49 Days

Yesterday we celebrated 49 days since Kara Faith went to the arms of Jesus. We wore purple and had donuts. We visited her little "spot" in the "park." Today we march forward... It is the 50th day since she left us and now she has been gone longer than she was with us. My memory of her grows fonder and my faith is being renewed. I can begin to see life beyond the journey we have been walking through. God is faithful. He is in the business of changing hearts and I am praying for Him to lead me (and my family) forward. I am so thankful for Kara and we all miss her, but truly to have her back would be to limit her in this world. She is much better in heaven with my Savior. There she is perfect and lacking nothing. I love you my little Peanut, sweet Kara Faith.

I am still wading through the pictures that we took of her. There are so many and it's hard to look upon many of them. I hope to share a few here and there as the days come. Bless you, everyone, for being such a support to us and we hope that Kara Faith has inspired your trust in Him who made you.

Kara Faith ~ A Testimony

For some time now, I have been wanting to share this testimony. It comes from a dear friend at church who also lost a child from a special condition. Oh how his words have strengthened me over the past weeks! I cried when I typed this up to share with you. May God have all the Glory for my pregnancy with Kara Faith, her tiny life while she was here, and her testimony that goes on...

"We need to acknowledge God when we see him in action. It is important for those who need their faith strengthened (such as myself) to hear, “That is God in action!" God has sovereignly worked in Miss Kara’s life. There are two ways that it is clear (even though we see through a glass darkly for now) that God faithfully demonstrates that Kara is both a heritage from God and a reward!

In 1989 when I had just received the news on the phone that our little one, Amanda Hope, would not live, I was overcome and had to drop everything and go home for the day. As I was driving, I saw a child in the car ahead of me that had Down Syndrome and was climbing over the seat. I realized that our little one would never do something so simple. I actually saw that a child whom even moments before I would have looked down upon-now had advantages that I envied for my own child. At that moment God changed my heart forever in regards to children. I saw that every child, Down Syndrome or otherwise, was indelibly marked with the image of their own Maker—the image of God. Therefore, every child is worthy to be loved and cared for by their parents. Kara has had a powerful impact on all of us around her. As a child created in the image of God, she is a reward of the womb. She is a gift.

Kara is a gift. The Lord, I believe, gave me a picture. It is the picture of a package. A package that when it arrived was wrapped in dark, fearful wrapping paper. There were no lavender ribbons or bows, but instead coarse twine that was tightly knotted over and over. This package is one that no one would have chosen. You, Stu and Nancy, have cut your fingers untying the course harsh knots with rejection from people, difficult decisions, grief and difficult emotions, and even doubt about your own adequacy in regard to your care of Kara. Then you have had to part with her! But as you were able to just slide the twine off and peek inside the package a beam of brilliant light burst forth! Oh my! This package that seemed so awful on the outside is truly a gift. Then as the package was unwrapped further, more and more life and joy of the Lord Jesus Christ continually has enfolded you. Peace, perspective, and courage came forth. The gift contains the fellowship of sharing in the suffering of Christ and obedience to His call in caring for one that the world would have put to death – Miss Kara. For He loves the ones others consider unlovely who are His. Christ died for the ungodly, even ourselves, who were unlovely and should have been unwanted. Our Heavenly Father willingly suffered the loss of His Son for our sins only to receive Him back to be with Him forever. You have lost Kara for now, but by God’s grace she will be with you in Eternity – a wonderful heritage. This seemingly dark and fearful package is a gift that will continually make you more and more like your Savior, Jesus Christ – the Best Kind of Gift, though you initially would never have chosen it. A gift you will continue to open in the years to come."

~written by Christopher Spencer--dear friend, loving husband and father, and fellow member of Abundant Grace

Fridays are Donut Day & Purple Day

Eden Joy (3.5 yrs) with me Every Friday we get donuts in honor of Kara Faith. We started this tradition when she was 1 week old and still in the NICU. We would celebrate each week she was with us with Krispy Kreme Donuts. Yum! Also, since her color is lavender/purple we like to wear it on Fridays. Kara Faith was born on a Friday and went to Jesus on a Friday, so it's a pretty special day around here!

