Hope for NKH Auction

We have decided to go full steam ahead and put on our first auction for Hope for NKH. We watched as our precious babies came into this world and were so quickly taken from us. So many of these babies and children suffer and we need to help find a cure or a better treatment. I just got into contact with a mother who lost her 10 day old son a week ago. Her world has been shattered due to NKH. Please join us in raising money.

We love you JoJo and SoSo.

Our sweet JoJo's birthday

October 4th has swiftly approached us this year. JoJo would be 6 years old. I can't even imagine how our household would be if we had both of our Angels still with us. We would have a 6 yo, 4 yo, 3 yo, and 6 month old. I would give anything to see that, just for a day. I would love for the kids to be able to meet their big brother JoJo and to be able to hold Sophia and kiss her baby toes. We will be visiting their resting place tomorrow for the tradition of releasing balloons.

3 Months old

Our precious Sophia Grace would be 3 months old today. We should be taking her picture on the elephant just like we did with her big sister. Shawn and Emma have been asking a lot about her and then that also leads into questions about JoJo. They were at the dinner table over at Grammie's and the kids were going around the table talking about their siblings. When it came to Emma she said, "I have one sister in Heaven, one brother in Heaven, and I have Shawnie". It breaks my heart when I hear her talking about it. What kid should have to understand death at such a young age? They want to know all the details of Heaven. Is there cribs, a mommy and a daddy to take care of them, do they eat baby food? So many questions. Today on the way over to our friends house the song Twinkle, Twinkle came on our iPhone. Emma wanted to know if Sophia would hear her if she sang it in the car. I told her that of course she would and her and Shawn continued to sing the song four times just to make sure.

I know that we will never fully understand the why of us having had two precious babies so quickly taken from us. Why was our family chosen? What are we supposed to learn from our experiences? Most of the time I am calm and composed, mostly using avoidance to deal with my grief. I still have days where all I want to do is scream and cry. We are making it through one day at a time.

Auto Pilot

The last 4 weeks have all seemed surreal. Did it all really happen? I think that most of our family has been set to auto pilot the last 4 weeks. So-So came into our lives and ever so quickly left, my grandmother passed away a week later, and my grandfather was diagnosed with lung cancer and had surgery with some complications. People ask, "how do you guys do it"? I couldn't tell you up until this point. It has been a numbing experience, but you just get through it.

These last two days the numbness has worn off. I cry for no reason. Driving down the street, taking a shower, or watching the kids play at The Little Gym. Today we received a letter from our medical insurance provider stating that we needed to enroll Sophia or her coverage would end and I had to sign for a piece of certified mail from the newborn screening office stating that it was a law that she be tested and we had to give our reasons why she wasn't. I know that these people don't know that our Peanut only lived a few short days, but it hurts.

I called Bridges today to enroll Emma in a support group of kids her own age that have also lost a loved one. Classes will be wrapping up shortly and don't start again until July. What to do, what to do.

The kiddos

Each day brings a new challenge when it comes to the questions that the kids (mainly Emma) ask about Sophia and Heaven. She has recently asked how Sophia got up to Heaven, did JoJo come to the window to take her away, and why can't she go to Heaven with her? I have stumbled on the answers that I have given, thinking long afterwards if I have told them the right things. Hopefully it will get easier with time. Emma will be turning 4 in 2 weeks and Mary Bridge has a program for children 4 and up who have lost a loved one. We are considering having her attend because she has so many questions and even started wetting her pants a couple of times in the weeks after Sophia passed away. Only time will tell.....

2 Weeks

Our sweet Sophia would be turning 2 weeks old. There are some minutes and hours where I forget that I gave birth to her just 2 short weeks ago. It already seems like an eternity since I was able to hold her in my arms and smell her sweet baby smell. Her 6 birth-days she spent on earth went way to quickly.

