Eulogy

Isabel Anne Emry was here with us for 352 days. How is that possible? How could 352 days be so long, yet her life so short?

How is it possible that she, one among thousands, would be born with a rare genetic disorder? How is it possible that one small girl could endure so much, yet smile so frequently?

Moreover, how is it possible that we could be so lucky, that our family would be chosen to be hers? That our relationship with Isabel made over the course of a year would have the depth and quality of others we've made over a lifetime?

Isabel's life is a testimony to what is possible.

When we first met, Isabel--like all new babies--had this luster of heaven about her, as if she was not quite of this world. Children seem so much closer to the divine, like a purer version of us. They radiate those qualities of God that we seek on earth, and are just not able to find in any other place. Pure acceptance, absolute joy, true love at first sight: Isabel demonstrated all these. And there was not a single person who was quite the same after knowing her.

We all admired her. Her resilience to spring back into life after her many surgeries was truly breathtaking. She made us all want to do better. Though her parents tirelessly cared for her every single day, they did not begin their parenthood with this kind of vigor. Isabel inspired in them strength, energy, and capabilities sufficient for her care. For how do you express your fatigue from caring for a child with special needs when they are looking at you with bandaged head three days out of surgery? Isabel inspired Adam and Kari to be, simply, the most devoted and patient parents I have ever known.

For the rest of us, Isabel showed us that we could do better. We could do better at those things that we sometimes resist out of fear, trepidation, or sheer laziness, for here was a girl who could teach you a thing or two about living…

Eating was not easy for her, holding her head up was not easy for her, breathing was not easy for her. The basic business of living we take for granted, yet Isabel had to work every day, as did her parents and grandparents to help her reach these milestones. She not only achieved them, she did them with a smile.

But, I must also tell you that Isabel’s life was no tidy lesson, sent here to give us all something to think about. She was her own person: a girl, just beginning to develop opinions, moods, a personality. She was happy, sunny, quick with a smile, and in recent weeks a bit of a conversationalist, if you could keep up. Your time with her would make the clock stop. It was magical, and profound. She would gaze into your soul with those beautiful, expressive eyes...and you would be hooked immediately.

Those of you who cared for her in the hospital probably got to see the "assertive Isabel,” making sure you knew which blanket, toy, or TV station she preferred. You may have suffered her tiny wrath, all kicking feet and waving arms. And you may have noticed that, in keeping with her Quaker heritage, Isabel wasn't afraid to administer a good shunning.

It was comforting for me to see this girl display such individuality and strength of spirit so early. To me, it meant that she planned on staying here, preparing herself for a life on earth. A life we all know, of daily struggles and joys, of triumphs and disappointments, of loving family and bossy cousins.

But it was not to be. Isabel, despite the tireless effort of her family, doctors, and nurses, passed on from this world to the next. To those who adored her, much too soon. We can hardly begin to understand why. Though Isabel will never walk, eat an ice cream cone, kiss a boy, drive a car; she wants for nothing. It is we that want these things for her, these life experiences and memories.

As people of faith we know that she is complete, she is fulfilled in her Creator's presence, a place we all wish to be someday. She has no pain, must never endure another surgery, has cast aside silly things like oxygen and g-tubes and helmets.

Instead of trying to make sense of our sudden loss, we are actively affirming that our time with her was a blessing. One that we were not prepared for, and one that continues to be revealed to us. We may never know why Isabel was taken, but we do know that she is at peace, with her Creator...and it is our job to honor that.

She will be missed in a most physical way. The void she left in all of us is felt every day. We are working on filling that space with her memory, and we long for a time that we will see her again. We do not mourn the years we did not have, we thank God for the 352 days that we did.

Thank you all for honoring her today.

Isabel Anne Emry of Boise passed away late Saturday, February 7th, 2009 at St. Luke’s Regional Medical Center, just two weeks before her first birthday. She was surrounded by her mother, father, and loving family and friends.

