Post Surgery

After one very long surgery, Campbell has a new look.  And she looks beautiful.

Overall, Campbell did well today.  A few hours into surgery, her intubation tube dislodged, causing things to get a bit squirrelly.  After a few chest compressions, a new intubation, and a reset of the OR, the team was able to continue, and she remained stable for the rest of the surgery.

Currently, Campbell is recovering in the PICU.  She looks great.  Not only was Dr. Urata able to build out her orbital ridge (i.e. her eyebrow bone and forehead), he did some nice contouring work on the posterior side of her head, complementing the April distractor surgery.  Campbell is now distractor free!  (Her brothers are going to be disappointed that her antennas are gone.)  Dr. McComb, Campbell’s neurosurgeon, was a pleasure, as usual, and kept us well-informed.

Over the past several hours, Campbell’s head has begun to swell. This process is normal and will get worse before beginning to subside.  Tonight, Joel and I briefly were able to see her eyes, as they, too, will soon be swollen shut.  But all of this is temporary.  In a few weeks, Campbell will be fitted for a helmet to continue to shape her head as she grows.

Thank you, dear friends, for your thoughts and prayers today. We felt them. As parents, Joel and I faced a fear today unlike any other we have known, which, frankly, was terrifying and exhausting.  Your prayers made a difference in our lives and in the life of our daughter, and we are very thankful.  May God pour out His rich blessings on you!

May your unfailing love rest upon us, O Lord, even as we put our hope in you. Ps. 33:22

No more distraction…just wrestling

Late on Friday afternoon, we turned Campbell’s distractors for the last time. Yeah! No more distraction! I am so thankful the turning is over as we could tell she was in pain at the end. She gained over three sonometers (centimeters) in depth behind her ears over two weeks, which is amazing.  While her skull is not completely symmetrical, it’s more so than before surgery and now her brain has space to grow. Already, we’re seeing improvements in her alertness and vision.  Her surgeons will attempt to correct some of the asymmetry during her next surgery at around eight to ten months.

Here is a progression photo showing part of the distraction process.  The first photo was taken right after surgery (the back of her head is actually quite swollen), and the second photo was taken about a week into the distraction process.  You can see the posterior part of her head beginning to extend.  Since this was taken, Campbell has had one more week of turning, and under her incision is a three centimeter headband-shaped gap of bone.

Now, we patiently wait for the bone to fill in.  The gap is under the skin, so it’s protected and held in place by the distractors.  The hardware will stay in place for a couple more months, so we will have our “antenna girl” through the summer.  We have an appointment tomorrow (Monday) with the CHLA team to check on her progress.

Last week, I attended an open house at Christian’s school.  The teachers, staff, and families at St. Paul’s have been very supportive of our family and pray for Campbell often. Their support was quite evident when Christian’s teacher showed me the prayer-chain her students made last week.  On each link, students wrote down their prayers and on many of them, Christian’s classmates had written that they were praying for Baby Campbell.  May God hear the prayers of these children.

Over the weekend, I attended a Mother’s Day brunch for moms of special needs children at a local church.  During the event, one of the women I met pulled me aside.  Her daughter is an adult and she has taken care of her for decades.  She said that over the  years, she dealt with a lot of anger and believes I will as well.  She told me I can’t take my anger out on the world, because the world won’t understand.  Instead, she advised me to take my anger out on God, because He is big enough to handle it and can understand where I’m coming from.  He can meet me where I am.

She’s right.  Joel and I have been in this for mere months, and already, we’ve faced tremendous mounds of anger – more than either of us have felt before.  If we allow ourselves to stuff the frustrations, they will fester and come out sideways on the people who don’t understand or deserve it.  So we bring our anger to God – sometimes in a place of humble surrender; more often in a place to wrestle with Him over the unfairness of it all.

During that wrestle time, I have it out on the mats with God. Nothing is held back, and when the match is over, I’m exhausted and limping, but with a slightly different perspective, a better perspective.  When I engage God with my true feelings, not just the nice ones, but all of my feelings, I find He is big enough to hold them and me with tender mercy.  I give Him my frustrations, questions, and ignorance, and He gives me His grace, peace, and wisdom.

