Kyra's Miracle

Hospital Stay - Week 3

2011-07-03T06:50:00.001-07:00

We are approaching week three of this hospital stay and are all exhausted. I truly do not know how we did this the first 15 months of Kyra's life. I'm so proud of Kory. He stayed with Ky for 5 straight days, no breaks, so that I could go to work. Honestly he deserves a metal of courage and rewards for his patience. It is not easy being in the hospital for that length of time without someone to relieve you. I am climbing the walls after two days. Kyra requires constant supervision and stimulation. HE IS A GREAT DAD!!!

Kyra is slowly making progress and yes, the bowels are working. Only those parents with a short gut child can truly appreciate and understand the celebration of poop. Kyra is having bowel movements every 1 1/2 - 2 hrs again. She is still in alot of pain from the surgery. The surgeons reported that there was a large amount of scar tissue that had to be brought down and the small bowel was manipulated alot so we should expect this pain response.

We have managed to keep Kyra busy with several projects that are transforming her hospital room into a zoo. Kyra can be bought with stickers, as her physicians and nurses have figured out. She also enjoys music therapy daily during the week. You would not believe the number of volunteers that give of their time to play and entertain with the kids here.

Thanks Aunt Cher for all the projects. We can always count on you, for the crafts and EVERYTHING else we need. You always know before us what that need is.

From Daddy

2011-06-24T09:44:00.000-07:00

Kyra

by Kory Conrad on Thursday, June 23, 2011 at 11:40pm

For the past two months we have been in and out of the Cleveland Clinic. Today they decided to go in and fix a stricture at the top of Kyra's Colon. The surgeons were reluctant to go in because the bowel can be damaged easily, it's fragile, with no guarantees that a new stricture wouldn't form from the scar tissue that is left over from the operation.

Two years ago on this very date Kyra had her first surgery. Through the skillful hands of Dr. DiFiore he was able to attach 5 separate pieces of small intestines together. One piece was about a cm long. He managed to accumulate 9 cms of intestine. We were told that a child needed 70 cms to live.

Kyra's Neonatologist Dr. D'Netto never let our family lose hope. There were many dark hours throughout the first years of Kyra's life, but Dr. D'Netto was a beacon of light especially for my wife. Kyra's guardian angel walks on Earth. She goes by Marita. I would be amiss if I didn't mention the skilled work of Kyras gastrointestinal team led by Dr. Radhakrishnan. They formulated a plan for Kyra and it's surpassing my family's dreams.

To make a very long story short. After today's surgery the surgeons informed us Kyra has 70 cms of small intestine and 30 cms of large. I asked the surgeon if you didn't know Kyra's back story, what would be your prognosis. He said "a normal life". I never thought I would ever hear those words considering Kyra. I am a blessed man.

Now anyone who knows my family. Kyra has had many ups and downs. I'm always cautious talking about the future for Kyra because we are reminded daily there are no guarantees for a tomorrow. I now have "hope" for a tomorrow.

2010-10-02T14:36:00.000-07:00

I apologize for not updating the blog for such a long time. Our lives have been so busy lately and by the end of the day I am utterly exhausted. I am happy to report that Kyra is doing wonderful. She is developing a pretty charming personality and knows just how to work you with that charm. She keeps us busy that is for sure. Developmentally she is improving everyday. Kyra still refuses to walk on her own but she willing to walk with the pediatric walker without our assistance now. I still say the only thing holding her back is the fear of falling. Her vocabulary is amazing. She is constantly chattering. Kyra can fully express all different emotions. Her "surprise face" is too funny. Along with knowing the different emotions also comes the understanding that maybe we are not reacting appropriately to her cues. She will begin to throw a fit about what she does or doesn't want. If you ignore the outburst she will politely get your attention and tell you, "Kyra crying" as if questioning whether you heard her or not and helping you to realize your have not responded as she would like.

Her favorite thing to do lately is to go outside. She loves her walks and enjoys feeding the neighbor's horse. Kyra gets a bit of a grizzly voice when she calls for them. Well actually orders them to come over is more like it. "Come here Maggie! Come here Oliver!" Kyra still believes she controls the world. She says their names so clear and will inform you that they like apples, carrots and "graaase"

Kyra also enjoys greeting the contractors working next door on our new home. She yells out "Hi" each time I take her out. They usually cannot hear her from where we are but never the less Kyra's determined spirit keeps her yelling until one of them notices her. Daddy spent several LONG days digging a basement for our family. Digging a basement on the "rock" is a somewhat impossible task but he did it. Now we will have a greater peace of mind knowing we can get Kyra into a safe environment in the event of severe weather. There were far too many times this past summer when I worried about what we could do to keep her safe with little options. Now we know that we can seek shelter and not compromise her health in the process.

Kyra also learned about the equipment Daddy used. One day her nurse took Kyra outside and as they walked by the bobcat machine Kyra announced, "Bobcat" Later that day the nurse wrote in her notes the development Kyra was making: "Kyra said "horse" when she saw the horse, "digging" when she say Daddy digging in the ground and "bobcat" when she saw the bobcat." I'd love to know what on earth the person reviewing the notes thought about Kyra seeing a bobcat. Or better yet, why wasn't there a concerned phone call made?!

We still go to the Clinic every two weeks for IVIG. Kyra enjoys her visits with the staff there. She is especially fond of one of the nurses, Dan. The last two times we have pulled into the parking garage, without a word from us, she announced "Coming Dan!" She greets people as we walk onto the elevator and two weeks ago before I had the chance, Kyra thanked the gentleman that made sure to hold open the doors so we could make it on the elevator. She is a polite little one and so appreciative of the attention given to her.