Isabel was born nearly one year ago on February 20th, 2008 to Adam and Kari Emry. She was born with a rare genetic disorder, Crouzon Syndrome, that necessitated several surgical procedures and intermittent hospital stays. In spite of these medical challenges, Isabel thrived and grew into a bright, happy, and social baby, quick with a smile and eager to charm. Every day Isabel spent many hours playing on the floor, rolling and kicking and pushing up, a testament to her strong will and infatigable spirit. She was a source of immeasurable joy and inspiration to her family, and they will forever treasure her short time in this world.

She is survived by her parents, Adam and Kari Emry of Boise, her maternal grandparents, Ron and Karen Folwell of Boise, and her paternal grandparents, Doug and Linda Emry of Kuna, as well as a large family of great-grandparents, uncles, aunts, and cousins.
The family would like to thank the dedicated team of surgeons, physicians, and nurses who took such excellent care of Isabel throughout her life, and particularly the staff of St. Luke’s Pediatric Intensive Care Unit for their compassion and professionalism during this difficult time.

Services are under the direction of Cloverdale Funeral Chapel, where a visitation for all family and friends will be held Thursday, February 12th from 6:30 to 8:00 in the evening. A celebration of Isabel’s life will be held Friday, February 13th at 1:00 in the afternoon at Boise Friends Church, with a private graveside service to follow. Memorials can be made in Isabel’s name to St. Luke’s Children’s Hospital Family Assistance Fund: P.O. Box 190 E. Bannock Street Boise, Idaho 83712.

Isabel Anne Emry

It is with broken hearts that we relay this news: yesterday, around midnight, Isabel passed away after unexpectedly arresting earlier that day. She was with her brave, loving mother and father and not in any pain. We ask for your prayers for Adam and Kari and their parents.

God bless.

Home For Christmas

So, being in possession of super-human-baby-strength, Isabel came home on Wednesday night, less than 48 hours after her surgery! Being home is a giant plus: not only is she less likely to contract a nasty cold or flu bug, but she's with her people and comfortable, familiar things.

Other than a wee bit of swelling around her eyes and right side, she's doing just great, as these pictures can attest.

And she's eating little bits of solids! (As you might remember, she has some structural issues with her palette, so this is a huge step.)

Thank you so much for your prayers and love. The Emrys and Folwells are blessed beyond measure by your friendship.

Finally Out!

They finished the surgery up at 7:15 PM and Isabel is now in recovery. (Adam will be with her shortly; poor Kari has a cold and cannot be in the PICU.) No complications: she lost a bit more blood than usual, but that is likely due to her slightly larger, more robust body. The doctor released the suture and removed the faulty bone from the left side of her head as planned, and then decided to harvest healthy bone from the right side of her skull to patch up her fontanel. She is being moved to PICU soon and will hopefully be released in just three days.

We are currently hoping and praying that she doesn't catch any respiratory bugs in the PICU, which would greatly prolong her stay and complicate her condition.

Thank you for all the love, prayers, and good thoughts. We'll keep things updated as she recovers.

Isabel At Six Months

It has been about two months since the last update on Isabel. In the meantime, she has been doing all of her cute baby business, charming her family, and causing a few sleepless nights here and there. Kari and Adam (as well as Karen and Ron) have been working with Isabel to take a bottle. Following her G-tube surgery, Isabel has been receiving sustenance solely from the tube. Everyone has been hard at work trying to help her develop a preference for oral feeding instead. Ideally, the G-tube would then act as a back-up to her normal feeding. This process has been very difficult, as Isabel has not consistently fed through a bottle yet. This effort is very important in her overall development. Oral feeding is a big milestone for babies, so the household has been hard at work on this. The family would certainly appreciate prayer about this ongoing effort.

Also, Isabel is preparing for yet another surgery. Since her last surgery, Isabel has developed hydrocephalus (excess fluid in the cranium). Her doctors have been monitoring this regularly, and have determined that it is not going away on its own. Her surgery is scheduled for next Wednesday, September 3rd. The procedure will consist of the placement of a device called a shunt that will allow the fluid to drain out of her cranial area. The shunt is very small, and the surgeons have stated that this procedure is fairly routine. The maintenance and monitoring of the shunt is critical to minimizing the risk of harm. Of course, Isabel and her family would greatly appreciate prayer about this procedure, but also her ongoing care, which just seems to get more and more complicated. Adam and Kari are about to become shunt specialists as they have already become experts in the fields of G-tubes and hydrocephalus. I’m sure that they would also appreciate prayer as their day to day life gets ever more complex.



