This has not gone the way we had hoped and expected. Avery is not getting acclimated to his helmet as most little ones who have to wear one do. So it's a slow process. Apparently this is very rare. And somewhat frustrating. When all you want to do is be able to make your baby "better".  Add this to the overwhelming sadness I'm feeling today. For not knowing how long it is that he will take to get "used" to it. To worrying about if he is going to be uncomfortable during sleep. And sad for all of the soft and sweet baby head snuggles I will be missing out on. But then I take a step back, breath, and think about it all. How blessed I truly am to have three beautiful babies. And how, it could be worse. So, I will suck it up. Deal with it. Cherish that one hour I will have. Find other ways to closely snuggle him. And stick with it, until he is fully acclimated.

 The orthodist got us in last week fast, when we called her with concerns. The band was leaving marks on Avery's head and he was hysterical. She had us keep it off of him. She did some adjustments, and he has been doing alot better. We have been able to have him in it, for a total of three hours so far. It may not sound like much, but it's progress.

 I was lucky enough to find an amazing support group, full of a bunch of awesome momma's whose little ones have been, or are going through the same thing as Avery. It's a relief to be able to have people to go to to ask my questions, share my concerns, and everything else.


Here's the shape of little man's head BEFORE. I don't have the top view yet,but will share when I do.

 

 

Even now, there has been a big improvment from when he was first diagnosed, to now. WITHOUT the helmet.

An OFFICAL diagnosis.

 Avery was originally thought to have Craniosynostosis.  This was when he was seven weeks old. Talk about a HUGE relief once the neurosurgeon told us that this was NOT the case. I cried with joy that my sweet little baby would NOT need to undergo such a serious and scary surgery. He is perfect. But I couldn't shake the feeling that I KNEW something wasnt exactly as it "should be." So, back to the pedi for some more measurments and physical exam. And another, new diagnosis. Plagiocephaly. I had heard of Craniosynostosis. She reffered us to Hanger Clinic Orthodists. Where his Ortho, Kathy officially diagnosed him with Brachyephaly. Brachyephaly is where The head flattens uniformly, causing a wider and shorter shape. She decided that is would be beneficial if Avery were to get a cranial Band. (helmet) Hangers website describes it in this way:
 The cranial band applies steady, even pressure over the areas of the skull that are most prominent. Opposite of this, the band has open areas where the flattened section of the skull can grow. The design of the orthosis is to direct the natural growth of the skull towards a more symmetrical and/or proportional shape.

Before we got the helmet. I was thinking "Bring it on, We got this with no problem". This changed the moment we walked into the office yesterday to pick it up. I felt queasy. And in the room, I started to cry the minute she brought it out. I felt stupid. As, I know it can be so so much worse. I sucked up the tears and started asking my questions. How long do you expect him to wear it for? Something she couldnt answer. Whats the difference between the doc band, the star band, and yours? Well, she basically told me that this is just "their brand." That they have seen nothing but amazing results with this. That they handle every aspect of it. From his care and appointments, to the scans, to the making the helmet. It's all the same specially trained company.

 So, she shows us how to put the helmet on him. At first, he was just annoyed by it. But then he began to hate it. He screamed and cried like I have NEVER seen him do. And I just sat there dumbfounded feeling completely helpless and I tried to soothe him. He did this for both hours he wore his helmet yesterday. This morning we made it to an hour and a half with no crying the first time he wore it! He currently has it on for the second time today, and it will be on for two hours total and no crying! I am SO proud of him.

What I'm going to miss the most is the close snuggles with his head into my chest or my neck. And smelling the sweet smell of his baby shampoo in his hair. I know more than ever I am going to cherish the one hour a day that he can have it off and snuggle him like no tomorrow. His daddy's exact words were "I always give you crap about coddling the kids too much. But go ahead and coddle him as much as you want right now." AND, you can BET that I most certainly will!


This is his "wearing schedule"

Day one. On one hour. off one hour. Reapply othosis atleast three times a day. Not to be worn during naps and night time.

Day two. On two hours, off one hour.  Reapply othosis atleast three times a day. Not to be worn during naps and night time

Day three. On four hours, off one hour. Reapply othosis atleast twice a day. Wear during naps. Not to be worn during night time.

Day four One for 6 hours off for one hour. Reapply othosis atleast twice a day. Wear during naps. Not to be worn during night time.

Day five. worn 6-8 hours, off for one hour. Reapply othosis atleast twice a day. Wear during naps. Not to be worn during night time.

