Saturday, January 30, 2010
Thursday, January 28, 2010
You are 12 days old!! Seems like yesterday you were in Mama's tummy, and here you are almost 2 weeks old. I think that 99% of that has been spent in someones arms. Well, since you've been at home anyway. From the time we get up in the morning until we go to bed, someone is always holding you...each of your siblings takes turns with you, and we've had to stop more than one argument about who got to hold you last.
Jackson wakes up each morning and runs into my bedroom saying "I wanna hold Baby Lily!!!" He never calls her Lily, its always Baby Lily:) Mackenzie gets home from work each day and walks in the door and straight over to wherever you are. We have to pry you from her arms and tell her to get her chores done each day- she would literally spend every waking moment holding you if we didn't! Tyler, Jonathan, Caleb, Abigail and Noah all dote on you and comment on your every expression..they all want to feed you your bottle, but until you get a little bigger I'm not ready to pass that duty on. Josiah held you for hours today while he worked on his resume. Daddy gets home from work and asks "Where's my girl???!" I don't believe there was ever a more loved little baby girl on the planet:)
Everyone from church has been bringing meals each night...we have been SO SPOILED as a family because of you, Lily! Chicken Parmesan, BBQ pork on rolls, scalloped potatoes, tacos, casseroles, cinnamon bread, chocolate chip cookies, pasta salad, pizza, you name it, we have a fridge full of food! Everyone must think we eat a ton, because there are so many of us...so we have leftovers galore! It is wonderful for Mama, because all I seem to have time to do is feed you bottles, pump milk, change you, attempt nursing, and keep up on the laundry. I'm sure I'll get back to cooking soon, but this week has been quite an adjustment for me. I don't know how I would have handled making dinner every night while doing everything else!
Wonderful news...you are starting to nurse now!! We have been "practicing" since you were born, but last night and today you did very well. I am not giving up. I've never had to work at getting a baby to nurse before- but then again, you are very good at making me do things I've never done before:) My whole pregnancy with you was full of "first times", so it shouldn't surprise me that your arrival has brought new firsts as well. I always thought I had pretty much learned everything there was to learn about babies, but you are teaching me how much I don't know. I told my doctor last week- it might sound funny, but I'm kind of excited about having a baby with special needs...all kinds of new things to learn, and new challenges, and it's almost like having a baby for the first time all over again!
I am closing for now, as we have company coming...everyone loves to come visit you, sweet Lily bird. No wonder, since you are the sweetest and cutest baby in the world!!
Your Mama oxox
Tuesday, January 26, 2010
Since Mama has been writing to you, we've received so many words of encouragement along the way. I never knew- really knew- the power of words, until this new adventure with you began.
I have always loved that scripture "A word fitly spoken is like apples of gold in pitchers of silver"...it is such a beautiful image, and it is SO true. The kind words spoken to Daddy and me over the past few months have carried us through. I am just overwhelmed by how much people love us and pray for us.
Daddy preached the most incredible sermon Sunday morning- your first time going to church. He talked about your birth, and all that the following week entailed. He didn't go into details about everything medically, it was more about the little storm our emotions went through. He related it to the story in Acts about Paul and the group he was traveling with being shipwrecked on the island of Malta..and how sometimes life brings us to places we didn't intend to go. He ended the sermon by reading the Welcome to Holland illustration. He almost didn't make it through it all the way...I think you could have heard a pin drop while he was reading it.
One of the points in his sermon was about the safety net God provides in a storm. We might feel that we are going to drown, but underneath it all God has a giant safety net. He talked about how many times, this safety net is the people who love you and are praying for you, and who speak words fitly spoken into your lives.
This has been so, so true for us lately. I'm sure people will never know until eternity how much their emails and text messages and phone calls and facebook posts have meant to us. They have been a lifeline to sanity for us. Just knowing people are praying for you, dear Lily, has been such a safety net. We're not in this alone!!
I am going to copy some ofl the sweet words here as a reminder of how much people love you...
Hugs to you,
Patti - Thanks so much for sharing your heart. I LOVE this new thing I've learned about you. So real and honest. We love you guys so much and know we are praying our hearts off for YOU.
Love, Joyce :-)
I hope you will know, if you don't already what a wonderful family you have been born into. Even though I rarely see them anymore your parents are two of my favorite people. What a privileged little girl you are to have them for parents. Also your precious big brothers & sisters. With all that love surrounding you, you will never do without. I have had the privilege to meet 7 of your siblings & I pray one day I will get to meet you, Jackson & Abigail. I pray for you all. Give your mom & dad a hug for me.
