Local News Article on Eli's Condition

A friend just told me about this article this morning.  It aired on the local news earlier this month.  These are the awesome doctors who did Eli's surgery!  And I guess Eli's surgery must have been one of the first these doctors did together.  Now that I think about it I think someone said something about that in the hospital.  So grateful for the vast medical knowledge today!!!  Eli is doing so well. We are truly blessed!

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NEWS ARTICLES 

Posted 1:13 PM 8/9/2013 : TMC surgical team now treating lopsided heads on babies 

TUCSON- It happens more frequently than you might think. One in 2,000 babies are born with lopsided heads. It's a condition that requires corrective surgery and now a couple doctors at Tucson Medical Center are taking on the challenge. 

The condition is called craniosynostosis. For just the third time at TMC a baby has had part of their skull taken out, reshaped and put back in place, allowing the brain to grow normally. 

Alvaro and Maria Rossette knew something wasn't right as soon as their baby girl, Anazia was born. They learned the front of her skull had fused too early and she would need surgery. 

"Very nervous, stressed. Who wants a child to be in surgery for six hours? Especially head surgery," said, Alvaro. 

Dr. Sanan, the neurosurgeon who performed the surgery explains that the skull is made up of multiple bones and as a baby is growing, all of these separate bones have to grow in order for it to maintain its normal shape. Craniosynostosis fuses those bones too soon. 

"The face get's misshapen, the eyes get misshapen, and the end result is a child that doesn't look right and a brain that's sort of developed in the wrong areas," said, Sanan. 

Anazia's skull had already fused near the forehead. But, the eight month old was in good hands. Dr. Sanan, and Dr. Ley Tai, a craniofacial surgeon, work together to perform the surgery. 

"One of the major parts that I perform is to reshape the bones with various tools and very specific cuts on the bone to make them more of a normal shape," said, Ley Tai. 

So, after six hours of having part of her skull literally cut off, reshaped, and screwed in place, little Anazia woke up and her dad says she recovered quickly. 

"We're really excited knowing that it's going to help her in her learning development, it's not going to affect her cause if we wouldn't have done the surgery it would have probably affected her in the long run." 

Before Dr. Sanan and Dr. Ley Tai performed this procedure in Tucson patients were being sent up to Phoenix. So, this surgery is providing a great resource for families facing the issue and clearly they are in capable hands.

Update on Eli: Surgery (Backtrack)

Eli was diagnosed with unicoronal craniosysostosis at 3 and a half months old.  He had corrective surgery on his skull at 5 and a half months old.

Pre-Op

June 9 - Packing for the hospital

We woke up early Monday morning (June 10) and headed down to the hospital (TMC), about a 30 minute drive, to get there at 5:30am to check in.  We finished up some paperwork, and Eli got dressed in his little gown and the nurse took some vitals.  All the doctors came in to see us (neurosurgeon, plastic surgeon, anesthesiologist, surgery nurse), and after a long time of waiting that went by too fast, they were ready for Eli.  We passed him off to the nurse, and she carried him away and our hearts broke as we watched them head behind closed doors.  He was so innocent, so unknowing of what he was about to go through.  That moment was the very hardest we had faced as parents.  He went back to the surgery area at around 7:30am, and we went back out to the waiting room, where all we could do was wait.

The Surgery

All dressed in his gown and ready to go!

