Saturday, January 30, 2010

Dearest Lily,
Today would have been one week away from your original due date..I got my weekly e-mail from telling me what to expect at week 39 of pregnancy:) So strange that you have been here for two weeks already, when all along we thought of you as our February baby.
You are still very sleepy. I have been reading a lot on Downs, and apparently this is very typical- as is your content nature. You never cry- if you are upset you let out a high pitched squeal that lasts a few seconds. You have not had any real fussy times...except for when we're trying to nurse and you are frustrated, just wanting your bottle.
When I gave you a bath in your new tub (rather than just washing you off on a towel), you promptly fell back to sleep. In fact, you curled yourself up into a little fetal position...legs tucked up against your tiny chest, fists pulled in below your chin. I'm sure it felt like you were back in Mama's tummy:)
Nursing is the NICU...3 steps forward, 2 steps back. Sometimes you "get it", more often you are mad and pull off, frowning and grimacing and grunting in frustration. The bottle is so much easier for you- all you have to do is swallow. But breastfeeding is work. And many times Mama feels like we are involved in a wrestling match...rather than the dance I mentioned in a previous post:)
We did have an excellent feeding this seems you nurse the best when you are completely wide awake, and have already had your bottle an hour or so beforehand. I spoke with a woman from La Leche League today, and she encouraged me that the more you are awake, the better you will nurse. Right now you have two strikes against you, being slightly premature, and having downs. Both of these contribute to your sleepiness and inability to coordinate sucking, swallowing, and staying awake...and breathing through it all!! But the bigger you get, the more you will wake up and be able to do all of these together. The important thing for us is to keep working at it, and not give up.
She also encouraged me that breastfeeding will benefit you greatly in the long run. Not only because of the health benefits- the antibodies and nutrients in breast milk are so good for you- but also because it helps develop your muscle coordination for speech. Because of downs, you have low muscle tone, so the skills you develop to nurse will aid you in forming words one day...through tongue control, etc. On top of all that, the direct contact and stimulation involved in breastfeeding is exactly what you need as a baby with downs.
All of this makes Mama all the more determined to not give up on nursing. I was honestly not going to give up just because of my own desire to nurse... but now that I know it is important to you as well, I can be confident that I'm doing this for both of us.
Well, little Lily, it is time for some much needed sleep.
As I close, I am heavy hearted about our dear friends the Fishers, and all that they are going through with their daughter, Rose, and grand baby Benjamin. All of our little issues seem so small in comparison to what they are currently facing. Benjamin was born this past Sunday 11 weeks early, and weighing just over 2 pounds. His mommy Rose had to have immediate surgery after his birth to repair a torn uterus. Benjamin faces months in the NICU, with possible cerebral palsy, and Rose has just now gotten released from the hospital to see him. Lord, please touch this precious family, and bring strength to them in all that they face.
I am so thankful, sweet Lily, that you are home with us and doing so well. I am not taking for granted one moment with you- you are so, so loved and we are so incredibly blessed to have you in our lives. You are a gift straight from Heaven !
Love always,
Your Mama oxox

Thursday, January 28, 2010

Soooo Spoiled

Dearest Lily,

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 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 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!!

Love always,

Your Mama oxox

Tuesday, January 26, 2010

Letters to Lily

Dearest Lily,

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" 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...

Thank you, Patti. For your open heart and honesty. I KNEW this. I just knew. . . .of course. That's why you are in our thoughts and prayers all day and all night. I love you so much! My heart hurts for you!





I know this letter is for Lily, but thank you for sharing her with all of us. We rejoice with you in her birth and will pray that God just helps you and Sam thru the rough spots of emotion that will come. We love you guys and already love this little baby of yours even though I've only seen pictures of her. Take care and get some sleep - haa haa - does anyone get sleep with a newborn??? :)


No words of wisdom or advice for you; just many prayers, and good thoughts. We have only been to the border of Holland with one of our girls. I DO remember thinking and feeling at times that one of the dams they are known for was about to break, and I was in the flood zone. I wonder if there is a children's wall border of beautiful tulips, a windmill here and there...bright and sun shiny, and full of color? Patti, if your life ever becomes the least bit calm, I really think you need to consider writing beyond your blog. Perhaps children's books? Or something to help other new residents of Holland.