For many of you this blog and our stories are all you know of Kyra. Most of you have not even physically scene this little miracle yet you know her and her beautiful spirit. So often I have expressed my sincere gratitude for everyone associated with Kyra's blessing, the nurses, doctors, family, friends, everyone. Daily I recognize how much we have and how far we have come together. The moments and the memories our family gets to create and cherish are more than we thought possible. I could never say enough about each one of you and how your continued support lifts us, drives us and blesses us. I pray each of you recieves the same blessed gifts as this:

A week ago I was sitting across the room from where Kyra was playing. She was content, leafing thru her books and making the noises for each animal on the page. The next thing I knew she had made her way over to me, reached her hands up, hugged my legs, sweetly said "I love you mommy" then lifted her head up with puckered lips. Upon recieving her kiss she simply turned and scooted back over to her books. Nothing more. You can only imagine the tears that came flowing ... .what an amazing gift when you recieve love.

Walking, Driving and going to work...

2010-07-01T16:01:00.000-07:00

Kyra is a busy, busy girl. She loves to go outside and watch Kaden & Mikahla play basketball. She enjoys taking walks to talk with the birds or watch the neighbors' horse graze. She has become a little bossy too. The other day we were watching the horse, as he headed toward the barn, Kyra shouts in a somewhat demanding tone "Stop, horse, come back here!" I believe she understands that she controls our world so why not everything else?!

Kyra has a car now. What a great way to distract Kyra from her therapy sessions. Little does she know that this activity helps build up her muscles and will provide her the skills for walking. She is able to push the car up and down the driveway now. She moves very slowly but she is determined. Too cute... she gets into the car and says "I'm coming" over and over about 12 times before she makes it to you. I applaud her determination and focus.

We also found a pediatric handicap walker at a local goodwill store. What a find. It is in excellent condition. When I brought it into the house Kyra was all over me. "Wow Mommy Wow" she exclaimed several times as I scubbed it down. It is shiny and she was very curious to see what I had - that is until I stood her up to it. Not as much enthusiasm. We keep after her with this, she does not cry as much as she did that first day. But not 100% sold on the exercise either. The walker allows us to let go of her hands and gives her the control. It has been a great way for her to build the confidence she needs. I truly believe our biggest battle is the fear of falling. I hope we can overcome this soon - she is getting heavy.

Ok so if I haven't said it before, Kyra is remarkable. I am in awe of what she is able to understand. Two nights ago, Kyra emptied out the toys of her "purse" ( a clear bag with a long handle.) I watched as she struggled to pull it up to her shoulder. Once in place, she scooted across the floor heading toward the hallway and yelled "Bye Mom" I asked her where she was going and she sweetly replied "work" rounded the corner and stopped at the wall that still displays her "artwork." She put down her purse and carried out a display of coloring on the wall. Moments later, she picked up the purse, pulled it to her shoulder and proceeded to come back into the room "Hi Mom." Now how amazing is that. Kyra has no concept of where we go each day. Her knowledge of the world consists of our home, our neighborhood and the Cleveland Clinic. But apparently the girl pays attention to more things than I know. I always tell the nurse each day where I am heading, to work or to the store. At those moments Kyra is usually playing or browsing thru her books and only seems to interrupt her activity to say "bye, bye" and blow me kisses. Who knew she was paying attention the whole time.

Other moments that have taken place over the last few months.... Kyra's vocabulary is expanding. She is putting sentences together. I heard her call for her "sis-sis" last night. When Mikahla came running down the hall Kyra asked her "want to play with me?" They have a hand-jive song called "double-double" they enjoy singing together.... At Kyra's last Cleveland Clinic visit Kyra said her doctor's names. Ok, Radhakrishnan is hard - she calls him "Krishnan" but she says Marita (Dr. Marita D'Netto) as clear as can be.... Kyra is also working on her nursing/doctoring skills too... she has a Doctors Kit and checks the temperature, heart rate and blood pressure of her teddy bear 3-4 times a day. She always reports he is "35" degrees and doing "good." Check out this photo, she wanted a cap and mask too.

Happy Birthday Kyra - Wow 2 Years Old!

2010-04-14T16:08:00.000-07:00

Well it is official Kyra is 2! This past week she crawled twice on her own, quickly recovering into a sit once she realized we were watching her. I guess she wants to keep this a big secret. Kyra also pulled herself up to her feet at the ballet bar yesterday. AND the true test that she is 2 - Kyra drew a masterpiece on the wall - so proud saying "Did this - BLUE"

It hardly seems possible that it has been two years already. This tough little girl has blossomed in so many ways. She has become "Miss Manners" using her "pease" and "t-ank you" All day today she was saying "t-ank" you to everyone for all her gifts. And early this morning she tossed Nurse Becky a toy and told Becky "welcome." Kyra got a surpise this morning with a BIG, BIG birthday cake from Becky's husband, Jason. He made this amazing Mickey Mouse Club House 3-D Cake. Thank you Jason and Becky. We managed to get some icing on her lips and she announced "Mickey!" She loves her Mickey Mouse.

This week has been a bit emotional for me. My heart has been filled with happiness and excitement reaching this milestone. Early this week I had an opportunity to visit with Dr. Marita D'Netto and speak with a few nurses from the NICU. I have also become more aware of the friendships (actually family relationships) created with our home health nurses, Becky, Barb, Kris and Diane. All of these individuals have forever changed our lives. So today marks a birthday for Kyra but it also marks a "win" for all those who have been a part of her progress. I can only hope that each one of you understand that they are so much apart of our family smiles, not just today but everyday. Everything you have done, everything you have given, and everything your dedicate yourself to MATTERS!

Our friends and family have been remarkable and a great source of strength. Someone once asked me "How do you do it?" My answer was "anyone can do this just as long as they have OUR family and OUR friends behind them." We have an amazing support system.

Today I recieved a beautiful bouquet of flowers from my sister with a card that read: "Miracles happen for those who have the strength to believe." So true, Thanks Cher!

Check out these Miracle Moments:

Calling "Tweet-Tweets"

Excited to see Mikahla & Kaden roll the ball to her

Birthday Girl blowing out her candles
She DID IT!!!

