It is never easy to give hard news, the doctors did their job with as much sensitivity for us, and Katelynn, as possible. The path that Katelynn is on has not been easy but it has made us grow and made us love each other all the more. We love this little girl as we have sacrificed so much and prayed for her. Many miracles have happened on behalf of our family and Katelynn. She is a miracle many times over.

I mentioned that Katelynn contracted another infection, this time in her GI tract. When the antibotics were given for this, tests reveled how damaged her kidneys are. Since heart surgery, which would require a heart and lung machine, is very hard on the kidneys, this issue affects the decision about her getting heart surgery. Her low and disfunctional plaetlets also complicate the surgery, especially when combined with the kidney damage. The doctors are evaluating options for her and we will know more in the next week or so-- it appears that two years is the most we can hope for Katelynn's time on earth. She is a part of our family and we are asking you to join with us this Sunday in a special prayer and fast for her. Our hope is that we can bring her home. Nathan said it best, "I just want to see her smile."

All I want for my birthday is...

Today is my Dad's birthday.. I felt awful I had completely forgotten, I have a little bit going on, still I felt bad and knew that I had no time to do anything special for him. Yesterday Grandpapa and Grandma came to visit Katelynn. While Grandma was holding Katelynn, Grandpapa was looking on he said what he wanted for his birthday, to hold Katelynn. How sweet is that! When we came in today for his birthday, all the nurses remembered and had things all ready in anticipation of Grandpa's date with his granddaughter. His big hands are very tender, and he fretted hoping to hold her just right-- he did a great job. All of these sappy women loved it.

Holding my little pearl.

Katelynn loves to hold her breathing tube, it is kinda funny some nurses will move her hand-- but those that know her don't fuss about it. Every baby has their comfort item, a cuddle bear, a favorite blanket a pacifier-- Katelynn has her ventilator tube, and why not it helps her breath. I think Katelynn's other comfort is being held by her mom and dad. Her heart rate calms and she loves to hold our hands. I can't get enough of holding Katelynn, and I don't think she gets enough either, till tomorrow my little pearl.

My dear friend Cynthia visiting from Missouri.

Katelynn has a GI infection which is quite serious. It is a complication of her poor heart function. She is being treated and needs to have a pic line placed directly in her chest because the two previous attempts in limbs have failed. The heart team meeting has been moved to Tuesday. We ask for your prayers that she stops getting infections so that she can qualify for heart surgery.

Not trying to be suspenseful here, the heart team first would let us know on monday, then wednesday and now we will have a big meeting with them on monday at 3pm then we will know when and if they are planning to do the heart surgery. Oh the wait!!

Time with Grandma and Grandpapa

Mamma Greene here-- I look forward to meeting with the cardio team today, Katelynn has an infection and had to receive another spinal tap, her third, poor little thing. I am amazed at how submitting Katelynn is to the IV team, she doesn't fight them and seems to just accept the procedures that need to be done. The IV team refers to her as a little pin cushion. Between her platelets, IV's and medicine's she has had to endure alot of needles. She is one tough little girl. Hopefully we will get a timeline for the heart surgery. This piture is of Katelynn in her little corner of Primary Children's NICU, bed 17.

I wrote this poem:

Permission

In life we learn to ask, “may I?”
Politeness rewards those requests
Youth seeks permission to
Wander the hall, to leave, to go..

Youth I ponder, not of mine but her’s
Anticipation mixes oddly with grief
None seek out these halls I enter
Just my name given, access granted

My child hooked to wires, a tube to
A machine aids her breath.
Heart pounds against her chest
Beating a rhythm against natures ideal

As youth lessons come, “may I?”
Trips on my heart, not the tongue.
Why must I ask to touch what I bore.
To seek permission to hold, my baby.

Denial is not meant to cause me pain
To ease hers, the first concern
Our goal the same for her to heal
Yet my arms remain painfully empty.

God I beseech for the chance
Permission pleaded to be equal
To mother this miracle soul
A child to raise.. to hold.. Please.

By Leta Greene

Love holding our girl!

Katelynn’s heart conditions may be compromising other organ functions (lung, kidney, blood platelets, possibly liver etc.). The doctors are suggesting that her open heart surgery may need to be performed earlier than planned. (Having several months age is an advantage for survival.) There are decisions to be made.At this point, it is not known if it is poor heart function, or possibly more chromosome involvement causing the other organ problems.

But Katelynn is an amazingly strong spirit and beautiful - with a square little face and tiny nose, She has long dark hair, an inch long, She was awake today and looking at her Mom and grandma and it felt like sunshine. Charlotte

Katelynn is remaining stable but has had fevers related to infections. Her condition this morning was discribed as neither progressing nor regressing. Leta goes in to be with her every afternoon for4-6 hours. When Katelynn is doing well Leta gets to hold her for up to a half hour. Thank you for your prayers. Love, Charlotte

Just returned from being with katelynn-- She has a wound that is being monitored on her arm and required several shot, poor little girl! Her heart beat is alot calmer than it has been for several days. Leta

This is the first time I was able to hold katelynn. My whole bed was rolled into the University of Utah NICU-- Katelynn was placed in my arms, this was hours after she had been born, it was just for a few minutes and no it was not enough, but so great to finally see my little pearl.

Katelynn was born 1 April 2009. Long before she was born, she was a miracle. Our two other children came as our 6th and 9th pregnancies. We were done trying and felt very blessed to have the two children we had. Then, we felt that God wanted us to get pregnant again. This was a challenge of faith for us; we wanted more children, but because of the miscarriages and my hip and back problems, we felt getting pregnant to be to large a risk. So, when we were inspired to get pregnant it was a big decision. Then Nathan, my husband, had a massive heart attack, died briefly and then came back. We were very thankful and knew that though Nathan had moderate-to-severe heart tissue damage, we needed to do what God was asking us to do and get pregnant, so we got pregnant. We went to a follow up appointment for the heart and it was miraculously healed. That is when I first thought I wouldn’t lose the pregnancy. When we found out we were to have a girl, we choose the name Katelynn Faith. Katelynn means ‘pure’ so her name means “pure faith”. On December 26th we were told that our little girl had Trisomy 18, which accompanies heart, brain and kidney problems. Trisomy 18 usually means that the baby dies either during birth or shortly thereafter. Fortunately it came back that she didn’t have Trisomy 18, but a rare Chromosome problem that is completely unique. The two other babies on medical record with similar chromosome issues were both terminated. Since her birth, the problems that were expected have gotten better, and other unexpected issues have arisen. Her symptoms and her chromosome issue track what is known as Jacbsen's Syndrome: http://en.wikipedia.org/wiki/Jacobsen_syndrome. She has additional chromosome material, however, that seems to also be causing additional defects, including with the kidneys. We know that Katelynn's time with us is a miracle and whatever problems Katelynn faces we know that God wanted her in our family and we feel honored to have her here. Moreover, Katelynn's presence in our lives and my mobility issues with my hip and back have allowed us to see the miracles of many of you who have served us so unselfishly. Our thanks to all of you for that support, and especially thanks for your prayers, your fasting, and your love.