The San Diego News did a segment about Cranio Angel Network (started by the mother who informed me on Cranio which led to Baby Girl's diagnosis). A picture of Baby Girl made it on the news and a part of the letter I wrote her. Sheila does great work and makes a difference in many people's lives.
Wow! I can't believe its been over a month! We have been busy with gymnastics and swim lessons the last few weeks. I've even been to the grocery store... aren't you all so proud. hahaha. I never knew "normal life" felt so good. Miss G and Little E have started back to gymnastics and LOVE it! Not surprised at all. If Miss G works really hard this summer we were told that she will be put on TEAM! We are so excited. I'm very proud of her. She loves gymnastics and is ALWAYS practicing at home. Little E finally got up enough nerve to go to her own class. She is so cute in her leotard doing forward rolls and balance beam. I really enjoy watching the two older girls do what they really enjoy.
The girls being silly on July 4th
Baby Girl... is a hand full and I LOVE IT! She wants to be on the ground rolling and scooting but we can't for a few more weeks. She no longer will allow us to swaddle her in a blanket. She still needs to sleep on the back of her head (using a doughnut pillow given by the hospital) but she is now rolling over in the crib. We may have to switch her to a swing until the Dr. gives the okay. Baby Girl is active, energetic and loves to push the boundaries. Honestly, if she would've been the other two girls I would be constantly complaining but now... I get so much joy from her spunky personality. I am just so grateful that she is happy, healthy and full of energy.
Life is good, slowly but surely getting back to normal. I'm exhausted... physically, emotionally and mentally. Baby Girl is back to her happy energetic self. She just isn't doing so well at night. I plan on writing much much more but right now I'm just going to post pictures. She looks great. It truly is a miracle. I honestly can't believe it was just a little over 2 weeks since she had her surgery. It almost feels like it was a million years ago.
*Baby Girl has been sporting this gauzy cap to keep her incision covered.
*Aerial view of Baby Girl's incision.
*She started eating rice cereal this week. She is a pro!
*Don't you love the faces babies make. (We have a towel on her high chair to make sure she doesn't hit her head.)
We finally get to take Baby Girl back home! She made a huge improvement Thursday night to Friday morning. She went from having her left eye half-way open and the right eye open just a sliver to having both eyes wide open and ready to see the world again. The only problem is that now she won’t close her eyes! It is like she is afraid that if she closes her eyes they won’t open again. It is kind of sad to think about. Poor baby closed her eyes on Monday afternoon and then they didn’t open again until Thursday night. Unfortunately, now she won’t go to sleep and I was up with her all Thursday night with her. Then, driving home Friday she only slept for a little over an hour. Her eyes are all red now because she has only slept for about 1 ½ hours in the first 24 hours after she opened both of those pretty little eyes.
Miss G and Little E were so happy to see their little sister when she got home Friday night. They thought she looked a little different but the same. They missed her so much and were grinning from ear to ear to be back together with her.
Yesterday was a rough day for Baby Girl. The nurse we had was having a hard time keeping the medications on the right schedule and Baby Girl just didn’t seem comfortable at all. We finally had a nurse come in the evening and tell us we could try laying her on her side and she tipped her on her side and Baby Girl found instant comfort and was able to sleep through the night. She just seemed to be tired of lying on her back for so long and needed to switch positions.
Baby Girl had her head dressing removed this morning! She looks so different now. The swelling still hasn’t gone down so it is hard to recognize her little face, but she is much happier now that her head can feel the air on it again. There was a tube that was in her head that was draining excess fluid that was also removed this morning. All she has left stuck in her is one IV in her hand and they are going to stop all of her IV fluids now since she is starting to eat better.
She has always enjoyed bath time and she had her first bath at noon today. As soon as she hit the water she was soothed and we could see that she was enjoying sitting in the warm water.
There is still a lot of fluid in her head. She weighs 1.25 lbs. more now than when she came in on Monday. All of that weight, if not more, is just fluid, and most of it in her head.
After almost 48 hours since exiting surgery, Baby Girl is still being a trooper! The swelling should be peaking and be on its way back down at anytime now. She had a pretty good night last night and slept a little, at least from what we can tell. She hasn’t been able to open her eyes for almost two days now. That is one of the hardest things to think about right now. Just knowing that our little baby wakes up from being asleep and can’t see anything, it must be so scary for her! At least she knows our voices and how we feel. She likes to hold our hands and yesterday while Scott was holding her she kept on sticking her fingers in his mouth which is something she has always done.
Baby Girl has had a little bit of a fever for the past two days, but it is nothing out of the ordinary. We have been staying on top of the Tylenol with codeine and the Nubain to help her tolerate the pain and discomfort. Her sodium levels were a little low right after surgery (low sodium levels could be an indication of swelling in the brain). The normal range is 135-145 and her number was 132, it is back to 135! The doctors have been impressed with the way she is recovering. They have seen worse swelling and she has only thrown up once.