17 Hours

03.26.2010 1 month ago today…

I held my baby girl in my arms for the last time. I rocked her and smelled her little smell. I touched her sweet little head and hands. I kissed her fingers and held them. She gave us an amazing last 17 hours and I wanted to tell that story…

Thursday, February 25th, 2010, we knew that Kara wanted to go home to be with her Big Daddy. Both of us knew. Stu took a shower and put on his date clothes—jeans, oxfords, and a button down shirt. I took a shower and tried to get comfortable after days of hardly any sleep. We called Celeste and told her to go get Jamie at the high school. We had decided that we wouldn’t bag her anymore if she had another apnea episode. We did so for the last time at 1:55 p.m. as the big kids were pulling into the drive-way to say good-bye to their baby sister. We were all here with our nurse, Loretta. We didn’t think Kara Faith would last long because she had been having breathing episodes at least every hour or so and sometimes more. I remember that I couldn’t get that heart/apnea monitor off of her fast enough. I practically threw the thing down and ripped the tight band that encircled her little chest off. I got to hold her without SO many things attached. It was glorious! Kara was on oxygen and had a humidifier. We didn’t take away anything that she needed. (We did turn off the crazy loud humidifier later in the day.) All afternoon we passed her around to all the children and we rocked her and rocked her. We took pictures. Lots of people from Hospice came. Friends from church came. We sang and sang to her. We were going to sing her right into heaven. Meanwhile, she looked lovely. She enjoyed us and it SO much. She cried a little and we fed her. I changed her diaper, her clothes. I remember the chaplain from Hospice came, Father Ralph, and he was moved to tears because he had never seen anything like what we were doing—singing and all of us around her and just enjoying the fellowship, worship, and a tiny baby. Our pastors both came. Friends brought dinner. My brother, Jamie, drove 750 miles and showed up at my door around 9 p.m. to a room full of people singing to a little baby. It was truly amazing!! Our friend, Teri, finally left near 1 a.m. Our nurse, Pat, had come on around 10 or so. Yet hours later, Kara Faith was still here with her family. Finally, it was Stuart and I rocking her alone in the night without any confusion from a busy day. Pat was close encouraging us. Kara started to run a temperature from all of the holding. She had problems regulating her temps anyway, so I was watching it very closely to try to keep her as comfy as possible. I had her wrapped in a blanket that my friend, Teri Garard, made for her. She was wearing a little onesie with purple flowers on it given to her by her big sister, Celeste.

Around 3:40 a.m. I could not physically stay awake anymore. I handed Kara Faith to Stuart in the rocker and Pat watched on. She promised me that she would come at get me as soon as something happened. At about 4:15 a.m. Pat ran into my room and awoke me and said she thought it was time… I awoke FULLY from my sleep and rushed out. Kara had stopped breathing in Stu’s arms, I fell to the chair and layed over her in Stu’s lap and wept. Pat listened to her heart and said it was still beating. Then I asked for my baby. Stu handed her to me and I wept some more. Then, right there, she started breathing again. (By this time I believe it had been a few minutes without breath.) It was like she was just waiting for her momma to get there. Then we thought that maybe she was waiting for her birthday. She turned 7 weeks old at 6:42 a.m. that morning. She gave us almost three more hours to enjoy her sweet spirit. As the sun rose on a new day at 7:00 a.m. Kara Faith took her last breath here and went to be with Jesus. It was a quiet moment. Her daddy was holding her. Then he handed her to me and her heart stopped beating in my arms. So we both held her in that last moment. We both loved her with a fierce kind of love that only a parent can have. I can ONLY imagine how God loves us if we love our children this way. When I received Kara Faith’s diagnosis back in August 2009 I knew that it would never be enough. That I would never have enough time with her. I also knew that God had numbered her days perfectly. So after 45 days in the NICU and 4 days at home, our sweet baby girl got to go Home. Kara Faith gave us that last 17 hours to truly enjoy her. She possessed the sweetest spirit. We were truly given a GOOD gift. I will NEVER be the same…

Taking Refuge

Kara Faith's Temporary Marker

(Many thank you's to the City of Newberry and North FL Monument!)