Love you already...Kathy Kidwell
I cant stop crying....Patti you are the single most inspiring person ever to me, and I can appreciate your honesty. I can't even imagine what you all are going through, and it's totally beyond words for me to even explain how much I ADORE your family. I got saved because of your family and your life's witness and testimony, just look up to you all alot. I will find my way back to God hugely because of you all. Praying for you, I'll close there, cause I could type forever of how much I love your family.
Lily is gorgeous and such a miracle from God, sent to the most amazing family I have ever known.
Note to self unsolicited advice from a airhead blonde....quit blubbering on. haha
Love you guys your amazing!!!
It is my opinion that we learn much from our children. You will learn much more from Lily than from your other nine. You will learn to have more patience, compassion, humility, pride....and yes, you will have more worries. But remember "worries are a waste of time because we are all in God's hands if we place ourselves and our loved one's there."
Do not grieve for Lily because God has made her the way she is and He will never fore sake her. Trust in the Lord always, He would not have put Lily Anne into your lives if He did not think that is where she belongs, if He did not trust you.
Excuse me while I step down from my soap box.
I can't wait to hold my Lily Anne without her tubes, to kiss her tiny hands and feet. Some day soon I will be asking when is a good time to come. Maybe sometime in March so we can celebrate some birthdays.
Patti you little sweetheart congratulations to you Sam and ALLLLL the kids. Lily is beautiful.
Pat and I are soooo happy for you& Sam, your friend
that STILL prays for you
sweet Patti. Journaling is a wonderful way to work through grief. The poem about Holland has always been the handout I use for circle of friends. People read through it quickly but they really don't understand the depths of those emotions. I was just quoting a line to Bonnie on Wednesday, the line that says the pain of that will never ever ever go away and I never get through that line without crying. still don't. But thank God the deep grief has passed in my life and the sadness dissipates quickly. I am so certain this will be true for you Patti and your family. However it does not take away the intense grief that you feel now. I am so so sorry that you have to endure this process. It will get better I promise. Had to grin when you spoke of Sam with his baby girl. I'm tellin ya there is a bond between Jen and Gary t hat I could never replace. Their relationship has been such a blessing to me I know I do not carry the weight of this alone. It is very precious. Love ya girl. Talk to you soon.
Patti, thank you for the blog post. It is amazing, as is your strength. We are all about to find out, through your voice, how incredibly amazing, special...and perfect Holland can be.
Love and hugs...Ann Perry O'Connell
We want to extend a big congratulations from us to Sam, you & your whole family for the new addition of your little sweetie Lily.
As far as getting a hold of you, I just wanted to say thank you for faithfully all these years sending us Christmas photos of your wonderful family.
We love U's! We're not the best about keeping in touch, but we do pray for the Rice family and thank God for your friendship.
Well, 'bye for now & God bless you each very, very much.
Loving your blog. I copied/pasted your Holland quip to my blog as an inspirational note to others. I love you Patti! Hugs to that little buttercup! And to the rest of your familia as well!
Thank you for lily's blog, Your all in our prayers. God's love and blessings to all of you. hugs and kissies to Lily.
Your honest heart... is beautiful! Lord I pray that Lily would gain weight and strength this very moment.. in Jesus name!
See how much people love you already, sweet little Lily? Amazing, caring, thoughtful, loving friends, who are all praying for you constantly...we are blessed beyond belief to be so loved!
Your Mama oxox
Saturday, January 23, 2010
It's Saturday morning, 8 a.m. and I just woke from a horrible dream.
I dreamt you had Down Syndrome.
I was so sad, just wanting so much to change everything and have a baby with no special needs, and to feel like the part of the nightmare that was my pregnancy- the fear, the bad ultrasounds, the markers, the doctors warnings, the low movement of you in my tummy...was over. And in my dream I looked around me at all the "perfect" babies, and women having them, and young moms who didn't even want to be moms, and I thought "It's not fair!!" I cried and cried in my dream, tears of loss, and disappointment, and frustration, and GRIEF. I cried so hard I woke myself up.
And Lily, I'm still here.
I'm still in the dream, and I don't care how many people try to encourage me with words of hope, or look-on-the-bright-side, or even silly cliches. It hurts.
I'm just going to be painfully honest, because that's what writing to you is all about. It's not for anyone else, although I'm happy that people might read my letters to you and see that we're really okay, and know how much we love, love, love you. But writing to you has always been my therapy, because I have a tendency to bottle up my stress and anxieties just to prove I'm a strong person..and it ends up hurting more. So, at the risk of soliciting unwanted advice and words of wisdom from well-meaning loved ones...who've never been in this particular dream...I just want to say it hurts.
