My Heart For Magdalyn

Baby Clothes

2010-03-18T19:11:00.000-07:00

I guess I always thought they were cute...looked forward to buying them someday. However, now I find myself DRAWN to them, even though I have there is no one to wear them and dirty them up and out grow them too quickly.

This evening I was at church and my friend's 2 year old ran by looking so handsome in a pair of jeans. I love jeans on kids. They look SOOOOO cute. This however led to me being so upset and crying so much that I ended up leaving about 15 seconds into the very first song.

Today has been a rough day. I just thought you should know.

Life Goes On

2009-12-17T18:50:00.000-08:00

I would like to write a beautiful eloquent post...but it's not in me right now.

I would however like to let you all know that I am doing well. There is plenty that I could complain about, but I won't. Losing Maggie has taught me to look towards the positive. I try to live each day soaking in the blessings that God has surrounded me with.

This year has certainly been a bumpy one...but I take each day as it comes and I know that the Lord has a plan for me...it is not for me to whine about. He knows what is best for me. As long as Brian and I keep our eyes on Him, we'll be just fine.

Kelli the Humpty Dumpty Fruit Cake

2009-09-28T18:25:00.000-07:00

8 months and 1 day.

I was doing really well for several months, but I've quickly come unraveled in the last couple of days. I'm a mess. Despite the fact that I have a full time job, I feel like I have too much free time. And in this free time I think. And when I think I fall apart. The pain is so strong that I can hardly breathe. My eyes water up....but I don't cry. It is as if I am afraid to let myself let the walls down....afraid that I'll never be put back together again. So instead I sit on top of the wall...teetering...balancing.

My heart feels heavy and empty at the same time. I am so blessed to have Brian. He is such a wonderful husband. But I feel so incomplete. My “baby fever” is back in full swing...and Brian has more than given the thumbs up. But I can't let us try again right now. The economy totally bites. He still has one semester left of school. Having a baby is EXPENSIVE. I'm being too practical. I want our family to grow....one cat and one dog are not cutting it.

I'm an emotional fruit cake right now. Just wanted to let you all know.

hitting a brick wall at 70 mph.

2009-06-15T17:17:00.000-07:00

I want so badly to write...but I don't know what to say.

I'm currently reading Waiting with Gabriel. It's a story written by the mother of a baby boy who was diagnosed with Hypoplastic Left Heart Syndrome, and his parents being forced to chose between endless surgeries or "comfort care" that would result in his passing a few days after being born. I've only read 29 pages so far yet they seem like a memory of mine, pulled out and written on paper.

Magdalyn's diagnosis was even more severe than Gabriel's. Hypoplastic right heart with pulmonary stenosis and dextrocardia. They never did an autopsy, so we can't say for sure if anything else might have been wrong or how severe the heartblock was.

I can't imagine the pain the might have endured if she had lived longer. If given the choice, which would I have chosen? As it is, her very very brief time on this earth was spent in surgery. We were told she would die almost immediately if she did not have the pacemaker put in. She would not survive. This was her only chance. She died an hour after surgery.

It's strange the things I remember....they are memories so strong that they almost bring me to tears.

We were in our room waiting to be told that we could go see her. The doctor came in and told us that we needed to go now...or we might be too late. We were waiting to get clearence to move me, since I had just been split open and I was not supposed to be in a sitting position. My nurse walked in and said she wasn't waiting anymore. I don't remember getting from the bed to the chair. I just remember that my nurse was pushing the wheelchair so fast that I felt like she was almost running. I was not upset. I was excited. I was about to see my baby girl for the first time. When she was born they rushed her off so quickly that I never got to see her. I never saw my baby alive.

When we entered the NICU I saw the team of doctors, there were nine or ten of them around her. Just standing. Then I heard it...the sound of a flat line on a heart monitor. You hear this sound all the time on TV and in movies. It is now in my head as the worst sound in the entire world. I wasn't told by a doctor while I was in a waiting room....I wasn't standing arounding, pacing back and forth, wall to wall....I was trapped in a wheelchair and the sound was like being in a car and hitting a brick wall at 70 mph.

Surely there were other babies in the NICU, but I don't remember seeing any baby in that room but my daughter. There must have been nurses and parents...but I don't remember it.

My baby is in heaven. She is with God. She is not in pain. I try to take comfort in this. But sometimes...somedays...I just want my baby to be here with me. And today....today is one of those days.