I printed the picture of Emma holding Sophia and put it by Emma's bed before she went to sleep tonight. Tonight is the first night that she has slept in her own bed without a fight since all this has happened. I also found an amazing book that we read called Isabelle's Dream. It's about a little girl who's younger sister goes to Heaven and she visits in her dreams. I change the name Isabelle to Emma. I can't help but cry every time I read it to her. I know that it is one baby step at a time, but it took so long after JoJo to finally be able to talk about him without crying.

Pictures from Trina (NILMDTS)

Pictures from Trina (NILMDTS)

After Sophia Grace-Day 7

At 10 pm this rainy Sunday evening, one week after our precious Princess Sophia Grace departed this world, her great-grandmother, Sarah & Randi's grandma & Grammie April's mom, Joan Lorraine Swanson, passed away after a lengthy struggle with Alzheimer's. 12 days shy of her 80th birthday. Grammie April was holding her hand and stroking her face. She took her last breath to the song "Aloha Oe" (Farewell to Thee), a beloved song written by Princess Lili' uokalani from Grandma's childhood home of Hawaii. I promise I couldn't make that up if I tried. Powerful stuff.

Grandma Joan's niece (and Grammie April's cousin) Luann spent the day with us. We talked about family and old times and had a peaceful day.

Rest in Peace, mom. Take care of JoJo & SoSo for us. Until we meet again.

Donations

I have had several people ask about making donations to help further the cause for Non-ketotic Hyperglycinemia (NKH). The non profit has a website, but the paypal button on the website is not currently working.

Tax-deductible donations can be made to:
Hope for NKH
11630 W. Brady Rd.
Chesaning, MI 48616

Again, thank you all for everything you have done. I don't think that thank you will ever suffice for the love and support we have received.

After Sophia Grace-Day 4

Preparations for Princess Sophia's funeral are keeping our hands and minds busy. Once that is past, I'm uncertain what the future holds for our family.

When JoJo died, we 'circled the wagons' as a family. We closed off most 'outsiders', not maliciously, or purposefully, but more for survival. Only someone who has experienced this pain can actually relate. And even our immediate family cannot possibly comprehend what Sarah and Joey are experiencing.

Our attempts to make sense out of this or to understand are futile. We just pick ourselves up, dust ourselves off, and try to go on substantially 'normally' for those who need us most. Each other.

After Sophia Grace-Day 3

When I was at Sarah & Joey's today, I remembered something very powerful that happened Saturday morning. I was awakened to the sound of a skill saw and hammering-I went to the window and their neighbors were working on a project on the house (since they're all fairly new houses, we still can't figure out what they're doing). It took everything I had not to throw open the window and scream "are you kidding me? we are waiting for our precious baby girl to take her last breath and you're acting like there's nothing wrong???"

That's the crazy thing. Life is for the living. Even a neighbor has no idea what agony you may be experiencing under your own roof.

Life goes on.......

a "new" normal

I heard my sister say yesterday that she is, " trying to find her new normal" it was something that really struck a cord with me because it is so true. I believe that once a mother loses a child things will never go back to normal, so Sarah is on her own journey to a "new" normal because that is all she can do. It is starting to hit me that Sophia is really in heaven already, it feels like those six days happened in just one breath, one moment. It is amazing to me the impact that Sophia made in her six short days here on earth, she has changed our lives forever, I think that too often we take things for granted, and more often we allow things to shape our lives that we believe are important but really don't matter at all, it is easy to let our lives pass us by as we spend time feeling angry that someone cut us off, or depressed that we don't make enough money, or cheated because the drive-thru forgot our french fries. Watching two babies breathe their last breaths has really helped me separate the important things from the not so important things in life. I can brush off forgoten french fries or being cut-off without a second thought and I have J0-Jo and So-So to thank for that. The truth is Jo-Jo and Sophia taught me so much about life, love, and my faith. Although I don't understand why God has placed this on Sarah and Joey, I do believe that he has a plan for them...for all of us.

Sophia's Funeral Service

Sophia's funeral will be held at New Tacoma Cemetery on Saturday, March 27th @ 1pm. The address is 9221 Chambers Creek Rd. W., University Place, WA 98467. Her obituary will be in Thursday's paper.