Thank you again for all of your thoughts and prayers and know that each one of them is felt and goes a long way!
After 24 hours in the Pediatric ICU, Claire got to move to the recovery floor of the hospital where she will be for the next 3 or 4 days until we go home. They have been telling us the day after surgery is much harder on the kids than surgery day. So far they are right. She hasn’t been very comfortable and hasn’t eaten like she did yesterday and last night. Her swelling is still getting worse as they said it would for 48 hours after surgery. The surgeon saw her this morning and had to cut her little head dressing because it was a little too tight for her. We have been in the recovery room for about three hours and she is finally resting a little, hopefully it stays that way for a while.
The plastic surgeon came in at 1:00 pm and told us that everything went well and that she is on her way to the PICU. We will be able to see her in about 30 minutes. He said that there were no complications at all and that things went as smoothly as possible. Luckily most of the nerves in her head will be numb due to the trauma for about three weeks so she won’t have much pain on the top of her head, it will just feel strange to her. The swelling will increase for about three days and then start going back down.
Everything went as well as we could have hoped for. Thank you for all of your fasting, thoughts, and prayers! We could definitely feel a peace in our hearts throughout the surgery.
In the middle of writing this we got the call to see our little girl. She looks different, but that was to be expected. It is hard to see your child hooked up to all those tubes, but it will be for the best. She is still asleep, but making her familiar noises. We love this little girl! She is so lucky to have everyone supporting her.
Just received an update from the neurosurgeon, everything is going well. He said as they removed the skull from the head there were not any nicks or tears in the dura (the skin between the brain and the skull) which is really good news. Her bones are a little underdeveloped for her age which is not uncommon. This might actually make it easier for the plastic surgeon to mold them into the proper shape. As they were stretching out the bones in the face so that she does not have a mushroom shaped head, there was a little nick in a vein on the back of the head and they were able to stop it immediately and there is no problem.She has received a blood transfusion because of her blood loss during the surgery.
The scariest part is now over, but we still have to wait to see her, which is not easy. They are working on putting the skull back together now. Once they are done with that they will let us know but it will still be a while before we can see her.
Thank you for your continued support, we can definitely feel it!
Baby Girl was taken back to surgery earlier this morning. We just got a call from the nurse and she said everything looks great. They should be out of surgery this afternoon. I will continue to update as we go. Thank you to all who are fasting and praying for our family. We feel it!
The 2 older girls went to my sister's house yesterday... happy, excited and I think a little worried. We took family pictures yesterday. Baby Girl looked like an angel. I will post pictures when we get them.
I'm feeling quite emotional today. I guess that is to be expected. We are heading to the hospital. Feeling blessed with such wonderful family and friends. Thank you for helping lift our burden. Thank goodness for parents. Thank goodness for Heavenly Father. Please pray for our little one.
We will be fasting for our Baby Girl before her surgery. We would love for everyone who would like to participate to join the fast.
The fast begins Sunday (May 22nd) at 4:00pm and ends Monday (May 23rd) at 1:00pm.
We are incredibly grateful to everyone who has prayed and fasted in behalf of our little one. We go into this knowing that Heavenly Father loves us and is watching over our baby. We will be updating as much as possible.
Mark 9:29 And he said unto them, This kind can come forth by nothing, but by prayer and fasting.
Baby Girl has started to whimper any time she sees a nurse... it is so sad. When she receives her Procrit shot each Monday the nurse has to prick her heel to take a blood draw. The blood draw is incredibly difficult on a 5 month old. Yesterday she got her heel pricked twice and then the nurse had to fill a vile with blood to check her red blood cell count. The blood clotted so quickly that they couldn't run the test on it by the time the viles reached the lab.
So this morning we had to go into a lab to have her blood taken with a needle out of a vein in her arm. When the nurse said hello to her, she started to whimper and stick her bottom lip out. It was pitiful. It should be interesting when she is taken back for surgery.
Even though her blood has been clotting fast she still needed another Procrit shot. To be honest the blood draw is harder than the shot. By the time she was done she was very tired. I'm glad we are done with this part.
* Sorry, but this picture just made me laugh. This captures our true Miss G. The girls spend all day every day dressing up. Just had to show a picture of our day to day lives with these sweet, silly girls.
play set up
today was a good day!
*Trying to figure out what to take to the hospital for Baby Girl and fam. If you have any experience with this please give your tips. I also want to bring things that will make the stay a little easier (ie. pictures, signs to put on or around her bed). Would love some opinions!
We are a little over a week away from Baby Girl's surgery. Life has been pretty interesting. She started her procrit shots two weeks ago. She has been full of ENERGY and HUNGRY! She is getting up at night about every 2 hours and wants to eat all the time. I've been a walking zombie but happy because she is gaining weight and getting stronger. She really is a ball of energy.
*Yes, we finally can play outside! Look how big she is getting!!
Emotions are running a little high. I really think its the waiting and knowing what is about to come. We are spending as much time as possible holding and playing with our beautiful, happy little girl.
