Merry Christmas

"Fear not for with God nothing is impossible". Merry Christmas and Happy New Year

Progress!

Sorry for the lack of updates--I had to leave town unexpectedly.


The good News:
Baby Kiya is now 5 lbs 7 Oz's!! Can you believe she made it over the 5 pound mark! That gives us all such hope-doubling her birth weight!

Kiya has been in a crib for a couple of days now. That means she is breathing on her own, with no cannula, and is maintaining her body temperature. She has only had a couple of "A's&B's" since having the cannula removed. We are very excited about her progress! So, no more incubator.

Kiya only has one more tube. That is the tube going through her nose to her stomach. Incredibly, Kris was able to feed Kiya last week. This is monumental, as breathing, eating and swallowing all at the same time is a real hurdle for some babies. Kris just has the magic touch-she was able to get Kiya to feed orally on her first try. Everyone was super happy.

The doctor is happy with the results from Kiya's eye tests. Now that she is off the oxygen we are thrilled and relieved.


We just have a few more hurdles to overcome. They are back to tapping Kiya every day. The hope is that her brain will begin to absorb the surrounding fluid on its own-but Kiya is still working on that one. It was hard to go back to an everyday tap after they had started tapping her every other day.

Kiya has been too sleepy to try and orally feed again. They believe this is due to the pressure on her brain. Kiya has to stay awake while feeding because there is a fear of choking if she falls asleep.

It's great to see them dress Kiya in little outfits. It's a sign of all the progress she has made, but at the same time, a reminder of all the things Mom and Dad are missing out on not having Kiya home.

How thankful we are for the progress that Kiya has made. What a miracle she is. To see a little tiny baby fight that hard to get better is a constant reminder of the human spirit. Through all the tests, pokes, prods and discomforts her will to get healthy is unbelievable. She has a way of making you grateful for things you take for granted each day.

We all look forward to the day that we can kiss, hug and squish Kiya as much as we want. The only time that Kiya will feel a mattress when she gets home, is when she is having her little pants changed. There will be plenty of loving arms to comfort her and hands to attend to her smallest need.

That you again for all your love and support.

We love you Kiya!

Grandma S.

A good moment

Kiya's first outfit

Good News!

I just got the news!
Kiya officially weighs 4 lbs 7 oz!
This is day three with no tap!
Oxygen level is now .4 (yesterday was .8)!
The air flow on the cannula remains at "room air"!

A special thanks again to each and every one of you for your prayers and positive thoughts. Kiya is feeling them.

We love you Kiya! (You go girl!!!)

Grandma S.

Sweet Baby

I cannot thank everyone enough for your love and support. Our friends and family have really rallied around us during this difficult time. We especially appreciate all of your prayers and faith. God is hearing our prayers and he is healing our little girl. Everyday is a new adventure. There has been so many ups and downs during this process. No one wants to see there child suffer, but my Kiya is already teaching me without words. Her strength, grace and willingness to accept the challenges that she has faced astounds me. She does not complain and she seems to have an understanding about the whole thing. I know she has angels attending her. My appreciation for my loving heavenly father and my savior Jesus has grown ten fold. I am gaining an understanding of what God gave up when he sent the only son he had to this earth. How much he must have loved us and does love us. We are healing and Kiya is healing through Gods love. I am so grateful for the knowledge I have of our purpose on this earth. Kiya is a special spirit and she will do great things. She is doing great things.
My boys are doing well with all the change. Lex has more faith in his little body than most people can ever hope to have. He prayes every night for Kiya that she will come home and that Jesus will heal her. Mason talks about baby sister, but honestly Im not really sure how excited he is about sharing daddy so some things are still normal. Please give all your kids a big hug for me. I know they can be stinkers, but they are such a gift. My life has been changed forever. I can't seem to do normal things anymore like shopping (this has been a blessing for Matt). All I want is for my family to be together at last. This time apart is very difficult, but I know that our family will be together forever one day. What a blessing! Someday I will rock my baby in the pink chair that I bought for her. I will lay her to be in her crib and sing to her as she falls asleep. Until then Jesus and angels will sing her lullabies and cradle her head. I thank you all so much and look forward to showing off my beautiful daughter to all of you one day.