I went to college in Texas and there is an expression I heard used to describe some non-southern girls, “She’s a little rough around the edges.”  Well, I’m a little rough around the edges these days;  my soul is a little rough around the edges with anger, selfishness, and resentment. (Being tired certainly hasn’t helped any.)  But God is softening my soul – through His love and acceptance, His grace and His mercy.  All He asks is that I bring all of me to the mats and leave the rest to Him.

Home & Mid-Distraction

With much rejoicing, Joel and I brought Campbell home last week from the hospital and  re-entered life after a couple of weeks of being at the hospital.  Thank you to the doctors, nurses, and staff at CHLA who cared for Campbell.  So many went above and beyond in treating our little girl, and we are grateful.  And a huge thank you to our family and friends who took care of our boys, ran errands, brought meals, helped with laundry, visited us in the hospital, and simply loved on our family.  You are such a blessing to our family and we couldn’t have done the last few weeks without you.  Thank you for your support and prayers!

Since being home, Campbell has been getting reacquainted with her brothers who watch over her every move.  Colton self-appointed himself as the crying police and alerts us to the slightest sign of her stirring, while Kyle sings “Campbell, don’t cry” when she’s upset.  In typical first-born fashion, Christian supervises us all.

Our dear friend, Kate, is visiting this week from North Carolina, and she went with me to Campbell’s follow-up appointment today with Drs. Urata, Toranto, and Barrett.  It seemed rather fitting that Kate met Campbell’s doctors as we found the CHLA team through one of her colleagues.  

At today’s appointment, Campbell had an x-ray which showed the distraction is working and she’s gaining room in the posterior cranium.  Her left distractor needed to be flushed out and reset, and Dr. Urata made a slight adjustment on the rate of distraction.   We’ll return to CHLA next week to check on her progress.  Overall, she’s doing quite well.

As I learn more about Campbell’s course of care, I find it absolutely amazing what the medical community is able to do for our daughter – procedures that didn’t exist even a few years ago.  Treatment and care for Apert Syndrome and other craniofacial conditions are improving everyday, and I’m excited to think about what might be available in the future.

Our specific prayer requests this week are:

• a praise that the distraction is working and that Campbell is recovering well.  We are so thankful she has access to medical care that is changing what her future might look like.
• that distraction would continue to go well and the change in rate of distraction would yield the results the doctors want.
• for our boys as they adjust to the reality of having a sibling who requires more care.  We see God working on their spirits and it’s both beautiful and heart-wrenching to watch.
• for Joel and I as we learn about taking care of ourselves and our family.  We are experiencing a crash-course in learning the importance of self-care and how to grow in resilience.
• for God’s protection as we continue to process what it means for us to parent this sweet gift of a baby girl.  There is so much that we still don’t understand, so much that still feels unfair. Constantly, I am reminded that we live in a fallen world and that broken bodies and broken souls is not what God intended for His children. I’m so thankful for the hope of eternal life restored with Him, and I look forward to the day when His kingdom shines in its glory.

Thank you for your prayers and support.  You are a blessing to our family!

On a side note: I am working to stay on top of updating the blog.  My family starts sending me text messages asking about Campbell when it’s been several days without an update. (Sorry, Mom!)  This week really has been really full as we’re in catch-up mode from the hospital, but I’ll try to get some pictures posted soon.  In the mean time, if you’re on Facebook, Campbell now has her own page.

Distraction has begun

Campbell had a great Friday, a wonderful way to head into the weekend.

Dr. Toranto arrived bright and early and tested her distractors.  Several clicks and turns later, and Campbell was on her way to an expanded cranium.  We are turning the distractors two full turns three times a day, which means at the current rate, Campbell’s skull is expanding two millimeters a day.

To put that into perspective, in ten days, the back of her head could expand two centimeters; in two weeks, three centimeters. Absolutely amazing. Two to three centimeters  would be significant on an adult, let alone a growing infant.

Overall, we are thrilled that today went as well as it did. Campbell is doing quite well.  The day has been long and the week even longer, and my bed is calling out my name.  I’ll check back in tomorrow.  Goodnight, friends.