Because you have Down Syndrome, Lily.
I haven't said it here on purpose all week. Not because I'm ashamed, or love you any less, or because I'm embarrassed or don't want to face the truth. I just wanted a week to dwell on all the beautiful things that you ARE.
You are so perfect, you act like all my other babies, and you look like them all too. You have dreams in your sleep, happy dreams, where you laugh or smile, and I wonder what you could possibly be dreaming about at this age. You have bad dreams, where your bottom little lip turns down into the cutest pout. and you frown and look like you're about to cry, and I wonder what kind of dreams a newborn could have that would elicit those expressions.
You have fussy times (few) and sleepy content times, you have times when your eyes are wide open and you quietly look around at all of us in wonder. You startle if we lay you down too fast, you curl your tiny fingers around our big ones, you root around and open your mouth so widely, looking for food when you're hungry.
So many "normal" things you do, that it's hard to believe you have Down Syndrome. If I didn't know, and I looked at you from every angle...I wouldn't know. In fact, all of your siblings keep asking me- are we sure, Mama? Because you look so normal to us.
But then there will be reminders. A conversation with a doctor or specialist who says something that brings reality, like "babies with downs tend to..." or "Because she has downs, when she's older you'll want to...."
Or I'll have a bad dream... and cry so hard I wake myself up crying...
And then I keep crying.
I am just being honest, dearest Lily.
I'm grieving too.
I'm grieving because...because of a lot of things...Grieving because you'll never get married. I know, people will say- but you have two other daughters who will marry. But YOU won't. You won't have heart to heart Mommy/daughter conversations, where you tell me just how much you're hurting, or what boy you like and why, and where we analyze what so-and-so said and how it made you feel. You won't read a favorite book of Mommy's, like Jane Eyre, and tell me how much it meant to you, and what you got out of it.
You might even start to look different than us..
So after I cried, cries so hard I'm surprised I didn't wake everyone up, I realised you and Daddy weren't in the bedroom with me...so I came out to the family room and saw you sleeping in his arms, while he slept too...
And a flood of emotions filled me, because I realized there are things we are going to experience, and are experiencing...that we've never experienced before.
Because of your low muscle tone, combined with being premature, you have had a hard time nursing for more than a few minutes. We need you to gain weight so you will wake up more and be able to develop muscle tone, and be able to learn how to nurse. So we have been feeding you Mama's milk in bottles, and Daddy has been especially good at getting you to take your bottle. Since we've been home, you've woken up on your own for feeding time. It has been so wonderful to see you act hungry, and polish off your 45 mils of milk on your own. But in the hospital, Daddy was the one who was able to get you to take your bottle most of the time, even in your sleep.
Daddy did the 6 o'clock feedings the past two mornings so Mommy could get some much-needed sleep.
And that simple little scene that I walked in on- Daddy asleep with you in his arms after feeding you- made me realize, we're going to be okay.
You'll never get married....but you'll always be Daddy's girl. It breaks his heart that some day Mackenzie and Abigail are going to love another man as much as they love him...and he's going to "give them away". But he'll never have to give YOU away, Lily.
Right after you were born the doctors whisked you over to a table by my bedside to look at you, and give you oxygen. You were turning blue and staying blue without help. Daddy was right there, watching your every move, and telling me what was happening. When it was decided you would have to go to the nursery to be worked on some more, Daddy went with you while Mommy stayed in bed, waiting for the effects of the epidural to wear off. Daddy was with you two hours, holding your hands...because you wouldn't let the doctors put anything on your face to give you oxygen if he didn't hold your hands. You fought so hard, yanking cords out, trying to keep all the equipment away from your tiny face. Daddy talked to you, and consoled you, and helped the nurse finally get tubes in your nose, and taped to your cheeks, so you couldn't pull them out again.
When we found out you had to be transported to OHSU after you were born, the doctors said one of us could go with you. Mama's doctor did not want me to go- because I still needed to recover from having you. I would not be taken care of at the hospital in Portland, only you would be a patient there. Right away Daddy said he was going- and he was going to make sure he rode in the ambulance all the way with you, and watched every step of everything the doctors would be doing to you when you got there.
All through your first night at Doernbechers, Daddy was there. He watched as the doctors performed the transfusion/exchange procedure, allowing your blood to thin and flow more freely. He even took pictures so later Mama could see what they had to do to you. He held you and talked to you, and kissed you, and took care of you when Mama couldn't.
And while he was there, one of the male nurses named Larry, introduced himself. Larry has a son with Down Syndrome, and I think God placed him there that night to talk to Daddy.