Here is my favorite poem:
Quiet now cobwebs
Dust go to sleep
I'm rocking my baby
And babies don't keep

Text from Kris

I received this text from Kris on Saturday night:
'Great news. Kiya gained 100 grams. She is down to half a liter and on room air. The best part is they are going to wait on her tap today to let her head grow based on her growth. No apnea spells."

This means Kiya is now 4 lbs!!!! Head taps have been every other day-so this means she got to go at least one extra day.

We love you Kiya.

Grandma S

Kiya

Sorry it's been so long since a post has been made. Subconsciously, I want to have something great to report, but one is always reminded that we still have so far to go. You want time to speed up, and yet, it's never seemed to go as slow as it has the last few weeks.

Yesterday we had a fright. Kiya completely quit breathing. She was revived with a "bag", and the rest of the day she was back to her little fighting self. Another miracle to add to the list, as the doctors were just making their rounds when Kiya needed help. Once again, how incredibly grateful we are for all the divine intervention and knowledgeable medical care on Kiya's behalf.

The staff at PCMC ascertained that attempts to wean Kiya off of the caffeine were premature. The caffeine was administered through I.V. again and Kiya perked up and made it without incident the rest of Thursday, and today.

After her feeding, Kiya was wide awake and staring at her Mom. Kiya always keeps her head turned in Kristen's direction when Kris talks. Some times it's hard not to think that you are looking at a three month old baby. (albeit a very small one), when you see Kiya respond.

Earlier this week, Kiya was up to 3 lbs 13 oz. It's most likely gone up from there. Kiya definitely prefers sleeping on her tummy. She hates sleeping on her back. All the nurses seem to know that too--(I guess she has a way of letting her wants known!)

Thank you again for all your prayers and concern.

We love you Kiya.

Grandma S.

More Pics... We love seeing her!

She finally looks like a baby!  I'm so glad to she is getting some "chub" on her! 

Still holdin'...

Not a lot of new things to report. Kiya continues to progress. Today, she weighted in at 3 lbs 9 oz. (Yeah!!! Five ounces over her original birth weight!) Assuming things continue to go well, the nurses say that she can gain up to an ounce a day. We've been told that a lot of what she is going through right now is typical for a preemie baby. She continues to tolerate her feedings well.

The A's & B's (having to do with breathing) are still giving her a hard time. She went from 40 bpm to 200 bpm yesterday. Typically, though, her heart rate has been in the 150's, which is where they want it to be. The hope is, in time it will work itself out.

Kris and Matt get a chance almost daily to hold Kiya for an hour or so. Payoff moments for parents.

Thank you again for your positive thoughts and prayers.

We love you Kiya

More Cute Pictures of Kiya

She is growing like a weed!  Apparently she is has gained weight and is about 3 pounds 7 ounces now!  The ultrasound performed on her heart determined her heart also looks good.  We are just counting our blessings and hoping all continues to go well for her.

Kiya Enjoying A Bath

Matt sent me this picture a few days ago.  She is so adorable!  We love you Kiya!  Keep fighting!  :-)

Some Positives!

Today was a good day for little Kiya. Positive things that are happening in her life:
1. The nutritive I.V. fluid has been removed. Kiya now has one less pic line. This is great as there can be negative side-effects from this kind of diet.
2. No more daily pokes to her foot to draw blood, to make sure she is getting the right nutrition from the I.V.
3. They are continuing to increase Kiya's "food" intake.
4. Kiya has gone two days without having a "tap".
5. Kiya's brain ultrasound showed "no change". We consider that a positive.
6. The amount of oxygen flowing through her cannula has been decreased.

We still haven't heard from the specialist concerning Kiya's heart. She continues to have little lapses in breathing. Apparently this is not uncommon in preemies, and Kiya continues to "fix" the situation.

Sorry we haven't put any new pictures on the blog. Kiya currently has a blanket covering her little isolate making it too dark to take a good picture. Take our word for it, she's just as beautiful as ever. We'll provide proof of that as soon as we can.

We all know that Kiya is a miracle. It was brought home to us again today when Kristen met with Dr. Aagard, her OB/GYN. Dr. Aagard was the attending physician when Kiya was born. Dr. Aagard told Kristen that he had never seen a baby live before where resuscitation procedures had been administered for so long.

