The surgery details

(viewer discretion is advised, this post is not for the weak of stomach, also it has some graphic pictures)

Today we went to see the Neurosurgeon to better understand exactly what will be happening to our Miss Tiny in July. It was very informative. We were able to see the 3D CT scan of her skull and discuss how they were going to fix her malformed skull. Dr. Cambrin told us that if we didn't do the surgery there is a 15% chance her fused skull would effect her intelligence. That is high enough for me! Also, without surgery she will become deformed looking, and surely get teased her whole life. Which apparently can also lower intelligence. So of course we are going forward with the surgery in July. 

What her skull should look like

What Autumn's Skull does look like
 The image is opposite, but the forehead should not be fused!

Dr. Cambrin explain exactly what they will be doing. I have provided some pictures to better illustrate. So you can stop reading now if you don't want to know what is going to happen to our little Autumn.

They start by making a zig-zag cut from ear to ear. They do the zig-zag so her hair can more naturally grow over it. 

Next they will pull her forehead skin down to expose her frontal bones. They next drill holes in her skull, so the Neurosurgeon can push the dura (brain cover) away from the skull so when they remove the frontal bone it won't pull any of the precious dura with it. Next is the CRAZY part. They actually remove up to half of her skull, including her orbital ridge! The Plastic Surgeon shapes the skull on a table and makes it look beautiful, Meanwhile leaving her brain exposed. Now obviously they keep it moist and clean, but its alittle freaky right!!!! 

 

Then they place the beautifully shaped frontal bone back on her head and attach it and sew up her skin. Isn't that just incredible!

Look at that Before and After! Just amazing! I am soooo super nervous, but I am excited as well. I am excited to see what my already beautiful daughter is going to look like with a normal forehead! I just wish we could skip the actual surgery process. You can imagine how awful they look right after surgery. The swelling and bruising is pretty bad. However, my surgeron's says it looks worse then it is. 

Looks pretty bad to me, but I know that she is in the best hands out there! Dr. Cambrin said she will just have to stay one day in the ICU, then 3-4 in inpatient. So, not too bad! Then after a few days they are back to their happy selves! It amazes me how fast babies heal. Good thing or I would be a mess with worrying about her pain. I feel awful that Miss A has to go through this, but I am thankful that the technology and knowledge is available. 

Love this gorgeous girl!

4 Months old

Missy just two week after we brought her home from the NICU. Hard to believe how far she has come in 4 months.

Stinker wouldn't get me a smile for any of her month pictures. She is too concerned with that giraffe next to her

She is in the same newborn onesie for all of her month pics

Miss Tiny is tipping the scales at 8lbs 14 oz (2nd percentile) and 22 inches (10th percentile) Still just itty bitty!

Autumn figured out how to smile this month, and Oh Boy! I am in love!  She just melts me every time she gives me that gummy smile! (the middle picture kills me)

One of her most favorite things to do is skin on skin with her daddy!

She finally fits in 0-3 months clothes! She definitely got good use out of her newborns.

Autumn got a new cousin on May 3rd! Kennedy Alice Adams. 9lbs 12oz and 21 inches! What a chunk. Just born and already bigger than Miss A.

She still loves to sleep with her hands out, and hates to be swaddled. Her binki is like a drug. You stick that in her mouth and her eyes roll back and she is a goner! Another adorable thing she does is coos and sighs in her sleep. She does it all night. Its the most precious noise ever!

And with that I leave you with a mid sneeze from Autumn!

Angel mommy

I have been thinking about my angel baby alot this past week. I have been thinking about how he would be interacting with Autumn.Would he want to be rough and want to play with her... Be gentle and talk with her.  He would be 2 1/2 years old now. Wow,... seems so long ago, yet like it just happened. He would probably getting into trouble and being the cutest little toddler ever! It is crazy to think of me having two living children right now. I find it a blessing and a trial that we lost Porter. Nate and I went through some serious stretching and strengthening in our marriage. I became closer to my Savior. I mourned more than I ever had. I fought depression and anxiety. I found myself again. I figured out the kind of Mother I wanted to be. Porter changed me. He made me better. He made me more prepared for his little sister to come down. He helped me grow my patience. He helped me understand what long-suffering really means. He helped me understand the Atonement of Jesus Christ, and how absolutely amazing it is. He showed me that I have sorrow hidden deep down inside of me, that only a few can understand. He helped me appreciate every second of being pregnant with Autumn, although it was awful at times. He has allowed me to love Autumn with the love of 100 mothers. He helped me find other angel mommies, that have hurt as I have, and have experienced the joy of having another baby as I did.  I am thankful for his special spirit. I miss him all the time, especially now that Autumn is here. I miss the things I never got to experience with him. The touches, smiles, crys, diaper changes, late night feedings. At times I feel robbed. Robbed of the experience to be Porters mom. But then I remember that I am still his Mother. I still get to raise him. He is my angel and I know he is looking out for me and Autumn. Sometimes it seems as though Autumn is staring at nothing, but then I think... Maybe Porter is here, and she is just looking at her older brother; having alittle conversation with him. I love my two babies. What miracles they are.

Self-Worth

I have been pondering self-worth alot lately.

I compare myself to others... ALOT

I compare my clothes, my hair, skin, teeth, body, finances, schooling, house, my spirituality,... You name it.  

I don't think I do it on purpose, or that I am even aware of it most of the time.

I mostly just say little things to myself like,

Oh I should have worn a different outfit to this function, so and so looks so adorable.  

Or wow, so and so has such nice skin, lucky. 