Hugs to you,

Barb Fisher

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.

Dear Patti: I thought I would just send you a personal note. I really don't have much to say (no great words of wisdom, advice or whatever :-) just...words to let you know that I'm thinking of you). I so appreciate your honesty on Lily's blog. I'm glad I was home alone while reading it this morning because it made me cry and I didn't have to explain to anybody why I was crying... I believe that God is going to help your family each day as you "travel in Holland" ~ a place you've never been before. The picture of Sam and Lily is so sweet. Again, if there's anything I can do to help you or if you want some company sometime, just let me know. Praying for you and love you!

Love, Joyce :-)


Lily couldn't have been sent to a more loving family... a mommy and daddy that see beyond the surface and look deeper at her precious heart. As you and your family have been blessed with her life, she also has been given the gift of 2 wonderful parents... As I was reading this entry, my mind drifted off to the old poem written by Robert Frost about two roads... And as you walk this rode less travelled by... walk with the knowledge that you can always find comfort and renewed strength from the Lord as well as the many, many friends that very obviously love your family to pieces:) I thank God for you guys and your godly example to all that know you! Thank you so much for baring your heart.. I was so touched by this entry.. and I second what Barb said.. you have a gift with words and I hope that one day I will be buying your book:) We love you and I can't wait to meet the newest addition to the Rice clan!



Sweet Lily,

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!!!
Jamers Rand


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.

Love, Mom


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

Mary B.

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


Dear Patti,

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.

Diane Scott


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.

Catherine Richardson


Your honest heart... is beautiful! Lord I pray that Lily would gain weight and strength this very moment.. in Jesus name!

Heather Stirn


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!

Love always,

Your Mama oxox

Saturday, January 23, 2010

I had a dream...

Dearest Lily,

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 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,

Larry J

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.

Love always,

Your Mama oxox

Wednesday, January 20, 2010


Dearest Lily,

Three steps forward, two steps back. That's a good way to describe our experience here at Doernbecher's Children's Hospital at the NICU.

The first day it looked like you might possibly be going home in a day or two. The next evening we were told probably more like 4 or 5 days. Then back to a day or two, depending on how you ate. You ate so good yesterday that we thought today we might be discharged. Then Dr. Gilhooly came to talk to us this morning. He said you are eating well, but just not enough. He talked to us about putting a feeding tube in, and how we could even go home with it in. He said this would speed up the whole process, because it would allow you to get the calories you needed without having you burn them up by bottle feeding all the time. It is a lot of work to get you to eat, we have to try all kinds of little tricks. You start off great, but you fall asleep half way through because you are working so hard to eat. Then we have to basically force feed you the rest of the bottle. We are suspending nursing for now- maybe trying once a day because the milk does not come out fast enough, and you have to work too hard to get it. Part of this is muscle need more of it to make your jaw and tongue and sucking action work well.

Sooo, the feeding tube would help to bypass all that work, and just give you the food you need...and maybe within a few days you will be strong enough to feed on your own.

The doctor told us the nurse would show us how to put the feeding tube in- it gets threaded thru your nose, down your esophagus, and into your belly. It is very, very tiny, but babies usually don't like having them put in. However, if we are going to take you home with one in, we need to know how to re-insert it, should it come out. Which would probably be caused by you yanking it out. We will still put my pumped milk into the tube, so I am still working round the clock to keep my milk supply up, and store milk for you.

After the doctor left this morning, Pastor Mammen and Susan surprised us with a visit. They thought you were so adorable, and they each took turns holding you. They really encouraged us that so many people are praying for you and love you, and at the end of their visit we all prayed for you together.

