The story of Olivia Hope

Thursday, December 23, 2010

Happy Holidays!

I can't believe that in two days it will be Christmas! No, I'm not ready! Gifts are here but not wrapped-story of my life!!
I have been challenged this year to look at Christmas differently than I have before. Always with the mindset that it's Christ's birthday, but even more so to acknowledge the blessings that I do have. I have experienced a great loss but I have also experienced great peace and many blessings!
I want to go deeper with this but for some reason I'm half brain dead tonight!! Maybe later!

Update on little AJ: He is still at CHOP. The docs think they have found what is causing his breathing struggles and he's waiting on surgery to correct this. (Good news!!) He was supposed to have surgery today but that did not work out and no definite date has been rescheduled. Please keep praying for the Coote family. The little man will be spending Christmas in the hospital which obviously adds extra heartache to the already heartbreaking situation of having to watch their son struggle to breathe and hoping they will be able to do surgery soon.

COMING SOON!!-Pics of my gingerbread house!!

Thursday, December 16, 2010


I sat down, after a long day away, to update and share with y'all about how our Christmas is going so far and the things we are doing to chill out, get ready and celebrate. I'm going to save that for another time and, instead, ask you all to please pray.
My friend, Jen Coote, had a baby not even a week ago. I don't know much but I got a text message early this morning saying that after rushing him to Abington hospital for breathing problems he was taken to CHOP. I haven't been able to talk to Jen to know what specifically is going on but was able to get a little info from another friend. Long story short little AJ is having trouble breathing but more puzzling is why his heart rate and oxygen levels are dropping. A Facebook status several hours ago stated that they would remain there longer for testing as to figure out why this is happening. A new status update, about an hour ago, is asking God for a miracle. I'm scared and on the edge of my seat wanting to know more. That is all the info I have but please use it to pray for the little guy and his scared momma and pappa and big brother.

Thursday, November 25, 2010

My Lovies!

There are many things that I'm thankful for but the biggest, by far, are the two peas in a pod in the picture! (I say that because, as much as I would love to have a "mini-me" for a daughter she is, by far, her FATHER'S daughter!!) I don't know how I would've made it through the last year without walking this journey with them. They have been my rock, comfort, and laughter when I needed them. Thank you, Lord, for my husband and my daughters. I am so blessed.

Friday, November 19, 2010

Jeni's Splendid Ice Cream

This past weekend we took a trip to Columbus OH to visit our good friends Joey and Brendan and, my sister in-law and brother in-law, Kristi and Joel! Joey actually called us out to have my help in decorating his place! (Pics on Facebook) The house is townhome and with two single guys living there it mostly looked "crashed" in and not really lived in. After much decluttering, organizing, consolidating of stuff, cleaning, and finally decorating it definitely looks lived in now! It was a really fun project and a great time hanging out with them! I miss those boys and it was really great getting to see Kristi and Joel too!

While we were there we walked a couple of blocks down to this little ice cream shop called Jeni's Splendid Ice Cream. If you've ever been there than you know what a unique place it is! It's not your typical ice cream shop with flavors like Goat Cheese with Cognac Fig Sauce, Star Anise with Candied Fennel and Sweet Potato with Torched Marshmallows! I was in heaven with my trio of the goat cheese with fig sauce, sweet potato with marshmallow and a scoop of black coffee! YUM! Oh, and not to mention all the other flavors I sampled while trying to decide! If you're ever near a Jeni's CHECK IT OUT!

It was so nice to have a weekend away but no matter what kind of memories I'm creating my thoughts go straight to the one who isn't here creating them with us.

Monday, November 8, 2010

Little Red Riding Hood and the pumpkin!

It's been awhile (again!) since I've posted so I thought I'd quick put something up! I have the best of intentions to be a good blogger and I have a lot of ideas of posts. I love journaling and sharing my life this way but for some reason, at the end of the day when my to-do list still has a million things NOT crossed off of it, blogging is put on the bottom of the list. (sigh)


Not much is new around here. Andy's job is going well, my shows are picking up (thank goodness because we need the money!) and we are kept pretty busy with the normal every-day-life stuff!

I do have a few post ideas for some specific projects I've been working on and that sort of thing. Will I ever get to them?! I guess only time will tell!

We went trick-or-treating this past Halloween. I've never really put a ton of thought and effort into Halloween. The occasional party with friends here and there but nothing too serious. Now that we are having kids I'm getting more into it. I love the fun of dressing up and the challenge and creativity behind fabricating a costume! And don't the littles look so darn cute in costume?! I plan on putting more creativity and challenge into it for the coming years with some theme ideas. Really I guess it's all about family time for me. We were able to spend the evening with Andy's parents having dinner, trick-or-treating (which didn't last long with Gwen!) passing out candy, and sipping hot cocoa! It was a great evening of family time and I treasure those kind of times more than I ever used to.

Of course these kind of times make me ache even more for Olivia to be here with us. The "Olivia bunny" that you see in the picture is our comforting way of representing her as part of the family (which she still is because she still LIVES!) but how I long to see a 7 month old, crawling, dark-headed, and even fussy little girl taking it's place! I wonder what she would have been this year for Halloween. I probably would have dressed her up in Gwen's lady bug outfit from two years ago since she would have been the exact same age and, I'm sure, size...

It's times like this that things get rough.

Anywho enjoy the pic of Little Red and her! Yes we always take our dog trick-or-treating with us and dress her up! Doesn't everyone?!

Monday, September 27, 2010

Six Month's ago.

I didn't sit down to write a new post. I sat down to check my email (and facebook of course!!) but I glanced down at today's date...

Six months ago today I buried my baby girl.

Six months ago this evening I watched it start to rain, just like it is now, and wondered if she was safe and protected from the wet and cold.

Six months ago I got ready for bed wondering how I would EVER live life normally again.

My heart is heavy as I remember these details and many more but I am thankful for each day that God gives me with my loved ones and how He has shown me that I can live. I am thankful for the certainty of knowing that Olivia LIVES!

...but I still want her here.

Thursday, September 23, 2010

One man's junk is another man's treasure!!

So we desperately needed an new tv stand. The dinky little one we had was, first of all, unsafe for kids to be playing around and, second of all, it couldn't house our gaming systems or dvd's-most importantly our wii! I had been on the lookout for something super cheap and found this gem at a flea market for $20 bucks. I was all excited to bring it home. After telling Andy I only paid $20 for it his response was "you paid money for that?" Ok, it really was a piece of junk but I saw the potential and due to it's size I knew it would work. It was full of cobwebs, mildew and just dirt and the outside was sure nothing fancy but with a bit of scrubbing, painting, glazing, antiquing, drilling, sawing (had to cute holes in the back for cords) and some new harware I'm quite happy with the results and I finally have my Guitar Hero back!
Oh, and please try not to focus on the shelf jammed with books and kids things...I'm working on that too!

Wednesday, September 22, 2010

My Super Big Girl!

So many changes have been happening in our house, actually in our family. Mostly just milestones and with each new one brings excitement, of course, but also the tiniest little ache that there is someone missing amidst all this celebration.