We were told by the doctors that the surgery was expected to last about 3-4 hours, and they scheduled an extra hour after that just for buffer room.  We weren't sure if that was from the time Eli went back or if it was from the time they started the actual procedure.  Adam and I tried to keep ourselves busy and our minds off what was happening to our son by playing games in the waiting room.  We got a call in the waiting room from the surgery nurse at 9:25am letting us know that they had begun the procedure at 9am.  That was the only communication from the inside we had all morning.  When 11:30am came around we started getting anxious.  It had been 4 hours since they took him back but only 2 and a half since the actual procedure had begun.  We started getting really anxious when 1pm rolled around, and tried not to feel worried every minute after.  We watched doctor after doctor come out of the surgery area looking for family of other patients to talk to them.  It was torture being away from Eli for so long and waiting to hear anything from anyone about how things were going!  Finally at 2pm I saw both doctors come out of that door!  What a happy and reliving sight!!!  To see the doctors I recognized, I almost jumped to my feet!  Adam was telling me something when I saw them and I didn't hear anything he said after that.  The first thing that was said was from the plastic surgeon to the neurosurgeon, "Should we go to one of the conference rooms?"  The neurosurgeon must have felt our concern or seen it on our faces because he quickly reassured us that everything went fine.  Phew!  We followed them to one of the small conference rooms and they told us that everything went well and that we would be able to see Eli soon.  They were very pleased with the results of the surgery.  What a load off!

Picture with Dad before the surgery

Picture with Mom before the surgery

Post-Op

We went back to the waiting room to wait for another hour until Eli was awake enough and ready to be transported to the PICU.  A nurse finally told us we were going to meet him (pushed in a crib by nurses) by the elevators.  And we waited.......  And there he was!  It was SO good to see him!!!!  We followed the nurses down the elevator and through hallways until we finally reached his room at the PICU.  He was peacefully sleeping but they had to pick him up to move him to a PICU crib.  And of course he woke up and was cranky and cried for the next 20 minutes.  But we were with our son again and all was right in the world.  The worst was behind us.

To be continued...

Update on Eli: 2 Months Post-Op

Well, now it's been 2 months since the surgery.  And Eli is doing awesome!

His hair is growing and starting to cover the scar, which healed really well.  His left eye is evening out nicely, and so is the shape of his head overall, which took a little time but he's still growing all around so we expected that.  I was a little nervous before the surgery about how different he would look after, but he's still our little Eli and he looks great!  And his sweet scar is healing really well.

Taken just a few days shy of 1 month since the surgery.

His development was on pause for a couple weeks, but he's gotten right back into the swing of things. I wasn't sure what to expect with his development but it's like he didn't even have a major surgery done! He's rolling over both ways and both from back to tummy and tummy to back, eating solids like a champ, gaining lots of weight, playing with anything he can get his hands on, and smiling and giggling and talking away!  He's having a blast in life and doing very well in health and wellness.

He's been to see the neurosurgeon once and the plastic surgeon twice since being discharged from the hospital.  We won't see the neurosurgeon again unless we need to, and we have our next appointment with the plastic surgeon next month. We'll be seeing him regularly, but not as much as I thought we would need to, which is nice. We'll probably see him a few more times before the year mark from the surgery, and then once a year after that until Eli stops growing when he's in his teens.  We also have an appointment with the opthamalogist in a couple weeks just to make sure everything is still good and normal with his eyes.

About a week after we came home from the hospital Eli got sick with a stomach bug and spent the Sunday puking and the rest of the week diarrhea-ing.  It was a messy week.  But he's been fine other than that.  Everything is looking good and normal with the pediatrician; his 6 month checkup and shots were fine.  The biggest thing is that he was having trouble sleeping through the night.  He was sleeping through the night before the surgery so it was tough having to deal with him waking up again.  I'm sure he was used to being woken up in the hospital and eating around the clock again, but after about a month or so of being home, after trying to sooth him without picking him up or feeding him, we let him cry himself back to sleep during the night.  It took a couple days for him to adjust but he's back to sleeping all the way through, with the occasional 10 or 11pm 1 or 2 minute whimper wakeup (and then right back to sleep). 

All in all, this has been a very positive experience.  Everything has turned out better than we anticipated.  The surgery itself was longer than we thought, but his stay in the hospital, his bandaging, his recovery at home, his development, his personality coming back, his head shape and look, and more were and are much better than we expected.  He is doing great, and we love him!  We can't believe the support we've had from so many people.  We are so blessed and so grateful!