I can still feel her in my arms when I look at this...

Feelings are pretty rough over here. It is a true effort to rise each day and do all the "normal" stuff we are to be doing. God gave me Psalm 16 last night when we were praying...

"Keep me safe, O God, for in you I take refuge.
I said to the LORD, "You are my Lord;
apart from you I have no good thing." (verses 1-2)

"LORD, you have assigned me my portion and my cup;
you have made my lot secure.
The boundary lines have fallen for me in pleasant places;
surely I have a delightful inheritance.
I will praise the LORD, who counsels me;
even at night my heart instructs me.
I have set the LORD always before me.
Because he is at my right hand, I will not be shaken." (vs. 5-8)

Friday

This morning was just like last Friday morning when Kara went to Jesus--bright, clear, cold. I awoke at 6:57 and watched the clock turn 7:00. I tried to remember every moment. I rocked her in the chair for 1 1/2 hours after she died. I didn't want to put her down... Stu held her for awhile and then Teri, Jeanie, and Pat fixed her up. I gave her a bath and dressed her in her polka dots. I wrapped her in a blanket and then I rocked her some more before Ashley Milam came. I walked her out in the winter cold and sunny bright to the van. I gave her to her Daddy one last time. He placed her on Ashley's lap in the waiting van at 11:00. It seems like forever ago...

I wish I could feel the weight of her precious body again. I miss her so much! I can hear her little squeaks when she cried and her breathing. I can feel her fingers wrapped around mine. I loved her yawns, her sweet toes, and her smell. I mourn with HOPE as I know she is with my Savior and I will see her again. Someone recently told me that a baby in Heaven doesn't fill empty arms. So true...

Kara's Celebration Slideshow

(Please scroll down to the bottom of the page and pause Kara's music to watch the slideshow.)

I love you, Peanut!

Dear Lord,

Thank you for the precious gift of Kara Faith! My arms ache for her, my soul cries out for her, but I rejoice in her now being with You. Truly, I have heard her tiny voice whispering in my spirit, “I love you, Mommy.” I love you, too, little peanut. I love you, too...

Mommy

I wanted to say...

Months ago, as I was searching for information on HPE online, I decided to start a blog for Kara Faith. God led me to tell her story to encourage others who may, in the future, go through similar trials. In my wildest dreams I never imagined what impact Kara’s little life would have on so many people! Only God could do that! I am so humbled to have been part of God’s plan. I feel so blessed to have had the privilege of being Kara’s mommy and to be able to share her story. My sincerest hope is that Kara Faith has inspired hope and increased the faith of many. Our tiny baby has strengthened my marriage, grown my own faith in Jesus, and has shown me how completely in control God is—and it is good! There is no need to waste time on fear for He has ordered everything down to the last detail. Remember this, in Psalm 139 it says that God has gone before you and behind you and knows all of your ways.

My Little Treasure

I washed her beautiful little body with baby soap.

I dressed her in the polka dot outfit her sister bought her.

I wrapped her in a soft blanket that was a gift from a dear friend.

And I carried her out to the waiting van.

I will never hold her in my arms here on this earth again.

Oh, how I miss my little peanut...

Today, I will see her little body again...

but it won't be the same.

My little treasure is in heaven.

Tomorrow, we celebrate her life!

Our Gift

She looked like her Daddy and her big brother, Dan.

Her eyes were a light, icy blue.