Yesterday

2009-04-17T10:55:00.000-07:00

Yesterday was Maggie's due date. How surreal. I'm doing quite well in my day to day, however these "landmark" dates still feel like a ton of bricks have landed on me.

A church sermon a couple weeks ago stuck me pretty hard, the pastor was talking about Mary and Joseph on their way to Bethlehem, and how hard the journey was with her being 9 months pregnant. It made me realize that I should have been 9 months at that point, and that I wasn't. I should have been waddling around and complaining about how much my back hurt, how my feet were so swollen that my shoes wouldn't fit. I should have been wondering if God would shake his finger at me for wanting to wear house slippers to church.

It hit me hard. I cried. A lot.

Here is a link for a song that I love. It makes me cry every time I hear it. And yes, sometimes I listen to it when I feel like I NEED a good cry. Go Listen!

Wasn't that great? Are you crying now? Have I ruined your makeup? If so, I'm terribly sorry. However, it was completely worth it. I LOVE that song, and I hope you do too.

I got my pictures back from Michelle!!! There are far too many to post here, but I'll get a slideshow posted on here soon. I also set up a Shutterfly account where you can view them all.

I will never be able to show Michelle just how grateful I am; I pray that the Lord will bless her, just as she has blessed me.

Love to you all,
Kelli

I want YOU in Maggie's book

2009-03-31T15:31:00.000-07:00

So I'm starting on my Maggie book soon. I'll be working on it on Picnik and Shutterfly.

I saw the cutest thing....and was thinking maybe I could get something similar going for Maggie's book.

The link goes to a page that shows some ADORABLE pics. I can't really explain it, just go check it out!

Anywho, so like I said, I would LOVE LOVE LOVE to do something similar for the book.

Make one and send it to me! You can be in Maggie's book! I would love this because it would be a permanent reminder of the people who have been with me supporting me on this journey.

You can e-mail me Kelli_Mears@hotmail.com

It's Spring

2009-03-23T22:26:00.001-07:00

It feels like time has flown by.....it's been nearly 2 months. So much has happened....

Michelle finished my pictures....they're beyond amazing. Here's one, I'll post the big slide show later.

I forgot just how tiny she really was....she seemed so big and heavy to me!

I've been keeping very busy lately. Just moved halfway across the country...looking for a new job....reading lots....

To those who have sent me books -- thank you. thank you. I didn't realize how much I needed them. They all have a slightly different perspective, which has helped more than I even knew.

It is spring.....flowers are growing, the grass is green....there are leaves on the trees. I wish I could show her. Sometimes it makes my heart ache; to know I'll never play in the park with her, I'll never buy her a new spring dress, take her to the zoo.....

BabyCenter says I should be 36 weeks now....that's so strange.

Just wanted to give yall and update...I'm still here....settling in to this new life.

Love to you all....I wish I could hug you and tell you how much you mean to me. Each and everyone one of you.

-Kelli

I can't help it...

2009-03-06T14:24:00.000-08:00

I'm a mom. I can't help but show off pictures of my beautiful daughter. Here's the birth announcement that Michelle made for us.

get your kleenex ready...

2009-03-02T08:34:00.000-08:00

Michelle (my Now I Lay Me Down to Sleep photographer) is seriously amazing. Here's a slide show she made with a few of my maternity photos.

Also, here's another pic of my darling Magdalyn. Michelle is still working on the images from the hospital, but she always seems to know when I'm needing to see my baby girl and another picture will be right there waiting in my inbox.

I am so so SO very grateful to her and for the work of Now I Lay Me Down to Sleep.

Tacky but truthful and One Month Later

2009-02-27T11:20:00.000-08:00

Many people have asked me -- "What can I do to help?" or have said "If there's anything I can do for you, don't hesitate to ask."

Here's the tacky but truthful answer...

You can buy me a book.

I currently have a wish list of almost 20 books on Amazon. This list comes after looking for about an hour. I'm sure I could find more, and I'm sure that you have more to suggest (And please do!!) I would love to be able to buy all these books myself...but I can't.

Many of you have said -- "I don't know what to say. I don't know the words to make it easier."

Here's a solution that makes everyone happy. You can help me. I can get help.

*************

"One Month Later"

Today is February 27th...She would be a month old today...

It feels like it was a lifetime ago that I was in the hospital. And yet when I think about her, I can still feel the weight of her body, and what it felt like to have my lips pressed against her forehead.