This was a difficult thing to go through, and I'm glad it's behind us.  But I'm grateful for this experience because we are better people and a stronger family because of it.  Our outlook of hope is solid because of our solid hope of and faith in Jesus Christ.  He atoned for all our afflictions and pains and succors us in times of need.  In His holy house, in the sacred temple, we have made covenants with God which has enabled us to be sealed together as a family for eternity.  So long as we stay clean and worthy of the blessings, nothing in this life on Earth can break that family relationship.  Eli will always be ours.  We thank our Father in heaven every day for the tremendous blessing and joy he is in our lives.  :)

Update on Eli: It's Almost Time

Well, the waiting is just about over.  Eli goes in for his surgery Monday morning.  All this time we've just been putting it off in our minds, feeling like June 10 was always so far away.  But now it's right around the corner.  We're still trying not to think about it, but it's becoming even more inevitable.  The nerves are starting to sink in.  And if I'm being honest, it makes me sad and want to cry.  His cute little perfect peach-fuzz head won't ever be the same.  Or at least not for a little while.  He'll have a nice long scar from ear to ear, and probably a shaved head.  He's worked so hard at growing the little hair he has now!  We're still not exactly sure what recovery and care will be like after we come home after our hospital stay.  I just know we're going to have to be extra careful with our cuddles and probably cut back on them for a while.

Our situation really isn't bad.  Eli's condition isn't life-threatening, and neither is the surgery.  It's just reconstructive, really.  And the plastic surgeon and neurosurgeon are highly trained and skilled.  I'm definitely grateful for that.  I know everything will be "OK."  You just never want to see your child go through any kind of surgery.  Especially not your baby, your infant.

Thank you to those who have given us your love and support, through words and thoughts and prayers.

I'm grateful to know that our bodies will be perfected after this life when we're resurrected, made possible by Jesus Christ, because He broke the bands of death and rose again.  I'm also grateful to know that because He conquered death, we will too, and in addition to that, the laws and ordinances in His gospel allow our family relationships to extend beyond the grave.

Eli will always be ours.

I love this little guy to pieces!

Update on Eli: Dr Visit - Opthamologist

Another little update.

We saw the opthimalogist last week by suggestion from the plastic surgeon just as a precaution. Everything is fine and normal. He does want to see him a couple months after the surgery as a follow up to make sure everything is okay from the surgery since they will be doing stuff around his eyes  So we'll be seeing him again in August.

Update on Eli: Dr Visit - Neurosurgeon; Next Steps

Just a quick little update.

We saw the neurosurgeon on Friday.  It was mostly a sort of meet-and-greet.  He told us that he agrees with the plastic surgeon's assessment of Eli's head and needed surgery.  He's a real nice guy and very likable.  He called the plastic surgeon while we were there and they figured out a date -- June 10.  We have to be at the hospital by 5:30 in the morning.  Eek!  It will make for a less grumpy Eli though, since he can't eat or drink anything after midnight.  Anything for him!

We have an appointment with an opthamologist next Tuesday to check the pressure on Eli's eyes, just to make sure there isn't anything abnormal about it.  After that we have one more appointment with the plastic surgeon in the middle of May where he will go over everything again with us and will let us know what the plan is for surgery.  Between now and this appointment he'll meet with the neurosurgeon to devise their whole plan for the surgery.  He'll also take pictures of Eli's head then.  For a "before" reference, or documentation I guess?  Then the surgery, a couple days in the hospital, and a follow-up appointment with the neurosurgeon a week after.

From what I've heard and read, kids bounce back from this kind of surgery really fast, like a couple weeks fast!  I was really surprised to find that out.  I was thinking he'd be delayed a couple months or something (which, even if that were the case wouldn't be all that bad -- He'll still learn to talk and walk and everything like a normal kid!).  But it sounds like this really will just be a little blip in Eli's childhood.  Still, we appreciate and definitely benefit from all the prayers and support!  A big THANK YOU to all of you.  Knowing that people are out there thinking about us and caring about us means a lot.