Three days after Kiya was born, Dr. Aagard called UVMC to check on Kiya's condition. He was told by the staff at UVMC, that they didn't think Kiya would make it. On Saturday, Kiya will be four weeks old.

To each and every one of you, that has offered prayers on behalf of Kiya, we thank you from the bottom of our hearts. You have our sincerest gratitude.

We love you Kiya.

Our little angel baby

Little Kiya is almost three pounds! They have increased her feedings to 19 ml. every three hours. She seems to be tolerating her feedings well. Kiya had a very small feeding tube in her mouth but the nurses had to remove it. Apparently Kiya kept moving her tongue around and managed to dislodge the tube four different times. Looks like Kiya is already starting to call the shots!

Today they did a test/scan on her heart--(sorry-not to up on the medical terms). The "tech" said he thought everything looked OK. We are waiting for the official reading from one of the doctors--then we can cheer!

Tomorrow Kiya will have an ultrasound on her head. They will use the results from this test to determine the amount of fluid drawn and number of taps Kiya will continue to need. Taps are currently being performed daily. Hopefully Kiya has improved enough to get to skip a day between taps. She doesn't like having taps done.

Occasionally Kiya still has to be reminded to breathe, her symptoms are similar to sleep apnia. When she stops, she is gently touched and talked to and then she is up and running again. Once she can breathe regularly on her own, they can remove the breathing tube from her nose.

Kiya is such a little fighter. She endures all of the tests and tubes and just keeps giving her very best. The doctors have told Kris and Matt that she will not be going home before January.

We wish to thank each of you again for your support, your concern and your prayers. Kiya is truly our heaven sent gift. She has a sweet, pure spirit that can be felt when you are near her.

We love you Kiya
Grandma S

Successful surgery!

The "resevoir" surgery performed on Monday went well. We will have to wait and see how much Kiya will heal on her own. If she isn't able to drain the fluid on her own, a shunt will be inserted when she gets bigger/older.

On a positive note, Kiya is tolerating her feedings. She receives nourishment through two little tiny tubes in her mouth. They are in the process of trying to increase the amount they feed her every three hours. Kiya currently weighs 2 lbs 9 ounces.

On Wednesday, the large breathing tube was removed, and Kiya is now back to the small breathing tubes in her nostrils. It's bittersweet to be able to hear her tiny cries again.

Kiya's is a real trooper. She continues to endure all of her treatments and also continues to progress.

We love you Kiya!

Little Fighter

I had the opportunity this weekend to spend time with my brand new (adorable!) niece.  I honestly could never have imagined the sense of strength and courage that I could feel eminating from such a tiny child.  Kristen remarked that Kiya has taught her to "fight even when you shouldn't have to."  I couldn't agree more.  She continues to teach us each and every minute how precious life really is.

Monday was Kiya's first surgery.  The Doctors at Primary Children's hospital put in a reservoir to drain the excess cerebrospinal fluid from her brain.  The surgery went well and she will continue to recover at Primary Children's for the next few weeks.

We will continue to pray and hope for the entire Banzhaf family.  Matt & Kris are incredible and have so much optimism for Kiya.  One of the staff at PCMC commented that she knew Kiya would have a great life based on the amount of parental support Matt and Kristen have shown.  They are an amazing example of faith and love! 

Thank you all so much for your compassion and love.  It is deeply appreciated!

Our roller coaster ride

Thursday morning, Kiya was transferred to Primary Children's hospital. UVMC has an incredible NICU, but they do not have neurosurgeons and neurologists on staff. Kiya had fluid accumulating around her brain, and they felt that surgery would be necessary to drain the fluid surrounding her brain. She had developed a blood clot, and they weren't sure if the blood clot was the cause of the blockage, or if the "flap" in the brain was not functioning correctly.

Today, (Friday), Matt was able to meet with the neurosurgeon. The doctor said they are going to wait to operate and see if Kiya can drain the fluid on her own. They will do another ultrasound on Monday and check her status. This was the first good news Matt and Kris have had since Wednesday night.