Happy Easter - check out my bunny face

2010-04-04T05:26:00.000-07:00

Sorry for the delay in updating the blog. Kyra is doing great. It has just been very busy in our house lately. Mikahla has been involved with basketball, Kaden with Boy Scouts, and Kyra is busy pulling out all her toys, leaving them thru the house. Yeah a regular family!!!!

Kyra is still going to The Cleveland Clinic every two weeks for IVIG and checkups. She is remarkable. Her replacement fluids now run at 80cc/hr for nine hours and her IV supply company has divided the fluids into two bags to allow Kyra to wear her backpack during the day. This helps free her up and allows her to explore. She is now rocking back and forth with one knee in a crawl position but still apprehensive and will not get up on the other knee. She is recieving physical therapy one day per week. The therapist is surprised at how quickly she is responding and improving. We also put up a ballet bar and mirror to encourage her to pull herself up. Although it takes ALOT of encouragement she will stand for a good 8 minutes and is no longer locking her knees.

Kyra's vocabulary is ever expanding. She repeats nearly everything she hears. Kory and I put on music for her entertainment when we change her broviac dressing. She enjoys the Jersey Boys and now sings along (with actually words matching) to "Sherry Baby" and "Big Girls Don't Cry." Afterwards she dances to the rest of the CD. So fun to watch. She is definetly a Conrad - LOVES, LOVES her music!

Kyra enjoys ALL her toys!

Hanging out with Sis-Sis

HAPPY EASTER - LOOK AT MY BUNNY FACE

2010-01-24T16:25:00.000-08:00

Since my last post, Kyra was hospitalized again. This time for six LONG days due to a gram-negative bacteria. Trying to keep her entertained in the hospital was a job in itself. If I didn't already appreciate our home nursing now I definetly know just how much I could not make it without them. Whew! I quickly realized that Kyra has been constantly engaged with activity and entertainment from at least one person. I guess we were trying to make up for lost time during her stay in the NICU. Now, I make sure she spends a little time playing by herself. I have actually warned Mikahla "no I am watching her and she does not need anyone to play with now." Mikahla doesn't get it yet, but she is approaching pre-teen years and will appreciate my strategy later. As for Kyra's bug, no need to replace the line. She recovered and we put good use of our time in the hospital. Kyra began taking water out of a bottle - now we are transitioning to a cup. She is actually asking for a bottle now. She is also eating a bit more. We are seeing her throw a fit if we do not get the cup or food in fast enough - ahh a typical toddler emerges.

I have realized I have not added photos of Kyra in a while. She is growing so fast and learning so many new things. She is our little greeter. Anytime we walk in the room, we hear this sweet little girl say "hi." and if not acknowledged quickly enough you hear a very loud and stern "HI!" She makes her presence known. Here are some big girl photos.

SOOO BIG!

FEEDING HER BABY

BABY HAS A G-TUBE TOO. THANKS NURSE BECKY!

"IT IS A WONDERFUL LIFE"

2009-12-22T19:19:00.000-08:00

I have watched the movie "It is a wonderful life" so many times. I hold back tears and smile everytime I hear the bell ring.

It has been one year ago when we spent our holidays huddled around Kyra in prayer as she struggled to get thru two neurosurgeries back to back. I held onto hope but honestly I did not know if she was going to make it thru those days. To look at her today, you could never imagine the path traveled. She is a bright child, an amazingly forgiving child and a loving child. Her smile captures you and reminds you how simple it is to achieve happiness in this "wonderful life."

This is not an easy journey by any means, but what meaningful journey is? There are challenges and mountains but they are matched with wonderful rewards. I have been given a true gift this Christmas. This gift - you cannot wrap, contain it in a box, no need to put a ribbon on it - it is simply the most beautiful blessing - to be home with my family, in our home, filling the house with love and laughter. It is the magic of Christmas that reminds us how truly valuable family and friends are in our lives. So as we set by our tree I will smile all the more for I know there are many, many bells ringing for all the angles in our lives... This journey has never been traveled alone. Our family and friends are our Angles, you have been tremendously supportive and we are grateful. It is your thoughts, care and prayers for our family that help provide us these blessings. Today I wish you all the same blessings of close family, good friends and joy this holiday season and all thru the New Year. And may I just say I marvel in how you so brilliantly hide your wings.

Merry Christmas!!!

We love our OWN bed!

2009-12-22T18:27:00.000-08:00

Kyra has been hospitalized twice since our last post. The first time was due to a high temp, which lead us to the emergency room with a blood draw and a dreaded possible line infection. After three days in the hospital it was determined that the positive blood draw was a circumstance of cross contamination. The fever was due to an ear infection, which was easily treated during her stay. THANK GOODNESS! We are fortunate that Kyra has been able to avoid hospitalization this long (thanks to great nursing care at home!) Her absent immune system makes life difficult, especially with school age children and a teacher in the house. I can tell you I have a heightened awareness, I am quick to exit an area if I hear a sneeze or cough. I can sympathize with someone from a distance!

A week ago we spent time in the hospital because Kyra's broviac line had a tear. Her line was able to be repaired without surgery. Kyra's broviac was cut in two pieces (which made mom very nervous) the bad was disgarded and a new piece was threaded into her existing line and glued together. We had to wait 48hrs for the adhesive to dry and hope that she had an open line when we were able to access it again. Who knew you could glue together a broviac line?! I was skeptical to say the least - I was thinking "it's rubber, like trying to glue two rubber bands together." So we waited and prayed... please no infection

When you have a child with a compromised health condition, your life changes in more ways than you can imagine. Not only are you aware of the coughs around you... you learn more about how fragile life can be and how one thing can turn your world upside down in a single moment. Kyra's broviac line is truly a life line in every since of the word. The fact that she had a tear in the line with no immune system is dangerous. Kyra requires 20 hours of fluid a day thru her broviac to keep her nurished and hydrated - not to mention the medications running thru this line. If nurishment and hydration were not enough to age mom and dad then we add the fact that bacteria could have gained access due the tear in the line. But that is not enough... if the line is not open, Kyra would need a new line = surgery. Kyra will require long term IV support and we need to preserve her access points, surgery should be avoided at all costs.