While they were visiting with us, a woman from The March of Dimes stopped by to invite me to-- of all things- a time of scrapbooking!!! It is a once a week group that meets in the waiting room/lounge, and the woman provides all the supplies...even an 8x8 album to work on for your baby! I told her I would LOVE to join them- they meet from 1 to 3 in the afternoon, and on Friday nights they have dinner and scrapbooking as well. It is a service provided for all the families in the NICU to help parents, etc. get a break and feel somewhat normal for a little bit of time. It is also a nice way for parents to meet other parents who are all going through their own set of circumstances. The woman, named Jennifer, explained that she also has family day passes to OMSI (Oregon Museum of Science and Industry) if we were interested. How sweet is that?!

Jennifer asked me about you, Lily, and asked if you had any siblings...I said yes, lots!! So she brought in t-shirts for all your brothers and sister (except the oldest three) that say Big Brother or Big Sister on well as three duffel bags filled with goodies for the kids. They had books, coloring books, crayons, a deck of cards, fun things like that in each duffel bag. I told her I would be there to scrap at one o'clock!

Yesterday a young girl stopped by our little "pod" in the NICU to take your picture. She does it for free, as a service to OHSU. She took the beautiful picture that is now the header for your blog, and also another sweet one of you and me and Jason. So, I brought the photo of you to the scrapbooking session, and made a great layout using all of the supplies they provided. It was SO relaxing- just yesterday I was thinking to myself- I wonder when all of this will calm down, and when I will ever be able to find time to scrapbook again- and here I am scrapping away for an hour! Jennifer has so much baby girl stuff-- pink papers, and ribbon, and stickers specifically themed for preemies, and NICU stays. I made one 12x12 page, and several 8x8 pages for the mini album I had been working on for you already. It was just one hour, but it felt like such a break from all the strangeness and stress I have been feeling.

I left the scrapbooking meeting to go back to the NICU for your feeding tube to be put in. The nurse wanted one of us to put the tube in, so that we know how to do it when we get home (if it comes out accidently.) Daddy decided to be the brave one...the nurse (not my favorite nurse in the world, but that is for another post!) instructed Daddy on how to thread the plastic tube through your nose and down your esophagus and into your tummy. First we measured how long it is from the tip of your nose to your ear, then to the chest bone, then two fingers under your ribs, which is where your tummy lies. We did it with the tube, and triple checked to make sure the numbers matched. It was 20 cm. total, so we marked that off on the tube ...that is so we would know when to stop threading it down. Doesn't this sound like fun?? Not.
We also learned how to know whether the tube is actually in your tummy or not- which is something we need to check before each feeding. If the tube becomes dislodged, by sneaking out and coiling up somewhere other than the stomach...then we would be feeding milk into other parts of your body. So to check we can do two things.
First, we attach a syringe to the end of the tube on the outside. We gently pull up on the syringe, to see if any liquid comes up from your tummy , such as leftover milk you have not yet digested. If any comes up, that means the tube is still in your stomach. Sometimes air comes out too- which is good, because we don't want a lot of air in your tummy. It can make you feel full, and then you won't eat. If there is air in the syringe, we unhook it and release the air. Whatever liquid comes up, we GENTLY push back into your tummy.
The second way we see if the tube is still in the tummy is tricky. We put a stethoscope in our ears, and pull 5 cc's of air into the syringe. We attach the syringe to the tube and GENTLY force the air into your tummy, as we listen to your tummy with the stethoscope. We should hear a small "puff" of the air going back into your tummy...this again means the tube is indeed inside the tummy where it supposed to be.
If all is good, we can proceed with the feeding, or "gavauging." This is done by placing whatever breast milk you did not finish in your bottle, into a syringe that is hooked up to your tube. We hang the milk in the open syringe from a rubber band attached to a safety pin above you somewhere, as we prop you up a little bit on our lap. For instance, I was sitting in a rocking chair, with you on my lap, and the milk in the syringe was hooked to the top of the cushion of the chair at my shoulder. This is so that gravity will force the liquid to drop thru the tube into your tummy. We do not want to push it thru with the syringe, as it will go too fast and make you vomit! Sometimes the milk might come down too fast- we watch you for signs of this to make sure it won't gag you. If you start to gag, we pinch the tube to stop the flow of milk, and give you a chance to settle down...and perhaps adjust the height of the syringe to slow down the flow of milk.
Sound complicated?? I thought so too :( I'm sure after we do it a few times we will feel like pro's.
But for now....Daddy could not get the tube in. If he meets resistance while threading the tube down your nose, he is supposed to stop, gently pull some of the tube back, and start threading again. The problem is he KEPT meeting resistance, and you were screaming and turning so red you were almost blue. Mommy was almost in tears, and feeling ill..Daddy tried and tried, and finally the nurse took over. She tried each nostril to no avail...appparently you have very small "nairs"- the hole at the top of your nostril- leading down into the esophagus. Sooo, the nurse decided you had enough and said we will try later.
We were very discouraged, because she said if another nurse could not get the tube down your nose, we would have to do tube feeding through your mouth...which would mean we couldn't take you home. After all that work, you were VERY hungry-- and when I fed you the bottle you took 45 mls!!! A first for you! You usually take around 30 ml. which is not enough to get you to gain. 45 is the optimum, and you took it all!!
Daddy and I left for dinner, and PRAYED...and when we came back you had your feeding tube in! Another nurse was able to get it down, thank God!! We learned again the steps of feeding you, and gave you your 9 o'clock feeding...kissed you goodbye...and came back to our home away from home:)
We have high hopes of bringing you home tomorrow...Daddy just has to be able to do that tube insertion himself we are praying earnestly that he is able to do it. They can't send us home without one of us being able to do it. The tube can stay in for 30 days, but in case it falls out, or you pull it out, we must know how to re-insert it. Hopefully by the end of a week we won't even need the feeding tube any longer!
So much to learn, little Lily- we are getting such an education in one week. So much more to write, but I have to get my I can be the best Mama possible for you, and be ready to handle all these new challenges.
I love you, baby girl- you have made my life SOOO happy these past few days. In spite of all the emotions, you have made me the happiest Mommy in the world, just by being YOU. You are the bright spot in this hard week of being away from home, and riding this roller coaster called the NICU.
And I thought when you were born I would get OFF the roller coaster;)
All my love forever,
Your Mama oxoxox