I've told you before, Lily-- Daddy is the eternal optimist. Always looking at the bright side of things, never worried very much about what the future might hold. He takes things as they come, doesn't anticipate disaster or tragedy. He just has this philosophy- we'll cross that bridge when we come to it.
So I don't know what was going through his mind, as he was crossing that bridge that night after your birth. I'm sure there was a huge range of emotions he was feeling- pride, love, awe, joy...and grief.
Larry talked to Daddy about his son, and what a joy and blessing he is, and how he has changed their lives and enriched them so greatly. He told Daddy we are going to so enjoy you, and even through all the challenges we'll face, we will still love you just as much, if not more, than our other children.
A few days after we had been in the NICU I was looking through the stacks of information we were given. I found a printed out piece of paper with the title Welcome to Holland at the top. On the back of the print-out was a hand-written letter...
Sam and Patti,
I wanted to give you a copy of this. It was and is helpful for me and Janelle. I know you will get a ton of advice whether you ask for it or not. Please excuse me giving my 2 cents...
I just thought I would encourage you to just enjoy Lily. I know there are plenty of questions about medical and practical things, and I think you will get the important questions answered. I just think that one of the most helpful things I have seen/learned from my wife Janelle, was to just enjoy our son. He/Lily are a gift from God just like our other kids. I think the more I just enjoy my son, the more the rest of the things seem to fall in place.
Hope to see you again,
WELCOME TO HOLLAND
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I'm staying in Holland, Lily. I'm going to have my moments of longing for Italy. Every now and then there's going to be a reminder of the dreams I had for you, and I'm going to allow myself to mourn the loss of those dreams. But Holland is a beautiful place, a place I've never been before...and I'm not going to miss out on all the beauty because I'm pining away for Italy.
Your Mama oxox
Wednesday, January 20, 2010
Tuesday, January 19, 2010
Daddy and I are back at the Ronald McDonald house, about to go to sleep.
I just read my last post on your blog, and it was the MOST POORLY edited thing I have ever written! I was laughing, thinking- did I really write that?? I must have been extremely tired yesterday morning...spelling errors, doubled up words, run on sentences galore:) I am not going to change it, just so I can look back and read it and laugh...and remember the blur our lives turned into, in the few minutes after your birth:)
I have so much to write- I don't want to miss any details. But right now Daddy and I are functioning on very little sleep. I got 3 hours last night, and 4 the night before..and 3 the night before that. No wonder I've been having melt-downs left and right!!
I just want to tell you before I drift off to sleep about a text message your biggest sister just sent to me. She is right next door to us at the hospital with you.. she doesn't want to leave your side:) She is helping change your diapers, etc. and sleeping in a recliner there.
The text she sent me was so sweet, it made your Daddy and I cry together...
"Love u and miss u. I just love Lily so much:) She's the best thing that ever happened to me."
I couldn't say it any better...we are SO in love with you, Lily Anne. In just 2 and a half days you have changed everything. Our perspective on life, our love for each other, our appreciation for friends and loved ones, and even perfect strangers who are helping us down this new road in life.
I am so thankful for you, my beautiful, sweet, darling baby girl. I can't say it enough-
I LOVE YOU!!!!
Your Mama oxoxox
Sunday, January 17, 2010
So many amazing details - fingerprints of God all over your whole arrival...
Friday we had an interesting day. Started with the FMT at the doctor's office (fetal movement test.) You didn't pass this- you get 2 points during visits for different standards they are hoping you meet. This test just watched your movements through heart beats, and although you were moving, your heart rate always stayed the same...even when the doctor grabbed my belly and started shaking it! So, Dr.Hoshaw decided to send us for a more extensive ultrasound at the hospital later on in the afternoon. Unfortunately, they couldn't get us in til 4:30, and my shower was a half an hour away in Monmouth at 7. So right up until 5:30 we didn't even know if we could make it to your shower. The dr explained that you needed to get 8 out of 8 points on the u/s (you had a possible chance of getting ten, but you didn't get those 2 for the FMT.) If you got 6 points then we would talk about delivery.
That afternoon I packed a labor bag just in case -and basically went around in a daze wondering what to do...prepare for your birth or a shower? I so wanted something happy to take my mind off all the stress of the past month, and to go to my shower. I took a nap... when I woke up we told the children we were going to the hospital and possibly even having you, if things looked like we needed to.