It wasn't that long ago...

I've been keeping busy in the last few weeks. I've traveled to Indiana to spend a week with my sister. I stayed in Missouri for a week with Brian's family. It has been wonderful.

However, I wonder, am I keeping myself too busy? Am I keeping myself occupied so I don't deal with this? So I don't grieve fully? I need to. I know this. But I don't know the answer.

Back to the first part of this blog. I am hoping that if I start reading some books it will push me off the edge and force me to deal with this. I want to deal with this. But it is so easy to distract myself. To think of all the upcoming events and details.

I think of her often. Every day. Every hour I am awake. I smile. I have fond memories. This is not the part I have problems with...

I need to grieve my daughter. I do from time to time - Hearing a certain song that makes me think of her; overhearing people talking about the joy of bringing their new baby home. There was no joy in bringing my baby home. She came home in a green velvet bag.

*************

I never know quite how to end these blogs. For me this blog is a glimpse of my thoughts and emotions on a computer screen. This blog is a window into my grief. To "properly" end a blog entry makes me feel as if I am telling you that my "grief session" is over for the day. This is not true. My grief is unending.

So if you've ever wondered why each entry as of late has seeming just stopped out of nowhere; now you know.

Why now?

2009-02-14T13:30:00.000-08:00

***Disclaimer: This post is nothing but a rant. It'll probably only be up for a few hours til I regret posting it...oh well here it is. ***

People have been coming out of the woodwork lately to tell me how exciting it is that I am about to have a baby.

...uh....

This puts me in a very awkward place. I have NO IDEA how to respond when people say this. I either LIE or I make them feel TERRIBLE. Not to mention that it doesn't exactly put me in a great state of mind. I miss her enough without being reminded of the fact that I should still be pregnant. That I would still have two months to go til I'm due. That I shouldn't have seen her yet. That she should be ALIVE.

Instead she is ashes. In a green velvet bag. My baby should be moving and kicking inside of me. But she's not. Thanks for accidentally reminding me.

I don't want to be angry. I don't want to make people feel bad. I don't want to be in this position.

I miss my daughter.

This is my new life...I am now that woman.

2009-02-05T16:45:00.000-08:00

This is my new life...I am now that woman...

Took my first trip to the grocery store last night. I was not ready. There seemed to be far more babies there than usual. Sometimes I forget she's gone; when I remember the pain comes on so strong I can hardly breathe. I am that woman who is crying in the middle of the frozen vegetable isle. The one that you pity because she can't "handle her emotions in public".

This afternoon we went to Best Buy. Still not ready. First there was a woman holding a baby that couldn't have been more than six months old. Just when the wave of panic started to hit me, he was there to hug me. I honestly don't know what I would do without him. Just as I felt myself start to calm down, I heard a voice behind me, "you better shut your mouth." The little girl had been wimpering (not crying loudly or screaming, or trying to get out of the cart). She couldn't have been more than two. Seriously? Why did he get to keep his daughter and I didn't? How can someone be so mean to their child for no reason? This made me livid. LIVID. I wanted to yell at him. I wanted to tell him to appreciate her....be thankful she was healthy and alive. If Brian hadn't been there, I might have actually said something. He keeps me rational. I got so upset that I turned into that woman again...I was crying in the middle of the bargain CD isle.

Awhile later I joked with Brian about how if that guy didn't want her, I'd take her. But the truth is, I don't want her. I don't want a baby. I want Maggie. I want MY DAUGHTER.

We went to the funeral home yesterday. We had to legally identify her body. I had been both dreading it and almost looking forward to it. I wanted so badly to see her again. We were told "you can look but you can't touch." What? What do you mean I "can't touch"? She's mine. She's OURS. This hurt far more than seeing her. I wanted to kiss her tiny hands. I wanted to feel her silky hair on my fingertips. I was terrified right before they opened the door....and then...there she was. She was in a tiny pink velvet casket -- it was the size of most of the shoe boxes in my closet. She was so much tinier than I remembered. She was beautiful.

I wonder what she would have looked like growing up. I wonder if she would have picked soccer or ballet? Would she have liked cats or dogs? Would she have been afraid of bugs or begged me to let her have a pet snake? I will never know. And I wish I did.

This is my new life...I am now that woman...

To all of you who have reached out to me, thank you. I am not ignoring you....and I am so very grateful you are there. Please don't turn your back and walk away....I'll be there soon, but not yet. Keep bugging me. I'll come around eventually.

