture and pre-term labor will start- they still like to do an amnio later...because a 26 week old baby -especially with a heart defect- would not do very well being born prematurely. Whereas a 33-34 week old baby has a much better chance.

STOP. Does anybody realize we're discussing MY body here??? I turn to Daddy, and say- maybe a little too vehemently- Do you know what an amnio IS??? He starts to say yes, and I say "They stick a NEEDLE in your stomach to draw out fluid!!" Daddy says he knows, and I say, well I am NOT having that done! Everyone reassures me this is my choice, we're just talking about our options. I tell the doctor- I don't care what my baby is, we are going to love it, and be just fine, and if you're telling me an amnio is just so I can be "prepared"- I don't want one. If you're saying we need to do this for the health of my baby- meaning what is going on with the heart, and how we need to proceed- I'll do it. But not for the sake of "being prepared."

The doctor-kindly- says he disagrees. He says he's been doing this for many, many years, and he's not just looking at the health of the baby, he is looking at everybody's health- mine, Daddy's, big sister's- he looks at Mackenzie- and he has found families do much better when they have time to prepare for a baby with chromosomal defects...find support groups, research, know what to expect, etc. He brings up the Trisomy 13 and 18 again- both lethal- but in the background the genetic counselor is looking at me shaking her head. She says "Your odds for that are still way down here" and holds her hand below her waist. Always odds. This is insane. What in the world do odds mean to me right now???

I ask the doctor- aren't we going to know about 13 or 18 on the next ultrasound? I know from reading stories about these babies, that they do not grow in the womb, and it is very apparent what they have. Whereas downs is harder to pinpoint. The doctor says well, yes- we will know in 3 weeks because the growth would totally fall off. How nice. As if you are a carrot, or tomato, or something other than my precious, unique, living BABY inside of me, everything I've been hoping and praying for since before you were born. But I know that these doctors deal with this kind of thing every day- that's what they do. This doctor sees problems every day- he's the guy people see after a problem is seen on a regular ultrasound. So I try not to see him as the enemy- but right now he feels like it. I know he has to be matter-of-fact because he can't get involved emotionally with every patient. But I don't like his professionalism. And I don't like this quiet, dark room with the magnified picture of your heart on the screen, I want to get out of here where Daddy and I can talk and pray, and think, and talk about baby names, and show people your sweet, beautiful face, that picture that looks so much like your brother and sisters- how could you be anything other than perfect??

When we do get to the car, I start crying- all my emotions and fears come tumbling out, and poor Daddy and Kenzie hear how I am NOT having one of those stupid amnios!!!! And how I would rather have a beautiful baby -maybe with problems-placed in my arms and know that I could never ever love it less than any of my other children- than have a needle stuck in my stomach and risk going into labor, just so for 7 weeks I can "prepare" myself....PREPARE?? Like what? Read stories on the Internet about children I don't know, and won't have that bond with? Join some support group of people I don't know, who don't know me, and talk about what's going to happen, how I'm going to feel, etc? What I could NOT handle is having that amnio done, and going into labor, and knowing I put my baby at risk just so I could know 7 weeks ahead of time what I was facing. No thanks.

We drove home and talked as we drove...Daddy reassuring me that we don't even know yet IF there is anything wrong...Kenzie very quiet in the back. I made several phone calls, decided we didn't want to tell your little brothers and sisters anything until we know for sure. Asked friends for prayer...stared over and over again at your angelic face. Calmed down- God is going to help me through this journey. Maybe it's a short one, and in 3 weeks we'll find out there was nothing to be concerned about in the first place. Maybe it's a little longer- maybe you'll need surgery and then our lives will go on as before, this just a bump in the road, albeit a big bump. And maybe this is a life-long journey, one that will bring new changes, and challenges, and things we never knew we'd go through...But either way, God is faithful and He knows the road. I know He is going to give me strength for whatever we go through. I feel it already.

Baby, whoever you are, know this. You are loved. You are cherished, and longed for, and prayed for, and treasured, and so so loved. I don't care what you have, how many chromosomes, how many defects, Mommy and Daddy will take care of you and do all that we can to show you how very loved you are.

I will write more tomorrow, sweetie.

Always yours,

Mama oxoxoxo



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I wish I could go back to that day - and show myself what today looks like.



Because it looks like this...





 No fear ~ only joy unspeakable :)

All my love forever,

Mama oxoxox

19 comments:

Mary said...

I'm almost always in tears after reading your posts. Just beautiful! Thank you for sharing Lily and your story.

Jennifer said...

Hope all is well!!! Next time you're heading down here, let me know - we'll meet you guys for lunch!!!! :)

Jenn said...

Love your courage and your strength. Little miss is perfect.

Tara said...

Hugs, Patti! I remember well my ultrasound for KJ after having Eon. I was a wreck! I wasn't at all worried about markers for Ds, it was everything else that freaked me out. But it was good and there was peace. Praying the same for you!
Love you!

Maria said...