Happily we can report, Kyra's line was open and we went home. We went home, feeling at least five years older, sooo tired and ready for our own bed. Kyra was just as happy to be home as she spread all out in her bed, rubbing the sheets!

2009-11-05T19:10:00.000-08:00

Since our last posting, Kyra's replacement fluid was turned down to 90 cc/hr and we started bolus feeds. Entral bolus feeds are still given thru the g-tube but differs from a continous feed. A bolus feed involves using a syringe to give a quantity of food into the feeding tube at regular intervals. In th past this method was not successful. We would get maybe 20 cc in and clamp her g-tube only to have her bring it up within the hour. Now I am happy to announce Kyra tolerates 60cc in a two hour time frame. This is wonderful for Kyra - we are able to disconnect her from one line and provide Kyra with more time for mobility. Kyra has become very aware of her tubes and their limits. When she comes off of them even for a few hours ... she is all over the room exploring and playing with her siblings. We are even trying to get her used to wearing her backpack. She tolerates this some days - others she is annoyed by the bag.

The last couple days Kyra has decided she is going to eat again. She had regressed, fighting us for every bite. However, Nurse Becky, has found that she can get her to eat by bargaining toys with Kyra - no bites, no toys. It is working. Today Kyra enjoyed a small taste of a sucker - a halloween treat! She said "yum-yum" as she licked the sucker..... Speaking of Halloween - check out our lil' pumpkin!

2009-10-06T18:45:00.000-07:00

Kyra's vocabulary is growing every day. She attempts to repeat every word and every sound she hears. She can tell you what a cow says. So cute to watch her position her lips first then make the sound. She can say "pa-pop" and calls Kaden "Bubba" Just today as Mikahla was rushing by her she called out "Ta-ba" Mikahla stopped in her tracks. "No, no" has also been perfected while she shakes her finger repeatedly.

We have been working on her tummy time. Not a fan of this position, but she is beginning to tolerate this a little more each day. I was concerned with Kyra's mobility due to her reluctancy to go into a crawling position, but Kyra always finds her own way. She has mastered the "scoot" She crosses her legs indian style and maneuvers across the floor on her bottom.

Almost three months at home now. I have to say our routines have provided me with more time with all three children. I am so pleased to announce Kaden has joined flag football and I actually get to see a few games. Kory and I went to a class reunion a few weeks ago. First time I have been more than 10 minutes away from home without a nurse in place. ( Thanks Cher!!!) Prior to Kyra's discharge the Clinic nursing staff told us, we would get home and wonder why we were ever so nervous. Well, I still hold my breath every now and then, but I honestly believe I could mix TPN with my eyes closed.

2009-09-18T18:08:00.000-07:00

Good News - Kyra gained weight! Before turning down the TPN and replacement fluid rate Kyra weighed 21 lbs. 10.5 oz. She is now at 22 lbs. 7 oz. WOW! WOW! WOW - check out her bowel! I know it seems I am bit too excited and I am. But when you get good news of ANY kind it is cause for celebration.

We have been working with Kyra on using sign language to communicate. She has successfully mastered the words "dad" and "more." Yesterday afternoon Kyra and I were able to take advantage of a beautiful day and went for a walk around the neighborhood. She was startled a bit by the breeze but that soon passed as she looked at the trees and birds with wide eyes. It is always an renewed sense of innocence when you watch a child smile and take in the little things we sometimes fail to appreciate. As we ended our walk Kyra was growing pretty tired, rubbing her eyes. It was clearly time for a nap. As I leaned over to pick her up from the stroller, Kyra repeatedly tapped her fingers together and verbally attempted the words "more, more." Once again Kyra so simply reminded me of the little things that turn into BIG moments in our lives.

2009-09-04T18:31:00.000-07:00

On Monday we turned down Kyra's TPN and replacement fluid rate. Our hope is that she will maintain her weight or have very little weight loss. This is a good move for Kyra. TPN is hard on the liver. We must keep Kyra's liver in good shape in order to ward off a need for a transplant. We are very happy to know that Kyra is doing well enough so soon after discharge that we have this opportunity to turn down her rates. On our next visit to the Clinic we will find out how Kyra has tolerated this change.

Kyra has been receiving OTPT at home for two weeks now. It is so amazing how quickly her vocabulary is progressing. It seems each day she is saying a new word. She makes me laugh watching her hold her little phone while waving at the same time and babbling "he-yo" and "ba-bye" She is also beginning to use sign language to communicate with us.

Kyra is off of ALL pumps for three hours a night and is utilizing her time moving down the hall in her walker. She has not mastered moving foward but she is fast to push backwards. It is cute to watch her go to the end of the hall, she yells out and Mikahla turns her around. They repeat this several times a night. I am not sure who enjoys this game more - (them or me)

IVIG Today

2009-08-28T15:45:00.000-07:00

We are sitting at the hospital waiting for the IVIG. The infusion runs for four hours and makes for a long day. But we are fortunate that Kyra is also able to see her specialists during her infusion. Kyra has a GREAT TEAM dedicated to her care. Kyra's conditions are extremely complicated. She is not a regular order of "fries and a small shake." There are so many factors to think of when examining her care. The collaboration of her "team" is REMARKABLE!!!!

As a mother of a "sick" child you are always pleased and yet somewhat terrified to hear the words "let's try." But today Dr. Radhakrishnan said "try" turning down Kyra's TPN and replacement fluid rate. I am so eager to try this approach. With this step we will see how she fluctuates in weight. If all goes well we may find that we can try to turn the TPN down again. Great relief for Kyra's liver. Kyra will have to prove that she is ready for this and hopefully keep taking oral feeds. These are small steps that have big rewards!