She had Grandma Sara's hands

and Eden's little feet and tushie.

She stole all of our hearts

Such a gift from God, she is!

We have more stories to share about little Miss Kara Faith.

Right now our hearts are hurting, but we rejoice that she is now perfect and with her Big Daddy in Heaven.

Singing with the Savior

Sweet Kara Faith

01.08.2010-02.26.2010

You were created to strengthen the faith of God's people.

Thank you, Jesus, for allowing us to be part of her purpose...

Kara Faith Comes Home

For many days prior to Kara Faith coming home from the hospital I had been worrying. I was worrying that she would not be able to handle the car ride home and would die in the back of my suburban. It was something I just hadn’t been able to get around. The four days prior to her discharge, Kara had not had one breathing “episode” where she needed to be bagged. On February 22, 2010, Stu and I arrived at Shands NICU III to pick up our precious daughter. Upon arrival we discover that Kara had to have breathing assistance at 3 a.m. and 9 a.m. Again, my fears surfaced. It was then that I had to come to the realization that God would not have gotten us this far to have Kara Faith die in my suburban. I had to stand on that.

We got Kara Faith all set up on her portable oxygen and her heart/apnea monitor. She was placed in my lap and we were wheeled out to our waiting truck. Here I was just like every other mommy taking my baby girl home, except my baby girl was 45 days old, had a trach, a g-tube, and was hooked up to her lifeline—35% oxygen. Daddy followed right next to us with that O2 tank. It took 5 of us to take her to the car: Kara was in my arms, Stu followed with oxygen, Dr. Willis—the car bed lady pushed the wheelchair, Andrea Sullivan—NICU nurse extraordinaire, and Kerry—the discharge nurse who trained us to take care of Kara Faith. I handed little Peanut to Stu and he placed her in her car bed. (It took up 2 seats in my suburban.) Dr. Willis made sure she was nice and snug and we arranged all of the equipment—02 tank and tubing hooked up to Kara, suction machine for her trach, heart/apnea monitor, and an ambu-bag in case of breathing difficulty. I was to give her a few drops of sterile saline every 10-15 minutes to keep her airway moist and off we went. Stu was driving and I was watching over our sweet baby girl. A little way down Archer Road and she sets off the apnea monitor (it is CRAZY loud) and my heart leaps! I rub on her and check everything and the monitor quiets. She is fine. Then it really starts to pour as we get on I-75. I call my amazing friend, Chris Tuttle. We’re racing down the Interstate in the pouring rain and Chris and her husband, Donnie, are praying fervently via speakerphone for our protection, for Kara Faith’s breathing, for safety, for peace. God was right there in that car that day. It was palpable. Christ was knitting together good friends who trusted in Him for His goodness. Those prayers sustained us for the rest of the trip to our home.

We pull into our garage. I get out and come around to Kara’s side, unbuckle her, and gently lift her into my arms. Daddy follows with her O2. Little faces are now peeking out of the door to see their baby sister coming home. At home that morning was: Dan 10, Max 9, Tommy 5.5, Eden Joy 3.5, Joshua 22 months. Celeste 18 and Jamie 15 were in class. Tiffany Schwarz and Pam Waters were caring for our children that day. Pam Waters was there when we came through the door with Kara. Oh what a gift that day was! The kids were so excited! Teri Garard, our dear church friend and angel here on earth, arrived. She works for Hospice of the Nature Coast, but was there as our friend that day. Teri held Kara while I got her crib organized. Pediatric Health Choice arrived to set up all the equipment. It was then that we realized that the “tree” on the oxygen tank was not compatible with the hook-up on the ambu-bag. Had we had trouble and needed it on the trip home it would have taken us precious minutes to locate the right fitting and get all in working order. God truly was watching over her…

Jeanie Marino, Evelyn, Dax Balch, and Beth Wunder arrived from Hospice. They planned to provide continuous care nursing for Kara Faith. It took until near midnight for the nurse to arrive, so Jeanie and Evelyn cared superbly for our daughter until Pat Dahl (we absolutely love Pat) arrived. We can’t thank them enough for the tender care they gave Kara and us during those first hours at home.