Day six. Worn for 8 hours off for one hour. 8 hours a day/8 hours a night.

Day seven. On for 23 hours. and off for one hour.

Later, I will post pictures of the scanning and little man with his new gear. Gotta admitt, he does look like a little bad ass.

Plagiocephaly..

The last six weeks have seemed to drag on and on. But finally, we had Avery's second appointment with the ortho today. Going over Avery's history. Looking at his head, which seems to have a whole new shape to it these days. And doing more measurements. Firstly it was determined, Avery does indeed need to have a helmet. I've been dreading hearing those words. (more of that later on) However, with the previous diagnosis from the radiologist,and then a completely different one from the neuro the ortho decided to wait. WAIT?! More waiting? It seems as if this is all we have done. But she decided to wait, because she would like Avery to have another ct done. Being that his first was at such a young age,and we had conflicting diagnosis and the shape his head now is. She wants to make sure there is NO fusing before she puts him in a helmet. Okay, fine by us. Better safe than sorry. So then we needed to call his pedi and get that set up and the ball rolling. Earliest they can get us in for something like this? August 14th. Then another day or two on top of that to have the ct set up. Over all, his head circumfrence seems to have had a decent amount of growth. Spots induvidually? Barely at all. So, I guess we just wait some more right? Well let me just say, I'm extremely impatient. I just want definiate answers on what is going on with my sons head/skull so we can move to the next step. Work on fixing it. It's frustrating. Knowing something needs to be done, but not exactly what yet. I do not want Avery to have a helmet. If it has to be done, then yes I will obviously do what is best for him. But I wish he didn't need it. It might sound horrible of me..but I don't care what people think or say about me. But I know that it will get him stares, and people saying god knows what. And that's one thing that will bother me. But most importantly, I'm worried on how he will handle it. Will it bother him? Will he have difficulties sleeping? Will it delay him with things such as sitting up and crawling? I know it could be worse, and I thank god it isnt. But, I think any parent wants to protect their child from something being wrong no matter how big or small it may be. And this is just one of those things that I myself cant fix or change.

  A side view of my sweet boys head<3

Finally, an update.

I've been meaning to update this. But,  I've really been slacking.

I went to see Avery's pediatrician to talk about a second opinion and what she thought about Avery's appointment with the neurosurgeon. First, she measured his head because her office,and his had measurement that were wayyyy off. Hers had said his head circumference was only in the 15-25th percentile. The nuero had that it was the 50th. After measuring his head, she told me that he was right. That his head had already grown, and was in the 50th percentile. She ensured me she has worked with this doctor before and would never second guess him,not even with her own children. She suggested that since they want to bring him in to watch the back of his head that we will also check his head circumference monthly to make sure it continues to grow. The back of his head is flat,and sunken in in one spot.  This ISN'T from him laying on it. We've made sure of that by making sure that most of the time he is off of the back of his head, weither it be him being held, him being in his Bumbo seat, or me carrying him in his moby wrap. He goes in today and they will decide if he needs to be sent back to the specialist or if he needs to be fitted for a helmet. Or maybe to just continue to watch him. And then we take him on the 22nd to see the cardiologist again. He's going to do another ultrasound and ekg to check for the aortic insufficiency and make sure the palpitations haven't come back.

He's getting so big. 14 lbs 14 oz the last he was weighed. He loves to just sit here and talk to me and laugh. He absolutely adores his sisters and his face,as well as theirs lights up everytime they see each other. No matter what, it's all worth it. We were so blessed to have him come into our lives even with everything that's happened.

Second opinion?

So after Avery and I driving three hours, our reservations being messed up, so we thought (Chris booking them under my maiden name lol.) Getting it all straightened out. Avery and I settled down for the night. I hardly slept at all,and was already awake when the alarm on my phone went off. So we got around. Waited for his daddy to meet us. Got the road name from the man at the front desk that had the parking garage on it. To go there, realize that not only was it wrong..but that we forgot something. Great.  Turn around. Make sure we have everything, including the correct address. Finally get there..a half an hour late. I'm not sure how long we sat in the waiting room for,but I'm sure it seemed longer than it really was. I'm guessing we were in the room for maybe fifteen minutes. Saw the doctor for about five. And he told us exactly what I was hoping to hear, there's No concern for surgery. Thank God. He told me that his head was in the 50th percentile. And that he will just have our pedi keep an eye on head circumference. Such a relief.