Kiya has been one miracle after another. As mentioned earlier Kiya is the first baby they have had live with a hemoglobin count of 1. This is incredible, as the neonatalogist at UVMC has personally treated over 27,000 babies during his 30+ year career.

Kiya has made incredible progress on breathing. She has gone from a big tube in her mouth, to a C-pap machine, and is now down to a little breathing tube in both of her nostrils. Having surgery in itself is heartbreaking, but the thought of Kiya having to go through all the tubes again was additionally devastating.

Although Kiya has/is being treated by world-renowned physicians and the absolute best medical care available, none of us think for a minute that any of this progress is short of miraculous. We strongly feel that all of your prayers and faith are helping little Kiya progress each and every day. We can't thank you enough for all that you have done. Our prayers are being heard and answered.

Thank you, and we love you Kiya!
(Grandma Slatter)

Up and Down

The good news first... Kiya was the FIRST baby to survive at Utah Valley Hospital who had a hemoglobin count of 1.  A normal newborn has a count between 17-22 gm/dl.  She is absolutely a little miracle!

Sighs... Kiya's doctors told Matt and Kris that her health and recovery would be a roller coaster ride.  Unfortunately, Kiya is back on a downhill side of the roller coaster right now.  Although she has made considerable strides with her respiration, other areas of her little body are not functioning quite as well.  We will post more when Matt and Kris are more comfortable disclosing it... In the meantime, please continue to hope and pray for our little Kiya.  We love her so much and greatly appreciate having her special little spirit with us...

More Pictures

Matt and big brother Lex checking on Kiya... 

Kristen is so beautiful and such a good mother...

Tender Mercies

Kristen gets to hold Kiya today--a "skin to skin" hold. Before they would place Kiya in Kristen's hands and Kris would gently hold Kiya on her little bed. During recent visits, Kris was also able to keep her hand on Kiya's little head and bottom. Kiya can already tell her mother's touch and love, as she would calm down during those times, and her heart rate would also lower and settle. There is nothing like the love a parent has for their child.

Being able to physically feel Kiya against her, is such a tender mercy for Kris. So many times she has had an incredible need to hold her precious little baby. This is an answer to many heartfelt prayers for Kris.

Matt continues to be a source of strength for his loved ones. He spends every available second with his daughter. His gentleness and ability to calmly handle life's difficulties is a continual blessing for his family.

We are so grateful to our Heavenly Father for his generous blessings. We are grateful for the wisdom and care from the doctors and nurses. We are grateful to each of you, for your prayers, fasting and loving acts of service. Because of all your unselfish service and kindness, Matt, Kris and their family can accomplish what they need to do.
Grandma Slatter

Daddy's Update...

Kiya is doing well. Her heart has shrunk down to the right size. They took out the iv tube in her belly and put a pic line in which should be a lot better. Her fingers were not extending all the way which was troubling but today the fingers are extending and the thumbs are getting better. There should be a therapist coming to work with her soon on that. She has had three small feedings and has produced some stool. They still are uncertain as to how well her intestines are working. We will have to see. She will be taken off the oscillator breathing machine and have her tube taken out of her lungs tomorrow and put on something less invasive as long as the doctors think its OK tomorrow. Kristen got to hold the baby briefly yesterday.

(What a TENDER pic... Kris is such a great mom!)

Kiya has shown great improvement but I am still very worried about the feeding and being take off the oscillator.

Steph's note - We are all routing for her!  She has made such positive improvements in the last week... We can just continue to hope that her little life will keep getting better!  :-)

Kiya had another great day today.  She is now completely off her heart medication and the edema has subsided.  Her kidneys seem to be functioning more normally as well.  What a miracle!  Kiya's life and health has always been in the Lord's hands, and so far He is blessing her beyond belief.  Thank you so much for your love and prayers on her behalf!  She is definitely a tiny fighter, just like her mama! :-)

From Matt & Kristen

Great news today. The heart is looking much better. The expansion has gone down a good deal. That will help her get more blood to the other organs which will continue to help her heart improve. Her lungs are doing better. They reviewed the brain monitor and saw no seizures which is great. Today they want to lower the pressure on her breathing machine and wean her the rest of the way off heart medicine. They want to get her eating in another day or two if she has enough blood flow to the bowels. So good news today. Keep praying.  :-)

From Grandma Slatter

From Kiya:  (As told to her Grandmother S)
Mom gave me a bath today!  She swabbed me with cotton balls.  She says I'm so tiny that she worries about breaking me!!!--but it was the best bath ever.  My Mom is so gentle and soft. I calmed right down and listened to Mom tell me all about how pretty I am!