Love and heartfelt thanks to you all,
Kelli

My favorite poem.

2009-02-02T13:56:00.000-08:00

This is a poem that I read many years ago when I was grieving the loss of a friend. It has stayed with me always and has brought me much comfort in the last week as I know it will in the coming days, weeks, months and years.

Adapted from Unknown Author from the original Do Not Stand At My Grave and Weep by Mary Frye.

Do not stand at my grave and weep.
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glint on snow.
I am sunlight on the ripened grain.
I am the autumn rain.
When you awake to the morning's hush,
I am the swift uplifting rush,
Of birds circling in flight.
I am the stars that shine at night.
Do no think of me as gone.
I am with you still - in each new dawn.

Come and gone, but forever in our hearts.

2009-02-02T12:14:00.000-08:00

It has been the longest week of my life. Every day feels like it stretches on forever. I have been very blessed to have an amazingly wonderful and abundant support system. Thank you for all of your comments, thoughts, prayers, voicemails and visits.

In this past week time has ceased to make sense; days and nights....minutes and hours.

Tomorrow will mark one week since my daughter entered this world. It will also mark the day she left. We prayed that she be big and strong. Her daddy talked to her in the nights before her birth and asked her to be big and strong...and she did as she was told. She entered this world at 3 pounds 3 ounces and was 18 inches long. That's big. According to Baby Center she should have weighed less than two and a half pounds (some of this weight was fluid on her abdomen, but not THAT much) and should have only been about 15 inches long. My mother suggested that maybe I was further along than we thought. I know this is not the case because she was weighed and measured several times between 20 and 24 weeks and she always measured very SMALL. In fact, based on measurements from back then, the doctors thought I was actually about a week LESS further along than we thought. She fought hard and she grew big and tried to be very strong in the last month.

I'm not sure what happened exactly in the end. We didn't speak to the doctors afterwards, and even if we had I don't know that I would have remembered it. Shortly before her passing, a doctor came in and said that she was not getting enough oxygen to her organs and that were about to give out and shut down. But when the nurse called my mother she told her that Maggie's heart has simply stopped beating. As of right now, it doesn't really matter to me what happened. All I know is she is gone. She is not here with me. I cannot go to the NICU to see her. My daughter is gone.

Grief is like the ocean -- it ebbs and flows and there is the occasional tidal wave that seemingly comes from no where.

I miss my daughter.

I miss the weight of her body in my hands. I miss the smell of her skin. I miss the feeling of my lips pressed against her forehead. Her perfect bow lips and her tiny monkey toes. I miss my daughter and I would do anything to have her back for only a minute. I would do anything to be able to look into her eyes and tell her that I love her.

I will never know what her eyes looked like. I will never see her smile...hear her laugh. I will never feel her tiny hand wrapped tightly around my finger. Never put a band-aid on a boo boo. Teach her to ride a bike. There will be no dress up. No tea parties. No ballet recitals. No hugs when her heart has been broken. No tears at her wedding.

I miss my daughter.

This is not the way it should be. Twenty-three year old women should not have to decide burial or cremation for their child. Babies are not supposed to die. Women with abusive boyfriends and prostitutes with drug problems have healthy babies. Why not me?

God has a plan. He knows what is best. He would never give me a burden I cannot bear. He would never give me too much. He would never leave me alone to deal with this. I know this. I know He is in control. But it doesn't make it hurt less.

I miss my daughter.

Many of you have asked about a service for her. The answer is -- I do not know. The funeral home called this morning to let us know that her cremation will be taking place on Wednesday. I wanted so badly to have her body donated to medicine...for some worldly greater good to come from this. All of the organizations said she was too young and too small. This hurt me deeply. They did not want my daughter. It was like she was picked last for kickball. Like she didn't get an invitation to her friend's birthday party. Like no one put any cards in her homemade shoebox card holder in her class on Valentine's Day. It made me want to hold her even tighter and never let go. I wanted her.

To my darling Brian,

Thank you so much for being... for being my everything. Your love has been the best medicine through this. You've been both my rock and my pillow at the same time. Our sweet Maggie is lucky to have you as her Daddy. You've loved her since the beginning and she knows that. She heard every word and felt every kiss.

I love you,
Kelli

Meet Maggie

2009-01-30T17:35:00.000-08:00

Hello again,
It's Fran updating for Kelli one more time. Kelli is on her way home from the hospital right now. She wanted you all to meet Maggie. She said she'd try to write a entry soon. Here is her little girl, Miss Magdalyn Grace.