At this point, I must say that I hope we have done the right thing all along. Right from the first "scary" ultrasound, Daddy and I made a decision to not share all the details of the "what-ifs" with our 6 younger children. Jason, Naomi, Josiah and Mackenzie have known all the possibilities all along, and been praying and coping with each new bit of news as it comes. But we just felt that Tyler, and all his younger siblings were just too young to process everything until we knew anything for sure. Because in my experience anyway, the what ifs end up being scarier than any actual problems. At that age, I don't know if you can process everything correctly, and know how not to live each day in worry. Not that they don't each have a relationship with God- I believe they do have "childlike faith"...but just the maturity to help them through everything- well I guess we just felt they were too young.
AND if you did have special needs, I always wanted them to have the chance to see and hold you first, and realize how perfect and beautiful and wonderful I knew you would be... and then get information about any challenges you would face.
Sooo...the ultrasound ended up being very good. You got 8 out of 8 points for all you did- small and large movements, amniotic fluid, breathing patterns, etc. Your kidneys and heart looked totally fine, everything looked normal. We raced home, and Abigail, Mackenzie and I excitedly got ready to go to Monmouth for your shower! I was so, so relieved to not be induced, and to just go relax and be with friends, and enjoy a night free from stress!
When we arrived at the shower, we talked for awhile and then prayed for the food (tons of yummy things to eat!) and began to get our plates. Denise asked me to go first- I was starving! after not eating much that day, just being nervous about the u/s and possible induction, etc. I was just getting my plate of food when someone rang the doorbell. Denise asked me to answer it, so I did with a plate of food in my hand...standing there were two complete strangers and two adorable
little girls, just staring at me in anticipation...I stared back and TRIED to register who they were? I have never felt so incapable of putting someones name to a face, I kept think I KNOW these people, but who are they??? All of the sudden my sister Hope's face registered!! and then my mom's !!! And I looked at these little princesses staring at me and realized- Jade and Grace!! And I BURST into tears!!! I put my plate down and grabbed my mom, and I must have sounded like a big baby just crying out loud , but I was SO SHOCKED and happy, it was like a dream!!!
I honestly don't know if I have ever been that shocked in my entire life- except maybe when Aunt Cindy and Aunt Heather flew in for my birthday several years ago to surprise me.
The shower was INCREDIBLE, just having them there and feeling so happy that Lily was fine and I didn't have to be induced, having yumilicious food, and opening gift after sweet gift.. you got SO SPOILED, it was embarrassing!!
When we got back home I had to show Daddy and the kids everything. Grammi and Hopie only stayed a few minutes because the girls had fallen asleep in the car. We were all saying you are going to be the best dressed little girl in town!:)
After everyone went to sleep, I was lying in bed wide awake, trying to unwind. It had been such a long, emotional day filled with highs and lows...and I was so amazed that my mom and sister were here for the weekend, I just could not sleep. Finally at 1:15 I decided- I better take something to sleep or I will be so wiped in the morning I won't have any fun with my family! I took some anti-nausea med, and was out in a few minutes.
Around 4 something in the morning I was woken up by a few contractions...I kept trying to go back to sleep, but they kept waking me up every few minutes. Finally, by 5 o'clock I realised I was not going to get any more sleep, so I got up and walked around a bit...still more contractions...I woke Kenzie up and asked if she would come in my bathroom with me while I took a bath and count contractions for me, (I knew Daddy would be useless- when he's out, he's out!;))
Kenz got my labor and delivery tape "I Exalt Thee"- used in all of my births except Jason...and we listened to it, talked, and timed contractions. I texted several people, telling them I thought I was in labor- people in different time zones, who I knew would be awake:) Like Uncle Chris and Aunt Lori, and Kris Altringer. The contractions were 3-4 minutes apart, and although not painful, definitely "real", not just Braxton Hicks. I got out of the tub and walked around, and they were still coming. That is always my clue that I'm in real labor...a tub or walking will stop false labor for me. Soooo. .I texted Danielle and Denise telling them I was pretty sure I was in labor, texted Kelly and told her the same, texted Aunt Hopie and said "How would you like to be a labor coach today??" She texted back, Sure, WHY? I told her how far apart the contractions were, and she and Grammi started getting things ready to come.
The funny part was waking Daddy up- I knew it would be:) I said Sweetie, I'm in labor.. and he sat up all sleepy and said "I have the worst stinking headache", so I said "Okay, just go back to sleep, I'll get things ready." He woke up a little more and was like "NO! I have to get up anyway and get to prayer," and I said "UM, that probably isn't a good idea.." So then he totally woke up and realized I really was in labor:)
We walked around the house quietly getting things ready, and I called the dr to tell her I was coming in...long funny story there : my midwife answered the phone, at home , asleep...took her a few minutes to register, etc. When I said I was at 37 weeks and in labor she said I am NOT happy about that at all! Get right into labor and delivery, do not waste any time! I finally said Tina, did you hear me right- I am 37 weeks, and she said OH MY GOD I THOUGHT YOU SAID 27 WEEKS!! and started laughing and apologizing and saying I was fine, etc, etc.