One day at a time

It is 12:54 am and I am lying next to Emma unable to sleep. While watching Emma breathe I am staring at a picture of Sophia's beautiful face. I fear that 6 days was not enough for me to memorize every detail of her precious face. We debated on who she looked like more, but when I look at her pictures now, I just see Sophia Grace. I miss her more than words can express. I prayed for more days with her than we were given with JoJo, to no avail. I know that she is in a better place, happy and whole with her big brother, but I long to hold her once more.

We want to thank all of the people who have surrounded us with their love, support, and prayers. We have read each comment posted and thank you for all of your kind words. We are truly blessed to be surrounded by so much love and kindness. It has meant a lot to all of us. Again, thank you all so much.

After Sophia Grace-Day 2

It does not seem possible the blessed event we planned and waited for for nearly nine months is over. It's like all the energy you put into planning a wedding only without the happy ending (well, at least 50% of the time according to statistics!).

It feels like a dream. Was our precious child really here? And gone so fast? We foolishly expected she would stay with us longer. JoJo was so sick and he was here nine days. Why only six? What is the lesson? Everything is a blur. I remember more vividly the time with JoJo than with Sophia. Why? We had significantly more quality time with SoSo. More hands to spread the work to keep us fed and clothed. My mind races to search for the memories. We barely slept. We spent every minute we could with her and yet we still feel cheated.

I'm hit by the realization we will never have the answers we seek. And that has to be enough. But it isn't and never will be.

After Sophia Grace

There are very few things I'm sure of in this life. Today the realization of surety set in-6 days is not enough time. Not enough time to do the things we planned. Paint toenails with sissy and anna. To make a wreath of hand prints with Sophia Grace, Emma Jolynne, Arianna Lynne, Shawnie & Bubba. To take our precious Sophia in a stroller on a walk to the park. To have a Sunday dinner our family cherishes. Not enough time for Auntie Devan and Uncle D Molly & Mya to hold our precious baby girl.

Tomorrow Sarah & Joey must make the final arrangements for our sweet baby. Grammie & Papa must put the finishing touches on the 'resting bed' we lovingly crafted to cradle our Princess Sophia.

The pain of the loss is unrelenting. We are distracted momentarily, but it is fleeting.

The journey continues.

518,400 seconds

Or 8,640 minutes or 144 hours it doesn't matter how you count it, it's still only 6 days. Six days...filled with joy, sorrow, and alot of tears. I feel peaceful, and ravaged all in the same breath. How can this happen to a mother, my brother-in-law said something last night as my sister eyes were welled with tears he told her, "sometimes mothers make babies for earth, and sometimes mothers make angels for heaven", couldn't have said it better myself...as hard as it was to hear. None of us know why God chose this to be a part of Sarah and Joe's journey but I do know that they have handled it with "Grace" I'm worried about the kids, all four of them are napping now, how will we tell them what has happened while they slept....we don't have that answer yet. I am so grateful that Sophia got to come home and be with us all, if only for a few days. Joey and I had a brief conversation last night as we were trying to get all of the kids to sleep I mentioned that I felt strange but I couldn't really put it to words...he replied, "You mean it's strange to be tucking our kids in goodnight in one room, while watching Sophia breathe her last breaths in another" Well yes, that is exactly what I meant...for the first time in my life I realized that this world does not stop no matter what is going on in the next room. Kids still need to be fed, diapers still have to be changed and tables still have to be set... Thank you so much for all of the support we have recieved even from complete strangers you have lightened our load and you will never now how appreciated you are. Miss Sophia Grace was a true blessing and I believe she is playing in heaven with her big brother Jo-Jo now ( I told her make sure she bosses him around, since that is what all good sisters too)

Sweet Sophia Grace's Earthly Journey Ends

Our sweet baby girl took her last breath at 2:28pm this afternoon. She was wrapped in the loving arms of her mother.

Sophia Grace's 6th Day Birthday

We were all prepared for our little princess not to make it through the night, but she's a little fighter. We are so blessed to have her for a sixth day, but are tormented by the selfishness. We know her place is at home with our Heavenly Father and her big brother JoJo. We are taking turns sleeping and cradling her in our loving arms.