In the last couple of weeks we have (FINALLY) started potting training, which is going GREAT by the way. Still a few accidents here and there but she gets it and is trying and of course we act super stupid and make a huge big deal for each poopy and tinkle that makes it into the potty!! It's fun! Along with the potty training came the big-girl bed and that's going great as well! The first dentist appointment (great as well! She actually asked them to clean her teeth again when it was all done!), starting to understand things like Andy showing her how to race cows on the wii and even just getting to the age where we can start doing fun things like painting bird houses! I will say some of the fun was sucked out of that when I felt like I couldn't leave my spot standing behind her chair with my wet rag in hand to wipe every fresh smear of paint off of my red kitchen chairs before it dried!! However, they really DO grow up so fast and I am having a blast with my big 2 1/2 year old but I miss Olivia so much. Each new development that comes our way makes me instantly think that I won't get to enjoy these things with her, or she should be here to celebrate with, or Gwen should have the privilege of showing her little sister how to do these things...

I've been going through a devotional written by Nancy Guthrie called Hope. Ironically shortly after we decided on a name for Olivia a friend loaned me a book written by the same women who lost an infant daughter named Hope and while the circumstances are different most of it hits home. I was given the devotional and it has been a blessing to work through. More recently a chapter called Rest in Peace.

"I began to see that Hope's brief life on earth and quick deliverance into eternal life in the presence of God was not cruel or tragic. It was, in many ways, a gift to her, a protection from evil to come. Not that it felt less cruel or tragic to me. I felt robbed. I felt cheated...I don't want to loose Hope. I would like to see her grow. I would like to know her as an adult. But I also know that this life is filled with pain. And I don't think it is a tragedy that she will have the opportunity to be spared from evil, from the pain of this life, and be in the presence of God. This is what I believe. It is not necessarily how I feel. But believing this makes a difference in how I feel..."

Replace Hope's name with Olivia (or leave it for that matter since we did name her Olivia Hope) and this was pretty much written for me. And I CAN Rest in Peace knowing that I will see her again. I couldn't ask for a better situation for HER. Now ME is another story but if I've learned anything it's that this is not about me. Remind me of that later when I forget!!

Please don't stop praying for us. We do still hurt. It's only been six months! Some days it seems more and some days it seems less. I picture that while Gwen is learning to not get out of her big-girl bed each nap time Olivia would be in the next room in her crib starting to sit up by herself and maybe even crawling...Each new milestone is bittersweet.

Saturday, September 4, 2010


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Well THAT mid-year resolution went right out the window!!

First of all I'm so sorry that I haven't been blogging lately. I have become consumed by summer. That's good and bad I suppose. Mostly good, however I have allowed myself to escape into vacations, gardening, trips to Lancaster, etc.

Many of you have been asking about my friend Jenn and her family. It didn't even occur to me that I ask you all to pray and then I didn't update. Noah was born on July 13th, lived for about 9 hours and went to heaven on the 14th. Andy and I went to his memorial service which was beautiful and very meaningful. As excruciating as it was to do that all over again only four months after Olivia's we were glad to be there for the Porsche family and to be refreshed with the sermon that the pastor spoke. Keep up to date with them at

My brother and his family came out at the end of July to visit for 10 whole days!! It was so great to see them and to get the cousins together. We had a blast and didn't rest the whole time! Other than that I've been a crazy canning girl, taken many trips to Lancaster and have been busy with MOPS, Pampered Chef, Church and trying to do everything I can to savor every moment I have with my family. I admit that I have definitely let some things go and have used my grieving as an excuse (I can't really think of a better word) but on the other hand allowed myself to enjoy life as I know it to not get caught up in formalities. All that to say it's back to the grinding stone for me!

How are we? Well, I guess fine. I mean can you really be "fine" after loosing a child. Only five months in tells me I don't know the answer to that yet. We are definitely doing well, learning to grieve and heal with baby steps. We are obviously functioning and living normal life but not a day goes by where I don't get sad or miss my precious daughter like crazy. It still hurts a lot and I still need plenty of prayer from you! I heard the saying recently from a friend of mine regarding Michele and her son Hezekiah. The friend said to her "you will always have a Hezekiah shaped hole in your heart...". That pretty well sums it up. I will always have an Olivia shaped hole in my heart. Nothing, no child can fill it. Even now, after a truly great day, I am tearing up just writing this. It hurts. I want my daughter.

Above is a taste of what we did this summer.
Maybe if I say it again I'll follow through this time: I want to be a better blogger so see ya soon!

Saturday, July 10, 2010

Prayer Request

Just a quick update on my friend, Jenn Porsche. Jenn is most likely in early labor and which is an answer to prayer! Little Noah (diagnosed with Trisomy 13) will be arriving SOON!! Please pray for their family...

Friday, July 9, 2010

Keep on keepin on

It's been forever since I last updated and yet I still feel like I don't have much to say. Life continues for us like normal and we are making plans and looking forward to some fun summer activities and seeing family soon!!
We are doing ok. Some days are totally fine and some days are excruciating. We had a pretty bad stretch a couple of weeks ago. Everything was just coming to a head I guess and exploded in a nasty mess of grieving. (I guess that's the best way to describe it! There really are no words.) We decided to go the the cemetery as a family and take some fresh flowers to Olivia's grave. Andy hadn't been there since the funeral and said later that he was glad we went and that we should do that more often. We wanted to get a fresh bouquet made for something special and while at the florist I could barely keep it together as the lady was asking me all sort of questions about what I wanted, size, who it was for...I finally just told her the story. *sigh*
Anyway, we are making baby steps towards healing. Somedays the steps seem so small and insignificant but I have to keep reminding myself that baby steps are the way it goes and they add up. This isn't an over night magical fix.
On another note I am SOOOOOO excited about a new blog/project that I am working on. I have partnered with dear friends...I don't want to give it away! I hope to have the new blog launched by the end of the month (AT THE LATEST).
One last thing-please pray for my friend Jenn Porsche and her family who are expecting baby Noah ANYTIME!! I blogged about her a while ago. Baby Noah has been diagnosed with trisomy 13. Obviously I need not say more about that except that he was due on the 4th so clearly it will be any day. Check out the Porsche family's story here. Also I told you about the baby girl that was born to family friends. Her name is Rebecca. She is still alive and bringing joy to her family, however her time is still very short and unknown. She is at home now. Please keep praying for them for comfort peace and strength.
My mid-year resolution is to be a better blogger. So see ya soon!

Monday, June 21, 2010

Prayer Request

My heart is heavy today as I just received some sad news that quickly takes me back to just a few short months ago. A friend of Andy's family had a little girl a few days ago that is currently at CHOP. I don't know all the details but I understand that they are keeping her comfortable right now and soaking up every second they have with her until the end. I am asking that you all pray for this family and for the baby's brother who is about Gwen's age. Please pray for comfort, peace, and strength for them that only God can give. Again, you know how to pray and thank you all for continuing this journey with us. We know despite all things God is good.

Stay tuned for pictures of our caterpillars!!!

Tuesday, June 15, 2010

Slap that Tat!!!

Just kidding!! Didn't they used to tell you to do that to help set the ink?!! Silly!!
Yes, I got a tattoo!! I don't really like it when people get new tattoos and they try their best to show it off but I'm really excited about mine and it's obviously sentimental and since you are all on this journey with me I couldn't wait to show it to you! So here it is!
I had thought about getting one in remembrance of Olivia a while ago and then I saw a similar tattoo (different word) on another person's wrist and really liked the location. The more I thought about it the more it made sense to get it! Hope-not only is it Olivia's middle name but the word encompasses everything our family is about (which is WHY it is her middle name). My wrist because of the symbolism of Christ dying on the cross and giving us that hope, My LEFT wrist because it's the "heart" side and easier for ME to read. It ended up being a gift and so we decided to get it done tonight! It was a great night followed by a picnic in the park!
So here's to my tattoo-a constant reminder that no matter what dark roads we walk we have Hope that will never go away!!