From the time we arrived home with Kara Faith until late the next morning I felt like I was standing on a cliff and about to jump. The adrenaline was unreal! I barely slept. Stu was so vigilant in caring for our daughter and me during this time. Kara had set her monitors off on several occasions and I just didn’t want to miss a minute with her. He encouraged me to sleep and he stayed up with Pat and took care of Kara. (I think I slept 3 hours that first night.) Finally, around 10 o’clock on Tuesday morning I felt peace settle over me. I could pick her up at any time and hold her. I could change her diaper, feed her and just do whatever I wanted with her because she was home in her crib in my house. I had to trade all that fear for faith that God, along with Hospice and our friends, would sustain us and Kara Faith in the coming exciting and stress-filled days.

Coming Home on Monday!

My Precious Girl...

Little Miss Kara is coming home this Monday! Last Tuesday she was doing so badly that we didn't think we would see this day. Early Wednesday morning she received a transfusion. Cardiology recommends that babies with TOF (Tetrology of Flow) have a hemocrit of 45 or greater. Hers was 31. Also, they added a new heart medication Wednesday afternoon. She is on Lasix and Captopril. Thursday she was a new baby!!!


So yesterday we met with Nature Coast Hospice. They are wonderful and will be walking with us and helping us through this journey with Kara. I believe they are providing 3 full days of nursing care to get us started and so we are comfortable. Also, Pediatric Health Choice came and gave us a 2 hour seminar on all of the equipment we will be using at home and portable for Kara. The portable oxygen tanks only last 1.5 hours, so they gave us 4 and will be delivering more. We'll have a home oxygen mixer, a compressor for the humidifier, a heart/apnea monitor, a portable suction machine. These are her lifeline. Then they tell us the apnea monitor has to stay 6 feet away from any other electronic device... Not sure how that works! We'll see because we don't want it going off all the time. The car seat lady came and we got a car bed for Kara. She cannot sit up in a car seat because of her trach and no head control. It will take up 2 seats in my Suburban.


Please pray for these things:

**that Kara would remain healthy for the next 2 days of stay in the NICU.

**that Stuart and I would have a great peace about caring for her, no anxiety

**that I would not be afraid of anything happening in the truck on the way home from the hospital...

**pray for the people from Hospice and Ped. Health Choice that will be assisting us (They are angels!)

**our children would be calm, healthy, and enjoy their sister very much


We are so thankful for all the prayers of the Faithful people of God! They have held us together and made all the difference for Kara. God has done a work. Every day is a gift with her and we are determined to celebrate her life and enjoy her as long as possible. God bless you!

In about a week...

All the kids together and Daddy on Valentine's Day!

Max enjoys holding his sister.
Joshua gives Kara a sweet little kiss...

Little Miss Kara Faith is going to be coming home in about 1 week. They told us the goal is Monday, February 22nd. That seems soon and there is SO much to do! Because of all her equipment and some of the care she will need, we are going to set her up in what is now our home school room. It is right off of the family room and kitchen and it will be a good location for her. We are still troubleshooting to see if she will be able to handle a bouncy seat. Also, I think she will come home from the hospital in a car bed and not a car seat. All new to us. At home there will be a heart monitor, suction machine, oxygen, and a humidifier for her trach. Pray for us as we care for her around the clock. We will have to work some schedule where we take turns sleeping. Someone needs to be awake with her 24/7 and they are having a hard time finding a nurse for us that will come at all--let alone the 11-7 shift so we can get some sleep. Evidently pediatric in-home nurses are rare in our area and then finding one that will care for a child with a trach is another hurdle. We will need a supernatural strength that God can provide. Leaning on Him during these wonderful and apprehensive days ahead!