So surgery came and went. Do you want to know the two hardest moments...
1. Watching Scott hand over our Little E to the nurse in scrubs and mask on her face and hearing her scream all the way back until they were able to put a mask on her face to put her to sleep. Knowing how scared the little munchkin was and not being able to do a thing about it.
2. Seeing a sleepy, out of it little girl who was just a little swollen and a touch of blood on her face be brought back to our room after her surgery. So vulnerable so helpless.
Honestly, I think we needed to experience this so that we could prepare ourselves for Baby Girl's much more intense, risky and scary surgery in a few weeks.
My faith is being stretched and my heart feels like it might rip sometimes... I know its just being taught how to trust in Heavenly Father and His plan. My babies are his babies. He loves them more than I do. He will do what needs to be done. He will protect them the way they need to be protected.
Little E did great. She had a few moments of not wanting ice cream, popsicles or pudding and only want SALAD. She was down for a few days but after switching her medicine to tylenol/motrin from the narcotic she was right back to herself. Now she sounds a little bit like a really loud cartoon character. The Dr. said she won the largest tonsils/adenoids of the day.
*Isn't this wheelchair the cutest thing you've ever seen
Our Little E... it seems that every so often she has a health issue that goes undetected by the pediatrician and is somehow discovered by Mom or Dad (this is the "straw that broke the camel's back" we will be looking for a new pediatrician). Our Little E snored and when I say snored I mean it sounded like a freight train was going through her room. Thank goodness Miss G sleeps through anything and wasn't disturbed by this. I knew her tonsils were on the big side but always thought a child had to have strep throat a lot before having them taken out. We went to the ENT last Friday because she was complaining when she ate certain food that it hurt her throat and she was snoring. I really just wanted to see what they would say... maybe keep an eye on them or maybe just maybe not to worry it all looks normal.
The ENT looked in her ears, nose and throat... hahaha of course and did the all too telling, clearing of the throat. He asked does she snore, does she have sleep apnea, has she had strep throat a lot??
My answers 1. Yes 2. Not a clue. She is a light sleeper. 3. Never ever had strep throat.
He told me that they rate the size of tonsils on a scale from 0 to 4. 0 = No Tonsils and 4 = Tonsils so large they touch. Yes, I'm sure you guessed it Little E's were a whopping 4. He said they were so large they were touching and obstructing her airway. He also said that they have bacteria all over them. He said they take tonsils out for one of two reasons:
1. 4-6 Strep throats a year
He said that she had both issues. Even though she hasn't had strep throat the amount of bacteria on the tonsils qualified her for both reasons. The ENT said sometimes you get a very stoic child who doesn't complain but they are IN PAIN. Not something Mothers want to hear. The poor baby was hurting and I didn't even know.
So she is heading in for surgery tomorrow. What's the saying... When it rains it pours. Isn't this a GREAT way to start out our quarantine for Baby Girl's surgery.
To make the trip a little fun, we bought her all the yummy goodies she gets to eat and a cute pair of pjs that comes with a tutu. She was quite excited. Miss G was a little envious.
Miss G was up around 6am... I LOVE that sleepy face!!
And this face...
And we can't forget this Little ONE!!
They fill my life with such sweet joy!
We have started our "quarantine" just to find out that Little E will need to have surgery this week to have her tonsils and adenoids taken out. Is this our new normal? Sometimes I feel like I'm looking around and don't recognize my life anymore. I will give more details tomorrow. Our poor Little E... it just breaks my heart.
We will be praying for angels to come to our Baby Girl too!
P.S. I know that I haven't written very much lately. I promise I am back and will be much better at updating! We are, now, starting our quarantine. Baby Girl starts her procrit shots on Monday. This is really happening... not sure how I feel about that.
So we got up early and all got dressed just in case the Pediatric Ophthalmologist (about a hour away) wanted us to come in as soon as possible. I called as soon as they opened just to find out that he was in surgery all day. Okay... so what do we do now? I spoke with his receptionist who was very helpful and gave me information of an ophthalmologist in the area who had the correct tools to do an exam on a 3 month old.
We got an appointment later in the day to see the other ophthalmologist (only 30 minutes away). He checked the pressures in Baby Girl's eyes, dilated her eyes and checked her optic nerve. Everything looked great! Whew! He said probably what happened is her finger or hand hit her eye and caused a small bruise between the clear layer that covers the entire eye and the white of her eye. He said it is very common and not a problem.
Since we were there and her eyes were already dilated he decided to check her eyesight. Turns out that she is farsighted just like our Little E. Little E is happy (you can't wipe the grin off her face). She is so proud that her baby sister will be just like her. Miss G is not so happy because she is the ONLY sister without glasses. hahaha. Don't you love sisters, always wanting what the other has. Though as a parent, this hurts my heart. It doesn't look like it will phase our little one much. I am just so happy that we were able to catch this so early. They want to see Baby Girl in 6 months to see how everything is looking. We probably will get glasses for her when she is around 9 months. It amazes me how much they can know about a 3 month old's vision.