We woke Josiah up and texted everyone to start praying, and headed to the hospital. We got there around 8 a.m. and my contractions had slowed down a bit- maybe 5-7 min. apart, but they were very easy to deal with, nothing painful, just pressure.
I am going to have to continue this later today...Naomi is coming to pick Mackenzie and I up from the hospital here in Corvallis, and take us up to you and Daddy at Doernbechers in Portland. I can't wait to see and hold you again, my precious, perfect beautiful Lily!!
All my love FOREVER,
Your Mama oxoxox
Thursday, January 14, 2010
Today it is 23 days til you are due.
2 days ago we had another FST (fetal stress test) and ultrasound. Dr.Boyle, who is the head of the dept. did them both. She told me every Tues. morning they discuss their high risk patients. Guess what? We made their list;) Soooo they all (all the doctors and midwives) discussed you and me...and said what if Lily doesn't do what we want her to do at her FST today? Meaning, what if you are not moving a ton, and your amniotic fluid has dropped. I had been on the monitors for half an hour...and she came in to tell me all this. She looked at the monitor and said "And of course, she isn't doing what we want her to do!"
What is strange, is you HAD been moving a lot while I was lying there hooked up to the monitors. But your heart doesn't show it- the heartbeat is just a steady line, showing little fluctuation...it is always right in the same range, in the 140's. I asked her what they want to see- she said a ten point acceleration or deceleration in the heart rate..she gave me some juice, and put a cup on my tummy upside down and tapped really hard on it, trying to startle you. Your heart did what it was supposed to, and you jumped a bit. She said we would see what you did for ten minutes and left the room.
This time you went to sleep...she came back in saw the monitor and said we would do the ultrasound next..She measured the 4 quadrants of my uterus, and added up the measurements of the deepest pockets of water..They added up to 7-8. A healthy range of amniotic fluid is between 8-14. Last Fri yours was at 11. Last week the midwife had told me if it drops below 8 they get concerned. Dr. Boyle said I was still borderline safe.
Next she looked at your tiny chest. I learned something i never knew before- even though babies don't really "breathe" in the womb, (they get oxygen thru the cord), they "practice" breathing. Their chests make these little rising and falling movements to practice for when they use their lungs- isn't that amazing?? But they don't do it ALL the time, just at intervals. The doctor said sometimes we have to wait 30 minutes to an hour to see if a baby will do this- but you were doing it right away! And you did it the whole time she was doing the scan. Apparently this is a REALLY good sign of a healthy baby, so she was very glad to see that.
She also looked for clenched fists and feet...because if the fluid is low, this will be what can happen to a baby...not much room to move. But we couldn't see your hands or feet, they were tucked under you. ..
You were obviously sleeping, and didn't move much...but you did make tiny shifts, so that was good. You were head down, and low.
Sooo...at the end of the u/s she said this is where we go from here: on Friday I go back for a repeat of these tests (in the office.) IF you are doing the same thing, they want me to go over to the hospital weekly for a full scan, on a better machine, rather than 2x a week in their office. This would give a better picture of movement, growth, and amniotic fluid. IF your fluid is not good, or movements too slow, we will induce.
I asked AGAIN- why are we still talking about downs syndrome at every visit (she had mentioned that at the beginning of the appointment). She said mainly because we have never done the tests to rule it out completely (the amniocentesis). So because you have had all these soft markers for downs along the way, combined with my age, we have to err on the side of caution.
And here is where I heard for the first time that downs babies have a higher rate of mortality in the womb. Lovely. AND women over 40- especially almost 42- have a higher rate as well of having babies die in the womb.
Okay Lily, as I said in my last entry, I feel like I have been pretty calm throughout everything...I've had my moments, definitely, of losing it. But I really do think they are just "moments", I don't feel like I live in a constant state of stress. But every visit has added a new layer of things to pray about. And those words felt like they added TEN layers. I kept reminding myself- these are all just statistics! I don't live my life based on statistics, I believe God is in control, not numbers. And they are not these terribly high odds anyway, just "raised odds".
Dr. Boyle said what is important right now is that I make sure you are always moving like you normally move, by measuring kick counts. You should have 5 every hour. Every woman should be conscious of her baby's movements at the end of pregnancy, but she wants me to be extra alert about things, and she said twice- if there is any change AT ALL to let them know.
