What a little sweetie you are already, dearest Lily. Mama just cannot wait to hold you!!
Friday, December 11, 2009
What a little sweetie you are already, dearest Lily. Mama just cannot wait to hold you!!
Monday, November 9, 2009
It has taken Mama a few days to find time to write about our ultrasound last Wed. Life doesn't slow down around here!
I'll back up to the beginning of the appointment. The sonographer and the doctor are a husband/wife team from OHSU. As I said previously, they are the best in the region. They scanned your heart for ten, maybe fifteen minutes, and talked "in code" to each other. They both kept mumbling half-phrases to each other, it was really funny:) For instance Dr. Rice would say "Can you get a better picture of the-" and her husband would zoom in on something and say "-well I tried to, but here's a different angle of the-" and she would say "I can see why they thought it was a-" and he would say "-but there's nothing I can see that would-"andhe would say "well, I do see a heavy tissue there but-" and he would say"I'll get that shot next after the-" ....at one point I thought I understood what they were saying, so I interjected "They never actually saw a canal, it's just the way the valves were lining up" to which the sonographer said "Oh, okay, well-" and the doctor left the room and came back in and said "okay, now let me see that-"
....FINALLY (after what was really just ten minutes, but seemed like forever of waiting!) the doctor went out of the room, and came back in with a printed out picture of two hearts- one with an av canal defect, one without- very much like the one I posted on your blog a few months ago! She sat down and said "Well, this is what an av canal defect looks like" and explained what I have been studying on the internet for weeks. She concluded by saying "And we see NO signs of any canal whatsoever." I can't even tell you, Lily, how huge of a grin my face broke into in two seconds flat. Like light just poured into that room, and weeks of waiting and wondering and praying and asking God for GOOD NEWS and a miracle, or whatever it took- just ended with one little sentence. Even though I have had a tremendous peace about you through everything, I don't think I realised how much of a "weight" I was feeling...until the doctor spoke those words and I just breathed this giant SIGH of relief!!
As a side note...Dr.Mary Rice is not at all what I would expect of a pediatric cardiologist..she looks like a friendly Grandma with a cute bob of dyed hair...with a little colorful kids' hair clip stuck at an awkward angle to hold her hair back from her forehead...big glasses, reminds me of Marcie from the Peanuts cartoon...and dressed like a Grandma with a white coat on..I just have to post a picture to remember her in the future...
Isn't she a crack up?
But when she opened her mouth- and started explaining everything about hearts- all doubts about her professional capabilities rolled away:) This lady knows her stuff!
And when she told us she saw NO av canal defects- she smiled that big happy smile too, and she looked like the most beautiful angel on the planet to me!!! Isn't that funny? I thought the first doctor, Dr. Katz, looked like a giant toad, and I have to say I was not happy with him.
Dr.Rice went on to say that every baby has a small "flap" in their heart, that closes on its own after birth. This is because the heart functions differently in the womb than in "real life." Your "flap" looks like heavy tissue, instead of a solid "flap". However, this might just develop into a true flap after you are born- in which case no treatment would be necessary. Dr. Rice said we need to get an ultrasound for you at around 3 months of age to see if that flap has closed. If it hasn't, it can be fixed by a catheter and NOT open heart surgery!! Thank you God!!
I asked her about our "odds" of downs syndrome...she said they definitely just improved. 75%of children born with an av canal defect (which we now know you don't have) have downs. At this point we don't even know if you have this flap defect (atrial septal defect, or ASD)...she said 50% of babies with downs have heart problems, so it's all in how we look at it.
We are just thrilled beyond belief that you do not have to have open heart surgery! When I asked about delivering at OHSU, the doctor said there is absolutely no reason why I can't deliver in Corvallis. She said this is very minor, and definitely will not cause any problems at birth. In fact, a lot of people born with this never require treatment for it, because often it just resolves on its own over time. Yay!!
Soooo.....now we go back again for another level II ultrasound on Dec. 3rd to check on your kidneys. They were enlarged at the last 2 ultrasounds, and the doctors want to keep an eye on them. I have talked to SO many people whose babies had one enlarged kidney, or both enlarged, and a labor and delivery nurse also told me this is the most common "abnormality" found on ultrasounds. Still, we are praying for everything to look normal in December!
All in all, little Lily, we are getting SO excited to see you and hold you! The days are flying by quickly, and before we know it February will be here!