 

 

Photos: Post/Pre-Surgery Week

Campbell is set to head back to the OR tomorrow morning to replace a distractor that malfunctioned.  She’ll be the first case in the morning, and this surgery should take less time than her last one.  Once she’s out, she’ll spend a night in the PICU for observation and then hopefully move to the floor for a few days while she recovers.

The past week has been emotional for Joel and I.  It started with saying, “See you soon” to Campbell last Wednesday when she went into the OR.  She was so brave.

Here she is right before her surgery.  As you can see, her head ends right behind her ears and is quite flat.  After surgery, it will be more full in back and be able to grow as her brain grows.

Campbell was patient 3334.  We tracked her progress in the OR on a screen in the waiting room.  At the time of this photo, she was in the OR almost 6 hours and still had another hour to go.

Jamie Cook and her daughter, Callie Anne, cheered on Campbell from Arkansas.  Callie Anne has Apert Syndrome and is two weeks older than Campbell.  Her mom, Jamie, has become a friend, and I look forward to our families meeting someday.

Here’s our girl after surgery, settling into the PICU.  She came out of the OR with quite a few IV’s.

Here is Campbell on the day after surgery “celebrating” her four-month birthday.  The swelling has begun to set in but is mostly in the back of her head.  We couldn’t ask for a sweeter baby.

Here are some of Campbell’s awesome nurses.  The staff at CHLA have been amazing and are taking very good care of our girl.  We feel blessed to be here.

Several friends have come to visit Campbell.  Here are a couple of photos:

We’ve run into two Apert families in the lobby, the Reiss Family and the Weissberg family, both of whom see some of the same doctors as Campbell. Tania and Miles came up to visit Campbell.  Miles is a precious boy and was so excited to say hi to Baby Campbell.

Occasionally, Joel and I took a break from the hospital to get some fresh air.  It was wonderful to have a few quiet moments to regroup.

A child-life specialist came by and lent us some toys for Campbell’s crib.  She’s been exploring using her hands (with a little help).

We added a few bright toys to the top of her crib.  While we’re not sure how much she sees, here’s her view:

Some more pictures of our little girl.  She’s quite a charmer.

Last picture of our girl. Here she is with her “antennas” wrapped up in her cocoon.  She has gauze strips over her distractors to catch any drainage (the gauze is gone now.)

Thank you, friends, for your support, messages, and prayers. Tomorrow is a new day, full of promise and possibilities, and we are grateful to have people like you in our lives.

A bump in the road

So the small complication this morning turned out to be more complicated than we thought.  Campbell’s right distractor malfunctioned and needs to be replaced in the OR.  Because the surgery requires the scheduling of multiple teams, it most likely will be next Wednesday. So we are at CHLA until then.

It’s a bummer that the distractor isn’t working, but this is one bump in a very long road for Campbell and our family. We are very thankful that this is fixable. Dr. Toranto said this surgery should be much shorter than the first.

Currently, Campbell is resting comfortably and is the most alert she’s been in days. We’ve been working on pain management, and with the exception of the distractor, Campbell is recovering nicely. A childlife specialist visited today with some brightly colored toys which we’re using for her vision therapy. The staff here at CHLA has been wonderful.

Our plan now is to work towards surgery on Wednesday.  Thank you for your support and prayers.  It means so much.  Have a great Friday night, friends!

Pre-Surgery Week and Smiles

On Monday, we met with Dr. Toranto, Dr. Urata’s fellow, who walked us through Campbell’s surgery for a posterior cranial vault with distraction osteogenesis.

From what we understand, the surgical team will make a headband-like zig-zag cut and place metal distractors, or spacers, along the scar.  As the scar begins to heal, they/we will turn the distractors (which sound like glorified hex screws), which will in turn lengthen out the scar and allow the bone to fill the space.  After the distractors create enough space, the lengthening process stops and the distractors remain in place for three months while the bone finishes filling in and hardens.

This surgery will focus primarily on growing bone in on the posterior (back) of the cranium while giving her brain room to grow.   The cranial vault surgery later this summer/early fall will address the front part of her skull and the overall head shape.

