Answered Prayers

Last Wednesday we went to Brooklynn's pre op appointment.  Her surgery was scheduled for Tuesday, March 4th at 7am.  For her pre op, we were told we would meet with the surgeons and they would present their plan for surgery, answer any questions we had, and then we would go register at the hospital afterwards.  Joe was able to get off of work to be there with us.  Over the past several weeks we had had time to let it sink in that our baby girl would be having an intense surgery, and I think we both kind of came to terms with it.  Was I terrified of the idea?  Absolutely!  But I had started to accept that she would have a scar across her head, we would be in the hospital for days, and this was going to be one of the hardest trials we had faced together.  My biggest fear was how I would react the first time I saw her after surgery.  The Drs had said she would be very swollen after, and from the images Joe had seen online, he said she wouldn't look like herself at all for a while.  Sometimes I would cry just imagining that moment!  He told me I should look at pics online to sort of prepare myself, but that's not how I wanted to deal with it.  I knew whatever images I saw, would just flash in my head over and over and over.  I wanted to just experience it when I had to, and not freak out about it beforehand.  So, I told him I didn't want to see any images.  I would just live in the moment, and deal with my emotions as I felt them.

We had received SO many loving and supportive comments since I shared with everyone what was going.  It reminded me of the outpouring of love we received after I miscarried the last time.  I can't even express how much it meant to us to know that so many people were thinking about us and praying for Brooklynn, and it really gave us strength to face what was ahead.

We went to the appointment with a lot of questions about what to expect afterwards as far as her healing time, swelling, controlling her pain, etc.

First things first, they needed her weight!

 23 Pounds of cuteness!

Next, Joe decided he would have her stand there so he could get her height!=)

29 Inches Long

She had fun sitting on the table and playing with the paper while we  waited for the doctors.

Taking a few "Selfies" to keep her entertained while we waited

After about 10 minutes, the neurosurgeon, plastic surgeon, and a couple other people entered the room. Dr. Lamb, the neurosurgeon, started talking about the scans, and what they had seen(Joe and I just thought she was reviewing what they had told us the last time), except for she was saying things like "We just don't think we can give you a much better Brooklynn."  After some medical terms, and a few questioning looks between Joe and me, I finally said "Wait a minute, are you trying to tell us that you think she DOES NOT need the surgery?!"  She responded saying that they had further reviewed the scans, and the measurements, and her current head shape, and she had a VERY MINOR case of cranial synostosis.  She said that her head shape looks really good compared to most children they see, and they just didn't feel like they should put her through this big surgery, and a possible blood transfusion, just to correct the shape of her head by a little bit.  Joe and I could not believe what we were hearing!  Never in my wildest dreams did I expect to go to this appointment, and hear that she wouldn't need the surgery after all!  Relief surged through my body! I felt a huge weight immediately lifted off of my shoulders and I couldn't stop smiing!!   I almost expected them to say "April Fools!" but they were for real!  

Dr Lamb said they had another neurosurgeon that she was going to have come in so that he could look at Brooklynn and give us his opinion.  He was a more "seasoned dr" and had done this for many years, and she wanted us to have a second opinion.  He told us that he thought the same thing Dr lamb did.  He said they thought the bulging of her forehead would lessen as her head got bigger, and that they had the option of doing this surgery up until she is 2.  So, he said if for some reason things don't go as they think they will, we can always do the surgery later, and we won't be losing anything!  I asked them as a group "If this were your child, what would you do?"  That neurosurgeon said "If you were my daughter, and she were my granddaughter, I would INSIST that you not do the surgery!"  Dr Lamb said she had really been thinking about this, and she said she just couldn't look us in the eye and say "yes, we should do this surgery.  I can give you a better Brooklynn!"  I felt like crying, but I was SOOOO happy that I just couldn't stop smiling!  They showed us an image of her brain, and said that her head shape wasn't affecting her brain at all, and the spaces that needed to be there were there.  They recommended seeing an opthamologist just to be sure there wasn't pressure there, but she said they would be shocked if there were!  

They took some 3d images of her head, and told us they would follow up with us and monitor her over the next months and years, and they would be in touch with our pediatrician.  

I can't even express how we felt, other than so relieved and extremely grateful!  

She had to wear a little stocking on her head for the pictures

Joe got to go in the machine with her, and my job was to keep her entertained so she would hold still.

