Category: Medical

Sawyer James
Birth-Present

Just realizing how fast the time goes. Sawyer is going to be 8 months in 2 weeks. I can’t believe it. My little boy is growing too fast! Sometimes the days seem to drag on as we wait, but we are 5 nights away from the surgery now! Exciting and not at the same time. I had my nice little cry at a friends house yesterday, but I’m all tied up in my shiny strong box with a bow again. But I am just constantly looking at all of Sawyers pictures. Seeing how much he has changed in a short amount of time. So hopefully this week goes by just as fast!

Sawyer and Jack
Birth and 7 Months

Sawyer and his little Buddy Jack. Born one day apart! Sawyer is only older by a couple hours really. I have worked for Jack’s Mommy in the past watching her two older boys! Jack and Sawyer first met at his baby shower and have gotten back together a few times since then. We just had a play date last week and wow have they grown since the first time. {sawyer is in the right, and then left of the two pictures} Jack {‘s Mommy} was the one who was so super thoughtful when Sawyer was diagnosed, and sent cards and the little surgeon bear. Who will accompany us to the hospital on Wednesday. I hope these two continue to grown up together.

Sawyer and Claire
1 Month, 3 Months
5 Months, 7 Months

This is Sawyers girlfriend Claire. I adore that these two have known each other from day one too. I continue to get shots of them together at all our play dates. Which have turned into a mini Mommy’s weekly group. Those little meet ups have given me my sanity back. Good for Mommy and Great for Sawyer.  It was so fun being pregnant with a friend at the same time and now these two get to have a lasting friendship as well!

Bump to Baby
9 Months Pregnant-3 Months Old

The ultimate time flies photo. I can’t believe last year I had just found out our little bump was going to be a little boy. It seems forever ago and still like yesterday. Many of you know I was desperately wishing for a little girl. I had never grown up with boys and I’m as girly as it gets. I was so afraid of not knowing what to do with a boy! Now I really truly can’t imagine life without him. His smile brightens my day, his laughter lights up my world. And even when he wakes up at five am I find myself fighting the smiles when he just gives me his cutest faces, because he is so excited to see mine again. He is the reason I am going to be strong on Wednesday. My little man, the best thing to ever happen to us.

Last night Sawyer must have known I was starting to let the feelings sink in. He woke up 4 times after being put down for the night. Just crying and crying. So I got to spend a lot of extra time holding him and cuddling. He calmed down as soon as I touched him , I stood for a long time rocking him back and forth. Then we sat on the glider together. He was being so sweet in my arms. And  right before I put him down the last time, he looked up at me and it was almost too dark to notice, he gave me this big beautiful smile with eyes half closed and so tired, and gently reached up and touched my cheek and then went back to sleep. That’s about as sweet as a moment can get.

And yes we are now under a week away from this. One week from right now I will be having multiple panic attacks in the children’s wing waiting room. We will thankfully be surrounded by family and friends, and be updating everyone back home too. (we’re gonna miss our GB that day, but we promise to make you feel like your there with us as much as possible.) For those of you who want to be kept in the loop, I will be posting to my fb page, and I will do a daily post to lissables at the end of each day. I will be posting photo’s as well. They are going to be graphic sometimes. There is your warning. I am documenting it for myself and for the friends and family back home who want to see it. But I totally understand if you avoid my pages all week!

Tomorrow is our pre-op appointment with the pediatric plastic surgeon. My mom arrives on Monday. Sawyer will have blood drawn Monday or Tuesday. And in 7 days we will be on our way to recovery and this whole process will be winding down and out of our lives. Again thank you to everyone who is following our story and being so supportive. I would not be able to be this strong for Sawyer without this outlet for my emotions and the support you all give us. Your little messages always give me the strength to get through the harder days. I may not always reply to your messages but I read them all. One more week. Just have to get through one more week.

We now have the surgery date, the pre op appointment, and are just waiting on the insurance approval so the Neurosurgeon can give us our full set of instructions. As we get closer to the actual day, my mind is starting to wear down the strong wall I’ve built. For months I have been able to push the thought of this surgery far off  into the small dark corners of my mind. But its 12 days away now.

My stomach does flips when I read that. 12 days. I have registered for a care package on Sawyers behalf at craniocarebears.org, and I have been reading their updates on other surgeries. Its empowering reading other mom’s strong words of heartbreak. I know Sawyer’s story will soon be on their board. And I hope it helps other moms like myself have a deep breath and just a moment of peace in the whole process.

I can’t tell you its been easy, since most of you know our struggles with health care and insurance. I’m not going to say one system is better than the other because both have faults. I think our hardest struggle is knowing both, and having to switch to an unfamiliar system. We have had amazing Doctors and always wonderful nurses, they just come between frustrations over the phone. And though its been a rocky road, its almost over. {Please don’t let me have another high risk pregnancy! We’ve seen enough doctors this last year to last a lifetime already!}

So as we gear up to the worst day of my life Sawyer’s surgery, I am starting to break down a bit each day. I cry reading the success stories, I cried last night reading “I’ll like your for always, I’ll love you forever, As long as I’m living, My baby you’ll be.” Basically I cry at anything. I must be so fun to live with {thanks Brandon} I’m starting to pack a hospital bag for sawyer. With anything that buttons up instead of going over his head. Some toys, some books, Some super soft blankets. And the one I made for him that he loves to run his hands over. I know for me being told I wouldn’t be able to see for 4 days would be extremely disorientating, but Sawyer won’t know that’s coming at all. So I want to make that transition as easy as possible for him. He loves to hold any of my necklaces in his hands while he falls asleep. {which is why there is 3 laying broken on my nightstand right now} So I am packing things like that too. To let him know I’m Here For You.