On another note Michele and I were put in contact with a new friend that is due with a baby at the end of this month that has been diagnosed with Trisomy 13. Her name is Jenn. We have gotten to meet her in person once and are looking forward to getting together with her again on Friday. Jenn is expecting a boy, Noah. Please pray for her and her family. They are doing well but obviously trying to prepare for some difficult times soon and praying for some time with their precious son. You know how to pray! Her blog is

Wednesday, May 19, 2010

Jesus Loves me this I know

I was reminded last night just how many people the Lord has put in my life over the past couple of years with the things he's brought us through. People that have reached out to me, befriended me and shown me love and support even if they didn't really know me.
A part of a conversation I had with someone sparked a thought in me. I was thinking about my precious Olivia and how much I love her. She's not here but that doesn't mean that I don't STILL love her. When I found out I was pregnant with her I was wondering what kind of love I would feel for her. This was before we found out about the Trisomy 13. How could I feel as much love for another child as I did for Gwen? How could I have as much love to give or have I already given it to my firstborn? It's not that I thought I wouldn't love her, I just didn't yet know what it felt like to feel that for two children.
When Olivia was born the love for her that I felt was totally different then what I had ever felt before. It's hard to put into words but it was different than anything I felt with Gwen. Thinking of this last night made me wonder if my love for Olivia is anything like the Lord's love for us.
Olivia, by the world's eyes, was a throw away. That sounds awful but she really was. I was encouraged by the best doctors in the country to terminate my pregnancy because she was just going to die anyway-her life didn't matter. She was mentally handicap, she had deformities and those things are ugly by worldly standards. She was not perfect and she never would have been yet I loved her so SO much. I didn't care that she wasn't healthy or perfectly formed. I didn't even want her different, I just wanted HER.
That's how God loves us. We are ugly and deformed. We are not perfect and we never will be but He loves us so SO much. It's hard to remember that when you're going through a tough time but it's true and I believe that the Lord gave me that to tell me "see how you feel about your child? This is how I feel about you."
I'm healing and moving forward but times are hard. I am hurt, scared for the future, impatient for the future and honestly wondering why He has allowed us to go through so much in the last several years. Why has our life been so hard? Will it stop now that I've pretty much gone through the worst possible pain other than loosing my spouse? I feel like it has to stop because I can't take anything else-stick a fork in me, I'm DONE!! But in all the hard times I've been through and will go through I know He loves me and His plan is perfect.
Olivia's total dependence on us made me feel a love for her that I can't express. I don't love either of my girls over the other but she will ALWAYS have a special spot in my hear that no child will ever be able to touch. I thank the Lord for this.

Wednesday, May 12, 2010

Olivia Bunny

I called the wildlife rehab center where we dropped off our baby bunny that I wrote about a couple of weeks ago. She didn't make it.

Sunday, May 9, 2010

Happy Mother's Day

A Mother's Day wish from Heaven
by Jody Seilheimer

Dear Mr. Hallmark,
I am writing you from Heaven,
and though it must appear
a rather strange idea,
I see everything from here.

I just popped in to visit
your stores to find a card,
a card of love for my mother,
as this day is very hard.

There must be some mistake I thought,
I saw every card you could imagine
except I could not find a card,
from a child who lives in Heaven.

She is still a mother too,
no matter where I reside,
I had to leave, she understands,
but oh the tears she's cried.

I thought that if I wrote you,
that you would come to know
that though I live in Heaven now,
I still love my mother so.

She talks with me, and dreams with me;
we still share laughter too,
memories are our way of speaking now,
would you see what you could do?

My mother carries me in her heart,
her tears she hides from sight.
She writes poems to honor me,
sometimes far into the night.

She plants flowers in my garden,
there my living memory dwells.
She writes to other grieving parents,
trying to ease their pain as well.

So you see Mr. Hallmark,
though I no longer live on earth
I must find a way to remind her
of her wondrous worth.

She needs to be honored
and remembered too,
just as the children of earth will do.

Thank you Mr. Hallmark,
I know you'll do your best,
I have done all I can do;
to you I leave the rest.

Find a way to tell her,
how much she means to me
until I can do it for myself,
when she joins me in eternity.

Monday, May 3, 2010


It's been six weeks since Olivia died and it feels like an eternity and like it was yesterday all at the same time. Time is a funny thing so it is! No matter what it sill moves on, whether you want it to or not it still moves on. Honestly, I want it to. I feel myself waiting anxiously to see what the next few hours will bring and it really does bring comfort to know that in time things will become more clear, in time I won't feel so heartbroken, in time we will see time the Lord will come and there will be no more tears.
I don't mean to sound depressing because in all actuality we are doing pretty good. I was starting to feel guilty about not being depressed, not grieving hard, etc, but someone brought to my attention that we have so many praying for us. I shouldn't allow myself to feel guilty, I should see this as God's blessing to us. Don't get me wrong, I do have bad days. I do cry. I do ache to have my baby in my arms and no matter how many more children I have they can't replace her. I want HER. But keep praying. Your prayers are working. We are blessed beyond what we could have imagined to have you all supporting us.

Wednesday, April 21, 2010

Our little bunny

We found this little bunny last week in our backyard. Actually Winnie, our playful golden retriever, found her. I say playful because that is exactly what Winnie did, she played with it. Unfortunately Win's idea of playing was carrying the poor little thing around in her mouth, rolling on it and even tossing it up in the air all resulting in injuring it. I didn't know what was going on until I heard loud squeaking coming from down in the yard. I saw Winnie playing and I thought she had a toy down there until I saw something moving in the grass. Of course I ran down there as fast as I could and rescued the little cutie but not before Winnie did some major damage to it. I couldn't really punish her, she had no clue and was really not trying to hurt it, she was just having fun.
I couldn't tell at first that it was hurt. I knew it was old enough to be out of the nest so I brought it up on the porch to show Gwen. After awhile it tried to walk away and I could see that it was hurt. For some reason all I could think about was Olivia. I noticed swelling in the bunny's abdomen I knew that it was really hurt and would probably die. I didn't know what to do so I put it in a cozy box that I made up and left it alone for awhile to see what would happen.
The more time that went by the more I thought about Olivia and I really needed to do anything I could for this little helpless bunny. Even if nothing could be done I had to make the best effort.
I did some research and after awhile found a wildlife rehabilitation center in the area so Gwen and I packed up and took our little patient to the "bunny hospital"! What an amazing place! It was a full house with volunteers all over feeding squirrels, bunnies and all sorts of small critters. Outside were big cages with owls, hawks, vultures and some other large birds that were being cared for. Gwen loved it!
The women behind the counter told us it didn't look good for "Olivia bunny". She thought maybe a lower intestine puncture. (Nice job, Winnie...) I was just so happy to have found someone who would do their best even if nothing could be done.
I don't know why I thought about Olivia. Even now I think it's kinda silly. I just know that God loved that bunny and He loved my daughter even more.