I'm pretty sure if we cut ourselves, we'd bleed, but it wouldn't hurt. This anguish is so all-consuming. No words can describe it, we can only pray for relief. The second guesses abound. Are the decisions Sarah and Joey are making the right ones? For every question, there are only more questions, no answers you can equate to right or wrong. It is agonizing. I know most of this is our lack of understanding of the plan God has for Sophia and our family, and that answer must suffice.

Our Journey Continues

The last several hours have been a roller coaster of emotions. Our Miss Sophia's breathing stops intermittently and she appeared to be in distress after one episode. We ran around like chickens with our heads cut off getting the right dose of morphine into her tiny body and she seemed much calmer (who wouldn't after a good dose of morphine :)) and it did help her breathing a bit. Or at least that's what we're telling ourselves. Her coloring is turning from bluish to gray. JoJo all over again.

I haven't taken 15 minute showers since I was a kid and not paying the water bill, but it's soothing to stand and just let the water beat on me. Sarah has a rash from head to toe. She has blister like sores just under her incision where they did a 'dry shave' of the area just prior to the c-section. Nothing seems to relieve it much. It hurts just looking at it.

We've cried so much we're literally devoid of tears for now. Our sweet baby girl is not far from soaring with the angels we fear.

We had diversion with several good friends stopping by today for brief visits. It helped to laugh and relieve some of the all-consuming grief we are experiencing. The kids got outside to play and it did all of us a world of good. Even Joey looked more relaxed then I've seen in the days since Sophia graced (no pun intended) our lives with her entrance.

We feel the incredible support you are all sending through prayers, messages, and posts to the blog. It means more to us than you can know. The Tacoma Police wives are bringing meals, and Sarah's 'almost favorite' Uncle Pat & Aunt Lu Corso have given us reprieve by bringing 'supplies' and keeping the kids entertained. The thoughtfulness of our circle of family and friends has blessed us many times over. I hope we can "Pay It Forward" throughout our life's journey.

The most gut-wrenching events of the day? Her big sister Emma Jolynne holding her and singing (in an angelic voice) "Jesus Loves Me" and her cousin Arianna Lynne kissing her goodnight and saying "I'll Love You Forever".

The Journey Continues-Sophia Grace's 5th Day Birthday

It's like being run over by a freight train only you don't die. And when you pick up the pieces one is missing and you can't find it. That's what it's like to wait for our precious baby girl to take her last breath. We know it's coming and can't stop it.

She had a rough night, 'clicking' and 'humming', all signs of seizure activity. Her breathing shifts from labored to shallow. There will be no more feedings. Our hearts are breaking. Again.

We're going to try to get outside today. The kids need to burn off energy and we all need some good 'ole Vitamin D in the form of sunshine.

More later.

The Littlest Princess

Thanks to all for following our journey. We are blessed to be surrounded by loving, caring, compassionate people. Our basic needs for food and support are being met by so many of you it's overwhelming.

I wish I had good news. It's been a very rough day. Sweet Sophia is continuing her decline. She is no longer feeding, and is not peeing (but still pooping!). Her seizure activity is continuing off and on and we are very worried about her comfort. She looks so incredibly peaceful it's hard to believe her body is being ravaged by the glycine her body cannot handle. Her breathing is becoming a bit more labored and we are monitoring her fairly constantly. Her temperature dropped to 97 degrees and we wrapped her in warm blankets fresh out of the dryer. That brought it up fairly quickly to 98.4. Hospice says the extremities become cold as the blood is diverted to the critical organs that are slowly shutting down. Joey & Sarah decided to give her Lorazepam to try to calm down her seizures and possibly help her eat. It did seem to work, but only for a bit and her heartbeat dropped to 112 beats per minute which put us all into panic mode. No more Lorazepam for now.