Though it was quite the day I learned something... this is a rollercoaster ride and I need to be better about hanging on. We are just at the beginning of this ride and yet I'm making myself sick over everything. I truly believe that whatever happens Baby Girl will be okay (of course I have moments of weakness). Yesterday, I was okay as long as I didn't focus on her eye. Anytime I saw the little red spot on her eye my heart would drop. It made me feel so sad that I felt sick. I learned really quickly yesterday that if I wasn't in continual prayer I wouldn't make it through the day. It's only going to get harder from here. She will always have a reminder (scar on head) of her surgery and pain. I am going to have to learn how to not allow it to consume me, as her mother, because she needs me for her strength. I can't even begin to understand what Heavenly Father must have felt while watching Christ suffer on the Cross.
Today has been a hard day. Baby Girl woke up with a broken blood vessel in her eye. It could be as simple as she poked herself in the eye to possible cranial pressure. I will be up early tomorrow trying to find a pediatric opthamologist who will see us as soon as possible. I have faith but my heart does ache tonight.
On a lighter note, it was sweet music to my ears when Baby Girl belly laughed at her two big sisters tonight before bed. She is such a happy baby.
What is so motivating about someone counting down from 5? I honestly don't know but for some reason Miss G moves as fast as possible to do whatever is asked. Usual conversation:
Me: "Miss G will you go get me a diaper for Baby Girl."
Miss G: "Not right now Im drawing"
Miss G: (nothing)
Miss G runs as fast as she can to get the diaper.
Me: "Miss G and Little E go get your socks on."
Miss G and Little E say nothing
Me: "Who will get their socks on the fastest?"
Miss G and Little E start running as fast as they possibly can to get their socks on first.
I don't know why counting or making it a contest works but no one is complaining in this house. hahaha
So I have a pretty big tub of cottage cheese sitting in my fridge. It will expire in a little less than a month. I'm still trying to lose this baby weight... yes the baby hasn't been in here for 3 months but for some reason these hips and stomach are not back down to prebaby size (so annoying don't get me started on the joys of losing baby weight). Okay so I'm trying to find good healthy recipes to use with this cottage cheese.
My first stop GOOGLE. Am I the only one who goes straight to google with any random question that comes up at my house. It seriously is a life savor! My sister and I were just discussing how it would be to have to buy the updated version of the encyclopedias. Ya kid go look it up in the good ole' encyclopedias. I mean I had to walk to school in the snow up hill both ways (kind of thing). haha Okay sorry to get off on that tangent.
I came across a yummy recipe for cottage cheese pancakes. Instead of syrup we put yogurt and bananas on top.
Its Friday morning and we have to be at the Dr. office by 8:30am. Dr. M (craniofacial surgeon) does clinics in our area, so we didn't have to travel hours away this time. Thank goodness. We were all dressed and walking out the door by 7:45am. I actually drove Miss G to the bus stop and waved good bye (which later I was told that it embarrassed her that I stayed at the bus stop... and so it begins, hahaha). I pretty much knew what I wanted to ask him but jotted down each question to make sure I didn't forget anything.
1. What are the side effects of Procrit? Procit is a drug that is usually used with patients who have cancer because their red blood cell count is low. They use this drug long term and there are some side effects when used like this. Baby Girl will only use it for 3 weeks and he has never seen any side effects used short term.
2. Will he work on her forehead? He said he will tilt her forehead back a little.
3. Do I need to start feeding her every 2 hours? Yes, we need to do anything that we can to raise her body weight. More weight = More Blood (the stronger her little body is)
4. If people donated blood at the hospital, where she is having her surgery, would we get a credit on our account? I've heard that some hospitals will credit your account (if you need a blood transfusion) if other people donate blood at their hospital and give them your name. Baby Girl's hospital doesn't do blood donations, therefore; will not credit accounts of patients. They use an outside blood bank.
5. Direct blood donation from a parent? If a parent gave a direct blood donation to their child, later in life they could not donate an organ to that child because the child's body builds up antibodies against parts of the parent's blood. Also when a direct donation is given the blood doesn't go through the same process as banked blood possibly causing a step to be missed. Usually the parent's blood isn't as good as a match as blood bank blood.
These are just a few things we discussed during our appointment. On a lighter note, as Dr. M was discussing everything with us he would stop and look at Little E for a moment then continue on with what he was saying. He did this a few times. Right before he left, he asked "Is she always like this?" (pointing to Little E). We laughed and said yes. He, then, said, "She is like a little woman." hahahaha. She had been sitting on a smaller chair in the office and been quietly and attentively listening to everything that he had to say. We agreed with him. Here is this very educated, polished plastic surgeon and he was taken back by our Little E. She is quite the character that keeps us giggling throughout the day.
I was so nervous getting prepared for this appointment but while we were there and afterward I felt completely at ease. I hope this feeling stays.
