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.

Still In Surgery...

....and waiting for word. Isabel was in pre-op for nearly two hours and the surgery began much later than anticipated. Will keep everyone updated.

Surgery Update

She is having surgery today and is currently in pre-op. They expect to begin around 2:00 PM. Will update as soon as there is news...

December 15th Surgery

Late this morning, Isabel is being evaluated by an anesthesiologist to see if she can undergo another cranial surgery today. Over the past few months, one suture near the front of her skull has re-fused and needs to be released. Isabel's surgeons scheduled the operation for today, but Isabel has caught a cold and might need to reschedule to avoid complications. We'll update around noon with details: please keep her in your prayers.

Shunt Surgery Successful

Isabel is out of surgery, resting comfortably, and sporting a fancy new shunt. Everything is well!

Thanks for all the love.

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

She's Nearly Out of Surgery...

...and everything went exactly as planned. Her plastic surgeon reports that the release of the sutures completely reshaped her head and eliminated the bulge that had formed near her fontanel. She did require a small blood transfusion but is doing great.

Will post again with neurosurgeon's report...

A Late Start...

Isabel went into surgery about two and half hours later than expected. We expect her out around 1:00 PM and will post updates as we have them...

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.

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.

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...)

Post-Op Recovery

During the post-op meeting, Isabel's neurologist indicated that Adam and Kari wouldn't be able to hold Isabel for at least four or five days, possibly a week. In an exciting turn of events, Kari was able to hold Isabel today. It's very careful kind of holding, of course: the nurse places a pillow across Kari's lap and delicately lays Isabel down on one side. (The drain from the back of her head has already been removed, but it still very sensitive to pressure.)

Isabel is doing great: she was off the ventilator by Saturday, her CT scan looks clear of bruising, and her post-surgery swelling is already going down. She is still on pain medications and resting peacefully.

She's Out...

...and resting comfortably! The surgery went exactly as planned without a single complication. Adam and Kari have been back to see Isabel and kiss her goodnight.

Details from the the surgeons to follow...