Saturday, April 10, 2010

God is still good

There is a twist to the story that I haven't shared yet. The week Olivia was alive we met with the genetics team to discuss what the lab found as far as her official diagnosis was concerned. Like you know they confirmed that she had Trisomy 13 but, in the doctor's exact words, there was a twist to the story. Olivia had a translocation. The non-doctory way to tell you what that means is that basically instead of a normal third 13th chromosome she had a 13/14th combination (I think). I'm still fuzzy to what exactly it is but in my understanding (again, I THINK) is that a part of a 14th broke off and had something to do with buddying up with that third 13th causing what they call a translocation. I need to do more research on it. Anyway you can imagine my blood running cold as I'm sitting there, after just having to have the what to do/what not to do discussion about treating my daughter, and hearing the doctor say that this translocation could be brand new in Olivia or it could mean that one of us has a balanced 13/14 which means we are healthy but would make this hereditary and raise our chances of another Trisomy 13 baby. It also means that it could affect our siblings and their chances of going through the same thing. I was, AGAIN, completely devastated. Dr. Z suggested that we both have blood work done and we agreed since the new responsibility to our families was added to the equation.
I'll pause here and tell you that our blood work came back normal! However, I didn't find this out until yesterday. I have been living the last several weeks, actually months, in fear of what I thought I knew. I thought for sure they would find one of us to be carrying it. I just knew it. I've been praying about it, crying about it and half sick over the fact that I could, and in my mind already did, have a greater chance of going through this again. Being hereditary would only mean that instead of a one percent chance of recurrence I would have a five percent chance. Not big but still way too high for my taste! And I read later it would also mean that I would have a twenty percent chance of spontaneous miscarriage. Having already had one miscarriage several years ago I was sure it was connected. This was my life now, so I thought.
We hadn't heard back and I dwelled on whether or not I should call and find out. Did I want to know? I finally bit the bullet, picked up the phone and sat there feeling like I was going to puke until I heard the genetics counselor say the labs were normal. I bawled, but I'm sure she is used to that! She said that with a translocation the chances are actually smaller than the normal one percent that everyone has. "The chance of it happening the first time or again is as close to zero as we can get without actually saying zero", her words! Of course I'm delighted but I find this to be very sobering. So I basically had almost a zero percent chance of this happening? I really feel like God was saying to me "I chose YOU. This was 100% my plan for you." There are so many emotions that come with knowing that. I also feel like I can really allow myself to heal now. I don't have to live in fear and this chapter is closing. I can breathe and move forward.
I'm still doing ok. I have good and bad days. Today was a good day. Yesterday was a great day after hearing that news until Satan attacked and I found myself driving to the cemetery in the dark, kneeling on the mud and crying crying crying until I couldn't cry anymore. Funny how he got me real good right after that phone call that left me feeling very happy and comforted. He's a real stinker like that.
I want Olivia and everything reminds me of her. I miss her so much and I know I will always feel this way. I know it will get better but this will always be part of my life. SHE will always be part of our lives.

Wednesday, April 7, 2010

And life goes on....?

I've thought so many times that I need to update the blog. Even now as I'm doing it I'm sitting here having no clue what to write. It's been over a week now since Olivia's memorial service. It was lovely. We couldn't have asked for a better turn out of friends, family, or a better display of celebrating Olivia's life and acknowledging God's hand in this whole situation. For those of you that weren't able to make it our pastor opened up the service and my dad preached the sermon which, if I do say so myself, was incredible. It was a great and yet horrible day all at the same time. We had a wonderful slide show made by Kevin which I hope to be able to share with you soon and Andy finished it all up by playing Amazing Grace on his cello at the graveside service which I hope to share that with you soon as well.
But time moves on doesn't it? The flowers are dying. Life still happens. There are diapers to change, bills to pay, errands to run and all sorts of things to get back to. I would say I'm managing all of that well but I'd be lying if I said that I didn't think about Olivia every second of every day. Everything around me reminds me somehow of her. Even this weather which helps me deal with my sadness but also takes me right back to last summer when I was pregnant with her and makes me sad all at the same time. I can't really explain it. I miss her more than I can express. We didn't care that she had deformities or that she was mentally handicap. To us she was beautiful and perfect and we loved her with every fiber of our being. It's not fair!!
I do feel like before I close that I need to say thanks. Thanks to you all. Thanks to everyone in our churches for prayers, meals, and other forms of support. Thanks to all of our family for walking along side us through this and for all of our friends who have done the same. I can't possibly name everyone and some of you I don't even know. THANK YOU. We have never felt for one second that we didn't have an amazing support system. I know we would not have gotten through without you all and I know that God has used you in this crazy journey to minister to us.
Please keep praying. These days are dark.

Tuesday, March 23, 2010

Service details

Olivia's funeral is scheduled for Sat. March 27th at Penn Valley Church in Telford. visitation is from 10-11 and service will start at 11 followed by burial and lunch back at the church.

Monday, March 22, 2010

My precious daughter is at rest.

Olivia is gone. I am heartbroken and my arms are empty.

Friday, March 19, 2010

Still waiting

The last few days have been crazy. Good times with family but also very hard emotional times with Olivia and talking to the doctors and just trying to get some rest. I am starting to come down from the "just having a baby" high to the "everything is sinking in and becoming very real" high. I'm struggling.
Olivia is still stable. I've gotten to hold her a few times and I just love her so much. Despite her problems I don't think I could feel any greater love for her and I ache so bad for her to off the vent and in my arms at home.
I told some of you that she was on oxygen but not a ventilator-I misunderstood. She is on a ventilator. It's not breathing for her but it is helping her get the amount of oxygen she should be getting. She came in on 100 (which is the highest) and they've been able to get her down to around 55 but that's still not good enough for to yanked off of it. A normal amount that you and I would all be breathing on our own is 20. We can see on her monitor how many breaths she is taking on her own and how many breaths the machine is giving her and it's about 1 in every 5 breaths that it's giving her. Her heart is fine and as far as we can tell all her other organs are fine too. Her doctor said yesterday, which was very hard to hear, that she thinks if she took her off now she would not survive. She ordered a treatment of nitric oxide (not laughing gas!!) which is supposed to relax the blood vessels in the lungs and help with all this breathing stuff. So far it looks like it's doing what it's supposed to be doing but how fast and will it keep helping are the things we need to wait for. Once they started the treatment she was able to go from 68 to 55 but she's been at 55 for about 24 hours.
We also had a family meeting with the doctors and the genetics team. Olivia does definitely have Trisomy 13. We didn't expect anything different but the trail that that conversation goes down is a hard one. Since there is nothing other than "comfort care" to provide we had to talk about what to do for her and what not to do for her. (Terrible conversation to ever have about your children) The doctor agreed that continuing treatment for her now where she's at is reasonable but if she would take a turn for the worse what would we want? I won't go into all those details but we know that if she would get worse there would be no turning back because of her diagnosis. They don't see any lung disease so they think that her breathing could be a result of her condition OR her delivery in which case they are treating her like a normal baby since a lot of time they get over this "hump" in the first couple of days. We will know in another day or two if she is going to be able to be weaned off of the vent or not and at that time we will have to decide what we want to do. Do we want to remove it and see what she does (yes it can be put back if we decided that) or would we want to leave it in even if it's not going to get better and then does that mean life? It's all so hard and so much to think about, worry about, cry about. I want her home but at the same time I am praying to be prepared if that doesn't happen.
What we need prayer for right now is strength and guidance. This is the hardest thing we've ever been through and looking ahead it's hard to see that light at the end of the tunnel. Also guidance for the decision we have to make and the ones we will have to make.

Wednesday, March 17, 2010

THE story...