Kory is Kory. During Dr. Radhadrishnan's visit today he utilitized the time to get some advice on the anatomy class he is teaching this year. I just took my notes on Kyra's changes and smiled remembering a moment that brings me to laugh now but at the time I am sure it was seen as inapproriate, especially for the physicians involved... During the discovery of Kyra's hydrocephalus Kory and I were in the waiting room, awaiting the arrival of the neurosurgeons to explain Kyra's condition and the surgical procedures available to hopefully eleviate the fluid causing pressure to her brain. The tv was on in the waiting area and it was just announced that Obama was looking at Dr. Steven Nissen, Cleveland Clinic Cardiac Surgeon, as the Surgeon General. Kory was blown away. Now in walk the Neurosurgeons, they sit down and delivery what is devistating news to us about Kyra's "new " condition. I get very emotional wondering what more can she endure. And well Kory is Kory. He is in the same room, he just heard the same news, but he copes with his emotions VERY differently... He asks the surgeons if they know Dr. Steven Nissen. They try to cover but I can see them looking at Kory like "is this guy for real. We just delivered frightening news to a parent and all he can do is ask about Dr. Nissen." We can laugh now but I'd be willing to bet they were wondering where on earth is this guy's head.

CELEBRATE - WE HAVE NIGHT NURSING!

2009-08-16T16:28:00.000-07:00

YEAH we have night nursing! Just in time for Kory and the kids to head back to school. Things are falling into place. Kyra is doing wonderful. She has been back to the Clinic twice for her IVIG infusions and her physicians are very pleased with how well she is doing. We are hoping that soon we will be able to cut back on her TPN. Our hurdle to overcome - solid foods - we are working hard on this.

Kaden and Mikahla are getting more comfortable with Kyra. On any given night I can find Mikahla heading to Kyra's room (after I put her to bed) to play. I just can't bring myself to stop her. I watch outside the door listening to the two of them laughing. I cherish every little giggle. I have been pleasantly surprised with the way Mikahla is with Kyra. She has never been the "touchy, feely" type - getting a hug is sometimes a chore. But when she is with Kyra there is this gentle, nurturing soul. Kaden is always the entertainer. He gets out his guitar and plays a little toon or dances for Kyra. Just last night he was performing magic for us. Kyra enjoyed watching him shuffle his cups around.

Kaden & Kyra playing "peek-a-boo"

Good times with our "She-Ma" & "Pop-Pop"

2009-07-29T18:12:00.000-07:00

Not since Kyra's birthday party at the hospital have we been able to have all grandparents in the same room with all three children. This photo is worth a million smiles!

2009-07-28T17:50:00.000-07:00

Kyra has been home nearly three weeks now! We are so pleased with her oral progress. She is now grabbing the spoon to put the applesauce in her mouth (finishing a jar a day.) We are trying to get her to take carrots and chicken, but she prefers the applesauce. We will keep at it. I consider this a personal victory to get her eating. I never would have thought we'd be this far.

I am encouraging Mikahla and Kaden to get more involved with Kyra. When she first came home Kyra was startled when they would get too close. There has been progress - a couple days ago I found Mikahla head to head with Kyra watching a movie. Kyra had discovered a typical "brother and sister game" - she is fascinated with pulling their hair. Ahh, the joyful sounds of siblings. Kaden is quite the germ watcher lately. I find him going from one santizer bottle to the next as he enters in and out of rooms, all so when he comes close to Kyra he can gently pat her head. I think this is his way of saying he cares and is happy she is home.

I have returned to work. It is difficult to leave each day, but what a reward at the end of my day.... walking into my home and seeing the beautiful smiles of all my children. Sometimes we all take for granted the "little" things that make a BIG impact on our lives. I still shake my head in amazement at where we are today. What blessings we have!

Applesauce is not so bad

2009-07-19T08:51:00.000-07:00

It has been a struggle to get Kyra to take anything by mouth. It would usually take 20-30 minutes to get her to eat one-half teaspoon. But today she took applesauce without much resistance. I was actually able to get Kyra to eat 2-3 tsp in approx. 10 minutes. BIG PROGRESS! She even willingly opened her mouth a few times - no need to sneak the bites in. In the end she was all smiles.

KYRA IS HOME!

2009-07-16T03:29:00.000-07:00

Kyra was discharged from the hospital on Thursday, July 9th. We have made it one week... WOW what a week it has been. Kyra is adjusting nicely to her new surroundings. She truly enjoyed her ride home. I would have loved to know what was going through her mind as she gazed out the window of the van all wide eyed, absorbing all of this new world.

Our home has been turned into a pharmacy and we are all trying to find our way into a "normal" routine. We have had a some bumps in the road understanding the new equipment and protocol for administering tpn. Dr. D'Netto is on speed dial to help save the day. Kory and I comment at least three times a day, how fortunate we are to have Dr. D'Netto. She is an amazing, giving person and always seems to help find a way to keep us laughing thru challenging moments.

Currently Kyra has two nurses, Diane and Becky, that cover our day shifts. Both are easy going individuals who have helped tremendously in our transition. I am delighted with their care for Kyra and their ease in joining our "family." We are still struggling for night nursing and hope that this will be resolved before Kory and the kids go back to school!

To our NICU Family:
We could never fully express our sincere gratitude. We have all been thru difficult moments along this road and this journey home is a reward for everyone. Your hard work, effort and relentless determination has given our family opportunities that we never imagined. Your talented hands and hearts help make miracles possible. It has been our pleasure to come to know each and everyone of you. We will never forget your commitment and your beautiful spirits that will remain with our family always!

Ma-Mom loves this!

2009-06-07T20:26:00.000-07:00

Need I say more...