Tuesday, January 19, 2010

Tuesday in the NICU

My precious Lily,

I love you sweetie!!

It's our third night at the Ronald McDonald house..our strange little home away from home. Not exactly a luxury hotel, but very affordable and peaceful. We have our own room and bathroom, and it is nice and clean and quiet. It's right on the OHSU campus, and Mama sure is getting her walking in, both in the morning and at night when we come home.

You would think that being here three days would get is anything but! We are always juggling..trying to get some sleep in between feedings, meeting with the doctors, running down to the cafeteria, pumping milk for you in another room, trying to fit in phone calls to the kids and family and friends while we're on our way back here or to the cafeteria (because no phones are allowed in the NICU...or food!) It is crazy how busy we are.

We took a two hour parenting class today with Mackenzie, so we could learn CPR. You should have seen Daddy, Kenzie and I all standing with our fake babies on a table yelling out things while our instructor watched our performances....

"The scene is safe!!" we all yell... (meaning no fallen power lines or oncoming traffic as we resuscitate our dolls)

"Are you okay??!!" we yell at our dolls, firmly tapping their feet....(Lily- this is where Kenzie and I start cracking up, and look at each other like- I can't believe we are doing this!)

"YOU-- CALL 9 1 1 !!" we all point and yell at an imaginary bi-stander.

We then proceed with CPR on our dolls, doing 30 chest compressions on their chests to the tune of the BeeGee's song Staying Alive- which our drill sergeant sings out loudly, snapping her fingers in time to the music so we can keep pace- "AH AH AH AH STAYING ALIVE! STAYING ALIVE!!!!!"

Lily, I am not kidding you- our instructor took this little class very seriously, and believe me so did we! She was not going to let us out of there if we didn't perform. And now we know how to do CPR and sing like the BeeGees!