After getting home and talking to my mother and grandmother, they reminded me of something.  At his last check up,just a week prior, they said his head was only in the 15-25th percentile. Would it really grow that fast in a week? They suggested getting a second opinion. And now, I'm back at not really knowing what to do. I don't want to not get a second opinion and have the first be wrong. And really, I would rather know for sure, even if others  consider it a waste of time and effort. So, I called our doctors office and am expecting a call from Dr leanord around three today. Were going to go over everything and discuss a second opinion. 

I'm hoping to hear the same thing. But after being in the position. Having that fear, my heart goes out to all of the families who are in those shoes. All of those parents stories I have read about them handing their babies to the surgical team and just waiting. I've talked to some amazing and strong cranio mother's, who are so inspiring. And am so thankful for those who have made it their mission to reach out to other mother's and help them. There are a few organizations that do things such as make care kits for the kids who need this surgery. I will be posting the websites on my blog for anyone who is interested in helping them out.

Almost time.

Do you ever just wish you could hide under the blankets,and it would make all the bad stuff go away?  Or even freeze time?  Almost like when you're little, and it made the monsters go away. Well, that's how I feel right now. As were sitting here ready and waiting until it's time to head to the hospital, I'm going over everything I want to ask the neurosurgeon.  I just want it all to go away. Being a mother, that's all we ever want is to protect our children. To make sure nothing bad happens to them. Some things are out of our control. So I remind myself, to be strong for Avery. That no matter what this doctor tells us,I have a very strong and amazing boy who will be okay. He's got a stubborn daddy and mommy. He had to of inherited some of that. Non the less, I would gladly take anything that could possibly hurt him away,and take it on myself.

There isn't too much longer and we leave the hotel and head over. I can't help but hope that the pedi and the radiologist are wrong. My grandmother thinks it's wishful hoping. I guess we will see.

So close.

Only two more days until we head to Rochester. And three more until the morning of Avery's appointment. Now, I'm starting to get really anxious and nervous. I cannot wait to get it done with. We spent the last two nights an hour away from home.  Relaxing and spending time with my parents. This has made all three of the kids happy. And I think it's something I really needed.

Tomorrow will be a hectic day for us.  Avery's big sisters Brookelyn and kayleigh will be coming back Monday to stay with their nonnie and poppa while we are in Rochester. (I get extreme separation anxiety,but know they are in good hands) so we will hopefully be going to my nieces birthday party and then be spending the afternoon making sure I have everything they need packed,and everything Avery and I need packed. I have no idea what to expect for this appointment.  I don't know if the neurosurgeon will want more scans done, or what. I just can't wait to get this done so we know what's next for our sweet baby boy.

Two months :)

Today, Avery is two months old. And today, he had his two month well child check up. I have to say, I am extremely proud of the fact that my exclusively breathed baby is already 13 lbs and 2 oz. And he is 23 and 1/4 inches. When he was born, he was 7 lbs 10 oz and 21 inches long. He had dropped down to 7 lbs 4 oz when we were discharged. His pedi was very impressed. He is in the 50th percentile for his height. 70Th for his weight. And 25th for his head circumference. 

He has hit all of the milestones for his age, and more. He smiles, coos, rolls over, follows us with his eyes. And all the normal things that a two month old does. He does not however pee all over like I hear most little boys do. Knock on wood.

The past threw appointments we haven't actually seen the kids pedi, but their nurse practitioner. Today, we saw his pedi.  But she really doesn't have anything she could tell me. She said She doesn't even know what to tell me to expect to hear from the neurosurgeon.  But, she did say that he is an amazing doctor. Fingers crossed.

There are exactly two weeks until Avery's appointment at strong with the neurosurgeon.  I'm getting so anxious. The way I handle not knowing, or having to think about my baby going through such a surgery varies. Sometimes I'm calm. Other times it gets to me, and I can't hold back the tears. Times like that I'm extremely thankful for the support system I have. Chris booked us a room in Rochester.  Thank you so much. Were so lucky for the amazing people in our lives.

Avery's arrival.