Isabel’s family was also informed by her doctors that it is absolutely imperative that Isabel avoid the possibility of getting sick. As we enter into the cold and flu season, the household is going to have to limit their contact with the outside world for the time being. This is certainly not an ideal situation, as the family has such a large network of friends and supporters. Unfortunately, the family cannot receive visitors (even the pizza guy!) until further notice. Of course they can still be reached via phone and email, and would love to hear from you. Until further notice this little family must hunker down for the cold season.

Again, thank you for all of your love and support. Your care means so much to the family. God Bless.

The Folwells & Emrys

Four Months Old & Smiling

Second Cranial Surgery

Isabel will behaving surgery this Friday (June 27th) in order to once again release her fused coronal sutures. The good news? Her plastic surgeon believes the surgery will be relatively brief (about two hours) and the recovery time short (about one week in the PICU). Here's hoping!

Her surgery is scheduled for first thing Friday morning at about 7:00 AM. We will keep everyone posted the moment there is news.

Three Months Old...

An Update From The Plastic Surgeon

Well, much has transpired since our last update. Isabel was again released from St. Luke's on Mother's Day . In the days that followed, Kari and Adam were able to finally settle into caring for Isabel at Ron and Karen's home. Kari has been receiving regular visits from home-care nurses, occupational therapists, etc. She is getting along wonderfully with her home-care nurse, who provides them both with assistance, medical information, and moral support. Ron and Karen have also provided an enormous amount of support, especially since Adam returned to his job full-time. (Speaking of which, Adam recently received a promotion to warehouse manager! Congratulations Adam!)

Today, during a check-up with her plastic surgeon, it was determined that Isabel would need to undergo another cranio-facial surgery. Dr. Griffiths discovered that the front sutures located at her temples (coronal sutures) have partially fused back together. You will recall that these same sutures were released as part of her first surgery. It is obviously important for these sutures to remain free as Isabel's skull continues to grow and form with the aid of her helmet. The surgery will likely be scheduled in the next few weeks.

The family is trying not to view this recent news as a setback, but it is discouraging to hear that Isabel will have to undergo another procedure so soon after returning home. It is a blessing, however, for Isabel to have received such optimum care and personal attention from her medical team. Dr. Griffiths has been monitoring Isabel's condition meticulously, and this surgery is part of her ongoing care. Isabel and her parents (as well as the rest of the family) are so thankful for YOUR care and support. We have been overwhelmed by your gestures of love and compassion. Please continue to pray for Isabel and her parents as they approach this next milestone. We will keep you updated on the surgery when we know more.

Surgical Update

Isabel is in recovery and the surgery went just as planned--no complications. Barring anything unexpected, she is set to go back home in about a week.

Adam and Kari will be in charge of changing and managing her G-tube could certainly use some prayer and support for that daunting endeavor.

Will report back soon with any news...

Small Surgery Today

Isabel is still in the hospital recovering from her virus. Her breathing has gradually improved but her doctors have decided that a gastric feeding tube (or G-tube) is the best way to ensure she will consistently get enough nutrition after she goes home again.

The surgery to insert the tube is both simple, short, and routine, and Adam and Kari are expecting the procedure to be at noon today.

We'll keep everyone posted as soon as we have news.

A Little Set-Back

On Tuesday, Adam and Kari drove Isabel back to St. Luke's on a recommendation from their home health nurse. Isabel showed signs of having a cold and, consequently, was having difficulty breathing and keeping her blood oxygen high enough. On Tuesday evening, Isabel was admitted into the PICU (pediatric intensive care unit) and was given an IV and oxygen. She'd lost approximately 7 ounces since returning home, despite the best efforts of her parents.