On a serious note, we are praying earnestly that we can take you home tomorrow. I miss your brothers and sisters SO much, and I am having a really hard time with it. Mackenzie had to go home today, to get back to work at her nanny job. I cried when she left- she has been such a blessing helping us take care of you, and keeping Mommy happy, and holding you and changing you and even staying the night with you so daddy and I can get some sleep.

The only issue keeping us here is your feeding. You have to eat 33 ml. every 3 hours to be able to go home. AND keep your blood sugar up AND stay stable breathing on your own.

You have not needed any oxygen since Saturday night when the doctors gave you a blood/saline transfusion/exchange. It is a procedure where they take out blood from your umbilical cord, and replace it with saline solution. It basically thins your blood. You had what is called sludgy blood (the non-technical term for it) was too thick, and you had too much, causing your CO2 levels to be too high, and your oxygen to be low. That's why you turned blue in Corvallis without oxygen. But ever since that procedure, you have been completely breathing on your own. Thank God!!

Your blood sugar dropped a little last night...but that was because they stopped the sugar water through your iv...we are wanting you to be hungry enough to wake up, so by stopping the sugar water, you are not getting your tummy full. It took a little bit for your blood sugar to come back up (or we might have gone home sooner), but after you got a couple good feedings in, it did come up great 3 times.

You are verrrry sleepy still- being a little premature and so small makes it hard for you to wake up every 3 hours to feed. When you DO wake up, you are doing great with both nursing and the bottle. I did not want you to have the bottle at all. However the doctors explained that it is easier on you right now to supplement with the bottle, because it doesn't tire you out as much as nursing. So we start with breast feeding, and when you get sleepy we finish with the bottle.

Soooo, this makes for a lot of work...Mommy changes your diaper, takes your temperature, switches the little monitor on one foot to the other foot, so it doesn't burn you if it's left on too long, and unwraps you and makes you cold and mad so you wake up all the way. Then we teach you to nurse. It is different for you, because you need to develop the strength in your jaw to suck I hold you differently than my other babies by supporting your head and waiting til you open your mouth to latch on...and then I push your head towards me and with my other hand both support your tiny chin to help you suck, and help you nurse. It is a dance, my lactation consultant told me today- we are two partners learning how to dance together :)

If you get too sleepy (which you usually do) and won't finish nursing, we introduce the bottle (with my milk which I have been painstakingly pumping every two hours for you!) It is work getting you to finish- we are basically force feeding you. But it is worth all the effort because we are trying so hard to avoid giving you a feeding tube.

After feeding you, Mommy goes to a special room to pump. I'll spare you the gory details, Lily, but suffice it to say I end up feeling like a cow, and I endure soreness and boredom for that liquid gold;) It is all worth it for you, but let's just say it is definitely not a kodak moment!!!

After I pump, I label and store your milk so it is ready for the next feeding...which begins again in 2 hours by the time we are done with everything. We feed every three hours, but the whole feeding process- waking/breast feeding/bottle feeding/pumping...takes at least an hour.

I really need to get to sleep now, as it is almost midnight. I love you more today than yesterday, dearest Lily, and I didn't think that was possible. You are cuter every day, and I keep thinking I can't believe this beautiful baby is MINE, and I get to take her home! You are worth every minute of this crazy twilight zone experience, and I can't wait to look back on all this and say "Remember that exhausting stay in the NICU?!"

I am so blessed to be your Mama, and I am so GRATEFUL to God for sending me YOU.

All my love forever,

Your Mama oxoxo

Monday Night

Dearest Lily,

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-

Love always,

Your Mama oxoxox

Sunday, January 17, 2010

Welcome to our World!!

My precious, beautiful, perfect baby girl you are here...CONGRATULATIONS BABY LILY ANNE!! You arrived 3 weeks early! yesterday at 11:54 a.m. You are our smallest baby ever- 5 pounds 8 oz. and 18 inches long.

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

23 days...

Hello Lily!

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 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. 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

4 weeks to go...

Hi sweetie!

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 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