I realized, I never wrote out Avery's birth story. I think part of the reason is because of the overwhelming flood of emotions that come with it. But, I want to get it written out.
Firstly,I will say generally, for myself I'm all about a natural birthing experience. With little to no medical interventions,unless truly needed. The day I actually ended up having Avery, I had been contracting for six days. Contractions coming on every 4-6 minutes. Some being nothing more than annoying. Some actually being pretty painful. Either way, six days of contractions seriously wares a person down. Due to recent circumstances, my husband wasn't around for this. Or for Averys birth. But thats for another time. I did however have amazing support from my family and my friends. My parents stayed the week I was contracting to help me with the girls. I was back and forth between the hospital and home. Getting extremely frustrated that my contractions wernt dilating me. Finally on February 24th, I had an appointment with my midwife. Still contracting. She said that after a week, I was still at 3 cm. She told me she did not want me to get so tired out from it that it lead to one of my biggest fears, a c section. So, if I were still contracting later,she would not send me home. While listening to Averys heart beat, helen asked me if he had hiccups. Nope. But, it sounded like it. We decided it was the doppler. A few hours later, my contractions got more intense. Finally! My aunt Marion (who was there for every one of my births) came to take me to the hospital. The emotions of not having my husband with me, were really hard to shove aside as we were walking into to hospital. But, I did my best. We get to labor and delivery,just as they are having shift change. Which, worked in my favor. My nurse at first, I didn't really like. She hooked me up to the monitors. Helen came in,and we found out I had finally made it to four cm. So she was going to break my water (gasp). However, it was me who asked for it. I was desperate. But before she could do so, she told me that the high risk specialist had to come in with the ultrasound machine. She said Avery's heart rate wasn't registering right. It seems like it was skipping. So, it wasn't the Doppler. Dr. Dolkart came in. And in a rush, looked him over. Told me he had premature beats. The monitor couldn't keep up with his beats, that's why it seemed as if it was skipping. But that they could check it better after birth and shouldn't cause any complications. Helen then broke my water. In came my new nurse. Sweet as can be. One hundred percent supportive of what I wanted. She didn't do one thing with out asking, she didn't demand anything. She was supportive of a natural birth and loved that I was having my placenta encapsulated. My aunt and I walked the halls, for a while. Went back to the room. Where I rocked and used the birthing ball. With the lights dimmed. My aunt who was taking pictures, told me I needed to look like I was actually in labor. I was calm, smiling and laughing. The contractions were getting pretty painful. But, I worked through them. Once they started getting really bad, I got in the shower, on the birthing ball. My midwife and nurse were there when I needed them, but they didn't push. I started to doubt myself. I wasn't sure if I could go through another drug free birth. Knowing how bad I wanted one, Helen asked if I wanted to be checked,and then moved to a room with a whirl pool tub. YES!! I was six cm. And I remember thinking "that's is?!" I might have even said it out loud. I slowly waddled to another room. Got into the bath. I'm not sure I was even there for two minutes before I started feeling pressure and extreme pain. I started screaming for my aunt. I told her I wanted out,I had to push. And damnit if I wasn't a complete ten cm,I wasn't doing it. Sure enough, since the last time I was checked,not even ten minutes prior, when the nurse checked I was complete!! Thank goodness. However, my midwife was assisting an emergency c section. So they asked if I minded another midwife from a different office delivering. Whatever, I just wanted to hold my son. So, with my aunt by my side,as she's always been and with her help, I started pushing. Part way through I wanted to stop. For the first time through my labor, I was TOLD that I couldn't, that I needed to push RIGHT NOW. Later on, I learned this was because Avery had come out with his hand up against his face. I don't know how many times I pushed. I do know that it was only for two minutes. And I had my sweet little boy handed right to me. He was kind of  blue, and to me it sounded like his breathing wasn't right. So, while we got to bond,and as his cord was still pulsing (we did delayed cord clamping) my nurse every now and then  would check him. He nursed like a pro right away. Once his cord stopped pulsing, my aunt cut his cord. They weighed him. Expecting him to be 7 lbs even. He was 7 lbs 10 oz. My biggest baby. After an hour of just admiring how beautiful he was, his breathing still wasnt right. So they took him to the nursery to check him over as my aunt went with him. I had to get a couple stitches for a small tear. Got cleaned up,and took my stuff to my room. Waiting for my blood pressure to be checked so that I could go be with him. Finally, I got to go to the nursery. When they brought him in, he had been taking 100 breaths per minute. It should have been no more than sixty. It took four hours for his breathing to correct itself. Then they could finally give him his bath. And FINALLY come to the room with me. I was in complete awe with him. He was so perfect. The next day he needed about ekg, and ended up needing to see the cardiologist. We STILL have to go back for more tests. From the time my water was broke, until Avery was born, was 3 hours and 33 minutes. My labor with him was so much easier than the girls' labors. Somehow with the contractions and the emotions from not having Dan there, I managed to stay calmer than with theirs too..I didn't even feel like I has given birth, I felt amazing. Looking back, I know one of the biggest reasons I got through it the way I did was the love and support my aunt is always there to give me. She truly is my hero. No matter who wasn't there,and how tiring a week with non stop contractions were, I had an amazing birthing experience and was blessed with an amazing little boy. And I must say, I'm also very proud of myself.