Thank you Starcher Enterprises & Wolff Brothers Supply

2009-06-07T19:35:00.000-07:00

Preparing for Kyra's homecoming, we found that our home needs improvement. The common cold is not the only threat to Kyra. Her immune condition makes her vulnerable to many airborne allergens and molds. Upon speaking with Kyra's doctors and learning that she would benefit from a air purification system in our home, we contacted Starcher Enterprises to request a quote to install a whole home system. John Starcher came out to our home and explained that not only can they install a whole home system, American Standard's Accuclean, in our home but that he and his distributor, Wolff Brothers Supply, Medina OH, would install and provide the system at NO CHARGE to our family. Starcher Enterprises and Wolff Brothers Supply had the unit installed within two days. "Thank you" are words that cannot begin to truly express our gratitude to both companies. We can only hope they understand how their generosity has changed our lives by helping to provide a safe, healthy environment for our daughter to live, grow and finally call home! THANK YOU STARCHER ENTERPRISES! THANK YOU WOLFF BROTHERS SUPPLY!

D'Netto said "opportunity" - I yelled "HELP!"

2009-06-07T15:17:00.000-07:00

Kory and I have been engaged in learning all the aspects of Kyra's daily schedule. The nurses have taken such care in teaching us how to properly administer medication, change dressings, and combat those frustrating tiny bubbles in the lines. This has been a true learning experience with some hairy moments. Both Kory and I have witnessed Kyra's g-tube come out. Panic! Or as "ALWAYS POSITIVE" Dr. D'Netto put it "Great job Kyra, you provided Mom an opportunity." While that was not exactly what I was thinking at the time, I must confess I now appreciate the fact that I could learn how to replace the tube in a controlled environment. I cherish Dr. D'Netto's optimistic approach. From the very beginning she has reminded us "anything is possible." Her faith, hope and positive thinking have provided us with smiles (even on difficult days.) We are fortunate to have such a talented and compassionate physician in charge of Kyra's care. She is an AWESOME champion for Kyra!

2009-05-14T14:51:00.000-07:00

Wow, what a busy time this has been. Since Kyra's birthday party she has explored the outdoors. Nurse Laura and Dr. Littner were able to get her outside on a warm day. This was the first time Kyra had sunlight hit her face. She seemed to enjoy her time but was a little startled by the breeze.
****
As many of you have heard, YES, we are trying to prepare for Kyra's homecoming. Kory and I are getting a crash course in nursing - well modified nursing care as it applies to Kyra. We are practicing the art of hanging TPN and replacement fluids. Over this past year we have seen the nurses make this connection so many times and it appeared somewhat easy as they carried on conversations with us, entertained Kyra, etc. ...BUT you would not believe how hard it is to get fluid to run thru the tubes - those tiny bubbles are pretty frustrating and forget it, I'm not talking while I do this ... huh, maybe that is why Kory has me take the lead on this one... quiet time!

Kyra is doing great and is growing so fast. Socially Kyra is fabulous! Her beautiful smile has the ability to entice the nurses and doctors as they stop by daily to say "hi" or to play. I am actually a little concerned that when Kyra comes home she will be bored with us. Although I know Mikahla and Kaden will be a great deal of entertainment for her. I am looking forward to waking up each day to all three of their precious smiles, to watching them play and laugh with each other, and watching that magical connection form between them.

Celebration Continues...

2009-04-20T15:51:00.000-07:00

Saturday, April 18th, we were able to have a birthday party for Kyra at the hospital. The nurses arranged to have the Ronald McDonald Family Room closed for a few hours so we could bring Kyra in and celebrate as a family. This was the first time we have been able to all assemble in the same room. What a special moment!

Birthday Pictures

2009-04-15T18:48:00.000-07:00

Kyra had a wonderful day. Her nurses decorated her room for her special day. She was greeted with a "Happy Birthday" song by the NICU Staff during their rounds to which Kyra clapped and smiled. Mommy, Daddy and Grandma Patti were able to visit. Mikahla made her a special sign, complete with "Lion King" pictures. Unfortunately, Mikahla and Kaden had slight fevers preventing them from their visit. But Kyra had two "visitors" trying to make an entrance... two new teeth. Yikes, not a fan of the teeth. Here are some photo's of Kyra's day. .. ..

..

2009-04-14T05:13:00.000-07:00

Happy Birthday Kyra!

Tomorrow we will share photos and an update on Kyra's big day.

Today we are going to CELEBRATE!

Clamped And Moving In The Right Direction!

2009-04-03T14:03:00.000-07:00

Kyra is holding her own. Still having a few issues with weaning her off of pain medication but making progress. Her throat was irritated by the vent and she has had a bit of trouble clearing this up. This week she has been "tent camping" with cool mist running to help break-up the congestion. Kyra doesn't seem to mind this too much, she can still watch "The Lion King" and the mist helps her show off all her curls. I find it a bit funny every hospital has a stern protocol for safety - and Kyra is in a plastic tent... but hey it works!
A barium test was done to determine whether the feeding tube is still in place. Unfortunately, the tube has migrated into her stomach (prior to her surgery we were told to expect this.) No plans at this time to reposition the feeding tube and we are still hoping the tube will not be necessary. Kyra is on a great deal of pain meds which alter the function of her bowel. Therefore, we will have to wait for another barium test to determine whether her stomach will empty efficiently. Once she tolerates a lower dose of pain meds her test will be re-scheduled. Right now, the concentration is on her g-tube. Prior to Kyra's surgery this tube continuously emptied because her pylorus was too narrow to pass gastric fluid. Now that her pylorus has been widened, we need to challenge the stomach to empty on its own - aka clamping the g-tube. First Kyra's g-tube was clamped for 4hrs, then 6hrs and now we are trying 8 hrs. She is not showing any signs of discomfort and her g-tube output has been significantly lower. Things are moving in the right direction ... ***Celebratory news*** WE HAVE STOOL!

"Who signed me up for this?! I mean it, I WANT NAMES!"

Surgery and Recovery Update

2009-03-25T21:04:00.000-07:00

It has been difficult managing Kyra's pain today. Her nurses and physicians are diligently trying to keep her as comfortable as possible...

