Friday, October 16, 2009
Thursday, October 15, 2009
lining up. A tiny hole would not mean a problem right now. The sonographer explained that your heart functions differently in the womb, than when you are in the real world, breathing in oxygen. In the womb the pressure of the blood flow in the chambers of the heart is 1 to 1, meaning equal pressure. After birth, the pressure changes to 2 to 1...so even a tiny hole under that pressure would allow blood to be forced through. (remember in a previous post the diagrams showed how blood flowing into and out of the heart should be separate.)
Soooo....the question is- is there a canal there, and if so, how big is it?
The doctor told us he would like us to come back on November 4th. There is a heart specialist from OHSU in Portland named Mary Rice (I like her already:)) and her husband is a sonographer. They are the best specialists in the area, very experienced in diagnosing these type of defects, and they will be able to tell us what exactly is going on. They only go to Eugene once a month, so that's why we have to wait.
We asked the doctor many questions about surgery. My main concern has been how soon the surgery might be. Of course, I am hoping you will not need ANY surgery- but if you do have to have it, I would rather not have you delivered and then whisked off to open heart surgery! The doctor said given what he is seeing today, that does not look like a possibility. He is not seeing a major defect that would be life threatening after you are born. Thank God!!
He said if there is a defect, we will most likely be able to wait until you are 6 months old for surgery. AND there are some people who have a very tiny hole that does not present problems, that never requires surgery. Some people can live with a small defect, that would just sound like a heart murmur, but not have complications.
All this made Mommy and Daddy VERY relieved. I want to be able to hold you right away!!
Next I started asking questions about Down syndrome. The reason there is concern, is that 1 out of 3 babies born with an av canal has Down syndrome. So it is a pretty "strong" marker.
I asked the doctor about other markers...the echogenic focus on the bowel which was there last week (and a soft marker- meaning not as strong- for downs) is not there. However, your kidneys are slightly enlarged...soft marker...your nasal bone is measuring a little small..another marker...and your femur bones are measuring a little small...another marker.
The doctor said that all these "markers" are only that- they are not evidence, just possible indicators. He said the heart defect trumps them all- we might not be as concerned with all the small stuff if the big one wasn't there.
I told him we are totally fine with whoever you are.
And it's true.
I am not in a rush to know, to have an amnio and put you at risk for "management" purposes. I am completely, totally in love with you already, and no "diagnosis" can ever change that. 46 chromosomes or 47- you are mine, and you are a gift from God, and I really don't care!
The kind, smiling, teddy-bear-of-a-doctor looked at me and said "Your baby is just fine," and I knew we were going to be okay. Down syndrome or not, heart defect or not, you are going to be fine. This is fixable, this is not the nightmare of not knowing if my baby is going to have food or water, this is not giving birth in a nation where every day is a fight for survival, this is a tiny thing that is not too big for God. I can do all things through Christ, who strengthens me.
Daddy and Josiah and Mackenzie and I left confident that we can handle whatever the future holds, thanks to our awesome God. I am soooooooooo thankful to all our friends and family who have been praying- I really really believe it is those prayers that are helping us go through this. I am feeling a total peace about you, Lily- I don't know if that means you don't have any chromosomal or heart issues- or if it means you do, and God is just giving me the grace to deal with it. I just know I feel very safe in the protection of God, I feel tremendous grace over our lives.
And I'm NOT stressing. What a miracle!!! See how much you're teaching me already, Baby Lily?
I have dinner to make, and loads of laundry...I will write more later, but for now, you are Mommy's beautiful princess, and you have a whole crowd of waiting fans ready to spoil you crazy:)
I will post more later- I have to pick up your big sister from school. I had an ultrasound this morning, and I will write about that when I get back. In the mean time- you are beautiful, baby girl!!
Thursday, October 8, 2009
One more week until our ultrasound. I'm counting the days!
Aunt Lori found out Tuesday that she is having a baby girl!! Your new cousin:) I still want you to be a surprise...it's hard knowing that I get to see you again in a week, and I could know what you are if I wanted! But I really, really love the thrill of hearing "It's a boy!" or "It's a girl!" right after delivery...makes the pushing worth it! SO I am pretty set on waiting.
You are moving all the time now...not just little kicks, but somersaults and stretching and hiccups. You have definite sleeping and awake time patterns. When I wake up in the morning you are usually curled up on one side of my tummy.Then after I get up and move around, you stretch out more to fill my whole belly.
Which, by the way, is getting GI-NORMOUS. Seriously, every time I pass by a mirror I think "a fat woman has hijacked my body!" I have to think about not waddling to avoid it..and I'm only 5 months! I wake up thinking about food, and new combinations to create. This is the first pregnancy I have actually eaten pickles and ice cream together. Sounds disgusting right now. But I didn't eat them alone, don't worry. I put pretzels on top. DEE-LISH!!
I am sure I want the name Hayden for a boy. Daddy hasn't made up his mind yet. He knows for sure he wants Lily, but he's not sure about Hayden. Too bad, I know I'm set on it:)
I have lots to do today to get our house ready for company tomorrow night. We are having the church over for dinner, and your big sister and I are going to be cooking all day for it. I am trying to plan lots of things between now and next Thursday to make the time pass quickly. I am very proud of myself for not spending the time worrying or stressing...any time I get a little nervous about things I pray hard for your little heart and kidneys. Daddy is convinced that when we go back to the doctor in a week everything will be fine. I am not so convinced, but I do trust God that He will help us either way.
I love you sweetie!
Thursday, October 1, 2009
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 downs 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 (downs) 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.