Doesn't that sound relaxing? Let us know if your baby stops moving so we can...see if she died? I mean really- wouldn't that be a little stressful for anyone ? But again I am reminding myself- you are in GOD'S hands, not just mine- I can count kicks and be vigilant, but ultimately your tiny life is not in my control. I have to TRUST God and do what I can, but I can't live the next 23 days in fear.
Easier said than done.
So the past 48 hours I have been having a little ...big...test of my faith. I have alternated between being relaxed and sane and counting kicks.... and struggling not to feel panicky when I don't feel you move. And keeping all my "what-ifs" at bay. There are a million what-ifs threatening to rob me of the joy of these last few weeks. They are ugly, and scary, and if I let them, they make me shake all over and cry, and I can't focus on anything other than praying God, please don't let Lily die, we've come so far, and overcome so much, and I want my little baby girl so much, please please just let her get here safely.
Sometimes I am really good at internalizing my stress..most times I am. I don't walk around yelling OH MY GOSH I'M FREAKING OUT!! But my body has lots of ways to remind me I am hiding the stress, instead of giving it to God. Like insomnia...nausea..lack of appetite...back and shoulders throbbing..contractions!!! the past two days have been filled with all of those. I've lost 5 pounds this week...
So what am I going to do, Lily? We need a calm Mommy here, it isn't going to help you to have me in this state.
I decided I am going to do what your very wise Daddy said. He is my rock in a storm, he holds it together for us, and I don't know WHAT I'd do without him. Honestly, I don't.
HE said we are going to put our faith in GOD and trust that He is going to bring us all through this. We are not going to live every moment wondering and waiting for what could go wrong. We are going to pray, and believe God to give the doctors- and us- wisdom for the next few weeks. We are going to believe God to bring you here safely in His timing, and trust that NO MATTER WHAT, God will take care of us all.
And like my dear dear friend Janet says- FEAR is not of God. It isn't!! So if I am feeling it, I need to stop, and make a decision- this is what Daddy said- MAKE A DECISION- to trust God and not my feelings.
So right now, I am going on record that I AM making that decision- I cannot live by my feelings right now, or I will lose it. I am going to trust God, I am going to believe God for my favorite time in life- labor and delivery- even if I have to be induced, I am believing God that it will all go smoothly and wonderfully. I am going to enjoy life, and these last precious days of you being inside of me, and enjoy the wonderful family God has given me, and know that all things work together for the GOOD to those who love God and are called according to His purposes.
Thank YOU God, for this testing of my faith, maybe I haven't passed with flying colors, but I am learning, and that is a good lesson for me. It doesn't matter how long you're a Christian, there's always room to grow, and God is so faithful to bring us through and help us grow.
Someone once told me that Lilies grow in hard places...I looked it up, and it's true. So true of YOU too, my little Lily. You are appropriately named, and what a beautiful, loved and prayed for miracle you will be when we hold you in our arms. We are all WAITING with anxious hearts!
All my love forever,
Your Mama oxox
Sunday, January 10, 2010
I have so much to update on...we had another u/s right after Christmas, and several doctor appointments since then..things are looking good..the u/s showed you measuring small, in the 27th percentile. All my children are on the small side, so that is not weird to me. Your kidneys looked fine, although they saw the echogenic bowel again. Your heart looked fine (thank God)...your bladder was distended...until they re-did the u/s and saw that you had emptied it! Basically everything looked normal, except your femur (leg) bones, which are smaller than the rest of you, but they are not off the charts, just at the very bottom. Could just be genetics.
Soooo, last Fri. I went for my weekly check-up. everything looked good, I was dilated to 1 1/2, you were head down. Then she measured my tummy, and it was only 33 when I was 36 weeks. (the numbers are supposed to correspond or be close.) Two weeks before when I was 34 weeks, I measured 34..and now you were measuring small. So obviously you didn't shrink, but you didn't grow. The midwife brought the ultrasound machine in to check my amniotic fluid. It was fine. She asked about your movements and I said you have definitely slowed down. But you've always been a pretty calm baby. Some of your siblings have felt like they were going to kick a hole through my tummy, but all your kicks are very gentle. Soooo, she talked to the doctor and had me go for a fetal stress test, or FST.
An FST is very simple, they just hook me up to 2 monitors- one to measure contractions, one your heart rate. I was contracting fairly regularly (which has been happening the past few weeks at different times) and it was probably because the midwife had just checked me. The problem was, everyone went to lunch and forgot me in that back room!) I had texted Daddy and told him about the FST so he called labor and delivery at the hospital..they said yes, she is on her way over, because another lady had just been sent over. So he and Kenzie went and waited 20 minutes for me there, while I was falling asleep during my FST at the doctor's office!