I will try to make this quick since I am one tuckered out momma at this time.
I thought I would take a few minutes to try to tell the whole birthing story in detail.
I was waking up on and off through the night on Monday with gas....or so I thought! Really I never would have thought that I was in labor. I even imagined my mother's voice a few times "Jennifer, are you sure you're not in labor?!", but quickly dismissed it because I had had gas before and I new what labor felt like too. This did not feel like labor, not in a million years. Yeah, I was a bit uncomfortable but I wouldn't say I was in pain.
I got up a few times to walk around and just try to get some relief but always ended up back in bed to get a few more zzz's.
I woke up around 7 starting to get a bit more uncomfortable and, at that point, suspicious. I figured I would get up, take my shower, pay a few bills or something and then head off to my Dr. apt where they would be able to give me something for my "uncomfortable gas"!! (I know you guys are laughing at me right now! I really REALLY never in a million years would have thought it was labor!)
About 8 o'clock it started getting very uncomfortable and I called a friend to ask for advice. She said she thought I was probably in labor we planned for me to go get the fam up, bring Gwen over to her place since my mother in-law would have been at work already, and then head to the hospital. If it was gas they could send me home, if not we would be there!
I went upstairs and woke up Andy who went and got Gwen up and dressed and then decided to take a shower. I told him it better be the fastest shower in his life, which it was, and TRIED to get a few things in a bag and ready to go. At this point something was happening very quickly and I knew I was definitely in labor. It was probably around 8:15. I was in so much discomfort that I gave up on packing the bag and decided we didn't have time to run to E's house and my mother in-law would have to come from work to our house.
Andy started Gwen's breakfast just in time for me to change my mind again and decide that we would have to take Gwen with us to the hospital and Kathy would have to meet us there. It was around 8:30 at this time. Andy ran me out to the car and then went back in to get Gwen. I didn't get in right away knowing I would be too uncomfortable sitting there so I stood by the side of the car in MUCH PAIN. Immediately my water broke and I could feel her head coming!! (Sorry if that's TMI:p) AHHHH-I have always vowed to never yell or scream during labor/delivery but I was a screaming banshee!!! I was terrified and I could feel my baby coming!
Andy ran out and put Gwen in the car and I told him "no time", threw him my phone to call 911 and headed back towards the house. He was telling me to get back in the car and didn't understand that I knew we really REALLY didn't have time. He called 911 (which is another story since they didn't have our in-town coordinates in their system and didn't know where the house was right away) while I laid on the back porch praying that I didn't have my baby there! Gwen was getting pretty upset by now so Andy took her back in the house and put her in her high chair, ran around the front of the house to flag down the cop car, and all the while still on the phone saying things like "it's near the intersection of ____" and "she's having the baby RIGHT NOW"!
I got about a second of break time from pain so I crawled into the house, made it to the living room and laid there knowing what would happen any minute. I couldn't control anything, it was just happening. It was probably somewhere between 8:35 and 8:40.
By now there was a cop there but no paramedics. I actually thought the cop was a paramedic and wondered why he wasn't helping me. The rest of the story is almost a blur. I remember terrible pain followed by feeling her head come out (paramedics still not there!!), Andy and the cop looking at each other like 'what the heck do we do!' Andy saying "OH MY GOSH!" and me wondering what I was going to do if this baby came all the way without the paramedics!!
Luckily they came about 30 seconds after her head did and within a couple minutes she was born!! 8:52 It all happened somewhere within 15-20 minutes!! We were both taken right away to Lansdale hospital since it was closest to get us stable. I had trouble delivering the placenta so they sent me to Grandview (no OB at Lansdale) and I finally delivered it.
Olivia was sent to CHOP. I'm not really sure why since this was never in the plan but I have a few thoughts for a later time. I need to wrap up and go to bed.
I am fine! I feel good, no pain, no stitches, no HEARTBURN! Olivia is doing well too! We've had some very busy couple of days and I will take another time to tell you about them. So far we know that she is doing well, they are still predicting Trisomy 13 although her labs haven't come back yet, and they are on board with us trying to bring her home soon. We will know more tomorrow the details of all of that. I am able to have a bed here to sleep on and we're just taking it day by day for now. Keep praying for us, I know you are.
One last thing: All you home birth girls....rock on! I can say I did it and I can also say I won't do it again!! YIKES!

Wednesday, March 10, 2010

Yay spring!

The last few days have been good. I feel refreshed waking up and seeing the sun and letting the doors open a bit to air things out. It makes me feel better physically and mentally.
We celebrated Gwen's 2nd birthday over the weekend with a Wiggles themed party at my in-laws house! It was a great time with family and some close friends and Gwen LOVED digging into her Big Red Car cake thanks to a very talented team mate of mine. If anyone needs a cake let me know and I'll give you her contact info!! I had no clue what to do about getting a Wiggles cake and she saved the day! Thanks Jen!
Gwen's actual birthday was yesterday. It was the perfect day to remember our precious little girl coming into the world. The weather was amazing and Andy had off work. The day started with a Dr. apt for me. It was weird. They didn't have me in the computer but squeezed me in for a quick check up anyway and I mean QUICK. I gained half a pound and blood pressure is normal, thank the Lord! I'm concerned about this (blood pressure) because I was induced with Gwen due to high blood pressure and I really REALLY don't want to be induced again. I want to go into labor naturally. I guess I figure it will be easier on both me and Olivia. The Dr. came in right away and checked her heart which was, again, normal and felt my belly quick and then I was done. I was probably in there a total of ten minutes. Maybe they should mess up on all my appointments so I don't have to wait so long to be seen!
When I got back Andy had an apt. with his Endocrinologist and then after nap time we got some family photos taken by the talented Kevin High of Kevin High Photography. We made it as casual and laid back as possible and took the opportunity to be outside and enjoy some play time together while Kevin did his thing. I can't wait to see how the photos turned out. We've never had family pictures done and it was important to me to get some while I'm still pregnant. Just another way to document this part of our lives and the fact that it was on Gwen's birthday is cool too! Kevin will also be at the hospital to take pictures of Olivia. This is such a blessing in the fact that I haven't been able to bring myself to contact NILMDTS and now I won't have to. I don't know why that task has been the one thing I haven't been able to do at this point but I have just been dreading and putting it off while knowing that I didn't have much longer to be doing that.
Today was a nice day too. Gwen and I went to MOPS which I was really looking forward to especially since it was canceled last month because of the snow. My table presented me with a gift, an absolutely exquisite baby blanket that was woven by a local woman just for us. I don't know her but she knows our journey and wove the blanket on her loom while praying over it for us and for Olivia. It is so incredibly beautiful and I can't wait to use it. She included a very touching note that brought me to tears and after that bawl fest I had another one when all of the moms gathered around me, laid hands on me and prayed. Even now words escape me to really say much about it other than I was so touched. I know the power of prayer is great and hearing them pray and cry with me reminded me that God is still not done. None of this has been forgotten about, no one has stopped praying and more have started praying. I'm in awe to see how God has worked in this situation so far.
I have about 2 1/2 weeks left. I'm excited, nervous...I don't even really know what I am. I'm still working on my "to do" list and thinking about what I should or shouldn't do to get ready for a new baby. Keep praying. I know you are.

Thursday, March 4, 2010

3 1/2 weeks to go....