Love you to the moon and back

"That's very far, thought Little Nutbrown Hare. He was almost too sleepy to think anymore. Then he looked beyond the thornbrushes, out into the big, dark night. Nothing could be farther than the sky. "I love you right up to the moon," he said, and closed his eyes. "Oh, that's far," said Big Nutbrown Hare. "That is very far." Big Nutbrown Hare settled Little Nutbrown Hare into his bed of leaves. He leaned over and kissed him good night. Then he lay down close by and whispered with a smile, "I love you right up to the moon--and back."

This reminds me of how Kara is laying in her bed when I leave every day. I tell her I love her and kiss her on the head. And...I love her right up to the moon... and back.

Happy Valentine's Day, Miss Kara Faith! (this weekend)

With all my heart...Mommy

Some Pics

She just looked so precious today!

Love Always Hopes...

Miss Kara Faith Smiles!

Kara, after a relatively rough start, seems to be doing better with her trach since surgery last Thursday. Sorry I haven't updated, but have been soooo tired. An xray today showed she does have some edema in her lungs so they gave her another dose of Lasix to try to dry that up. She has been having desatting issues where she will drop her oxygen sats REAL low and sometimes needs to be bagged to come back up. This just offers her additional oxygen and some pressure. She was used to the pressure when she was on the vent, but was breathing room air. She came off the vent just a few hours after surgery last week. Currently, Kara is on about 35% oxygen and had a wonderful day today. They are teaching us how to suction her and both Stu and I have had a chance to do this. We will be trained to change her trach coming up probably next week. It looks like she may be ready to go home the week after next. We have to get everything in order. We had a BIG meeting today with her doctors, social worker, Hospice, etc. It was very helpful. Please pray that we would not have anxiety in bringing her home. Sometimes I am overwhelmed at how I will care for her, but God has ordered everything thus far, so I need to trust in Him. We are very thankful for our little girl! Go HERE for more pictures of the past few days and her new trach.

Love always hopes...

Heard this song on the radio today... Made me think of God. He is Love. He is with us even in our darkest hours and days of need. I got some more hope today. Thank you, Jesus!

Trach Surgery Tomorrow

Cute pic of Kara from today--thanks to Nurse Annie.

She is hugging Natasha the poodle and Boris the beefalo.

Kara is having her tracheotomy surgery tomorrow, February 4th, at 8 A.M. Please be in prayer for a smooth procedure. We are hoping to have her home around Valentine's Day!

Daddy's Gift

Many nights my husband, Stuart, goes up to visit little Kara and he reads books to her. A couple nights ago he took this favorite to share...

From Schoolastic.com: "A young girl and her father take a nighttime stroll near the farm where they live to look for owls. It is a beautiful night, a moonlit winter night. Bundled tightly against the cold, they trudge through the pristine snow, "whiter than the milk in a cereal bowl." As they go, hidden in ink-blue shadows, a fox, a raccoon, a field mouse and a deer watch them pass. A delicate tension builds as the father imitates the great horned owl's call once without answer, then again. Finally, from out of the darkness "an echo/came threading its way/through the trees."

Author Yolen has given the very youngest readers an understated vignette, completely from real life. The young girl, in fact, is based on her own daughter. There is nothing overtly fantastical here. But John Schoenherr's Caldecott Award-winning watercolor paintings have made the familiar wonderful and strange. From his brush emerges the bold stare of a nocturnal owl, and farmhouse seen from the point of view of one. A beautiful picture book, infused with poetry, which is perfect for reading aloud again and again."

And from the last page:

"When you go owling

you don't need words

or warm...

or anything but hope.

That's what Pa says.

The kind of hope

that flies on silent wings

under a shining Owl Moon."

I have that hope for Kara, that she will be able to experience God's creation with me in some way, the way this little girl in the book was able to share and be shepherded by her father... (by her Daddy, Stuart)