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