Previous posts:

• Update on Eli: Dr Visit - Plastic Surgeon (March 22, 2013)
• Update on Eli: It's Confirmed (April 15, 2013)

 **Eli is just shy of 4 months!!  Wow!**

Update on Eli: CT Scan - It's Confirmed

The plastic surgeon called last week to tell us that the CT scan results confirmed what he had thought -- that that part of Eli's skull has prematurely fused (read the details here).  Which means he's really having surgery this summer.  A part of me hoped and thought maybe he just wouldn't end up needing it after-all...  But he does.

We could opt to not have the surgery.  But that would be silly.  The benefits outweigh the negatives.  If he didn't get the surgery then he may face a number of things throughout his lifetime, including deformities in his head that could severely effect his appearance, his brain, and even his jaw.  These doctors are highly skilled and highly trained to be so.  I trust my son in their hands.  And I trust my son and the doctors in the hands of the Savior.

The next steps are for us to meet the [very busy] neurosurgeon and see an opthamologist (to make sure there isn't any abnormal pressure on Eli's eyes).  We'll be meeting with the plastic surgeon again about a month prior to the surgery, which is when we will work out a time to schedule that.  I'm thinking middle to end of June ish.

Is this hard to deal with?  Sure it is.  Can we handle it?  Yes.  How?  Because there is hope in the Gospel of Jesus Christ.  This life on Earth is not the end of our lives; We've been sealed together as a family by God's power on earth, which means we will still be a family in heaven; Christ broke the bands of death and was resurrected so we could live again as resurrected immortal beings in eternal happiness and peace, with our family!  How can I be sad about that??

Our lives here are short, but we of course don't wish for them or those of those we love to be any shorter.  So I take it one day at a time and enjoy every second I have with each person I dearly love.  And Eli is definitely at the top of that list!

Eli is 3 and 1/2 months old!  Time flies soo fast.  I love him so much!

Update on Eli: Dr Visit - Plastic Surgeon

Eli is almost 3 months old!  He is healthy and growing and just as cute as can be!  We love every second with him.  I know I have lots to update about him in his almost 3 months of life, but I wanted to share the most recent news.

Our pediatric doctor referred us to a pediatric plastic surgeon in town to get Eli's head evaluated -- it has been a little misshaped since birth.  We thought nothing of it, maybe he would need a helmet, that would be fine.  But it turns out he has something called Unicoronal Craniosynostosis, which can only be fixed by surgery.

The doctor believes one of the sutures, the top right one, in Eli's skull has prematurely fused together, resulting in the misshape of his head and brow.  Untreated it could cause major deformities in his head over time, including all the way down to the jaw.  This condition cannot be fixed with a helmet.  Surgery is the only option.  Thankfully the doctor said the condition and surgery are not life-threatening.

First things first, Eli will be getting a CT scan in the coming weeks to confirm the fusion.  Next he'll see an opthamologist by recommendation from the plastic surgeon to make sure there is no abnormal pressure on his brain and eyes.  Then we'll meet the neurosurgeon at the hospital who will be assisting the plastic surgeon (craniofacial surgeon).  Then bloodwork and cranial surgery this summer, when Eli is 5 or 6 months old.  The surgery itself will last about 3-4 hours and Eli will stay in the hospital for recovery for 5 days.  He will be monitored by the doctor until his teenage years, but the surgery should take care of the condition without need for further correction.

The condition is not super common, but not super rare either.  Apparently it is something he just has.  We didn't do anything to cause it.

Eli is doing well and does not seem to be in any pain.  Except for the shape of his head and brow he seems to be completely normal.  Counting my blessings!

Adam and I are doing fine after the initial shock of hearing the news.  Of course we are worried and nervous partly because any outcome has some uncertainty, but we are also at peace because we know our Father in Heaven loves us and Eli and will take care of him, and that he will be in the hands of very capable doctors.  How grateful I am for modern medicine and medical knowledge and the doctors who train to serve in our communities!  My faith in Jesus Christ is strengthened through this, shall we call it, trial. He makes it easier for us to witness our son go through this.

Everything should turn out fine.  This just isn't something you want to watch your child go through.  We're holding him extra close today!

We love Eli so much!  I'm glad we don't have to go through this alone.  Thanks for your thoughts, prayers and support.