Dad has never left my side.  Boy is he tall--I already know that my Dad can beat up your Dad!  I know I am going to feel so safe when I'm being held in his strong arms.  I can tell my Dad will take good care of me forever.  I love you Dad.

Mom and Dad, I love you so much. Already I have felt an overwhelming amount of love from both of you. I love that you sing to me and I love the gentle, caressing  feel of your touch. I am so glad that you are my Mom and Dad.  I know that one of you is with me at all times.  I feel such comfort having you so close.  I feel blessed to have you for my parents. Thank you Mom and Dad. I feel your prayers and your deep love for me. I'm sorry that you are having to worry about me.
I also want to thank all of my family and wonderful friends that have fasted and said prayers on my behalf. I feel the strength and healing power from each of you. I'm excited to meet all of you soon. I already feel a connection with you. Your love and prayers are helping to get better and stronger each day.

Thank you again, and all my love to my parents,
Kiya

Tuesday, October 26, 2010

Today was a little rough for Kiya.  She is still retaining a large amount of fluid and has received large doses of diuretics to help reduce the swelling in her body.  Her heart is enlarged from the excess fluid and she has received two more transfusions in the last few days.  She is still covered and under very careful watch, with a nurse keeping vigil at all times. 

Several members of the family have decided to hold a fast in her honor on Sunday, and we would love to encourage anyone else who is able to do the same.  The Banzhaf family really appreciates all your prayers and love on their behalf!

Lex and Mason were able to go to the hospital for the first time today!  They were so happy to see their mom again! 

Kristen will be released from the hospital tomorrow evening and then she and Matt will alternate taking care of the boys and spending time at the hospital.  If you are interested in helping out, I will coordinate through Kristen and Matt as far as their needs are concerned.  Please feel free to call (801-755-5230) or email me anytime.

We love you Matt and Kris!  You two are amazing and Kiya is a lucky girl to have such great parents! 

Monday, October 25, 2010

She is SO sweet!  Her birth weight was 3 pounds, 2 ounces and she was a whopping 16 inches long!  Her condition today is stable, but she is on high levels of oxygen and they are trying to reduce her edema.  They have concluded that she had a congenital hemorrhage in the womb that caused her to have such little blood.  Matt and Kris feel that she has very good care from the Doctors and staff at Utah Valley Regional Hospital.

Kiya is so precious, and has such a strong will to fight.  We love her and continue to hope for the best!

October 23, 2010

After a few days without feeling much movement from baby Kiya, Kristen began to worry.  On the afternoon of Saturday, October 23, she and Matt went to the hospital to "make sure everything was OK."  After an unsettling ultrasound test, Matt and Kris received the startling news that they would soon be undergoing an emergency Cesarean section.  Kristen was quickly prepped and within 30 minutes baby Kiya was born.  She had a very white pallor and was instantly surrounded by medical personnel who gave her a blood transfusion and stabilized her condition.  Shortly thereafter, she was transferred to Utah Valley Regional Hospital with Matt.  Unfortunately, she had not been receiving adequate blood supply for several weeks in utero and her organs (mainly heart and brain) did not seem to be functioning properly at her birth.  Matt and Kristen were told that she would remain in the hospital until sometime around her due date.  At this point, not much is really known about her overall health or abilities.  Please pray for a miracle!

Respectfully yours...

In an attempt to keep everyone updated on the status of the Banzhaf family {and give Matt and Kris a little space to breathe and relax :-)}I have started a little blog in honor of Kiya.  Please excuse my lack of medical terminology, misspelling, syntax errors, etc... Also, please feel free to send me any email addresses of those who would like to be allowed to view the blog, or any additional comments, updates or suggestions to joeandstephlinford@msn.com.  I am hoping this will also serve as a journal of sorts to the Banzhaf family, so feel free to post comments to them!  I am sure they will love to read your encouraging words and will appreciate feeling your love and support!