I am exhausted, so I am calling it a night...we all went to the dentist today- no cavities for anyone, praise God! Miracles happening around here left and right !:)
Sweet dreams and all my love,
Your Mama oxox
P.S. So much for Dr. Katz's earlier statement "I am 90% sure that what I'm looking at is an av canal." Either you are in that ten percent...or God did a miracle! Either way, I'm glad you proved him wrong!
Thursday, November 5, 2009
Yesterday we received the best news we have had in months- NO av canal defect!!! I will post more tomorrow, as it is late and Mommy is sooooooo tired. But I just had to tell you, I am SO relieved that you will not need heart surgery!!! If there is a small problem- which I will explain tomorrow- it is just fixed thru a catheter. And that is probably not even going to be necessary.
Thank YOU Lord, for either a miracle, or a confirmation that there never was any defect in the first place- just valves that like to line up to give us all something to pray about! ;)
I love you baby girl!!
Mama oxoxo and an extra ox just for the good news
Tuesday, November 3, 2009
Good morning, Lily!
Tomorrow is the big day..well, that's what we thought last time, but hopefully this time will reveal more answers. We go to Eugene again for another echocardiagram. This time the pediatric cardilogist from OHSU in Portland will come look at your heart. Her husband is the sonographer- they have both been specializing in hearts for a looong time, and are the best in the region! So we are anxious to see what they have to say about your little heart. They won't be looking at anything else tomorrow- we have another level II ultrasound on Dec. 3rd, when they will do a full scan again, checking your kidneys, growth, etc.
Daddy and I have decided if there is any heart defect at all, even one that does not require immediate surgery, we want to deliver at OHSU. They are the best in the region, and if there was any unforseen problem, we want you where they can help you right away- without having to be transported and without leaving Mommy behind in Corvallis! I have learned alot of things about OHSU/Doernbecher in the past 3 weeks that really makes me want to deliver there. They do not have the rule that our hospital has recently implemented...which is NO visitors under 18, and only 2 visitors the entire stay in labor and delivery and recovery! So only Daddy and Mackenzie could see us the whole time we are in the hospital here :( And that is IF they let us sneak Kenzie in- she will be a month shy of 18. My midwife said we can call her our doulah- labor assistant/coach- and they would have to let her in. That means Jason and Naomi, Josiah, your brothers and sister- would all have to wait til we got home to see you or me. That makes me so sad! OHSU only limits visitors to age- no one under 12 is allowed in the maternity ward. All of this is due to the swine flu, and that will last until past your due date.
The other thing I learned about OHSU that is awesome is that they have an excellent midwifery program, and they provide WATER BIRTHS! Mommy has always wanted to have a water birth, because I LOVE laboring in the tub. Our hospital does not allow this (yet)- our midwives are working on this. OHSU provides this service if the parents attend a water birth class, and pay $100 for the use of the tub. It is a huge tub that sits in the birthing room, and it has easy steps to get into it. This is all a big IF...because I will need to find out IF I am considered high risk, IF you ave a heart defect. The midwives do not see any high risk patients there. I talked to one of my midwives, the one who delivered Jackson, and she thinks it would not be a problem at all.
If that is not an option, OHSU has wonderful OB's as well..and the neonatal unit is right next to the maternity ward, so either way, everything is readily available should you need extra care.
Since we will not know until you are born if you have downs, we are also leaning towards Doernbechers...the doctors have assured us that babies with downs are normally very healthy, but sometimes there are small issues at birth that might require extra assistance.
All of this might not even be necessary..we will know tomorrow! But now that I heard all the great things about OHSU I am wondering if I could switch to them even if you don't have any problems!
Meanwhile- you are growing lots and always active. The kids love feeling you kick, and Daddy always tells you (thru my tummy) how much he loves you. You are getting so big that Mommy now has a hernia under her belly button! :( I went to get fitted for a belly band yesterday, to help give my tummy support. Hopefully it resolves itself after delivery! It looks like there is a 3 leaf clover-shaped bubble on my belly button. Yuck!
We have decided on Lily Anne for your full name. We love the name Anne, and it goes so well with Lily. I have so many people I would love to name you for, and I don't want to leave anyone out! Moms, sisters, friends...if I named you for my favorite women, you would have 25 middle names:) Your sisters' middle names are just names we love, whereas we chose your brothers' middle names for certain people. Jason Christopher is for Uncle, Josiah Charles is for Papa and Uncle's middle names, Tyler Kevin is for Pastor Foley, Jonathan Samuel and Caleb Benjamin are for Daddy, Noah Stephen is for Papa and Jackson Parker is for Grandpa Rice.