It was nice to wake up this morning and see the sun out. Not that we haven't had any sun for awhile but I am excited for spring and summer to be here and I enjoyed the reminder of the changing seasons this morning.
Gwen and I just finished breakfast (actually she's still on her second egg!) and I'm sitting here contemplating what to scratch off of my list for today. Too much in one day equals Jenny being a very exhausted girl these days.
I went to the dr. the other day. Everything was fine like usual. I saw a new dr. this time. He actually knew my situation unlike the other new dr. I had seen several weeks ago. It was nice not to hear him say things like "woo hoo only 3 1/2 weeks left!! You're almost there!" They all should really read the charts before hand since they really don't know what they could be saying to patients like me. Anyway, he did know everything and we went over a few details about delivery. One thing he said was that Dr. M told him that I wanted to do everything including a c-section if I needed to for the baby. I said yes, of course, if we knew the baby was in fetal distress I would want a c-section just like with any other child I would have. His response was "well, you know many people would choose not to have one because the prognosis is so bad." UGH!! I calmly said that I understood the prognosis but if we knew that our baby was stressed and a section would normally be suggested then we would not want to let that go. (Gwen is now eating her second piece of toast! She has officially eaten as much as me for breakfast!) He was nice enough about it and said ok but that stuck with me for the rest of the day. All I could hear was him saying "because the prognosis is so bad". I just wanted to lash back at him and say "of course I know the prognosis is bad but why would I have made the decision back 5 months ago to keep my baby if I was going to let her go during delivery???????????? Even now it gets me all fired up!
The thing is that we already love Olivia so much! Just like any other child that a mother carries and delivers the love we feel for that child starts as soon as we see those two blue lines on the stick! And then of course when you feel the movements that's a whole new realm of love for that baby, finding out if it's a boy or girl, getting a belly, etc. Each new step in this pregnancy is just one more way that I already love her and so does Andy for as much as he can being the dad and NOT being pregnant! How much more does her creator love her?!!
I might never understand why God created Olivia this way. If he chooses not to heal her I might never understand why He put her in our lives only to take her away so soon. But He has given her to us and our decision and the right thing to do is to take care of her as much as we can until He decides that her time on earth is done. He has already given us much MUCH love for her and I know when I see her for the first time my love will grow even more like it did when I had Gwen. I do get nervous about delivery but when I think about seeing her and holding her I get excited! I'm having a baby!
Well, I have things to do and Gwen is in the process of destroying her sippy cup!
Please keep praying for us. 3 1/2 weeks is going to go extremely fast and there's still things to do before that. Please keep praying for healing and pray that God continues to show me whatever I need to know/do to prepare me for Olivia's arrival.
Enjoy the sun today!

Sunday, February 21, 2010

Update continued.

I told you I would update again soon and I'm proud of myself for actually doing so!
A few days ago I got a call from the head pediatrician from CHOP at Grandview. (Does that make sense?) He was a super nice guy that explained things really well to me and, again, I felt very encouraged and supported. We came up with a plan of care that I'm happy with for what we know so far about Olivia. I'm so relieved that the people we are directly working with at this point are supportive of us and our wishes for her and not the ones that encouraged us to terminate.
Honestly there isn't really a whole lot that we can plan for her at this point except to keep her comfortable and address immediate needs like breathing and feeding. Breathing, of course, is the most immediate and we talked about what we would want them to do for her IF she was having trouble on her own. Understand that we don't have a reason to suspect that she will definitely have trouble with this, we are just what-ifing right now! (Yes, I just made up that word!) There are many options that can be provided for any baby that has trouble breathing and I told the doctor that we would want to help her and not let her struggle with this. The other issue that we really do have to be prepared for is the feeding issue. This one we know is something we need to be prepared for due to her cleft. Depending on the severity of it (and they think it looks pretty large) there is the big possibility of a feeding tube. Babies are born with clefts all the time and they do have special bottles/nipples and other methods of feeding until it gets corrected, but we know with Olivia that the cleft looks pretty severe and they are not going to be planning on fixing it since that would require surgery that she may not survive. We will try whatever works before a feeding tube, but that is a big possibility. Fortunately babies don't really need a whole lot the first 24 hours or even a bit longer so this is something that we can be patient with and see how it's going with attempting to feed her before we make any huge decisions.
Dr. C said that they would also do all the normal routine things that they do for babies when they are born. The normal shots, ointments, sucking out the junk in their noses and mouths, warming, stimulating, etc. I was happy that he just simply said that they would do all that stuff and it wasn't him asking me if we wanted them to. It's a small thing but it's again encouraging to know that they see her as a baby and not just a baby that's going to die anyway.
Speaking of that I got brave and asked him what her chances were considering all things so far. Things being that her heart is always normal, strong and consistent, she is very active and strong in the womb and the fact that all her other organs do look normal on the ultrasound pictures including her heart which tends to be the number one other defect for a baby with a chromosome abnormality. I don't really expect a specific number/percentage of her chances for survival and I do know that at some point she will die from this, but like I said in the last post I don't feel led to plan a funeral. Is this me being too hopeful and not realistic? He said that his understanding of the situation from experience, readings, etc, is that if the baby does make it to birth (remember way back in the beginning the 50% chance she would die in the womb?) and there are no other defects (which they don't see at this point) and the baby is strong then there is a decent chance that she could hang on for awhile. In what condition we don't know, but yes we could very well bring her home for however much time God has her on this earth!
I suppose this could be an answer to one of my prayers. I told you before that I have been praying that God shows me what to do and how to prepare for this and I have been feeling lately that maybe I need to start doing some things to get ready for a baby. The fact is that there is a baby coming whether she lives for a short time or longer than we expect. A baby that will need diapers and clothes and hopefully a car seat to come home in. I'm not talking about painting what would be her bedroom or anything like that. But I have felt strongly in the last several weeks that I need to get up to the attic and start hunting for the necessities. I need to have at least the bare minimum ready and if we need more, then by golly we'll get more, GLADLY! I may even go out and buy her a couple of new outfits because I really want her to have stuff that is hers. I'm fully prepared for another girl with all of Gwen's things but I have been feeling that I'm going to want at least a few things that I can say to Gwen and any other children, family, friends, this was Olivia's outfit that she wore for _____. I think this decision is the right one and I feel good about it.
So I'm going to get ready for a baby. I'm also going to get my spring cleaning done. I want to get the house back to being organized and ready for the new season. I also want to get some nice family photos taken before I deliver. Ones that show me being pregnant and Gwen with her sister. Even those are precious pictures of Olivia that I can start collecting now. The entire list of things is long and my time at this point is short, but I'm glad to start diving in. This is kinda the home stretch for me and five weeks will come fast but I'm ready. I really am. I don't know that I'm prepared but I'm ready. We've been chewing on all of this for so long now and God has brought me a long way from the grieving to the feeling of knowing that he's with us and this is all the way it's supposed to be so I guess I feel kinda like 'let's get on with it'. Actually being there may make me change my tune but there's still the excitement of having a baby!! I want to see her, hold her and meet this little one that's been giving me wretched heartburn the past nine months!! I know what I know, I'm as prepared as I can possibly be so I guess I'm ready.
Keep praying for us and for Olivia. I still think about her being healed at least 500 times a day. Oh, how amazing would that be!?
We are doing well considering all things and it's because of you all who are constantly lifting us up in prayer. I know you are because you tell me you are so THANK YOU! The situation is not good but God is good. I really do believe this and I really do have so much to be thankful for and so many blessing being poured on me every day.
By the way the other day Gwen and I were sitting on the couch together and she suddenly lifted up my shirt, waved at my belly, and in the sweetest little voice said "hi"! We have thought that she doesn't really get at all what is going on but she seems to start realizing more that there is something going on with my belly and she is starting to refer to "the baby" in there. So cute! I know she probably won't remember much due to her age right now but I am glad she's starting to catch on. She's turning 2 in a couple of weeks!! I can't believe it!!

Saturday, February 20, 2010

I MUST update this blog!!