She's Gone

2009-01-27T10:19:00.000-08:00

I don't have all of the details yet, but Maggie went home to be with the Lord a few moments ago. Please pray for Kelli and our family as we grieve the loss of this beautiful baby girl.

***Update***
I just spoke to our mom and she said that Maggie's organs failed. Kelli is with Maggie now. Her photographer is on her way back to the hospital to document their time together. Please continue to pray for Kelli.

Kelli, we love you so very much. Maggie was one lucky little girl to have you for a mommy.

She's Here!

2009-01-27T07:54:00.000-08:00

Magdalyn Grace was born at 8:53 a.m. central time this morning. As of now, I do not have weight and length for her. She came out pink and crying which are both wonderful signs that she is strong. They immediately took her over to the children's hospital for observation. The nurse said someone should be down within the hour to update Kelli on Maggie's status.

Kelli is doing well. I spoke with her briefly on the phone. She is uncomfortable due to the c-section, but in good spirits and hungry. She didn't get a chance to see Maggie before they took her away, but the photographer (Michelle) took several pictures and apparently captured a great one of Maggie that she was able to show Kelli. I can't wait to see photos of this sweet baby girl!

No one is saying at what point Maggie will have her pacemaker placed, but I'm sure it will happen sooner than later. Maybe she'll surprise us all and be healthier than anticipated. Wouldn't that just be fantastic?!

So for now, we wait. Keep praying!

Today's The Day!

2009-01-27T05:36:00.000-08:00

Today is the day we've all been waiting for. Miss Magdalyn Grace will join us today!

This is Fran, Kelli's sister, updating her blog as the day's events unfold. I live in Indiana, so I unfortunately can't be there today. I will be getting all of my information from our mother via the phone and then passing it on to you.

This is what I know so far:

Kelli arrived at the hospital this morning at 6 a.m.. They started her IV and attached fetal monitors to her. She is scheduled to go back for her spinal and c-section at 8 a.m..

The photographer that she is using from Now I Lay Me Down To Sleep arrived a few minutes ago and is taking photos and discussing plans. The doctor is allowing the photographer into the OR to capture Maggie's first moments of life which is such a sweet blessing to Kelli.

I will post more as the news comes to me. Mom said that Kelli is remarkably calm, but eager to meet her little girl. Please continue to lift Kelli and Maggie in prayer.

Not today maybe tomorrow (well, not ACTUALLY tomorrow.)

2009-01-22T19:50:00.001-08:00

So it seems as though maybe the Albuterol has finally started working. We went to see Dr. Tabor today and her heart rate was up up up. It was at about 120, which is twice what is has been.

However, her abdominal fluid was also up. This is not good because the longer there is fluid there the worse the risk of either her heart or her liver going into failure.

I'm having mixed feelings about not delivering today. I thought that I would be relieved, but I'm not. I thought I would be happy that the Albuterol is working, but I'm not. All this waiting and not knowing is starting to make me very anxious. I'm getting worried that we're going to wait too long and it will be too late.

In other news, I had a maternity shoot with Michelle Clynch from Now I Lay Me Down to Sleep. She was amazingly wonderful and sweet. At this time I don't have her personal website address though I'll be sure to update as soon as I do!

Also, I was going to wait till I had a picture of it to show off, but I'm not sure when I'll get the pictures from the shoot. I received a GORGEOUS necklace that was made for me by DeAnna Cochran. She does amazing work and it is for an great cause so I suggest you all go check her out! You can see more her her work here. She is an amazing woman and I am so blessed to have her in my life.

Back to business -- My next appointment is on Monday. I'm almost HOPING that he decides to deliver that day. As I said I'm getting anxious now and I am feeling like extra "cooking" time is no longer worth the risk.

As always, I'll update again when I get back on Monday -- or I'll try to have someone update as soon as they can.

Love love love!
--Kelli and Mags

Where's my decoder ring??

2009-01-18T15:48:00.000-08:00

I saw Dr. Tabor this morning and as usual he was brief and cryptic. Dr. Tabor used the phrase "in case we have to deliver" in reference to my Thursday morning appointment. The medication they have me on doesn't seem to be making the difference they would like, so I wouldn't be surprised if he decides to make Thursday the big day.