We have a very dear friend, Ann Cox, who lives in Gaston, OR. When we first moved to Oregon, Daddy did some tile for her. She opened up their beach house to our family- and has been letting us use it ever since. She and her husband run a vetrinarian clinic in Tigard, where we take our dogs for shots, check-ups, boarding, etc. The Cox's will never let us pay for services there, and will never let us pay to use their beach house. It has become our second home. Anne is one of the sweetest women I know. I hope some day to be half the Christian she is. She is the most generous, sensitive, kind, caring, loving woman , and I am so honored to know her. I cannot picture her ever sayng an unkind word about anyone. She has a smile that lights up any room, and just 5 minutes on the phone with her makes you feel like everything is going to be alright. She has called me at crucial times when I just needed encouragement- and she didn't even know it- and said just the right words. I wish everyone had an Ann in their life- someone who you could count on to be praying for you, and who you knew would always have some encouraging, sweet words to speak into your life. I hope, Lily Anne, that you will be the kind of person Ann is some day:)
So Lily Anne you are...and If I wanted to keep naming babies after people I loved I would need at least 100 more babies!
I don't think my belly button will hold up to that amount of children, so I think we will stop with you:)
See you tomorrow!!!
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.
Wednesday, September 30, 2009
Mommy is starting a blog about you! Every baby I keep a journal, filled with how my pregnancy is going, what I'm feeling, how the baby is growing, etc. I started one with YOU, but I decided to transfer to a blog. I don't seem to be very good at writing lately- typing is faster:)
Sooo...I am 21 and a half weeks pregnant- 5 months. I am past morning sickness, and not feeling terribly uncomfortable yet- the 2nd trimester is always the easiest! I have gained 18 pounds so far....yikes.
One week ago today we got to see you on ultrasound!! It was a level 2, done in Eugene at the Riverbend Sacred Heart Medical Center. They specialize in maternal screening, and since I am the outrageously old age of 41, my doctor suggested I skip the regular u/s and go for a level 2. I agreed, because who would want to turn down a 3d/4d picture of their baby??
Mackenzie begged to go with Daddy and me. We agreed as long as she PROMISED not to peek at the gender- we want to be surprised this time! I didn't (correction by Daddy) find out with our first 6, knew the gender on the last 3, and since this will most likely be my last pregnancy, we want it to be a surprise.
The cool thing about the level 2 is I didn't have to drink any water! Usually I have to go to the bathroom so bad the whole time, that I can hardly enjoy the u/s.
We arrived at the hospital at 9:30...and didn't even get in to see the genetic counselor til 10:30. Talk about nerves ...I had already thought my u/s was the week before..and the night before I looked at my piece of paper with the date on it and realized my u/s was the following week. So it already felt like I had been waiting forever.
The counselor was very nice, and informative. She gave us statistics, but I didn't feel like she was pushy with anything- just telling us what to expect. I really do hate statistics- and at the same time, who can avoid hearing them and having them lodge themselves into their brain? One in 85...those are the odds of a woman my age giving birth to a baby with chromosonal defects. Lovely, huh? How do you wrap your brain around random numbers like that? And what is the point??
So, after hearing all the odds, we proceeded to the u/s. The sonographer was cheerful and talkative, explaining everything she saw (almost) to us as she went. She started off doing a typical ultrasound- you looked like a skeleton, moving around constantly, waving your fists in front of your face, folding and unfolding your arms and legs, turning one way and then the other. You were doing a complete headstand in mommy's tummy:)
We saw your brain, your heart, your stomach, your kidneys, your leg bones, etc. And each time she measured something I would watch the estimated gestational age in the corner. You always measured just a few days short of your due date- Feb. 6th- which the sonographer said was normal. Your heart rate was 132- also normal.
Then she switched to 3d/4d- talk about AMAZING!!! You instantly looked "real" to me- skin and features and fingers and toes and even a little hair...it was so cool! At first we said you looked like Jonathan- and then Abigail...your little pointy nose looks just like hers and like Jackson's. You kept moving and turning your head and the sonographer would freeze the picture so we could get a "still" shot.
I have never had an ultrasound like that- just completely real, so life-like and detailed and like actually watching a movie of our baby. I was so in love with you already!
Here is what you looked like...
You are beautiful! Boy or girl, you are so perfect and special already. I am so in awe of what God makes, how miraculous life is.
I have to go get dinner ready for everyone- it is a Wednesday, so we have to get ready early for church. I will write more later, but for now sweet baby, please know how loved and cherished and special you are to us. I can't wait to see you in person!
All my love,
Your Mama oxoxox