Or wow, how did so and so get so thin after just having a baby, Why can't I lose the weight.

Or, Why is so and so able to afford to go or do x,y,z and we can't.

Or, Wow, so and so is so well versed in the scriptures,whats my problem

Or, wow, so and so is so smart, Why did I just say that dumb thing.

But you know what!.... 

I am pretty,.. Maybe not in hollywood terms, but my hubby loves me just the way I am.

I don't have clear skin, but my crazy hormones are proof that I had a baby and I am a women and yeah, oh well, thats why there is makeup.

I may not have the finances to go buy all the dream clothes I want, but at least I have be approximately the same size since I was 18, so most of my clothes still fit me.

I may not be back to my pre-pregnancy weight, but this weight shows the 8 months I was pregnant and the amazing little baby that I get the pleasure of caring for.

I may not remember all of what I learned in College, or I may not read as much as I should, But I did receive my Bachelors Degree and I get to snuggle and play with my little baby all day.

I may not be the most well versed or educated in church doctrine, But by golly do I have a testimony of My Savior and of His Gospel. I know with all my heart it is true and that I am beloved by Him!

I measure my self worth by those that I love and that love me. By my accomplishments and trials that I have overcome. And by those standards I am worth a whole lot!

3 months

As I sit here on the computer I am overcome with such amazement and joy at the little mini-me asleep in her swing. It's hard to believe she has only been apart of my life for 3 months  (and 8 months in utero). I can't imagine my life without her. Heavenly Father has blessed me beyond measure with this tiny little girl. She is such a strong girl. She has quiet the personality as well.

 

Autumn loves to have her hand out stretched at all times.

She loves to furrow her brow

 

She is getting super strong and holding her head up

 

She is on the verge of smiling...

(for real, not just sleep and gas smiles)

Oh my heart can bearly wait.

 

She has doubled in weight since birth!

 

 

She is a super star at tracking and can follow my face!

 

She loves tummy time

She loves her car seat, and always falls right to sleep

 

 

She yawns more than any baby I have ever seen

 

She Loves her Binki

(thank goodness)

 

 

She has a mom that adores her

 

And a Dad who Cherishs her

What a Blessed Family we are!

Surgery!!!

As most of you know, my little miss tiny was born 7 weeks premature. She had to stay in the NICU for 6 very long weeks. She had a number of difficulties including breathing problems (lots of apnea spells), eating problems (she couldn't have breast milk for 2 weeks after she was born because of stomach issues), she picked up a virus while in the NICU and had to be in isolation, which lasted 3 weeks!!! Her heart also had a hole in it, her Patent Ductuous Arterious (PDA for short) didn't close and actual got bigger after birth which is super rare. She fell in the 10% of the 10% of babies that have this problem.  She had to go on some risky drugs to help close it or get surgery. Thankful through lots of prayers, the medicine worked with no side effects. She still has the hole, but it isn't very significant. She just has to see a cardiologist every year to get it checked. However, through all her problems, I knew she was going to be okay. She was actually one of the more healthy babies in the NICU and for that I was truly grateful. 

It broke my heart seeing babies who were born so early their eyelids were still fused shut and were a mere pound. Or babies who couldn't eat at all because they didn't have a esophagus. They were actually growing one there at the hospital (what a modern miracle).  Nate and I were and are truly blessed to have such a healthy baby considering how early she was and how fast she came. Through all of this there was so much support and love. It is so amazing to have such a wonderful family, caring ward, and concerned friends. 

I am writing this post because there is one thing that not to many people know of that is also a concern for our Autumn.  Autumn was born with Metopic Craniosynotosis. What is that you ask. Well it is when the frontal bones of the skull fuse together to early causing a triangular effect of the skull, making the forehead pointed and causes a narrowed effect of the sides of the head. Also a ridge forms from the nose up the middle of the skull. 

Here is a picture to illustrate:

 I don't know if anyone has noticed that my lovely daughter's forehead extends forward, or notice the ridge.  As she gets older these abnormalities will get more and more pronounced, causing her to look very deformed. Also, because her frontal bones are fused they will be unable to grow as she grows causing brain restriction. This restriction could be harmful. So, due to this metopic synostosis, Autumn will have to have surgery on her skull in about 5 months. They need her to be bigger and stronger for the surgery. They normally do the surgery when babies are 6 months old, however since she was premature they want to wait till she is at least 8 months old. The surgery is very invasive and she will need extra blood for it. We met with a Plastic Surgeon two days ago, and he reassured us that he does this surgery often enough and hasn't ever had a problem, but it still freaks me out. 

This is a picture a before and after:

 

It just breaks my heart looking at these pictures. I know it is for the best, but it is still so scary. They are going to actually pull her skin down over her face and cut through the bones and then flatten them. Our doctor said babies do pretty good after the surgery. Generally they stay in the ICU for a day and then  in the hospital for 2-3 days and then they can come home without any meds. Seems a little crazy to me, but I am not a doctor. I am amazed that they can do this and I am thankful for competent doctors. 

I know Autumn will be in good hands, but prayers are much appreciated. This surgery most likely won't happen till August. I am glad she is going to be stronger, but I wish we could do it now to get it over with. I am so anxious thinking of my little one going under the knife after all she had been through and being so young. Autumn is definetly a fighter! She is such a strong girl already. I know that she is going to accomplish amazing things in her life, because she has already overcome so much. She is my miracle baby. My rainbow baby after my dark storm. I love my Autumn. She is my everything!

You can see her triangle skull in this picture.

I still think she is the cutest thing ever!!!