We have Baby Girl's last appointment before surgery with our Cranio-facial team tomorrow. So I am trying to get prepared, by writing out all my questions that I have had, so we walk away from the appointment feeling confident. I think a new set of butterflies just landed in my stomach.
Guess who is rolling over from back to tummy... yep! Baby Girl is rolling over to her tummy. If only she could figure out how to move her arm from underneath her tummy. She no longer will just lay there. She grunts, wiggles, pushes her head into the ground and pretty much anything else to get her little body to roll. Honestly I just tell her to please relax. haha. I'm quite the motivating Mommy, aren't I. (I think its Heavenly Father's tender mercies... I really don't worry about her developmentally. She has already surpassed her big sisters.)
In the background, Little E is walking around the house singing "J*I*N*G*O and Bingo was his name oooooo". :) I have tried correcting her and she was amazed that I knew the song. She asked "Where did you learn that?" I told her from my mommy. She looked at me kind of crazy and said "Did she watch Barney too?" haha. Then she ran off to sing J*I*N*G*O again. Oh well. I kind of like that version better anyway.
Miss G has picture day today. She was excited and had the perfect hair in mind for her pictures. She wanted curls all over her head. Hum, yeah that meant getting up earlier to make sure it was curled and in place. She left with her light up Twinkle Toes on and everything. We shall see how it all turns out. Keeping fingers crossed. (Just in case you were wondering... yes I omitted the fall out from last night that she had from not getting to wear what she wanted.)
Miss G. The oldest sister. Miss G is my right hand woman. She helps with everything around the house. She is becoming so old. There has been a transition going on with her. She is still young and likes to watch cartoons, play house and run around but I've started to notice a change. She likes to sing and dance. Miss G likes to watch the baby cousins instead of playing pretend with the toddlers. She is the oldest grandchild on both sides of the family. In the past, she would be the ring leader and start up games or pretend fun. Now Miss G likes to "babysit" (meaning watch the younger cousins while their Moms talk).
Miss G LOVES gymnastics. When I say LOVE it really is an understatement. She lives and breathes gymnastics. She is always doing some kind of move that she learned in class at home. Miss G is actually really good at it and that always excites me because I enjoyed the same thing growing up.
I am in awe at my Miss G. She is smart, kind and loving. When she realizes that she made a bad decision she is quick to apologize and give hugs and kisses(sometimes it takes a little while before she actually realizes that mistake). She is still so innocent. I absolutely LOVE that! She understands that she is the oldest so she always is asking me if something is "age appropriate" for her sisters or younger cousins. The other day she was talking about her hair and said "It looks like the "s" word". I asked her what the "s" word was and she whispered in my ear "stupid". Thank goodness that is the "s" word! She is good to the core. She reminds me of my older sister, "Aunt Silly" (I will explain why she is called Aunt Silly in another post.) I hope that she doesn't change. Little E and Baby Girl are so lucky to have such a big sister. Miss G is my heart.
Did you know the Navajo Indians throw a party for their baby's first laugh? It's called "The Laughing Party". I guess they surround the baby and try to make him/her laugh. Whoever can make the baby laugh, first, will have a significant role in their life.
I can see why the Navajo Indians throw a party. Baby Girl just laughed for the first time tonight. Miss G won the battle. There is pure joy in a baby's laugh!
Some days Cranio can be all too consuming. I went on Craniokids.org today to see if there were any posts that related to Baby Girl that may help us or where I could help them. I came across a few posts of teenagers/adults with untreated Saggital Cranio. I was hooked. I couldn't stop reading their posts and jumping from one group to another in hopes to see a picture. Now I really just feel completely drained.
I have to make sure I don't get too obsessed. Its so easy to obsess about her future. Will the surgery work? Will she need more surgeries? Will her head look nice and round when she is an adult? Will her eyesight be damaged? Will her hearing be damaged? Will she be delayed developmentally? Will she be teased and have poor self esteem because of this? Will she be happy?
Right now Baby Girl is happy, ahead of schedule and absolutely perfect. I don't want to do anything that will change that. Yet, if we do nothing it could change everything. Its such a hard situation to be in. No parent wants to cause any type of pain to come upon their child yet if we do nothing it could harm her the rest of her life.
Choices. These are all the feelings I feel right now, tonight. I know what needs to be done and we will go through with it. I just love her so much. She is my heart. All I can do is pray for the strength to help her through this trial right now. Oh, how I pray that I will be strong enough.
Our Little E... she is our daughter that loves to mother. As a baby, she usually had some type of health issue going on from asthma, reflux or her bad vision. I worried about her because she just seemed so fragile. She loves babies, dolls, strollers and everything that has to do with being a mother. Little E constantly has a baby on her hip and pushing the stroller with one hand. She loves Baby Girl and being her big sister! She is constantly correcting Scott, Miss G and me on how we are handling Baby Girl. hahaha
One day she told me "Mommy, you sure are my special helper". In that child's mind, she runs the show and we are all to obey her. She makes mothering a joy. She is my little buddy. Little E has most people wrapped around her little finger.
