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.

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

Three Months Old...

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.

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...)

Daddy and Daughter

Mother and Daughter