Finally a different midwife came back to the room and said she was so sorry, everyone had gone to lunch and she hadn't known I was back there! She looked at the paper (the print out of the heart rate, etc.) and said "Oh wow, you're contracting, but the baby isn't really responding like she should, let's try to wake this girl up!" She got me some grape juice and crackers, and immediately you started moving and your heart did the little "ups and downs" it is supposed to. (that shows movement, etc. rather than a straight, steady line.) Daddy and Kenzie asked the nurses in L&D if I was coming- and they all figured out I wasn't! and he and Kenzie came over to the doctor's office to see me. By that time I was done, and Kenzie left for work..Daddy and I made my appointments- because now they want me to go 2x a week for an FST and ultrasound, to make sure you are growing, moving enough, and that my amniotic fluid is fine. I went to the bathroom in the waiting room (and this might be TMI so Uncle Chris, stop reading) but there was blood..back to the midwife to explain how much, etc. She said that is normal for after a check- however it is NOT normal for me until I am in labor...nothing about this pregnancy has been normal for me! So anyway she said to go home and rest and call if there was too much.
At which point I lost it (on the way out to the car)...because Baby Lily, I am just going to be painfully honest...I am weary of it all. I feel like I have done pretty good- for me- up until this point. Through heart diagnoses, kidney warnings, possible open heart surgery at birth, 70% chance of downs syndrome, small femur and nasal bones, echogenic bowel, fluid around the heart, kidney stones and hospital stays, bladder infections, food poisoning and emergency room trips, a hernia and belly bands, carpal tunnel and wrist braces, 6 ultrasounds, trips to Eugene, etc.etc.etc I feel like I've been pretty good at staying calm and trusting God, and just enjoying this pregnancy up to this point. But Lily, I am just tired of the roller coaster, and I want to get off.
Don't get me wrong- I still love pregnancy, and I DO trust God, and I DO believe you will be totally fine. It's just that I would like a break in this little trial, I would like to just have a "typical" boring doctor's visit, I would like to just hold you in my arms and smile and say THEY WERE WRONG ALL ALONG! And just know that medical technology has come almost too far for it's own good...and lawsuits have forced doctors to constantly function in CYB mode. That is what Daddy said when we got to the van and he talked to me through my tears...
"This is all 'CYB', babe!" were his words. I said (with mascara running down my face) "What is THAT?!?" (thinking oh great, just one more new thing I've never experienced ??)
So Daddy said "It's Cover Your Butt !!"
He went on to say that with every baby we have seen more and more "tests" and checking, and making sure they let us know every single little possibility...so if anything goes wrong, nobody gets sued, they can say they told us.
So I went home and rested and read all my previous pregnancy journals...which are usually in a book, not in blog form:) And guess what I found out? ALL my babies measure small, I have NEVER measured "right." I never measure 37 or 38 or 39 or 40 at those weeks, and I rarely even get to 35 or 36 inches. Or centimeters, whatever they use. IN FACT with Abigail- my smallest baby besides Noah, who was premature, I measured 31 at 36 weeks!!! and nobody asked me to do any special tests or ultrasounds, nobody got nervous that she wasn't growing...
So am I saying I don't trust or like my doctors or midwives? Not at all, they are just doing their job, doing what they are now trained to do, and it is not out of incompetence or greed or anything other than this is just the day and age we live in..and maybe it would be nice if we could go back to a simpler time when they just felt your tummy and took your blood and said"Looks good! Take 2 aspirin and call me in the morning!" however....maybe we might not be able to save the babies we do, who DO have heart problems, etc. that benefit from immediate attention after delivery. And we might have more children like my friend Christina M., who went 5 years with medical problems before they finally did surgery and found out she did have a heart problem that required surgery. So I guess technology has become a double-edged sword, and quite probably I am just experiencing the ...not so nice...side of the sword.
Well, little Lily, I love you, and really in spite of all my tears and complaining here, you are worth it all. It's been a great test of my faith, this pregnancy...coming on the heels of a miscarriage, and throwing all kinds of curve balls our way ...but God uses ALL things for the good, and no matter what, I am glad He blessed me with YOU.
I have 27 days left (give or take a few) of you in my tummy, and I am cherishing every moment of this special closeness to you. After that I have to share you with everyone, but for now you are all mine:) I love your sweet kicks and knowing you are curled up inside of me, I love knowing you are a girl, I love the anticipation of your birth...I cannot wait to hold you and kiss you and look at your sweet little face and tell you how much we've been through together already. Mommy's littlest princess, I am just anxiously, lovingly, WAITING FOR YOU!!!
All my love forever,
Your Mama oxox