I don't get to go to church very often because its winter and Dr. P (our pediatrician) told us to keep Baby Girl out of areas where lots of people are to avoid catching any type of cold or flu until April. Scott used to work with the youth (he had to teach on Sunday) so that meant I stayed home while he took our other two girls to church. I had the opportunity to go today with Scott and our older two girls while, my sister, Audrey watched Baby Girl.
One thing I never noticed before that I notice now are babies' heads: the size, shape, amount of hair, any ridges... I'm going crazy. Its all I can do to keep myself from kissing each and every baby I see and tell every parent to be thankful for that sweet, round noggin.
This is a picture of Little E when she was just a few months old.
Its early in the morning and I haven't gotten much sleep between the late night feedings and diaper changes. I'm tired and wishing I could pull the covers over my head when I hear a little squeal and little feet kicking the crib mattress. Baby Girl is wrapped up like a little caterpillar in a blanket and is eager to greet the day. The minute she sees my face lean over the crib she does the largest grin her little face will allow. I LOVE having a baby in the house again. Nothing is sweeter than seeing a baby "light up" when they see their mother's face first thing in the morning. Priceless!
I grew up in a family with 6 kids: 3 boys 3 girls... we were our very own Brady Bunch. I always had someone to play with. I was happy to be apart of such a large family. I always wanted us to be together forever. As I grew up I knew I wanted children, maybe not 6 but at least 3 or 4.
During our newlywed stage of marriage we had a picture perfect plan of our future family: 2 boys and 2 girls. Each would have a best friend. So naturally when we had Miss G and Little E, we thought okay now its time for our boys. When we found out we were having another little girl, we were surprised to say the least.
Sisters. I believe is the truest form of friendship. I have two sisters. One older. One younger. Through the years we have laughed, cried, fought and hugged. Drama, yes. Loved, yes. I have gained many friends and lost touch with many friends over the years but my sisters have always been by my side. That doesn't mean that we always get along or agree but we are there to pull one another at different times in our lives.
When we found out that Baby Girl was another little girl we were thrilled. Three girls. Could you get anymore perfect for our family. She fits right in. Pink, babies, strollers, purses, barbies, painted nails, hair bows, high heels... I think Heavenly Father knew a boy wouldn't survive. :)
Scott (who I might add is all boy) said it best as he was driving down the road one day. He realized that he was thirsty and grabbed a bottle of water. After he drank the bottle of water in one gulp he said out loud to himself, "Whew, I was a thirsty girl." hahaha. By far my favorite phrase to come out of that boy's mouth. I sure do love him!
*Just a little note. I really have the best brothers too! They are my best friends and are always there to help in anyway possible.
My sister, Aud, is a wonderful photographer! She is seriously talented. Audrey took some newborn pictures of baby girl. Here are a few:
Question: How do all the professional photographers take all those naked pictures of babies and not end up with poop on everything. Baby Girl peed and pooped on like 4 blankets during our photo shoot. It was great fun. haha.
Scott and I were left with the difficult decision of which surgery we wanted Baby Girl to go through. After much thought and prayer, I knew that we needed to speak to other parents who had gone through the same thing. Avery's Angels' had directed us to a website called Craniokids.org. Parents of children who have craniosynostosis go to that website and chat with each other. They discuss day to day life, how surgeries have gone and what Dr.s are the best. Its a great source of information. Dr. M's (craniofacial surgeon) office had called a few of their patients' parents to call or email us to talk to us about their experiences. I literally spoke to parents from all over the world. I heard about what procedures they chose, why and their outcomes. It was such a comfort to be speaking to all of the wonderful individuals.
After the diagnosis, I posted what was going on in our family on facebook. The response was overwhelming! I received an email from an acquaintance from high school who had just gone through the same thing with her son a few years ago. Its amazes me how Heavenly Father works. He puts individuals into your life and you go about being friendly to one another then something happens and there is a connection. She has been a huge blessing to me through all of this.
We finally decided after all of our praying and research that the CVR is the best option for our Baby Girl. We feel at peace with this decision and know this is the right direction we need to go in. I nervously called Dr. M's office and scheduled her surgery (that was a difficult phone call). The surgery is set for May. So what does that mean for us right now:
1. Weekly shots (procrit: a red blood cell booster) starting in April and continuing until the surgery.
2. Keeping her quarantined until July.
3. Check-ups with Pediatrician and Craniofacial Surgeons.
4. Fattening her up so her weight is where it needs to be.
We will start keeping everyone quarantined in April through June. Miss G and Scott will be the only ones allowed to go to school, work and church (and showering as soon as they come home). We do not want Baby Girl to get sick at all because she needs to be her healthiest going into surgery. This will be hard but sometimes you just have to do what you have to.
*You will want to turn off the music on the bottom of the page before playing the video.
