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)

Extubation Day

Kara was all dressed up when we arrived...

Kara's face without tape or tubes!!

Kara doing her trial off the vent...

Mommy loves you SO MUCH! Resting comfy with a new vent.

Yesterday, when we arrived at the NICU, Kara was all dressed up in a cute little outfit thanks to her nurse, Melissa! I was so thrilled! It was a big day for her. Dr. Morse pulled her off the vent around noon and they worked with Kara for about 30 minutes. She is able to breathe on her own, but she kept shutting her mouth. Since she has no nasal airway, her heart rate would fall and her O2 saturation would fall also. They tried several things, but she was being stubborn, so they re-intubated her around 12:30 with a slightly larger tube. She seems much better with the larger tube. The next step is to contact Dr. Collins, her ENT, and schedule surgery for a trach. We are waiting to hear when that can be done...

It was a scary day for me. I felt like I had to face the situation that Kara could leave us yesterday. I was very teary and I still am. It is very evident that I am not ready to let my little girl go... She is so funny. She is showing preferences to certain things. She doesn't like the hand splints that the OT made for her. She does calm when I put my hand on her head, pat her belly, and speak in her ear. Please pray that she does not get sick during the rest of her stay in the NICU. She will be safer at home from some bad germs. I am hoping we only have about 2 more weeks and then we adjust our home life to a "new normal." Thank you for ALL the prayers and I will try to keep things updated.

GTube Results and Plans

Kara's New G-Tube

Kara had her gtube surgery on Friday 1/23 and it went very well. As of yesterday (Sunday), she was taken off of IV fluids for the first time since she was born AND she was back on breast milk via a continuous feed. She finally started pooping last night late. These are ALL wonderful things which show her system is adjusting well to the new gtube. Saturday and Saturday evening once she came out from under the anesthesia she was having some pain, poor little thing, so they were giving her Tylenol, but she is doing just great now!

On to the next thing! This Wednesday, January 27th, Dr. Morse plans to pull her off the vent (extubate her) sometime between 9-10 a.m. Stu and I both plan to be close by for this. It may be immediately evident it won't work OR it could take several hours. He wants to do it in the morning so he can watch her through the day. Her oxygen sats could fall after several hours and that would mean she's working too hard. In either case, they would intubate her again and use the vent to keep her airway open until we could get a tracheotomy surgery scheduled. So we will know something by the end of Wednesday is my guess.

Otherwise, Kara seems to be doing well. She is tolerating her feedings and she is gaining weight. Her weight last night was 6 pounds, 2.2 ounces. Keep praying so we can bring our little girl home and SOON! I need to get ready by moving the crib and such. We'll be needing help from various agencies and that has to be lined up. Plus I will need to figure out follow-up appointments with various specialists. Kara has a Neonatologist, an Endocrinologist, a Cardiologist, a Neurologist, a PT, and an OT. Hope I didn't leave anyone out!! LOL!

Having G-tube Surgery Tomorrow

Sweet Kara was laying like this when I arrived for today's visit.

Daddy, Dan, & Kara Faith

Kara Faith is having surgery tomorrow morning at 11AM. It is to insert a gastro-tube (G-tube) for feeding. This is supposed to be a simple procedure that is done laproscopically. The surgery is supposed to be 2 hours or less. This is one more step closer to getting our little sweetie home. Please be in prayer for no complications from the surgery and for good healing. Kara has been losing weight so they have been adding fortifier to my milk. She won't be able to "eat" for about a day or so and then they will increase her feedings over several days. Please pray that her weight doesn't drop too much.

11 Days Old

Kara Bear with her Momma

Plan and Update for Kara Faith

All settled in for the night...

Mommy watches over her Kara Bear.
Daddy really enjoyed holding you!!

Big sister, Celeste, gets to hold Kara Faith for the first time.

First of all, let me thank EVERYONE for your prayers, our Gainesville friends for lovely meals, and for helping us with childcare while we visit our sweet baby girl! Kara is doing better than many predicted and we are so very thankful for God's mercy in this area.

Currently, she is on the vent still, but breathing room air. It gives her a little air now and then because it's like breathing through a straw and if she forgets to breathe (apnea) it reminds her. She has an arterial line through her umbilical area. Also, she is hooked up to several other monitors to watch her O2, her blood pressure, heart rate, and respiration. Kara had been having a lot of seizures which is very common with her diagnosis. She is on phenobarbital which initially caused to be very sedate. Yesterday, she seemed to "wake up" and was moving more normally and it was an exciting thing to see! Her phenobarbital level was 38.5 which they wanted it no more than 40, so were happy with that. We finally got her off the EEG study yesterday, so she is free of all the wires and I was able to hold her last night for more than an hour. Sweet time, that was!

CURRENT MEDICAL PLAN FOR KARA:
Dr. Morse (our neonatalogist) has decided that the first procedure we will do is to get Kara a G-Tube (gastrointestinal tube) placed for feedings. Currently, she is scheduled to have this surgery on January 25th. Recovery is 4-5 days. We will need extended childcare for that day as we would both like to be present at Shands while she is undergoing this surgery.

The pediatric ENT, Dr. Collins, spoke with us. He looked at the CT scan of Kara's nose and there is no way to do an airway through her nose. It is closed and there is no connection through for any possibility of breathing that way. He wants to try to extubate her and see how she does before he would do a tracheostomy surgery. Dr. Morse says we will give this a try, but that babies are nose breathers and she would have to "learn" to breath a different way, so it may not be successful. We will do this after her g-tube surgery is healed. If removing Kara from the vent is not successful, then we will proceed with doing a trach and that is the way to get her home. Kara has good lung functiion and Dr. Collins believes there is no more risk to do the trach procedure on Kara than any other patient. Praise the Lord because we were previously given other information! Recovery from trach surgery is about 1 week. All things considered, I believe we are looking at around 3 more weeks in the NICU if all goes well.

In addition, Kara had an endocrinology consult. One of the scans done showed that Kara is missing half of her pituitary gland. She is currently getting hydrocoritisone to replace that hormone which is lacking and caused her cortisol levels to be off. They are watching her thyroid function, also, and may add synthroid if she needs it. Kara is taking 50ml feeds of mom's milk and tolerating it perfectly. No reflux or anything! She's peeing and pooping just like any normal baby does. I am doing amazingly well with pumping every 3 hours and she is totally on mom's milk. I am hoping to keep this up as the antibodies this provides is best for her as she goes through surgery. Kara was 5 pounds, 14 ounces at birth and as of this morning is 6 pounds, 1 ounce. We are praying she gains weight appropriately as I usually have trouble with supply and fatty content of my milk. (I am wondering if they will call to supplement her if her weight gain doesn't pick up...)

We have been impressed with the nursing staff at Shands. They have been very friendly and helpful and caring with our baby. Also, we've been approached by many of the staff members that had known of Kara and had been praying for her before she arrived. God is so good!

So currently we are in a holding pattern for the next week awaiting Kara's g-tube surgery. Pray we can hold it together at home, at work, and with our sweet daughter. Stuart is going back to work this week. I am hoping to be able to drive at one point. My truck is in the shop and we are praying it's a minor repair... This race can be exhausting. I feel torn because my family needs me and my baby needs me. I am praying for God's grace one day at a time. If I seem scatterbrained, I am! Sometimes I am tired. Thank you for all of your prayers!

6 Days Old

Today sweet Kara got a bath and I just wanted to show her off!