Oh, Patti, such a amazing post.
Lily is such a beautiful little angel. I am praying for you, that everything goes smoothly for you tomorrow. I know God will carry you through. Wishing you & your family a wonderful, happy, healthy New Year.
Much love,
Maria

cathy said...

xoxo

cathy

patsy said...

Beautiful post patti...and that picture of lily, oh. My. Heart. Cutest ever :). And I can't wait till we get to 'meet' baby 11 :)

cara said...

Thank you for sharing Patti! Beautiful post. That picture of Lily at the end is breathtaking!!

I had no idea with Benji. They didn't pick up on anything at the ultrasound. And he did end up having a heart defect. But praise the Lord he has not needed surgery, and He closed it after prayer over him at church. I have often wondered how I would have thought about everything and responded if I had known so much more.

I will be praying for this ultrasound you have now!!! Much love!

Amy said...

Brought tears to my eyes remembering the diagnosis of my daughter with her heart problem. Children are so wonderful in that, it's never as bad as you think it is before you meet them, because you love them so much and that love is worth everything. If only we did have the ability to go back and show ourselves the future!

Michelle said...

Hi... I too have an U/S today maybe at the same office as you.. I too have a beautiful daughter named Lily..shes 4... she is perfectly normal but
in Sept of 2011 her baby brother was stillborn at 32 weeks due to trisomy 18.. we found ot at his 19 week scan that something was wrong but
didn't do any testing until after he was born... this is.my first Dr appt this pregnancy...I am 13 weeks... I have been waiting just to.avoid
stress...since Lily I have had 3 miscarriages and my boy and so going to the OB'S. office is.something ive come to avoid. I'm nervous
about today but trying to.stay.calm. I too am a Christian... somehow I stumbled into your blog
today...I'm typing on a kindle which is challenging..parden. the typos ...

I pray we both receive good news today!

Would love for our Lily's to meet:)

Michelle

Mrs. K said...

Dearest Baby #11, Grammi has no fear, only Faith and Hope...oh and a Patti too. Inside family joke. Seriously, I have no fear because I have my belief in God our Father, Jesus His son and in the Holy Spirit. God never gives us what we cannot handle, He will be there to lend a helping hand. You and Mommy and Daddy and your siblings will be fine because of their belief in God. You will be another "perfect" human being.

Tommie said...

This is such a beautiful post. Your Lily is such a sweet, spirited, loved little girl.

My second pregnancy occurred when I was 35. I was 36 at delivery. I was considered 'advanced maternal age' at that point. I was given the triple screen test. It came back with a high risk for Down Syndrome.

We were scheduled for a level II ultrasound at that point but we had to wait two weeks for the appointment. I refused to even discuss 'options' with my doctor and my husband until after that ultrasound. My biggest fear was hearing that my husband favored a different 'option' than I would want. I didn't want to hear those words come out of him, I didn't care that they were there, unsaid, between us, as long as he didn't say them, I could pretend they weren't there.

The level II ultrasound took place when I was 22 weeks. I measured 20 weeks.

But the doctor didn't see any soft markers for any syndromes at all. In fact, he told us that our daughter (we found she was a girl at that appointment) had a beautiful brain, a perfect heart, lovely kidneys.

We found out when she was two years old that she does have a very rare chromosomal disorder. She has 5p- syndrome (Cri du Chat.) But she's amazing and wonderful and just as beautiful as your sweet Lily and I can't imagine life without her.

Like you, I wish I could go back and take away those two weeks of worry and show myself life with my lifely six year old, the one who demanded that I braid her hair this morning because she's the girliest girl of any girl born like, ever.

I can't wait to hear how perfectly perfect baby 11 is, no matter what the ultrasound shows.

Amanda said...

We did not know of our daughter's Down Syndrome diagnosis before birth. I was riveted reading your story on what it was like to find out BEFORE delivery. And then I came to that last picture....and lost it. You are absolutely right - pure, unspeakable, JOY! What I would give to go back to those first few days/weeks and tell myself to "quit crying and congratulations! - you have just been handed the biggest blessing you could ever imagine!" Thank you for this post.

goldenleaves said...

I love that you're bringing Lily with you! Prayers for a healthy baby #11, regardless of how many chromosomes your sweet one has. Can't wait for your update!

Rochelle said...

Praying that the U/S went smoothly today and that you have another healthy and beautiful baby join your family soon.

Kelly Marin said...

Amen And Amen, the way God has used you to impact so many people and orphans around the world is incredible, God knew what he was doing when he chose you! I seriously feel like I fall so short in doing what God is calling me to do

Michelle said...

Patti.....It was so amazing meeting yesterday like we did...thank you so much for praying for us....my appointment went better than I dreamed.... it appears that I have a perfect baby (girl) growing in there....I feel over the moon blessed beyond measure....I am so glad yours went well too...Praise God!!!!! I never could find an email from you...not sure how to get in touch without leaving personal info in this public place...maybe try again..
Michelle
P.S. Your Lily is so so adorable!

Julia McAllister said...

<3

Jane@flightplatformliving said...

a truly amazing post my friend, from somebody else who has also lived through the shock and grieving to come out the other side into sunshine it effected me deeply to read your journey as well. love you and your family xxx