Sarah is trying to stay strong, but it's difficult. A mother's love is a very powerful bond and it is impossible to think of that bond broken by our earthly constraints. It will take every ounce of love we have for each other to survive this. Emma knows something very powerful is happening and is struggling to comprehend. When Auntie Randi & I picked her up today, she asked where we were going. We said "home to see your baby sister". She said "my baby sister's going to heaven". Very matter of fact. Heartbreakingly poignant out of the mouth of an almost-four-year-old. I fear she will grow old before her time.

Embrace the Journey

Grammie is sorry she hasn't posted in a while. It's been a long 24 hours.

Today is Sophia Grace's 4th Day Birthday! We are surrounding her with love.

Since our last post, Sarah and our princess are now at home! The last insult Sarah had to endure to be in the comfort of her own home involved a liquid inserted into a body cavity which results in lots of trips to the toydie. She says she's not doing that again for anything!

Sarah is so incredibly strong. She is putting aside her own pain (both physical and emotional) and remaining a rock for her two 'healthy' children. She was singing "Old McDonald" with Emma this morning (and I have the audio to prove it!) while sitting on the loo (sorry, no video to follow :)).

I wish I could tell you that our princess was doing as well or better than yesterday. Her seizures are intermittent, but fairly frequent. Her feeding is slowly decreasing, and she has not opened her eyes in a little over 12 hours. Her muscle tone has significantly decreased and is 'floppy'. All signs we secretly hoped would not come, but intuitively knew would.

It's strange how you think of life in terms of hours and minutes in times like this. We are all putting on a good face most of the time, but the sadness permeates our lives and is palpable.

Hospice was here this morning to make sure we know what meds she can have and when. Most of the nurses are not accustomed to working with families of infants, but we are lucky to have a former NICU nurse in the rotation. Lucky us.

The night of her birth, during my shift for the 4am feeding, my emotions were beginning to overwhelm me. The agony of watching your own baby girl struggle to comprehend the uncertain future her baby girl was more than I could handle. What did she do to deserve this? What lessons could she possibly learn from losing a second child to this devastating disorder? My faith in a just God was (and still is) in question. In an instant, I was overcome with a soothing calmness. The words "Embrace the Journey" pulsated through me. (Sorry if this is getting a little 'weird' but those of you who know me know that's pretty normal for me LOL).

So that's what we're all trying to do. Embrace this gut-wrenching, confusing, beyond stressful, agonizing journey.

Sophia Grace's 3rd day birthday

Today is Sophia's 3rd day birthday. She is eating off and on and fortunately Sarah's breast milk has come in so our precious baby can eat something more nourishing than yucky old formula!

She was making a 'clicking' sound earlier this morning which the NICU nurse tells us is more than likely seizure activity.

Daddy and Emma are here with her and Daddy pretty much trumps anyone else as far as holding time. You can see how much he loves her. Emma is a big help for mommy and we try to keep her busy as the big sister. But she is a typical almost-4-year-old and has a hard time listening to logic and reason.

Sarah may get the green light to go home today based on passing Dr. Williams' five criteria, most of which involves one hazardous bodily fluid or another :). Sarah is very ready to be in the comfort of her own home and maybe then we can all get some rest. Or at least as much rest as you can get with a newborn in the house......

Latest news

Dr. Irwin, the pediatric neonatologist (a big word for sick baby dr), came to see our Sophia today. He talked with Sarah and Joey about putting her on seizure and pain meds, as it appears she is exhibiting seizure activity off and on.

She just drank a good bit of formula, but is very sleepy and not very interested in waking very often to eat.

Emma & Shawn were up to see their sweet baby sister and both were very anxious to hold her and feed her. Emma is feeding off of all of our anxieties and is in meltdown mode.

Sarah is doing better today (physically), but is still quite sore. She has a ton of adhesions and scar tissue from previous c-sections and that prevented Dr. Williams from tying her tubes.

Emotionally we are all exhausted. We were elated yesterday and had high hopes for either a misdiagnosis or milder form of the disorder given her very loud entrance into the world and very different presentation than JoJo. But the 'screams hear 'round the world' have turned to deafening silence.

Keep us in your prayers. We need all the good mojo we can get.