Isabel will be in St. Luke's PICU for at least five days or until the symptoms of her cold have dissipated. Since her airways are very small, the common cold virus can make breathing extremely difficult, even more so than normal, and her oxygen levels must be monitored until she's recovered. The pediatrician is meeting with Isabel's ENT specialist to discuss any options that might make her life easier.

Please continue to pray for Isabel and her parents. It is likely that Isabel will have to return to the hospital every time she gets sick, until her airways have developed sufficiently. Thank you very much for your prayers and your support.

Byron

As I Type This...

...Adam and Kari at the hospital, filling out the paperwork and preparing to take Isabel home! As you can imagine, they are ecstatic.

They will be staying with Ron and Karen (Kari's parents) tonight. If you have any questions or messages, please feel free to email the blog or call Byron and Melanie.

The Feeding Tube Is Out!

Encouraging news to report: last Thursday, Isabel's caregivers made the decision to remove her feeding tube and then move Kari, Adam, and Isabel moved into a small, private room in the NICU together. Isabel has been eating from a bottle and nursing and so far, so good. If she appears to be gaining weight and thriving, there is a good chance they will all be going home very soon.

We are all thrilled that their new little family is getting a chance to bond and be together like never before while still receiving support and encouragement from the NICU staff.

Breathing and Bottles

The only thing currently standing between Isabel and a discharge for home has been her issues with nasal breathing and bottle feeding. The ear, nose, and throat specialist met with Adam and Kari on Easter morning and confirmed that, rather than performing surgery to open her passages or insert stents, they would be opting for a "wait and see" approach. Isabel has been receiving steroid nose drops for about a week and the medication seems to be working.

On Tuesday, she was taking about 32 ml at a bottle feeding. By Friday morning, Adam reported that she's been taking about 60 ml at a feeding. A huge improvement!

In the next few days, Isabel's caregivers are planning on removing her feeding tube and letting her go 24 hours with only bottle feeds. If Isabel can get enough down and greatly increase her nutrition intake from the bottle, she could be off the tube for good and possibly going home in a week or two.



Adam and Kari have been putting in extra-long hours at the hospital in an effort to personally give Isabel as many of her feeds as possible. Adam, particularly, is a bottle task-master and seems quite determined to bring his baby girl home.



Isabel is, as always, beautiful and alert and strong. She is thriving and growing, pushing the capacity of her newborn bassinet.



She particularly likes a good diaper change.



And she's in excellent hands.

Meeting With The Geneticist

On Friday, Kari and Adam met with Isabel's pediatric geneticist and received news about Isabel's symptoms and condition. Based on the doctor's evaluation and the results from the genetic testing, Isabel has been formally diagnosed with Crouzon Syndrome.

Crouzon (pronounced KROOZ-on) Syndrome is a rare genetic condition that, in Isabel's case, occurred as a random, spontaneous mutation of one gene. The main feature of Crouzon Syndrome is craniosynotosis, or the premature fusing of the cranial plates. This fusing does not allow the skull and other cranial bones to grow and expand normally, potentially affecting the shape of the head and the structure of the face. Many children with Crouzon Syndrome also experience problems with their soft palate, breathing, hearing, and vision.

That said, it is important to know that Crouzon Syndrome and the severity of its symptoms vary greatly from patient to patient and evolve differently over time. There are some characteristic facial features of a child with Crouzon Syndrome, including a tall and narrow head shape, prominent eyes (due to shallow and wide-set eye sockets), a small nose and mid-face area, and a more prominent lower jaw.

For children with Crouzon Syndrome and craniosynotosis, surgical intervention is usually necessary to give the brain adequate room to grow and expand. As you know, Isabel has already undergone one extensive (and successful) surgery to release and rearrange the bone in her skull and face. As she develops and changes, Isabel may need additional surgeries but, hopefully, her surgeons have bought her some extra time with their excellent care.

A few more facts about Crouzon Syndrome:

• With rare exceptions, Crouzon Syndrome is not life-threatening and does not shorten a patient's life span or interfere with basic life functions.
  
  
• 97% of children of Crouzon are of normal intelligence.
  