Running in circles...

And,getting no where's fast. One of my biggest flaws, is that I'm incredibly impatient. I'll be the first person to admit that. All day yesterday, I called multiple hospitals,talked to someone in radiology. Asking for nothing more than a second opinion. Every hospital around here, uses the same group of radiologist. I called Robert Packer in sayre. All they kept doing is transferring from person to person. Finally,they transfered me to someone in pediatrics. Where the woman I spoke to,  suggested getting a referral to gysingers children's hospital,or a nerurologist that is right in Elmira.

I also, played phone tag with my doctor, Dr. Coleman all day. Who finally left me a voicemail telling me he would be more than happy to help out. One of the many things I like about Dr. Coleman is, when it comes to a child, he doesn't approach the situation as just a doctor,but as a parent as well. He is willing to see Avery, check him over,look at the scans,and refer him to a different specialist than the one we see on May 8th. So that we have another opinion on everything.

I have to say thank you again, to all of the mother's who have been through this and reached out to me. It makes the waiting a little easier to deal with.

A second opinion.

I want to start off by saying, though I have doubted some of the on call pedis at our doctors when it  comes to the pedi and np that are actually my children's, I adore them and trust them. However, since they really couldn't give me much information other than word for word what the radiologist report said, I decided I want to get some more opinions. They just don't seems to know much about craniosynostosis. I called a few different places. Including the closest hospital to me, Schuyler. The person I spoke to in radiology told me that it's the same group of radiologists that read the scans at Arnot. Well crap. Called a few other places. No luck.  As a last resort, (and why I didn't think of it sooner, I don't know) I called my doctors office. Unfortunately,  Dr.Coleman was in one of the other offices today. The nurse I spoke to told me to call back tomorrow and speak to him, that she's sure he would be willing. Dr. Coleman is an amazing doctor. My little cousin had been diagnosed with hsp. He didn't know much about it. But, once they knew he made sure he did. Whatever we are told, we are still obviously going to be seeing the neurosurgen on May 8th. But, it would really be nice to have another opinion.

Today Avery and his big sisters had a busy, and good day. spending the day and getting lunch ( which ofcourse consisted of breast milk for Avery.) With their great aunt, who just moved back home after over two years. Avery absolutely loves her already!! And ending the afternoon with lots of cuddling, smiles, and cooing. I could stay up all night talking to him and listening to him cooing back with his big gummy smiles. It's little things like that,  that remind me how blessed I am to have all three of my children. Times like that , that I know everything will be okay, no matter what.

The radiologist report.

Today I went to go pick up the disc containing the images from Avery's CT and his xrays. With them was the full report from the radiologist.

on the 12th they did the xray.

It says

Findings: the coronal and sagittal sutures are not well seen. Worrisome for premature fusion.  If further evaluation is desired, correlation with CT is recommended.

Our pedi set the CT up for the very next morning.

The results from that say..

Findings: Unremarkable Brain Parenchyma and CSF spaces. Intact bones. Partial closure of the metopic, coronal, sagittal and lambdoid sutures compatible with craniosynostosis.

Today I contacted Avery's cardiologist. I am not sure if all of the stuff going on with his heart will add any risks for surgery. Or, if any added precautions will need to be followed. But, they've faxed over everything needed to the Neurosurgeon. So, I guess we will find out on May 8th.I hate the waiting. And not knowing exactly what Avery will be going through. But, at this point there isn't anything we can do but wait. Avery's "Aunt Kathy" and my friend Candice both had Avery put on their prayer list on Sunday. It's comforting to know he has so many people who love him and are praying for the best for him.

A few facts.

I've learned a couple things since last night, while researching.

Craniosynostosis is congenital, meaning the condition existed during, or even before birth.
It occurs in one out of every 2,500 births.
It effects males twice as much as it does females.
And it can, but not always be genetic.


