Surgery and Recovery Update

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

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"

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

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!

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....

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

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

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.