I'm absolutely terrified and trying to keep calm...but I'm not ready for this day to be here yet. Right now I feel like she's safe and warm and I can protect her...like I am helping. However, if they take her then it's up to God and their (hopefully) very capable hands.

Keep us in your thoughts and prayers this week; there's no where else I'd rather be!

-Kelli and Mags

Still cooking

2009-01-15T18:33:00.000-08:00

I went in today to see Dr. Tabor. He has upped my dosage of Albuterol from 1 cc every eight hours to 2 cc every eight hours. Wish me luck!

About a month ago there was approximately 3 mm of fluid in her abdomen. Since then it has gone up and down quite a bit. When I asked him today he said that it was at about 4 mm. I noticed that it looked like quite a bit less than on Monday. He told me that he thought it had been at about 6 mm on Monday; however after looking at the chart he told me it was actually at about 9 mm. No wonder he looked so panicked! So her fluid is back down (though we aren't sure if this is the Albuterol or God or both!) and still cookin'.

I'll see him again in a few days and then again later next week. Hopefully he'll continue to give us the green light for more time.

After several suggestions I have contacted an organization called Now I Lay Me Down to Sleep. Emailing them turned out to be MUCH harder than expected. It made me feel like I have given up on my darling girl; which of course is the furthest from the truth. I'm hoping for the best and putting my trust in the Lord, but I suppose I still need to be as prepared as possible for the unknown.

Dr. Tabor informed me that I will be delivering at Harris Methodist and after Maggie's evaluation she will be transported over to Cook's for her pace maker to be put in. Subsequent surgaries will most likely wait until she has gained some weight and strength.

I have a few new photos and I promise I'll get them up soon...feel free to harass me until you see them!

As always thank you so much for your support and prayers. Each of you are like a candle lighting this dark path.

Love to you all,
Kelli and Maggie

The Homestretch

2009-01-14T08:06:00.000-08:00

I went to see Dr. Tabor on Monday. The news was not good and he didn't say much. In fact, after only a few minutes he left to call Dr. Roten (pediatric cardiologist/ surgeon). We are now trying to "buy some time". He gave me a series of two steroid shots to hopefully help her lungs develop faster. He has also put me on Albuterol every 8 hours to hopefully speed up her heart. Her heart was previously pumping fast enough to keep up with fluid, however now that she's bigger it's not enough. The medicine makes my heart race, I can't breathe and it makes me flushed and shaky. However, I'm reminding myself that it is for a good cause and that anything is worth a shot. I managed to get about 3.5 hours of sleep last night before I woke up with panic attack-like symptoms from not being able to breathe. No fun.

It's looking like the end of the tunnel isn't that far away afterall. I half expected him to send me in for a c-section this past Monday. I have another appointment tomorrow where I suspect he will take measurements and maybe even set me up with a section date for next week. I'll be getting a bag ready today to take to each appointment now since we never know when it's gonna be.

So in closing, pray pray pray! It looks like she'll be here even sooner than we thought. I'll write again tomorrow if I can, and if not I'll have a family member try to update as soon as possible.

love to you all--
Kelli

What the doctors are saying these days

2009-01-05T19:51:00.000-08:00

Sorry it's been so long since I've updated -- the holidays were crazy and also I felt that there really hasn't been much to say. I've gotten the following bits and pieces but I didn't feel like individually the warranted their own blog. From now on I'll try to be better about updating after each appointment. Thank you to each of you who has read this blog and has hounded me about updating.

I saw Dr. Tabor (my new perinatologist -- he works with Dr. Robinson) on the 17th of December and he did not have good news. He was very brief...and from what he said it sounded like he didn't expect her to make it to the next appointment. Some fluid was starting to accumulate in her abdomen and he was saying it could cause her to go into liver failure. I simply nodded while he spoke and reminded myself that God is in control and the doctor isn't always right. Also at the appointment he asked if I was willing to have an amniocentesis done as he wanted to find out if there was anything genetically wrong. He told me there was about a 25 percent chance that something was wrong in the chromosomes. I told him that I was okay with doing it if he thought it was really necessary. Less than 10 minutes later he was sticking a GIANT needle into me and stealing some of Maggie's amniotic fluid. Let me tell you, THAT did not feel good. There was no numbing and no being gentle....he JABBED me...no...he STABBED me. I was in so much pain and so afraid that I couldn't move. This probably worked out nicely for him. Afterwards, he told me I would get my results in 10-14 days and sent me on my way.