You can tell by her smile, I was doing a pretty good job!=)

A little side story I want to document, so I don't forget.  So, we had our home teachers from church come over last Sunday and Joe told them this story.  He said he had forgotten to tell me, and I couldn't believe it when he did!  When we found out that there was a possibility that Brooklynn's skull was fused, before we went to have her CT Scan, Joe and I made the decision that we wanted to fast for her. We went 24 hours without food or drink, and kept a prayer in our heart that all would be well, and if at all possible, she wouldn't have to have surgery.  Later that day is when we got the results back from her scan and learned that her suture had fused and she would most likely need surgery.  If I'm being honest, I felt a little bit discouraged, sad, and angry.  I know I didn't respond well, but those were the emotions I felt.  I  kind of felt like our fast had been in vain.  Well, part of fasting is paying a fast offering-giving the money you would have spent on the two meals missed, to the church to give to the poor.  Joe said that at church that following Sunday, he forgot to pay our fast offering, and then he ended up missing church the next Sunday for work so didn't pay it then either.  He ended up paying it a couple weeks ago on the Sunday before Brooklynn's pre op appointment.  At that appointment is when we found out that she wouldn't be needing surgery after all!   I was so humbled when I heard Joe tell this story.  Heavenly Father was very aware of us, and I know that things aren't always answered in the way we want them to be.  If Brooklynn would have needed surgery, there would have been a reason for that trial and I should have trusted in Him better.  However, we were granted this blessing, the desire of our hearts were answered once we completed our fast by paying fast offerings.   I felt this deep feeling of love rush over me, as Joe told me and our home teachers this story.  I know things aren't coincidence.  As we did our part, and completed the process fully, Heavenly Father was able to bless us.  He is always there and He loves us, and I felt that as Joe told this story.  I also know that there were countless numbers of prayers offered in Brooklynn's behalf by friends and family, and that her name was put on the temple prayer roll a number of times.  There is power in numbers.  Thank you so much to all who have been there for us, and prayed for us during these last several weeks.  You'll never know how much we appreciate you!

Curve Ball

At Brooklynn's 9 month checkup several weeks ago, after the pediatrician did her exam, she said she wanted to talk to Joe and me about something.  She said that she suspected that the soft spot on the top of Brooklynn's head had fused prematurely.  She said she could be wrong, but she wanted us to take her to have a CT Scan done to make sure.  Better safe than sorry.  She told us if her skull had fused,  it would most likely require surgery.  They would need to go in and cut it to allow room for her brain to grow.  If it wasn't corrected, the head wouldn't expand for the brain to grow, so her brain would just push out and cause her head to be oddly shaped, and it would mess with the symmetry of her face.  She said there would just be a small scar, and that it was a minor surgery.

I think Joe and I were both surprised!  Not really something we were expecting to hear.  I know it gave me a little anxiety, and I'm sure Joe felt that way too.  Brooklynn's head shape is just like Joe's when he was a baby, so in all honesty I was expecting to take her to have the CT Scan, just to find out that everything was fine.  I called and scheduled the appointment for a week and a half later when Joe could be there with me.  

On the way to Texas Children's Hospital

 Once we got the paper work filled out, we waited about 45 minutes until they called us back.  

Hanging out in the waiting room

So glad Daddy was there!

 When they finally called us back, my heart started racing!  I wasn't really sure how Brooklynn was going to react.  Luckily I had scheduled her appointment around her naps, so she was happy as could be.  From the time they called us back, until the time we were walking out, was probably only about 15 minutes.  They had me lay Brooklynn on the bed, and then the lady swaddled her with a blanket, and then put this material over her to keep her held down, and to protect her from radiation.  Joe and I were both asked to put on vests to protect us, and then we were allowed to stay right next to her the entire time.  That was such a relief!

 They put a towel over brooklynn's forehead and around the sides of her face,  and then used a strap to hold her head down and keep it from moving.

The scan itself took less than a minute, and thankfully Brooklynn was relatively calm and did better than I was anticipating.  You can see the lights they flash up on the machine to keep the kids entertained.  Worked like a charm!

After they finished the scan, they said we should contact our pediatrician after 24 hours to get the results.  So, we went about the rest of our day.  We went to an Asian Supermarket to pick up some stuff for dinner that night, and while we were there I got a call from a number I didn't recognize.  When I answered, it was our pediatrician.  She said she had received the results, and it was what she had suspected.  Brooklynn's head had fused, so she would need to go see a specialist and have surgery.  I was in an aisle by myself, and I couldn't help but start to cry.  Those weren't the words I was expecting to hear.  Joe came around the corner and I think he immediately knew.  Needless to say, our hearts were heavy after that.  The pediatrician told me not to cry, that everything would be ok and this was something that was fixable.  There was hope in her words.  I took comfort in the fact that she would just have a small scar, and that it was something that could be fixed.