I bought a notebook, to keep track of any questions that I want to ask the neurosurgeon. Because, I know if I xrt be able to remember half of them!

Of course, not every website I've read says the same exact things.

I decided to go to the hospitals website. To read what they had about the Neurosurgeon that we are meeting with in May. So far, I am happy with what I have read about him. I hope I still feel the same way once we meet with him.
Monday I will be contacting Avery's cardiologist to ask if his heart problems pose any extra risks, or if any precautions have to be taken. I think I will also call his pediatrician, to see if we can get an appointment to go over everything with her in person right after Kayleigh's on Tuesday. Radiology should have a disc waiting for me on Monday that contains the xray and ct scan images, for us to take with us to Rochester.


Everyone tells me not to read all of the stories of the cranio babies. And to stop researching it. But, really I can't help it. It feels like the appointment with the neurosurgeon is SO long away. And, I hate not knowing what he is going to say to us. Atleast this way, I can be somewhat prepared. Though, I'm afraid no matter how many stories I read about the brave and sweet babies and their strong, and amazing parents, when it comes down to the surgery there is no way I will be prepared for the emotions I will experience.

It looks like life's going to be getting a bit harder..

I had actually written this yesterday, but hadn't finished setting my blog up.

I've been waiting all day, to finally get the chance to sit down, and get all of these thoughts that are running through my head out. But, as I sit here, I really don't know where to start.

Two days ago, our lives were turned upside down. Or, that's the way it feels. I took Avery to the doctor for a simple follow up appointment for his reflux medicine. Or, so I had thought anyways. I was so excited to hear that my exclusively breastfed baby had gained almost 5 lbs already, at only seven weeks old!! Like usual, Shannon went on about how absolutely adorable Avery was, and how he was the spitting image of his daddy. But, I noticed that she kept going back to the top of his head, with a thoughtful look on her face.  She then told me, that we would have to increase the dosage of Avery's reflux medicine, because of how much weight he had gained. 

Next came the bad news. She told me that Avery's soft spot was smaller than it should be. I already knew what this could mean. Having heard of Craniosynostosis before. It took everything in me to keep myself composed, as I sat there,holding Avery,my eyes glued on him, and listening to her talk.  She told me, that she wanted me to take him over to Arnot Hospital to have an xray done right away. I was so scared at that point. I some how managed to walk through the doctors office, get Avery in the car,and myself in the car  before I broke down in tears. I called his daddy to tell him the news. I think he had to stop me, and calm me down about five times before I could get it out. Sometimes his laidback calm approach really bothers me. How he can keep himself so composed all of the time is beyond me..But more often than not, it helps bring me back together. Once I was calm again, I drove us to the hospital. The girls who did his Xrays, were amazing. They quickly got them done, and told me that I would get the results by the end of the day. Even though it only took a few hours, it seemed to have taken forever. When the pediatrician called, she told me that the xrays showed premature fusing of the bones in Avery's skull. She wanted a ct scan done, first thing in the morning, to confirm it. 

The next day, Brandi and I took Avery for his ct. I think the scan lasted less than a minute. But, his doctor wanted us to wait. So that they could read her the results with us on site. After about forty five minutes, a woman came out and told me that the pedi was on the phone, and she would like to talk to me.She told me that the ct was positive, And that Avery had Sagittal Craniosynotosis. She kept telling me how sorry she was. That I had only come in for a simple appointment, and she felt so bad that she blindsided us with this. They referred us to a neurosurgeon at Strong Memorial in Rochester Ny. So for now, all that's left to do is wait. The earliest open appointment is not until May 8th. Avery is however, top on the list if someone cannot make it to their appointment.

I feel like our world has been completely rocked. As much as I am positive that Avery will be okay, this is very scary. Nobody wants to be told that ANYTHING is wrong with their child. To have to wonder how "normal" their life will be? To have to think of all of the hopes and dreams you have for them, and how far away they seem to be now. But especially to have to think of my sweet 12 lb baby who is only seven weeks old facing such an intense and scary operation. I do know, that my little boy is a fighter though, He is loved by so many people. And I have no doubt, that in the end of this he will come out on top.

I've been talking to an amazing woman, who has been through this with her baby boy (the same age as my daughter Kayleigh, we met online on a birth board while pregnant for our babies) She is such a godsend. She has given me so much information already (and it's only been two days!!) She has also put me in touch, with another cranio mommy. I am so thankful for these two women, and all of the other people we have in our corner. <3