  
• Since neither Kari nor Adam have Crouzon Syndrome or a familial history of the condition, their risk of having another child with Crouzon is virtually the same as the general population (roughly 1 in 60,000 to 100,000 births).
  
  
• Crouzon Syndrome is hereditary, and Crouzon patients have a roughly 50%-60% chance of passing on the condition to their children.

If you would like to learn more about the condition, here are some helpful links: The Crouzon Support Network FAQ, The Seattle Craniofacial Center, and The National Craniofacial Center.

Thank you all for your continued interest, prayers, and support. We'll update soon about the progress with Isabel's feeding/breathing and plan for going home.

Isabel's New Helmet

Last week, Isabel was fitted for a shiny, new, pink-and-purple-butterflied helmet.

In person, it looks impossibly tiny. It swivels open like a clam shell so that it can be placed carefully on her head, secured with a little chin strap. The helmet is made of a lightweight, plastic outer shell and a contoured foam interior which will be gradually adjusted to accommodate Isabel's head as it grows and changes. With the help of this helmet, Isabel's brain will be encouraged to expand horizontally (side to side) rather than continuing to grow upwards and, with time, the large gaps between her skull plates will fill in with new bone.

Though she is currently wearing the helmet for just a few hours a day, she will eventually wear it for 23 hours a day through the first year of her life.

Adam and Kari report that Isabel seems to be calm and comfortable when wearing the helmet, and they are relieved to have this extra protection for her sweet little head. (Isabel confidentially told me that, yes, she likes the helmet, but mostly because it keeps the NICU nurses from pasting that pink bow to her head. I hear you, girlfriend.)

We'll try to report back later with updated news on Isabel's breathing situation.

Warmest regards,
Melanie

The Little Baby that Could

At one week post-surgery, Isabel is doing great. Her small incisions (one at each temple, three on the back of her head) are healing beautifully, her swelling has greatly reduced, and, as you can see:



...she looks fantastic. Here she is yesterday, having a good look at her mama.

Her surgeons are extremely pleased with the results of her surgery. As you can see in these pictures, the shape of her head and skull have changed dramatically, particularly the areas near her temple and brow.



Her neurologist has watched closely for bruising, swelling, and fluid on her brain, and all of her tests thus far appear normal and free of complications.



Adam and Kari have been able to hold and care for Isabel during their long hours at the NICU this past week, and are very much looking forward to taking their baby home. They are frustrated and concerned by a slight set-back Isabel is experiencing with her breathing and eating: since her surgery, she is again having some problems breathing through her nose, and when she can't breath through her nose, she can't successfully drink from a bottle. (She is still being fed via the little tube you may notice in these pictures.)

In order for Isabel to go home, her breathing and feeding have to improve. Adam and Kari are hoping to see their ENT (ear, nose, throat) specialist early this week and discuss a plan for improving Isabel's breathing. We ask that you continue to keep this little family and their concerns in your thoughts and prayers. We know they are deeply appreciative of your support and love.

No words can properly express how arduous and emotionally exhausting this experience has been. We can, however, attest to the fact that Adam, Kari, and Isabel are surely three of the bravest, most resilient people around. Their immense strength in the face of these sometimes immeasurable hurdles has been both astonishing and inspiring.

(Stay tuned for a few more pictures featuring Isabel and her new spring accessory...)

The Full Surgical Report

After an amazing nine hours of surgery, Isabel's surgeons met with Kari, Adam, and their families to deliver the following pieces of information:

1) The surgery went well, so well that Dr. Cherney was actually able to release and reposition more of the coronal suture than previously expected, hence her additional hours in the OR.

2) Isabel was very stable throughout, and experienced only two ounces of blood loss.

3) There were no complications, including no accidental damage to her brain or the very thin membrane encasing her brain.

4) Isabel, who is resting comfortably, will have a CAT scan tomorrow to check for bruising or blood on the brain, but everything looks great right now.


In a frightening and difficult situation, this was the best possible news to receive. Isabel's family extends the most heartfelt of thanks to their amazing community of friends and family. Your kind words, thoughts, gestures, and prayers have meant more than could ever be expressed.

Thank you, thank you, thank you, and God bless you all.