New pics and update

Our precious baby girl is more sleepy today. She isn't feeding much, although she still has a sucking reflex. She doesn't cry, but does let out very cute little squeaks. We are giving her as much love as possible and praying for God's grace to surround us.

Happy Birthday Princess Sophia Grace

We love you!

The Big Crap

Holy poop! Our little miss let loose with a BIG POOPY and guess who got to change it? GRAMMIE! I'd show you the pictures (we had to take 'em because Sarah couldn't get out of bed to enjoy it).

More video

Momma & Baby

Sarah is doing much better this evening. She had a reaction to something (we're not sure what) and was itching like crazy. They pumped her full of meds (not psychotropic!) and she is feeling much better. She is sitting up in bed and talking like she didn't just get a baby yanked out of her abdomen through a 12 inch incision. That could be the Dilaudid talking........

Our princess is showing more signs of NKH. She has quieted down since her screaming entrance into the world. She is so tiny and precious. We are enjoying every minute with her.

Ht & Wt

Princess Sophia weighed in at 6 lbs 2 oz, 19 1/2 inches long.

More video

Joey took these in the delivery room.

Pics & video

SOPHIA GRACE IS HERE!

Our precious Sophia Grace made her debut at 12:40pm today. She has presented much differently than JoJo. She is occasionally crying and opening her peepers. Sarah is doing well and we're so blessed that she is alert and able to enjoy Sophia.

Emma is stressed-she loves her baby sister, but she's very overwhelmed by all the chaos.

More later.

Love to all. Thank you for all of the good thoughts and prayers.

Today is Sophia's Day!

It still doesn't feel real. We will be leaving for the hospital shortly. Today will be Sophia's birthday! I can't wait to meet her and love her, at the same time I am so scared for her and for our family.

I went to visit JoJo's resting place yesterday on the way home from work to ask him to watch over his baby sister. I can't believe that we are going through this again, but I know that our family is strong and we will get through what ever is thrown at us.

We will keep this site updated as much as possible.

Sarah

Palliative care team

Joey, Mom, Randi, and I met with the Palliative care team at Mary Bridge (Tacoma General). We all know what we are facing, but we have been taking each day in stride, cherishing this time. I was so unprepared walking into that room. Everyone was already there when we walked in. There was a room full of people. NICU nurses (2), Hospice nurses (2), Tissue services (2), the doctor, and a special woman that will help the kids through this time. Prior to the appointment I had spoken with another NKH mom with a wealth of knowledge. I will be forever grateful to her. She helped me prepare questions that I should ask based on her families previous experience. At the start of the meeting they asked me to read the questions so they could answer them. I could hardly speak. Just asking those questions made it so much more real. The reality of what is going to happen crushed me like a freight train.

One of our greatest concerns is for the other children. How will they all handle this? Emma is constantly wanting to buy Sophia toys, food, clothing, etc. I took her to Fred Meyer's last night and she immediately zoned in on the baby clothes for "her Sophia". I let her pick out Sophia's first outfit that she will wear and she won't let it out of her sight. Shawn is just now starting to say that there is a baby in my tummy. I am still not sure he understands. He is constantly on the go and what's in mommies tummy is not that high on his list! Ari is also talking about Sophia, but she also wants to know when JoJo can come down from Heaven to play.

We only have 3 weeks left as of Tuesday. This time has gone by so fast. I just wish that I could keep her in there until kindergarten, maybe the doctors would know more by then.

A strong woman

An amazing woman that I met through tragedy years ago reminded me that I once sent her this poem that I found.

A strong woman
is one who feels deeply
and loves fiercely.
Her tears flow
just as abundantly
as her laughter.

A strong woman
is both soft and powerful
she is both
practical and spiritual.

A strong woman
in her essence
is a gift to all the world.