I saw Dr. Tabor again the day after Christmas. This time he was much nicer and much more optimistic. I'm not sure if it was because things had actually gotten better or because it was the day after Christmas. Either way he was much more cheery and I appreciated it. He told us that the fluid in her abdomen was gone and that there was LESS fluid around her heart. This was VERY different news from what he had said just a week and a half prior. I didn't ask for an explanation and he didn't offer one. I simple nodded as he spoke and reminded myself that he wasn't the one calling the shots and he certainly didn't have all the answers. The results from the amnio still were not in because as Dr. Tabor informed me "cells obviously don't grow during the holidays".

I got my amnio results last Wednesday while I was out of town for New Years. All 46 chromosomes (23 pairs) came back NORMAL!!!

This brings us to today. I went in for my follow-up fetal echocardiogram. Apparently they didn't think she would make it this far, because when I got there I found out that my appointment never got put on the schedule. However, they were able to get me in about 30 minutes later and so no harm no foul.

Dr. Readinger was brief but sounded more hopeful than he did last time. He says her heart is still beating at about 60 beats per minute. They were able to see the pulmonary veins this time and they look to be functioning well. This is good because last time he could not see them (partly because she was so much smaller) and he was not sure if they were there and/or functioning. He said that things were slightly better and certainly not getting worse, so this is good news. For the most part the appointment motto was "no news is good news". We're still going on week by week. Though like I said he sounded much more hopeful. The plan is to let her "cook" as long as the fluid build up stays lows. He mentioned maybe having Dr. Tabor put me on some steroids to help her lungs mature faster so that she'll be better off if we have to deliver sooner instead of later.

I'll be seeing Dr. Tabor again at the first part of next week.

I've felt such an amazing peace in the last few weeks. I realized it does not do me any good to stress and be upset. God has a plan and in the end He knows what is best. So I'm just sitting back and leaving it in His hands.

In closing, I would like to thank all of you so much for your continued thoughts and prayers. This whole thing has really opened my eyes to all of the wonderful people in my life. You all mean so much more to me than I can explain.

Love to you all--
Kelli

PS -- As a side note, Maggie has been CRAZY lately. She is kick kick kickin' along all the time. She's incredibly active and even the doctors have mentioned how active she is. She certainly is not letting something so silly as a SEVERE heart defect slow her down....boy oh boy am I in trouble when she learns to walk!

A reason to smile

2008-12-07T21:51:00.000-08:00

So I read that this week Maggie can hear...as a result of course I've been talking to her non-stop. Tonight I thought I would put on some classical music; not solely because I'm cliche...I actually happen to love classical music. Apparently Maggie does too! I had been listening for about 10 minutes when this gorgeous version of Ave Maria came on -- Maggie LOVES it. She started kicking around and squirming. I thought that surely this was a fluke. The song ended and so did the kicking. Several songs later I decided to listen to Ave Maria again...and the kicking started almost immediately. The link below is the same version she loves so much. Just thought I would share it all with you.

http://www.youtube.com/watch?v=aQVz6vuNq7s

What Dr. Readinger had to say.

2008-12-06T21:54:00.000-08:00

First I would like to say thank you thank THANK YOU for all your thoughts and prayers in the last few days since we first heard that Maggie was in trouble. I am so grateful to all of you.

I saw Dr Readinger yesterday for our first fetal echocardiogram. An echocardiogram is an ultrasound of the heart. Usually this gives very good insight to what is going on inside the heart. However there was an added degree of difficulty since they were having to look first through my body into the uterus and then locate her and then her heart. Maggie was feeling feisty yesterday and it took quite a long time to get the images they were after and then didn't get quite the in depth look that they were hoping for as she kept squirming around and moving all over the place. I suppose that goes to show that she's just like her momma and she's not going to do anything that she doesn't feel like doing! I'll have to have a talk with her and ask her to be a bit more cooperative next time.

The results were not good. Dr Readinger is the kind of doctor that gives you the worst of it so that you're not surprised by anything. I am thankful for this, as I would be devastated to have false hope and be crushed when reality comes into play.

***Disclaimer: I am not a doctor. I am a frightened mother. This means that my facts may not be 100 percent correct, I am simply trying to relay information as I have understood it. ***

The Diagnosis:

The very first thing he told us is that statistically speaking there is a 90 percent chance that Maggie will not make it to birth. She has many problems with her heart that have lead to this statistic.