Sheila is the mother who posted on BabyCenter about early detection of Craniosynostosis. I wrote her this letter a few days after reading her post just after Baby Girl had received her diagnosis. Sheila is the owner of the Non-Profit Organization Avery's Angels. She put my letter to music and has it on her website. She sends headbands to the girls and do rags to the boys who have been diagnosised with Craniosynostosis. She is a great example to me and has helped me throughout this entire process.
Our other option was the CVR "Cranial Vault Reconstruction". This surgery is at least 6 hours long. She would most likely need a blood transfusion. This will get pretty graphic. What they would do is make an incision from ear to ear (the entire length of a headband). They would open her scalp completely, remove her skull and reform it on a table in the operating room. As they reform her skull they would cut open some areas, put plates and screws to connect other areas. They, then, would put her skull back over to protect her brain and close the incision. Intense SLIGHTLY!
We honestly didn't have a clue what we wanted to do. Both surgeries were equally dangerous. We went home and started praying about what decision was best for our little one.
The Specialists' offices were hours away from our home so we decided to take the Little E and Baby Girl, our two youngest daughters, with us and leave Miss G (our oldest daughter) with Aunt Aud and Uncle Geoffery so she could go to school while we were gone. The appt. was 8am so we decided to get a hotel room close by. My mother came with us as a moral support and to help us with any questions that may arise.
I woke up a 6am with a knot in my stomach. I knew that today was going to be hard, no matter how much preparation I had done. Why is it when we have to face reality head on it sometimes leaves you feeling numb? I was glad that my Mom had come with us. She is such a strength to me and has a way of helping me do what needs to be done. We were all in the car by 7:30am driving to the children's hospital where our Craniofacial Surgical team's offices were. I start to jot down all the questions that we had for the surgeons.
Why didn't I have the list ready? I asked myself the same question in the car as I was writing them down. I don't think that I could stomach writing out the list until the very last second because it made all of this WAY TOO REAL. All I really wanted to do is lean out of the car window and throw up.
We found the offices, signed in and sat down in the waiting room. As I sat there, I looked around at all the other children's heads and wondered why they were there: for the same reason, had something else happened, would my daughter grow up and be as beautiful as that little girl. We were one of the first patients to be taken back to the plastic surgeon's office.
Dr. M (plastic surgeon) and his team walked in the room and examined Baby Girl's head. He took measurements and agreed that she does have sagittal craniosynostosis. He handed me a binder with the information that I would need on her condition. He and I discussed our options.
Endoscopic vs Cranial Vault Reconstruction
I had done so much research that I knew most of the information that he gave us. It was comforting to not have any surprises. Once he met with us they had us meet with her Neurosurgeon, Dr. R. When Dr. R came into the room we all were taken back a bit because he was so young. No one expects a Neurosurgeon to be young.
I learned something about Scott and myself that day. I talk things out. I study, listen and talk (a lot). I was surprised because it didn't seem that Scott asked many questions while we were in the office. Actually it kind of made me mad until we got in the car and Scott told me everything he had observed. I was so busy discussing everything with the Dr.s that I didn't have time to observe them and our surroundings. Scott was so busy observing that he didn't have time to ask the questions. Alone he and I both would be in trouble... but together we make a GREAT team!
We left their offices realizing we had a very important decision ahead of us. The Dr.s wouldn't tell us what they preferred they wanted us to make the difficult decision of what type of surgery they would perform on our Baby Girl.
I called the Pediatrician's office and made an appointment for the next day. As I walked into the pediatrician's office there was a much different feeling then I have ever felt. The nurse was kinder and quickly took measurements of her head, weighed her and left to get the Dr. As Dr. P, our pediatrician, walked in he calmly walked over to Baby Girl and felt her head, looked at measurements and then cleared his throat. He said that we would need to do a CT SCAN that she could quite possibly have sagittal craniosynostosis. If left untreated, her head would grow front to back but not side to side because the sides had fused. I started to cry. I knew this is what she had. I already had done all the research and understood what this meant for our little girl. Dr. P looked over at me and said "No tears. Let's take this one step at a time." I wiped the tears away and agreed.
We left the office and started to drive home when I got a call from the Dr. office. They got us in for a CT SCAN that day and we were to go straight to the hospital.
Honestly, I felt like I was in a daze. As I sat down and started to sign all the paperwork, I couldn't believe that I was here with my 3 week old baby who was about to have a CT SCAN of her little head. Because of the time of year, we were keeping her at home as much as possible and here I was with her in the hospital. Agh, so much for avoiding germs. I was able to lay her on the table and help the tech wrap her in blankets and strap her to the table. Luckily the little angel was asleep and didn't move at all. The tech then sent me out in the hallway to stand by the door. Scott and the girls were waiting in a room they had put us in earlier watching TV (thank goodness for Disney). As I stood there people kept walking in and out of the room smiling and patting me on my shoulder telling me everything is going to be okay. There is no telling the expression on my face. As quickly as they took her in she was done. Scott and I both thought, "Okay, this wasn't too bad... We can handle this..."