We are amazed with the results of Kyra's surgery. The surgery lasted 8 hrs -there is a lot to be said for both the time and efforts of her surgical team. Kyra was stable throughout the surgery and the end results pleased everyone. Her liver is in remarkable shape, there were no additional atresias in the intestines and all the procedures set out before surgery were completed. Back in late June Kyra had only 9cm of viable intestine but now we are thrilled to report she has an overall total of 35cm! Kory and I have to praise Dr. Marita D'Netto for her always positive and hopeful attitude and especially for her crusade to provide continous feeds (cathedar in stoma to push thru milk and output) to her intestines. The determination to do so provided Kyra with the opportunity for intestinal growth. And we must never forget the efforts of the nursing staff who were on a constant watch to make sure the cathedar stayed in place. Soon Kyra will join the nurses in a happy dance - NO MORE STOMA!

Dr. DiFiore will wait approx. one week before ordering a barium study to determine the performance of Kyra's bowel. Until then the focus is on keeping her comfortable and allowing her to heal.

We again wish to thank everyone for your support. We have been waiting for a long time to share good news with you. Thank you to the physicans, nurses, pain control and respiratory teams that continue to provide excellent care for Kyra. Thanks to our parents and siblings for helping us keep focused on Kyra and holding down the fort with Mikahla & Kaden back home. A very special thanks to all of you who so simply bowed your heads and whispered Kyra's name.... your prayers are our family's strength and miracles!

Surgery update

2009-03-25T10:52:00.000-07:00

Kyra's surgery went well. Dr. DiFiore was able to complete all the procedures he set out to complete. He was remarkably pleased with the appearance of her liver, stating it "looked grossly normal." Kyra is understandably in a great deal of pain and controlling her pain is the main focus now.

I will update more later as time permits. Thank you all for your support!

2-Days to "D" Day - "Dr. DiFiore Day"

2009-03-22T23:45:00.000-07:00

Kyra's surgery has been moved to Tuesday, March 24th. This is the day we have been long awaiting, an attempt to re-connect Kyra's bowel in hopes to place her on track for HOME! The surgery is scheduled to last all day. For sometime now her surgeon, Dr. John DiFiore, has been reviewing the best approach for Kyra. Kory & I have all the confidence in the world in Dr. DiFiore... honestly he performed an amazing task when he pieced together very small sections of viable intestine to provide Kyra 9 cm. back in June. At that time no one thought we would see Kyra grow and thrive as she has. Dr. DiFiore believes he will now have approx. 30cm to work with.
Current condition & corrective procedure: Kyra currently has a portion of her small intestine brought to the surface of her stomach (ostomy/stoma) The ostomy allows not only relief in digestion but it is also our pathway in providing her continuous milk feeds directly to her intestine which has proven critical to her intestinal growth. The re-connection will bring down the intestine and eliminate the stoma. In order for the re-connection to be successful Dr. DiFiore will also have to widen the passage between the stomach and small intestine (pylorus -http://en.wikipedia.org/wiki/Pylorus) Currently Kyra's pylorus is narrow making it a difficult for the stomach to empty therefore bringing digestion to a halt. The outer portion of the pyloric muscle will be cut then sutured in the opposite direction to prevent the muscle from narrowing again. As a result of Kyra's narrow pylorus she suffers from severe reflux. To correct the reflux a procedure called Nissen Fundoplication will be performed http://en.wikipedia.org/wiki/Nissen_fundoplication) This procedure will take a portion of her stomach and wrap it around the lower esophagus to act as a muscle and prevent reflux. The "nissen" should prove to be beneficial in forcing the stomach to empty into the pylorus and then thru the bowel. As a precaution a feeding tube will be surgically placed thru her g-tube in the event Kyra's stomach fails to properly empty after surgery allowing us to continue with feeds directly to the intestines and continue to promote growth. Once Kyra's stomach begins to empty properly, the feeding tube can be removed bedside.

This will be a day filled with both anxiety and excitement... and hopefully at the end of the week a great big smile from Kyra!

Kupcakes for Kyra

2009-03-22T22:44:00.000-07:00

This past Thursday, the NICU held a bake sale at the hospital to benefit Kyra. Hot dogs, chili dogs, chips, cookies, brownies, cupcakes... you name it they had it. There was a tremendous turnout and some pretty impressive bake goods. I must admit I am pretty envious, not only can these people save lives they can bake too! And to top the day off, Thursday the NICU Staff was presented with recognition of Unit Of The Year - deservingly so. Congratulations!

Many, many times you have heard me comment on how grateful I am for our NICU family. They care and support not just Kyra but our whole family. I could go on and on and never be able to fully express my gratitude for the miracles they have added to our lives. So to our NICU family, I can only say thank you, thank you, thank you! I have had a renewed faith in humanity as I witness you so easily give of yourselves to so many families who enter your doors. It is a blessing to have come to know all of you!

2009-03-17T18:15:00.000-07:00

We have been "bug" free for ten days now. YEAH!!! Kyra's treatment will continue with 4 additional days of antibiotics to be sure the bacteria is completely clear from the blood stream. She is doing great... happy, laughing and playing again... a truly wonderful sight. This past week Kyra experimented with a new hair style, she has her daddy's curls. Kyra's "baby babble" has now grown into the word "DaDa" (trying to catch this on video is tricky.) She is growing so fast now, weighing a little over 19lbs. Here are some moments in Kyra's life this week....

......

Daddy's Curls ......................... Sleepy Kyra .............

Please no more applesauce!

Kyra really enjoys peek-a-boo....

