Kinzie Update

Let me start by saying that God definitely has a plan and that babies are miracles. My gorgeous, strong little girl has shown such strength, courage, and perserverance. She has definitely developed a coping technique. Any time she hears a doctor or nurses voice, other than her primary nurse, she pretends to be asleep and nothing will wake her up, until they leave at which point she peaks out of one eye to make sure they are gone.

Kinzie had a rough start as you have read below. These two pictures are of her after they stabilized her right after birth. The ladies are the two nurses and doctor that did not/could not leave her bedside. They literally saved her life despite not having the equipment to handle so sick of an infant. They were told via phone what to do by PCH NICU. I owe them the deepest of thanks that could never be expressed in words.

The Air Evac team was able to come in on day 2 during a break in the storm. It is particularly hard because the plane has to fly from PHX to Show Low with the NICU team and then back again, thus requiring at least a three hour window. The blessing was that due to the storm only planes could fly which has room for a parent vs. a helicopter which does not. So I went with her. The isolet above is what she flew in. They also gave her a cute blanket from volunteers. This picture is on day 3 at PCH. We were finally able to dress her. She was and has been super sleepy due to all the trama and medications. Cale and I got to hold her on day 3 finally. So healing to hold your sick little girl in your hands and give her all the love you long for her to feel. We hadn't been able to hold her due to the umbilical IVs through her belly button. They go into arteries vs. veins and bleed too fast if pulled out accidentally.

Upon arriving at PCH, Kinzie had an MRI to check for brain damage structurally and an EEG to check for damage in processing. Both came back abnormal and only time will tell if and how that will affect her. Since then she has had 3 MRIs and 8 EEGs. The top picture is Kinzie in the immobilizer for her second MRI. She was put under for her first since she was still intabated but if breathing on their own, they just put them in this little papoos and suck the air out so they are cozy. The lower picture is during an EEG. These are done at her bedside. They put 20+ leads on her head and then wrap it in guaze so she can't pull them out. I think she looks so cute. We are grateful for her quick progress. We are able to do all her normal cares: change her, bathe her, weigh her and take temperatures.Different therapies come and work with her such as speech to help with sucking and eating and also physical therapy to help with stiff joints. They recommend the boppy pillow seen her and they gave her a little chair. So cute in both. Kinzie has been on a 24+ hour EEG since Wednesday morning to try and catch the episodes that she keeps having. They seem to be seizure like. They start with irritability, puking, pooping, dropping her O2, sometimes dropping heart beat too, then needing bagging (given O2) followed by the seizure like activities. however, they finally ruled them out as not seizures today. This is great news as it means we can take her off the Phenobarbital and the B6.

She has shown major reflux symptoms all along and they ruled it today as most likely severe reflux. Documentation commonly shows all of her symptoms as a result of reflux. So we started her on Prevacid today and will see what that does in the next couple days. The other good news from this is that when off the Pheno she is super awake. She has spent most of her time sleepy and unresponsive to eating, therapy, etc. This last picture shows her wide awake and focusing. Since being off the phenobarbital, she has gone from drinking 2cc at a feed to 45-60cc literally overnight. She has been scheduled for a g-tube surgery that would put the feeding tube currently in her nose diretly into her tummy, for a week now but twice it's been post poned. We are scheduled for Monday but are hoping that this miraculous interest in eating yesterday and today will result in not even needing it. Please pray for such a miracle. A g-tube is not a huge deal and is reversible but is one less thing to put her through if not needed.

We are so grateful for everyones prayers, gifts and help. We are looking forward to coming hom but still don't know when.