First, Maggie suffers from Dextrocardia. This means that her heart is on the right side of her chest instead of the left. More specifically she has Dextrocardia with Situs Inversus. This means that not only is it on the right side but it is also backwards. Situs inversus is present in 0.01% of the U.S. population.

Second, her left ventricle is so small and underdeveloped that they are considering her as a Single Ventricle case. Usually the left ventricle is in charge of getting oxygenated blood to the lungs. The right gets oxygenated blood to the rest of the body. Since she only has "one", this ventricle must do both.

Next, she suffers from a severe heart block which will require a pacemaker at birth.

She is also has a ventricular septal defect. This means that the wall that should separate her left and right ventricle is missing. This is not good, however, if it were there then there would be no way that her lungs would get anywhere NEAR enough oxygenated blood.

There is severe narrowing at the pulmonary artery. This means that instead of the artery being a straw it is like trying to pump blood though a coffee stirrer. Not very effective in comparison.

She appears to also be missing a valve; though to tell you the truth I don't remember which one. By this point everything was getting blurry and I was trying to comprehend what I could.

Under normal circumstances the atrium and the ventricles work on opposite beats and work together. From what I understood Maggie's atrium are pumping at about 120 beats per minute and her single ventricle is pumping somewhere between 60-90 beats per minute. Due to being out of sync, her single ventricle is having to work harder because for every beat it must pump so much more blood in order to keep up with the atrium. This has caused thickening of the ventricle walls. This is a problem because as Dr Readinger says "she's only half-way home" and we are concerned that it may give out before birth.

There is already fluid beginning to accumulate around her heart and this will continue to get worse. I'm not sure what all that means, other than, it's really bad. This can cause something called Hydrops, which I'm sure I'll be talking about in upcoming entries.

He said lots of other things but again, honestly by the time he got to what I considered to be "minor details" I was lost in a fog.

We spoke briefly about surgery options but not in any great detail. Under normal circumstances a transplant would be the best option but this has been complicated by the following:

* She has to get here first. Because of the great number of surgeries required, they want her to be as big and strong before we bring her into this world. They said they would like to wait until at least 32 weeks before delivery. I am currently 21 weeks and 3 days.

* A compatible heart must be present.

* Because her heart is on the wrong side there may be a problem finding "room" for the new heart.

* Because her heard is also backwards they would have to either put the new one in backwards of find a way to get all the arteries and whatnot fit to where they should be.

The Plan:

We wait. Seriously. That's "the plan".

I will be scheduled to see Dr. Robinson again mostly likely this coming week. I will see Dr. Readinger again on January 5th.

My reaction to all of this:

I am hopeful. From the moment I found out that I was having a child I have found myself to be strangely more religious than I was the day before finding out. God has put me on this path and I have never questioned why. He has a plan for me and He has a plan for her. If it is His will to heal her heart and bring her into this world then it will be.

Ten percent is not a lot....but it is more than zero. I usually consider myself to be a fairly "lucky" person. I can only "hope" that Magdalyn has "inherited" this from me.

I am trying to stay strong, calm and positive. But honestly, I'm a mess. I'm terrified. Keeping myself pulled together has become a battle that I am fighting every single minute of the day.

I wish time would hurry. I wish the next 11 weeks would hurry the heck up.

Some people would choose to end this journey. In fact Dr. Readinger was obligated to inform me that in the state of Texas termination is still an option. For me it certainly is not; as it never was to begin with. To me, if I am able to have a single moment with my daughter before her passing then it is all worth it. If not, then I must accept that God knows what is best and that is not for me to try to control.

My daydreams are filled of holding her close and looking into her eyes...but I know that this may not happen. My daughter may be an angel who flies and never learns to walk.

Your continued prayers and thoughts would be appreciated more than words can say.

I'll update again when we know more.

-Kelli

Foundation

2008-12-06T21:33:00.000-08:00

As this is the first entry I figure I should give some background before getting into it all...

My name is Kelli and I am 23 years old. My sweet Magdalyn Grace is my first child.

At my 20 week appointment my doctor saw some unsettling sights with my ultrasound and sent me to a perinatologist (read: high-risk doctor) for further diagnostic testing and further insight. He sent me to a pediatric cardiac specialist for a diagnosis.

Cast of Characters:

Dr. Howser -- my normal OB
Dr. Robinson -- perinatologist
Dr Readinger -- pediatric cardiac specialist