2009-03-09T19:00:00.000-07:00

Today is a much better day for Kyra. So far her labs are still negative. She was all smiles today, laughing and playing. Still a little tired but overall we are seeing Kyra's sweet dispositon again. Tomorrow there will be another blood draw to be safe in determining whether or not to replace her line. The bacteria has been identified as gram negative klebsiella pneumoniae (gut bug). Given Kyra's condition, her gut serves as a primary reservoir for bacteria. We are very fortunate that she is responding so well. Again, I cannot say enough about Kyra's care. Their quick response to this infection is just one more example of the amazing work they perform. Thank you NICU, GI, and ID Staff!

http://en.wikipedia.org/wiki/Klebsiella_pneumoniae

2009-03-08T17:02:00.000-07:00

It has been a difficult weekend for Kyra. She developed a high fever early Friday morning and tested positive to a bacterial infection. It was hard for Kyra to get comfortable on Friday. Her blood count is down again, which combined with the infection, tires Kyra out very quickly. Fortunately, Saturday the fever subsided and she started to play a little and even shared a few smiles. Today she has been sleeping most of the day. Kyra has had daily blood draws (thru her broviac) to determine whether the antibiotics have cleared the infection. The results should be available Monday. If the labs come back positive then it is likely that Kyra will need to have her central line replaced. Patients with a broviac are at a higher risk of infection and Kyra's immune system further increases her risks. She has had two previous infections. The first was successfully cleared without replacing the line and her second infection required line replacement. It is best to try to clear the infection without replacing the line, as the replacement requires surgery, which in itself has its own risks.

My friend, Elmo

2009-03-03T17:20:00.000-08:00

Mikahla & Kaden gave me a new friend to play with, Elmo. He dances, tells jokes, gives kisses, and tells me stories. Grandma, Grandpa & Aunt Cher came to visit me too. It was a party. AND I actually ate some peaches. Did I like them? Well let's just say they taste better than the chicken.

2009-02-24T21:18:00.000-08:00

I am all smiles today, playing with my big sister, Mikahla. She stacks the blocks and I knock them down. I am very proud of myself showing everyone how I can now sit up on my own...although Mommy still wants to place her hand behind my back just in case. It is probably a good idea though because when I get too excited I still tend to lose balance and end up on my back... this does not stop me from my fun , so Mikahla keep the blocks coming!

My Sister, Mikahla

2009-02-22T18:42:00.000-08:00

Mikahla and Kyra's bond was immediate. I catch myself staring at these pictures, understanding the beauty of these precious moments.

My Big Brother, Kaden

2009-02-22T18:33:00.000-08:00

Kaden was not too sure about another girl, he had his heart set on a boy, but I think he is ok with this now....

Halloween in the NICU

2009-02-21T19:03:00.000-08:00

Kyra spent her day as a bunny and NICU Nurse Kyra.

The beginning...

2009-02-20T19:50:00.000-08:00

During pregnancy it was determined that our daughter had an omphalocele (a portion of her intestine outside of her abdomen.) She was born at 35 weeks gestation at 7lbs 2oz. and other than her gut, all other organs healthy and functioning. We had hoped that this would be a routine procedure to repair the omphalocele, recover and be on our way home to share Kyra with her two siblings. However, we were faced with our worst fear, multiple intestinal atresia (several areas of blockage throughout the intestines.) Having been through this same diagnosis and ultimately the loss of our first child ten years prior, my husband and I were devastated. We knew now we were in a much better facility and had some knowledge on the developments that were made in the medical field with regards to the gut since the loss of our son. We held onto hope, prayers and the strength of family and friends. After two surgeries it was determined that Kyra had only 9cm of viable intestine. Her surgeons pieced the 9cm together, inserted a stint to avoid the sutures from failing causing another atresia, and again we prayed. Finally after the stint was removed and we saw our first sign of a successful step we could take a small breath and we searched for the patience and courage we would need to tread this path. Overtime her physicians began continous feeds through her stomas, rotating breast milk and ostomy output in hopes to generate intestinal growth. Her physicans also began researching simularities between our first child and Kyra. This lead to the discovery of Kyra's low/absent immune system. As we have now learned your immune system relies a great deal on the health of your gut. The volume of Kyra's ostomy and gtube output is quite large which maybe one of the factors for her compromised immune system. Since Kyra was receiving my breast milk, containing white blood cell, the Lactation Consultant at the NICU set me up with the Mother's Milk Bank of Ohio. This program is EXCELLENT! The milk bank pasturized my milk so that it was safe for Kyra (this small step for them meant the world to me, I needed someway to help my child.) Intra venous immune globulin (IVIG) infusions are administered sometimes weekly to support her defense against potential infections/threats. Due to the intravenous feeds with TPN Kyra's liver was showing signs of distress. Her bilirubin levels were high, with her skin and eyes extremely yellow. The physicians in the NICU were familiar with omegaven (a fish lipid/fat) however this was not currently approved for patient care at the Clinic. As they were going through the painstacking steps for FDA trial approval, Kyra's GI Team, equipped with the knowledge of why omegaven seems so successful, began adjusting her essential fatty acids, limiting her lipids to three time a week, adjusting her TPN windows and before long Kyra was no longer a candidate for omegaven as her liver function improved and bilirubin levels came back within normal range. (Very excited to report liver function still within normal range even after months of TPN/Lipid adjustments.) Days later we were advised that the continuous feeds appeared to be successful as Kyra had shown signs of intestinal growth and there was talk of reconnection. YEAH another breath!!!! However, as most things in life go, one step forward three steps back... as a result of a central line infection Kyra suffered hydrocephalus (water on the brain.) This past Christmas she underwent two neurosurgeries to correct the hydrocephalus and thankfully the second seems to be working. Now recovered from her neurosurgies we are looking at the possibility of a reconnection in March and God Willing a ray of light, and praying for a long awaited journey home.

All in all Kyra is a very happy child. Everyone of her physicians and nurses are truly wonderful, talented, and caring people. It amazes me still how effortlessly they can hold our "heart" and care for her as if she were their own. As parents you have all these dreams for your children which always seems to amount to the same two things: I hope they will always know they are loved and I hope they will always be happy. Well, I know not everyday has been a "happy" day for Kyra but I DO know she has always felt loved!