Here are a couple of articles describing the posterior cranial vault with distraction surgery (one with photos showing the stages of distraction and one with photos of the surgery.  Please note: some of the photos are a little graphic). As with all craniofacial surgeries, each patient and situation is unique so Campbell’s surgery and results may be different.

Dr. Toranto discussed the risks and desired outcomes with us, and while turning our daughter over to the surgical team is difficult, this surgery gives Campbell’s brain the space it needs to grow.

Also on Monday, we saw the craniofacial psychologist, geneticist, research aid, and Joel and I banked blood for Campbell’s surgery.

On Tuesday, we went back to CHLA and met with two doctors from Pulmonology.  Campbell’s sleep study results came back, and she did less than stellar. The study showed that Campbell has a lower oxygen baseline and her pulse ox rate dips significantly when she’s sleeping.  This could be due to the anatomy of her nose, her recent RSV, or some other combination of factors.  In any case, Campbell needs oxygen, especially at night, so she’s been outfitted with oxygen tanks and a nebulizer.  She’ll repeat the study in a couple of months to see if the surgery affects her oxygen levels, and hopefully, she won’t have to be on oxygen long-term.

On Wednesday, Campbell had an occupational therapy evaluation at CHOC.  The therapist said Campbell should be in OT, and she’s been place on a wait list for an opening in scheduling.  Currently, the wait is one to two months to begin OT services.

On Thursday, Campbell saw her vision therapist from the Braille Institute.  Every day Campbell seems a little more alert and her vision “window” is lengthening.

Campbell is scheduled for an MRI early next Tuesday morning and she will most likely be the first surgery on Wednesday.  She’s a difficult intubation and is small, so unless a younger baby needs surgery on that day, she’ll be the first case.

The biggest thing that happened this week was that Campbell broke into a full-on smile.  We were tickling her and the boys were singing to her about how pretty she is when she sneaked it in.  The whole family erupted in cheers.  We are looking forward to seeing more of that smile in the days to come!

Progress and Hope

Last week was a very full, but good week.  Our schedule is busier than we usually like, but it feels good to be doing something to help our baby girl.  We are watching God answer our prayers, one by one, and sometimes, in very unexpected ways.  It’s amazing and humbling.

The Regional Center performed an initial evaluation of Campbell, and she has a second developmental evaluation with an outside agency scheduled for tomorrow.  We are excited, as she is one step closer to getting the help she needs.

On Monday, Campbell saw Dr. Urata again.  He and his team determined they would take a two-stage approach to her cranial vault surgery.  Her first cranial surgery, which will release the back of her skull (most likely through the use of distraction), is scheduled for April 10^th, her four-month birthday.  Since blood loss is common in cranial surgeries, Joel and I will bank blood the week before in case she needs a transfusion .  The surgery itself takes around four hours, and Campbell will spend five or so days recovering in the hospital. The second surgery, which will address the front part of her skull (including the forehead and coronal sutures), will be scheduled when she’s eight to ten months old.  As I learn more about what each of these surgeries involves, I find it comforting that Campbell won’t remember any of this.

On Thursday, Campbell had follow-up appointments for her incision and infection.  The clindamycin appears to have cleared up the infection, and she has one more week to go to get her stitches out.

Campbell also saw a head and neck surgeon on Friday to address breathing and eating issues. In addition to ordering a sleep study, this doctor will scope her airway and esophagus while she’s under anesthesia during her cranial surgery in April.  When she’s closer to a year old, she will undergo a cleft repair for her soft palate, which should help her feeding issues.

Overall, this week held great news and progress for our girl, and we kindly ask for your continued prayers.

The days ahead, like some of the days past, are going to be hard, yet we know that God is purposeful and wants good for Campbell, our family, and our community.  In my weakest moments, I have wanted to run – oh, how I’ve wanted to run away. Without shaming, God whispers that He understands, that He is near, and that He hears my heart breaking for my girl.  Time again, He tenderly assures me He loves her more than we do and that no matter how hard or far I run, I can’t escape His great love.   As He continues to pour out his generous mercy and grace, I wait with anticipation for the day when He makes known His purposes, for that is what gives me hope now.

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.   2 Corinthians 4:16-18