You are a woman who shows
what it takes to be one.

i love you.

your big sister emma

Dearest Princess Sophia:

Today was a good day except when mommie asked me to look at a casket online. It was so hard to think of losing you even though grammie is trying very hard not to be selfish. I want you here with us to be our daughter, granddaughter, great-granddaughter, little sister, cousin, niece and grand-niece. But not if it means you will be sick and in pain. My faith that all things that happen are as they should be is the thing that keeps me from driving off a cliff. LOL I never imagined our family might have two angel babies. It's hard not to think of what SHOULD be, if we actually had a say so in the matter. Your mommie is so brave to bring you into the world for us to shower with love for as long as we are blessed to have you. We'll take whatever time we get with you, whether hours, days, weeks, months, or years and be thankful for each tick of the clock. Late at night, when I take a deep breath, I can almost smell your breath and your hair and your skin. I count the days until we can celebrate your 'birth' day with a mix of anticipation and dread. I'm not sure which emotion wins out. It depends on the day. You, my sweet baby girl, will be welcomed with open arms.

my precious Sophia

Well, I don't really know where to start so I will keep it short for now. This has been such a difficult time for my family and I, and just want to say that I truly admire the strength that my sister has through this difficult time in her life. I keep trying to prepare myself for Sophia's arrival, trying to figure out how to best support my sister, and trying to think of things that I would love to do with my niece Sophia while she is here, like paint her toes, and comb her hair, and bring her a true "birth" day cake, in case it is the only one we get to spend with her while she is here. Every time I tell someone about Sophia's diagnosis it is the same response almost without fail, "Doctors can be wrong" or "Pray for a miracle, they can happen". Well trust me, I know Doctors are sometimes wrong, and I pray daily for a miracle. But for my family and I it is difficult to depend on miracles that we know may never come. So I say my prayer for a healthy Sophia every morning and then spend the rest of my day trying to figure out how we will ever be able to wade through these waters again, this type of tragedy just shouldn't hit the same mother twice. I don't want anyone to think that we have given up hope for a healthy Sophia or that we don't believe in miracles...we do! It is just that sometimes the only way to get through the day is to accept and prepare for a history that will most likely repeat itself regardless of how much we hope and pray against it. Ever since Jo-Jo passed away at 9 days old, I have always wondered if it would have been easier if we had known he was affected and that he would not survive. But I never...ever thought that I would get the answer to that question, unfortunately I have. I realize now that there is no easy way to get through this regardless of whether or not you know the childs health before they are born, a loss is a loss period. Sophia will be here before we know it, and for me, I will take it one day at a time loving her more tomorrow than I did yesterday and thanking the Lord for every second that we are blessed to have her here in our arms. Well so much for this being short....guess I did know where to start. Thanks for reading and I am hoping that this will give you all some insight into our lives and maybe even answer some questions that you didn't know how to ask.

Where has time gone???

As I sit here and look at the calendar, I can't believe that there are only 7 1/2 weeks left until Sophia will enter our lives. Joe and I never thought that we would be going through this again, let alone putting our family through this again. A lot of people don't understand why we would and we understand that this decision is not the right one for everyone. We question our decision daily and we will probably never truly know if we made the right decision. When we found out we were pregnant, I knew that instant that this little baby growing inside of me was going to be affected the same way that JoJo was. We had already decided that if the baby was affected that we would terminate the pregnancy because we couldn't stand the thought of losing another baby.

How will it affect our living children? How will it affect our family and friends? How will it affect our relationship?

We thought that we would find out if the baby was affected around 12 or 13 weeks just like we did with Emma. Leslie, our genetic counselor, asked if we thought one way or another before the results came back. This pregnancy was so much different than JoJo and Emma. I told her that it was either going to be an affected girl or a healthy boy, but my gut was telling me that this child was affected. Due to complications we didn't find out the results until 18 1/2 weeks pregnancy. By then she was already squirming and kicking about. Do we go in for a termination or do we bring this precious baby into this world and show her how much she is loved?

We obviously chose to bring her into this world and shower her with love and affection. We don't know if she will be here for a couple of days, weeks, months, or years. The doctors can't tell us definitely one way or another. They say that the severity runs similiar in families, but no one knows for sure. We just hope that in the end we have made the right decision for us and for our family.