First of all I apologize to those of you who have been waiting for an update. I have been meaning to post one for awhile, more so in the last few days. I feel like this past month has been a whirlwind of sickness in our house mixed with catching up from that and keeping busy with Pampered Chef, family, and a few other things. I'm glad for the activity though. It's nice to not just be sitting around and thinking all the time.
It's been so long since I updated last because I really don't have a lot of new news. Nothing major anyway. The newest news would be my latest Dr. appointment. I was anxious to go to the dr. this week because I had a lot of questions regarding delivering Olivia. I'm getting pretty close now (5 weeks) and with that comes thinking about the details.
My questions to him where things like if I have to be induced is that going to put more stress on Olivia? Why is her heart rate normal when I'm waiting for it not to be? What can Grandview (which does not have a NICU) do for her if she is struggling with this that or the other? Stuff like that.
I had been having second thought about Grandview because of the fact that they don't have a NICU. Yes, I know that no hospital on the face of the earth can fix Olivia's brain, but what if she's born struggling to breathe? (We are not necessarily thinking that she will, this is just a what if.) Dr. M reminded me that even healthy babies can have those kind of problems and of course they are equipped to handle immediate concerns like that.
I asked who would be taking care of Olivia in the hospital. I had spoken to our pediatrician about the situation and I got the feeling when I left that he didn't quite get what the condition was. I was told that Grandview had a pediatrician from CHOP there all the time and they would take care of her. We made plans to get in touch with him to talk about a plan of care for her when she is born.
I asked about her heart. I have been waiting to go in and find that it has drastically gone from normal to abnormal and it hasn't! Does this mean anything? Will they monitor her during delivery? He told me that they can monitor it if it continues to stay normal. Many times the heart rate is all over the place, especially during delivery, and this gives the doctors no indication of fetal distress or anything else because it doesn't follow any kind of pattern. He said if they see a normal-normal heart rate and then see a normal-abnormal heart rate that does indicate fetal stress would I want a c-section? Yes. If the case was that they could see she was in distress of course I would do whatever I could for her just like any other child I would have.
One last thing I wanted to get a different perspective on was the funeral. It's not a fun thing to talk about but it's a very realistic part of this situation. I have been praying and praying that God shows me what to do to be prepared. Whether it's plan a funeral, get some baby clothes down from the attic to wash up and get ready to use, etc. I asked Dr. M if I should be planning a funeral. Should I plan on her definitely not living more than a day or so? I told him that I don't feel led to plan her funeral at this point. He simply said don't do it. "You know you will be there at some point but now is not the time to do that." I felt very encouraged and supported by him. He said that we don't know for sure that she won't hang on for a little while and hopefully come home for a bit! Nobody is saying that she definitely will but it could happen. We just don't know. He also said that if we would have to make those kind of arrangements right away they have people that will help us with that. It's nothing we will have to try to figure out on our own, especially right after giving birth.
I have more to tell you about speaking with the pediatrician from CHOP but I've got a nap to interrupt if I want to stay on schedule for bedtime tonight! I will update again SOON and I won't make you all wait so long!
The quilt in the picture was made and sent to us from our church back in IN! I bawled like a baby when I opened it. The families all got a square to contribute and it's full of encouraging words and scripture. I will treasure it forever and be happy to have it years from now when it will be a reminder to us of all the love and support we had during this time.

Thursday, January 21, 2010

Life is hard

Life IS hard. More specifically being pregnant is hard and even more specifically being pregnant with a child that you know is not supposed to live is HARD.
Gwen has been not feeling well and the other night I was up with her, oh, like probably at least 10 times and that's not an exaggeration. It's hard when you're really pregnant to just jump out of bed and run to the next room in the middle of the night. A few times she would start crying again as soon as I crawled back in bed! Here I am waddling up and down the hall with every bone in my hips begging me to stop, trying to bend over the crib to tend to Gwen with a very large belly in the way, and if Gwen wasn't waking me up my bladder was! Needless to say LOOOOONG night. That's when it really hit me that I was miserable. I AM miserable. I ache, I have terrible heartburn, I'm tired, I'm swollen, I'm gaining weight like it's my job, Andy's t-shirts are starting to get too short and even my maternity clothes are threatening to not fit anymore. I still have two months to go and I'm miserable and for what?? To just end up coming home empty handed?
This is the point where I had the deep heart to heart with God while I was lying in bed waiting for Gwen to need me again. I told Him I didn't want to do this anymore, that I didn't understand it. That it wasn't fair for me to go through all of this for no reason; to not even have my daughter at the end of it...WHY? I wouldn't say I was mad and I wasn't crying, just more annoyed than anything and, I guess, expecting some loud clear answer that would allow me to be content and get along with my life. You'd be right to guess that that didn't happen. All He said was "I'm not done yet..." grrrr........
I do not for one second regret the decision that Andy and I made to not terminate. We were talking the other day and I was asking Andy some questions-basically about wouldn't this or that be easier, etc, and his reply was "yes, probably, but we are not making our decisions based on what is easier." He is so right and it was good to hear that reminder. We sure didn't move forward with this thinking it would be easier. God continues to show us that we made the right decision, that this is what He wants for us and that it IS part of His plan, but it sure is not easy, or good, or ok. We know that all things work together for good but someone very close to me once told me that it doesn't mean that all thing ARE good! I appreciate that so much because no matter how you slice it this situation is not good, it just plain stinks (to put it mildly). Good things have happened and I know good things will continue to happen for a long time, but it's not good. I don't like it!
We are still praying that God knits Olivia perfectly. Only He can.
We are still praying for strength.
We are still praying for our testimony through this.
Now you can add to the list that I keep my head while being a miserable pregnant woman!!!!
On another note Hezekiah's funeral is this weekend. I think most of you have been keeping up to date with Michele's blog. He passed away a week ago after living and bringing much joy for a short week. I am going to the funeral and with this brings so many other emotions. Please please pray for Michele and her family for obvious reasons. Please also pray for me. I am looking forward to seeing Michele again however the circumstances lead to some pretty heavy stuff for both of us. I think this might be pretty hard for me but I also think it's necessary and will be good for me too. Meeting her and getting to know her has been a real blessing and I look forward to being there for her and I also look forward to seeing how God has used their family as a very bright light through all of this. Please pray for us and for the others that will be there that might not know Him-that they will see the light.

Friday, January 8, 2010

God is good.

I had an absolutely delightful time visiting with Michele and Hezekiah this afternoon! I planned on staying only an hour or so but ended staying for almost three! So many great things happened I just couldn't leave. Michele is doing really well! Other than a little bit of soreness from the surgery she is feeling good and looking forward to going home tomorrow WITH HEZEKIAH! This is amazing considering none of us were really planning for him to go this long! He is doing so well. Keep in mind he is not better, he still has his condition but Michele wanted to have time with him and that is what God has done!
It was great to see her again, but more than that I experienced God's goodness in a way I never had before. You all know that Andy I and I have been through quite a lot in the last couple of years and I have seen God do amazing things in our lives. He's taken care of us and provided for us in ways we couldn't have imagined at the time, but this was different. Here was this wonderful, godly woman who knows she doesn't have long with her son, but was nothing more than thankful and praising God for the time He has given her with him! She has gone through so many emotions in the last few weeks but all I could see was joy! It was great! I left feeling like God was telling me "see, I really can and will get you through this. Don't be afraid. I can still bless you, just let me." I can only pray that I have time with Olivia too.
I just want to say that the staff at the Women and Babies Hospital in Lancaster gets two thumbs up from me! Michele introduced me to a few of the awesome nurses that were taking care of her and, after learning about Olivia, they also reached out to me! Even though they new that I wasn't delivering there they still gave me their names and numbers and the numbers of other people that could talk to me or point me in the right direction for anything I might need. Here is the real kicker. At one point the chaplain and a dr. came in to check on Michele and Hezekiah. They were both part of the palliative care team there and again Michele introduced me. The chaplain, a very sweet and sincere woman, looks at me and says "wait, I've been praying for you. Your baby is Olivia." She turns to the dr. and says, "this is the girl I told you about." They knew me and my story but I didn't know them. They didn't know about the blog so I don't know how they had heard of us. They didn't really know either, just hearsay I guess. They also offered to do anything they could for me.
God is good. He is showing me new ways every day that He is walking right along with me. I don't know the outcome of all this. I don't know what the future holds but I know that this entire story, from beginning to end, is His work in our lives. He has designed this whole journey to work according to His plan for us. I am so grateful tonight that I know Him and I know that I do have HOPE no matter what happens.

