Miracles and Milestones 01/24/2013

Everleigh turned 3 months old this past week! She is growing so quickly, it is both exciting and sad for her parents! Evey, can't you stay as my little baby for just a moment longer?

A freshly bathed Angry Bird

Everleigh has been hitting some big milestones these past few weeks. Even if I had a child with no health issues I would be excited about milestones, but it would not be the kind of event that brings me to tears and drives me to my knees in grateful prayer like seeing Evey accomplish so much has.

Here are a few neat things she has been doing:

-Cooing in response to things we say or do
-Using her arms and hands to bring objects to her mouth to taste (though her fists still don't quite reach unassisted just yet)
-holding her own head up (not consistently, but it will come with time)
-turning her head during tummy time instead of smashing her face in the floor

And, drumroll please............Everleigh has not had any seizures in almost 2 weeks, and has only had 2 since she came home from the hospital. This is a miracle beyond measure!! With an almost seizure free life, Evey has been able to enjoy a much more natural sleep-wake cycle and subsequently has been falling into a nice daily routine. This really helps her have the energy to work on other things and means we see a lot more smiles these days. Hooray hooray!

I hope that when I share these things about our family that it never comes across as bragging, because that has never been the point of our blog. Instead, I hope that our little story is inspiring and a uplifting. Nate and I feel that we have seen so many miracles in our journey with Evey it would be ungrateful to credit Heavenly Father for these events and love to share these events with anyone who is interested in listening.

Chunky Cheeks :)

There are still plenty of challenges we face, but overall things for Evey-Bean are going super well. We could not be more grateful! Thank you for keeping our family in your prayers, we love you all so much. Happy Adventures to you all!

-Nate, Steph, & Evey

Everleigh is home.......Again!

Everleigh is home again!

So happy to be back home!

Everleigh came back home Sunday afternoon, Jan. 5, 2013 from a 10 day hospitalization. We are so happy to have her back home again! What an adventure this hospitalization has been. Somehow even though it was much shorter than the NICU stay, this past visit was harder.  Because the PICU has been so impacted, we rarely had the opportunity to sit down and ask Evey's doctors questions about her conditions, and we always felt like we were re-explaining Evey's unique condition to everyone who provided her care.

"No, she is not seizing right now, she is just agitated."

"Yes, Im sure that Asystole is a normal part of her seizures."

"Yes, we are sure those are actually seizures and not an exaggerated startle response."

I can't tell you how many times we have said those three sentences in the past 2 weeks. But to be fair, Evey's seizure activity is extremely atypical and very terrifying, especially to a new board of professionals who are meeting her for the first time.

Primary nursing is also not practiced in the PICU because most children do not stay longer than a few days. We really missed having our Primary nurses around this time, it was just always so much easier to leave the hospital knowing that someone who knows and cares for our baby like we do is there looking after her. With that said, our baby still received the very best of care from the very best providers. I think the adjustment to the way the PICU functions was hardest on Mommy and Daddy-we got so used to how the NICU functions that we felt a bit out of sorts. The hardest part of this past hospital stay was that  it forced us to come to come to a realization about certain aspects of Evey's life. Many of these things we already knew, but I guess this time it just really hit home.

Allow me to paraphrase a particularly difficult conversation we had with Evey's Doctors.

Doctor: We need to talk to you about setting some long term goals and expectations for Everleigh's care. It is not possible for Everleigh to live a seizure free life, and her seizures are life threatening. As such, we want to know how you want to proceed with her care. She is mostly recovered from the rhinovirus, but her seizures make her a medically complicated child.

Nate and I: We knew the severity of our baby's condition when we brought her home from the NICU and accepted the risks because we believe she deserves a life better than she could live in a hospital bed.

Doctor: We agree, and don't want to keep her here indefinitely, but we need to know you understand and that you are prepared for a seizure that ends her life. That likelihood is higher outside the hospital. Are you prepared for that risk? If she dies at home, will you be able to handle the emotions that come with it?

Nate and I: Yes. As we said, we prepared for such an event before Everleigh left the NICU by
undergoing training in infant CPR and training by her nurses and doctors on how to handle a seizure.
We also have an apnea monitor that alerts us to her seizures so that we can respond immediately. She could die in her hospital bed as much as she could die at home. At least at home she is living a full
life: reading books, playing with her parents, sleeping in her own bed, knowing that she is loved. The
hospital can't provide that for her. We are willing to accept some risk for the sake of her quality of life, however long or brief it may be.

Doctor: I understand. I'm sorry to ask this question, but given the situation, I must: In the event that she does not recover from a seizure while she is here, how long would you like us to Attempt to resuscitate her before we let her go? Some parents like to set a time limit for how long we make rescue efforts because they believe that the resulting brain damage is not worth continuing to resuscitate the child.

Nate and I (I know the look on my face was not very nice, I feel bad for the doctor): Make every Attempt. Do everything. Try as long as you possibly can. We will decide after she is stabilized what we believe will be best for her.

Doctor: Ok, Full Code then. What can we do to support you as you care for her from home? We will keep her on the NG Tube for the time being since you two seem to be comfortable with caring for her with the tube in place. It has been suggested that a tracheostomy for emergency use or at the very least supplemental oxygen and a pulse oximeter would help reduce the risk of her death at home. Would you be willing to consider either of these?

Nate and I: We don't believe a tracheostomy would be of any real help; she can not be forced to breathe during a seizure, and afterwards supplemental oxygen would be just as helpful. She is able to breathe well without help during her normal activities, and a tracheostomy may set her back when
working toward goals like holding her head up. We would, however, greatly appreciate supplemental
oxygen and an oximeter for home use.

Doctor: Sounds great. Lets get you set up so you can take your baby home.


Nate and I: Thanks for your help.

Nothing that was said should have been new news for us, but somehow it became more real. Evey will require constant care and doctors visits until her seizures resolve, or we are putting her life at risk. That was a painful and terrifying reality for Both Nate and myself. Yet somehow whenever we are with our sweet Evey an overwhelming peace surrounds us. She will be alright. That doesn't mean we shouldn't be prepared, but somehow and in some way all of the promises that have been made to Everleigh through various Priesthood blessings will come to pass.  With these blessings in mind, we proceed cautiously but optimistically: she blow away everyone's expectations for her. She is so strong, and so determined, and so sweet. I can feel it in her spirit every time I hold her.

We had another conversation with a support group that Primary Children's Hospital provides called Rainbow Kids. Their goal is to make sure our concerns and wishes for Everleigh are being met, and to brief the doctors on her history and our Plan for her each time she visits the Hospital so we don't have to do this again. Unfortunately, until her seizures resolve, intermittent hospitalization will probably be part of life. It is a worthy price to pay for the life of our dear baby. Every team member of the Rainbow Kids team is very sweet and understanding, and only wants to prepare us for the road ahead. We are so excited to have them on Everleigh's care team!

They really are an awesome bunch. We have been so blessed to have such loving professionals who want to see Evey succeed as much as we do since the day she was born. She is truly in the best hands.

Making cookies with Mommy

Daddy's little helper

We are not waiting for beautiful life moments to occur, we make them happen. Tonight, Evey, Nate, and I made cookies. It was a blast. Also, Evey did her first push up! A great start to holding her head up and rolling over. She was so proud of herself, she smiled. Love it :)

So eat cookies tonight everyone, it's what all the cool kids are doing. Tonight, cookies are a symbol of faith. Life is so simple and sweet, we just want to bask in these tender little moments.

We love you all and hope you are well. Keep us in your prayers! We pray prayers of gratitude for all of you each day.

-Love,

Nate, Steph, and Evey <3