Over the next couple of days Joe did some research online, and told me "don't google it."  Well, you don't have to tell me twice.  He knew I would get freaked out.  I'm sure he was looking at extreme cases, but I knew I didn't need to have images flashing through my head at night.  One thing he did say is that he found out that they could only do the procedure endoscopically up until 4 months, so she would likely have a scar the length of her head.  When he told me, I was in the middle of dinner or something and didn't really think much about it.  The next day though, it's all I could think about.  I just cried and cried thinking about my sweet baby girl having to be sedated and undergo surgery.  Let alone, one that would leave a huge scar across her head.  Whenever I looked at her, it just made it worse because I would  think things like "her little head is going to have a huge scar soon", or "they're going to have to shave off all of her hair that has taken so long to grow."  I just couldn't shake the sadness that day for some reason.  I think it just finally hit me that my baby was going to need surgery.  I ended up showering, and getting right back into my jammies.  It was one of those days.  I think I cried until I didn't have any more tears left.  My sweet sister-in-law, Shelby,  came over and brought these beautiful tulips, a box of chocolates, and a magazine to help take my mind off of things.  Her visit totally changed my day from that point on.  I didn't cry anymore that day.

 Our pediatrician referred us to a surgeon that didn't have any openings until the 25th of this month!  Not knowing what Brooklynn's case was, or what would need to happen was driving me a little crazy.  Joe's brothers are both in the medical field and were so sweet to try and find out more information for us.  James asked if we would be willing to go see someone if they had an earlier appointment available.  He ended up finding a team at Texas Children's Hospital.  I called Monday, and they had an opening today!  Joe was able to get off work, and went with us.  Meeting these doctors was seriously an answer to prayer.  I had been praying that we would know which doctors and direction we should go, and that we would know by the way we felt.  From the moment we were called back, everyone was so kind and so sweet.  The Plastic Surgeon, the Neurosurgeon, and a dr from the neurosurgeon team all came in and met with us!  They answered all of our questions, and explained everything very clearly.  They spent quite a bit of time with us, and never once did they make us feel like we were keeping them from other things.  We told them who we had been referred to, and asked what the benefits would be of having the surgery done with them instead.  The Neurosurgeon explained that this is their specialty.  The Plastic Surgeon had done a fellowship dealing with things just like this.  The other surgeon we had been referred to did not specialize in this, it was something he just did also.  She also said they have a team including a plastic surgeon, a neurosurgeon, a neuro team, an anesthesiologist, etc that work together on these surgeries all the time.  She also said the follow up care would be a lot better also.  She said Texas Childrens' is the biggest Children's hospital in the country, and they understand these are our babies, so they give the best care possible.   Joe and I both felt really good, and decided these are the doctors we want working on our baby.

The sagittal suture that runs down the top of Brooklynn's head has fused prematurely, which will cause her head to be long and narrow as her brain grows because there isn't room for it to grow.  It has caused a ridge on the top of her head, where it fused, and her forehead sticks out more than normal, and will only continue to get worse if we don't correct it.  They did say that her case is a lot better than most that they have seen, as far as the look of her head.

So, what they will do is sedate her, then cut her head open from ear to ear, using kind of a zigzag line because it will hide the scar in her hairline better down the road.  She will undergo roughly a 4 hour surgery where they will cut the suture open and use plates and bolts that will absorb, to hold her skull together.  It will eventually refuse but not for years. They are also going to essentially reconstruct her forehead.  There can be a lot of bleeding, so there's a 50 percent chance she will need a blood transfusion.  Joe and I will both be tested to see if we are a match. They said there will be a LOT of swelling in the days following the surgery, and she will stay in ICU for a couple of days to be closely monitored, and will spend a total of about 5 days in the hospital.  I will be able to stay with her the entire time after the surgery.  Later down the road she will wear a helmet for a couple of months to help shape the back of her head.  They want to do this instead of doing it surgically, because they think this way will work just fine.  

 I'm sure it will absolutely break my heart to watch her go through all of this(it kills me just to think about it), but I have to think of the bigger picture and that it will all be worth it in the end.  This wasn't really the way I thought we would start our year!  We definitely got thrown a curve ball, but I am very very grateful that it's not something worse.  I have really been thinking a lot about parents who have to constantly deal with things much worse than this.  I can only imagine the emotional toll it takes.

I'm sure the road ahead will be draining, but we have learned to accept our trials and to try and learn what we can as we go through them.  I'm sure we will be relying on our Heavenly Father even more during this time.    Shelby shared a quote with me the other day that will stay with me. "The Will of God will never take you where the Grace of God cannot protect you."  Any prayers in Brooklynn's behalf would be GREATLY appreciated!  We find out Friday when they will do the surgery.

At the Dr's office today

Cutest little teeth!

Love this girl more than words can express!