Baby Hezekiah

Hi friends. Baby Hezekiah is doing well!! His condition remains the same but he is wowing them left and right with all he can and IS doing!! Michele said his body is totally working and he is doing everything he should be doing as a newborn! Michele sounds well and is feeling well considering the surgery. She is so happy that she has this time with him and providing nothing turns for the worse they are planning on bringing him home tomorrow!! I plan on seeing them this afternoon and I'm really looking forward to talking with her and seeing this little miracle bundle! I'll update more later. Thanks so much for the prayers.

Wednesday, January 6, 2010

Please Pray

Hi friends.
I just want to ask that you all take a minute (or several) to pray for Michele. She is having her c-section tomorrow morning. Needless to say she is scared and so many other emotions. Her surgery is scheduled for 8 am. If you're new to this blog I wrote about her a couple of posts ago. She is a friend who is going through something similar to what I am going through. Her family is also going through a hard time with this. Pray for the kids that they will feel God's arms wrap around them and be comforted. Pray for Michele and her husband that they will also feel God's arms and peace that only He can give them. I will let you know what I know as soon as I can. The baby's name is Hezekiah.

Monday, January 4, 2010

My doctor's visit today

I had a doctors appointment today. Just a normal checkup. Everything is still fine...well you know it's not FINE but pregnancy related it's fine. I'm growin' and gainin'....boy am I gaining! I guess it's from all the Christmas cookies!! Anyway Olivia's heart rate still seems to be consistent and in the normal zone. I'm just waiting for the time I go in and it's drastically different, whether high or low, because this is what I'm told tends to happen with babies like Olivia. Their heart rates aren't really a good indicator of anything that could be going on, distress etc, because they are usually all over the place for no reason. This is why they tend to not even monitor the babies during delivery because it wouldn't really tell them anything.
I asked about other ultrasounds. Dr. M said if I wanted one he would gladly set it up but there really, medically is no reason. Nothing they would see at this point could be helped. He used the example of if she is small (which, judging by the fact that I'm sure I have a little baby butt up against my rib cage, I'm sure she is not! After all she IS a Fretz!) because of the tendency of strange heart beat patterns and the fact that her brain is not developed right there would be no way to know why or intervene. It is really truly a waiting game right now. I agreed that I didn't really feel the need to have one. I have plenty of pictures from the previous ones and, knowing me, I would probably get my hopes up to see that things had turned around and she was fine and potentially be heartbroken when they weren't. If this was something like a heart defect or something that we would monitor and study to be prepared for treatment when she was born that would one thing. Unfortunately it's not like that.
I also asked AGAIN (ugh) about the likelihood of this happening again. No one can say that it absolutely won't happen again, obviously. I've learned that everyone has at least some chance of a situation like this happening and when it does happen that chance goes up about 1% of it happening again. It still leaves your chances very small so don't worry! We will test from the placenta when Olivia is born to know what all was really going on but if it's a true Trisomy 13, and all signs point to yes for that, then most likely it's just something that happened. If we are carriers of something genetic that caused it we will know that later, but even so it doesn't mean that there is a big chance of it happening again and they are saying that right now we shouldn't worry about that, nothing indicates it yet.
I don't know why I can't get off of that. I grieve for Olivia, I hurt, I'm concerned about her but I also can't shake this very real fear that I am going to have to go through this again. I don't know why. I think it's just the evil one using this way to attack me. He knows I'm a worrier by nature and he uses the good days to pop this little though back in my head. I just keep telling myself that God has blessed me with a healthy beautiful little girl and He has also blessed me with Olivia. And if He wants to bless me with more children after this than He will, and that's that!!
Keep praying. We love you all and your love and support of us has been very evident in the past couple of months. God is using you all to carry us right now and He has shown us a lot about you, about us, and most of all about Him.

Sunday, January 3, 2010

Happy 2010?

I was thankful for the Holidays. I rushed around until the last minute getting gifts bought and wrapped, but even so it was nice way to stay busy, see family and have fun with Gwen. I also thought a lot about Mary and how she gave birth to her precious son only to give him up to a horrible death and what that all means for us. Now that they're over all I can think about is what is yet to come. All of the "Happy New Years" didn't really have the same charm as they have every other year. All I can think about is "is this going to be the worst year of my life?" I feel like I've had way too much time to deal with this. I have known that Olivia is sick for two months and I have a little less than three months to still know. All this knowing has brought me to a point of almost numbness sometimes. A few of you have maybe heard me say this but sometimes I KNOW what is going to happen but I'm not sure I really BELIEVE it. I'm not in denial and I don't think the doctors are wrong. I've seen the evidence myself. But to try to think ahead and be prepared? It's like I don't really believe this is happening. And I sure don't feel like I'm carrying around a sick, weak baby. She is very active and strong but I'm told this is completely normal. I pray all the time that God give me what I need to be prepared for whatever happens and I still find myself in this state of unbelief. The only thing I really know is that God is saying "I'm not done yet". I don't believe that means He is telling me that everything will be ok with Olivia, I just believe that He is telling me that no matter what He's not done yet-with her, with me, and with anyone that this situation touches. I do find comfort in this and I do know that He can take her and still bless us in ways we can't imagine but it's still hard to be excited about 2010.
I have a doctor appointment tomorrow. Just a normal check up. To answer some of the questions that a lot of you have had-I don't know if I'll have any more ultrasounds. They've kinda given me the vibe that since it's really just a waiting game and nothing can be done it's all about me now. So, you know, the normal belly check, weight, blood pressure, all that, but not so much anything for Olivia except checking her heart beat. I understand this since there is no intervention for her affliction. I wish that wasn't the case but we know what we know and any other procedures at this point would probably just add stress. I'll find out more about this tomorrow and some of the other questions that you and I have both come up with. We are still praying for a miracle-for total healing for Olivia.
One last thing- I had the lovely opportunity to meet a new friend this past week who is going through something quite similar to what I am going through. Her name is Michele and I met her by contacts through my dad's church. Her baby boy was due a few days ago and Michele found out about a month ago that he has anencephaly. This is not what Olivia has except the fact that it affects the brain and head. Like Olivia, Hezekiah is not going to live long and Michele and her family have already made all the appropriate arrangements and as you can imagine are, well, just waiting really. Please pray for them. Her and her husband have six other awesome kids and this will be hard on all of the them. Pray for peace that passes understanding, strength and comfort and remember that her children will grieve hard as well. She has given me permission to pass on her blog info. Check her out at
Until next time keep praying for the things that I have mentioned previously:
God's healing for Olivia (and Hezekiah for that matter)-we know that this is quite possible and that God could choose to lay on us an amazing ministry with this miracle.
We also know that our ministry may better be used if He chooses not to heal her so we pray that God gives us all we need if He chooses not to do this.
No matter what we still need strength and peace and comfort right now
and last of all keep praying that this pregnancy will continue to stay healthy and "normal".