I got a phone call that evening from the Pediatrician and his nurse, "her skull has started to fuse. She has Craniosynostosis and we are sending you to a specialist this week." I already knew that she did. It wasn't much of a surprise. I started to realize that the dull ache in the pit of my stomach wasn't going to leave for quite a while. This is when I bowed my head to thank Heavenly Father for being aware of us and sending the right people to help Baby Girl. And of course prayed that this wasn't really happening to us even though I was well aware we were already right in the middle of this bad dream.
I kept waiting for Baby Girl's head to round out, like they always tell you it will. I noticed that she never laid with her head straight back. She always laid with her head to the side. Hum, odd but really not that big of a deal. I am a pretty OCD mother. I know that and most of the time can acknowledge that fact. I watch and analyze everything ad nauseum. Just ask my husband, it drives him CRAZY! :)
I had Scott keep the other girls home while I took Baby Girl to the Dr.'s office for her check up. I was meeting with the PA because I was late for an earlier appointment with the Dr. (the snow helped with that). He gave Baby Girl the thumbs up on everything. I nervously asked him about her head. I was worried because it looked long and narrow compared to most babies heads. He felt around on her head, laughed and said "If we shaved 100 adult heads and you looked down on them, you would see all sizes and shapes. There is no need to worry". Okay, that made me feel much better but I still had that nagging feeling.
A few days had passed and I started to notice a ridge on her head. It ran from the middle of her head to the back. I just made a mental note and tried not to worry. Remember when I said I was OCD. Yeah, this is what I mean. One night I sat down at the computer and got on the Babycenter website. I was a member of the December 2010 birth board where I would write with other mothers who delivered babies that month. I came across a post written that had the words "Symptoms of Craniosynostosis". I didn't know what it meant but I clicked on the title. A wonderful woman had written about early detection of Craniosysnostosis.
Craniosynostosis, “Cranio" refers to Cranium: The upper portion of the skull. "Syn" to together, “ostosis” to the genesis of bone.
Craniosynostosis is a condition in which one or more of the fibrous sutures in an infant skull prematurely fuses by ossification, thereby changing the growth pattern of the skull. Because the skull cannot expand perpendicular to the fused suture, it compensates by growing more in the direction perpendicular to the open sutures. The resulting growth pattern provides the necessary space for the growing brain, but results in an abnormal head shape and sometimes abnormal facial features. In cases in which the compensation does not effectively provide enough space for the growing brain, craniosynostosis results in increased intracranial pressure leading possibly to visual impairment or an impairment of mental development combined with a significant reduction in IQ.
Craniosynostosis is part of a syndrome in 15 to 40% of the patients, but it usually occurs as an isolated condition.
One of the symptoms is a ridge on the skull. When I read this I lost it. I knew this was what she had. Because I'm very aware that I overreact about things I tried to stay calm as I googled as much as I could on the subject. Then I took what information I had to Scott. He could tell I was worried and read what information I had on the subject. That's when he agreed that we should call the Dr.
It was 1:45 in the afternoon on December 6th. Dr. L sent me and my hubby over to the hospital to tell the nurses I was in "labor". I had been having labor contractions for days that led to nothing at all. I was tired and ready to have this stubborn little girl. I felt kind of guilty telling L&D nurses that I was in active labor when I wasn't technically in labor so I told them I was having contractions (which was true) and that Dr. L told me to come over and tell them I was in labor (which was true). haha. I didn't want them mad at me before I even got in the door.
One of the nurses took me to a room that was at the end of the hallway right beside all the construction that was being done. Yeah for me. Blah. I thought how in the world was I going to go through natural childbirth with that right there. But, I got a room and I wasn't going to complain.
After a few hours of kind of pretending the contractions hurt they started to stay in a pattern and actually had some real pain behind them. Hum, maybe Dr. L knew what he was talking about. By 5pm I was in active labor. My Mom got there and Aunt Aud was on her way. Things were looking good! My two other daughters were with Papa living it up going to the movies and McDonald's. They were thinking life was good!!
This was the first time that I was not induced. I've always heard that induced labor pains are harder than starting natural. Unfortunately that didn't hold true for me. Turns out that this little lady was going to make quite the entrance into this world.
By 7:45 my water broke on its own and I was at a 4. Contractions were on top of each other. I didn't have time to breath through the contractions. By 8:00pm I wanted to push and Dr. L wasn't there. The nurse decided to check me and I was at a 10. Actually she felt Baby Girl's face. Um, yeah you read that correctly she was face up chin first. All babies that present this way are always a c-section. She called Dr. L right there and told him to come "NOW". By 8:15pm my body didn't care if he was there or not Baby Girl was going to be born. Dr. L had about a second to catch her. That's when I first noticed her odd shaped head. Everyone including the Dr.s chalked it up to how she was delivered. No one said anything.