12 days.

It has finally happened! Remember how just a couple days ago I was told end of June. Seems like no one communicates at all betweens the doctors and patients. We literally just got a letter in the mail with a Surgery date.

JUNE 6.  Sagittal craniosynostosis, total cranial reconstruction.  5:30 am arrival and surgery begins at 7:30 am. 3-5 days in hospital recovery.

We are now supposed to make an appointment for a 3 week week prior pre-op appointment. Which would be right now. So hopefully we can get in and everything goes smoothly from here on!

Thanks for the support guys!

For most of the posts about Sawyer and his Craniosynostosis I have been upbeat and positive. I have learned how strong I am through this tiny child. And have been welcomed into a community of other mom’s who give me strength through their stories. And I have been brought to tears of the strength of one mom in particular. {If you wish to read her story you can find it here. I do recommend going back and reading it from the beginning. She is an incredible woman.} Be warned her journey will bring you to tears many times. And as most days I can put this into the far back corners of my mind, some days are just not that fortunate.

After our last doctors appointment {April 9} we were told CTscan and surgery would be scheduled asap, and everything would be over by May 9th at the latest. I wish they would understand that when you give dates to a stressed and optimistic mom of a 6 month old, she takes them as that. May 9th has come and gone. We finally got the CATscan done late due to poor communication with our insurance company and doctors. And then we waited 4 days. No call, no dates. I called them today to get my answers myself.

I cannot tell you what a frustration it is when my phone call seems to be of no importance to anyone. I was transferred to 4 different women, each not knowing why I had been transferred, and having to explain it over again. By the 4th time, my voice was cracking with tears. I was told I could have a consult appointment on May 21. When I asked to have it sooner I was told I could have one this Thursday if I could bring my CTscan results in with me. But I explained that I indeed did not have them and that they were the ones who had the results. She told me no and transfered me again. I finally got someone to look at his actual file and tell me what was going on. Apparently they have been trying to schedule his surgery {but didn’t think I needed a phone call about it.} The problem is that my Neurosurgeon is going on vacation. We have been moved to end of June. Still without a date.

Please don’t misunderstand me. I understand that everyone deserves a vacation. I am just extremely frustrated with not being told anything, with waiting since February for this surgery, with the stress of dealing with all of this. I feel continually like our doctors do not see us on a human level. They do not understand that as first time parents of a 7 month old baby, we might appreciate knowing what is happening. So somedays are not as strong, and today happens to be one of them. Where dealing with 2 dogs at the vet getting multiple shots was miles easier than one phone call to one doctors office. Where I wish I hadn’t phoned and ruined my morning after having a great time with family.

No some of those days, its easier to just curl up and have a good cry. Let your baby have an extra nap, an extra bottle because who cares if his schedule is was off today. Have a couple vents on the phone {thanks dad.} And then have a couple deep breaths, read the blog posts from reflections on a journey and remember: its nothing compared to some. Its crappy, and its not going to change. So deal with it. And then have another cry. Life goes on.

Today was the much anticipated CATscan. I feel like it’s literally been an eternity since finding out about craniosynostosis. So it feels so good to finally be doing something about it. Our day started at 5 am, I stood over the crib of a perfect sleeping baby. Everything in the house was quiet and peaceful. I pulled our little guy out of bed to have an extra bottle. Not needing it and wondering why on earth I was doing it, he barely finished 4 ounces. But it was enough to hold him over this morning. Sawyer wasn’t allowed to eat anything after 6am, because of the sedation.

That’s where the peaceful part of the morning ended. It always seems fitting on your most stressful days, what can go wrong does go wrong. We were late leaving the house, the gas light turned on as soon as we hit the freeway, hit as much traffic as possible. Made it just in time, but couldn’t find the building with no name on it. Just not the way I envisioned it, but it never is.

And maybe that’s why I got the sweetest staff and nurses. It helped that Sawyer was wearing his custom mini scrubs. (Thank you Denise, they are too adorable!) The nurses couldn’t get enough of him. There is no better feeling for a mom in a hospital with a baby, than having nurses who understand your losing your mind.

It was a very fast procedure. They gave him a liquid sedative orally by a syringe. He was asleep within minutes. By the time they came back to check on him he was one limp baby. We were escorted to another room where the CT machine was. I was allowed to stay by his side the entire time. I watched them slide my little baby’s head into a giant hollow orb. The machine clicked on and started to whirl around that tiny little baby. It was over in less than 5 minutes. He was so sedated, That when I got to pick him back up I had to be extremely careful with his neck and limbs. We sat together for the next hour. They had a glider for us to sit in, and we just sat and cuddled. He was so peaceful.

After an hour we started to wake him, changing him, laying him on the bed, and rubbing his face. Those little eyelids were so heavy. He woke just enough to drink a small bottle and allow us to leave. He’s been tired most of the morning, and is just waking up now. He’s my little trouper, and we are done another step of this process. Thank you to everyone for all the continued support. I am so touched every time we receive a message. Sometimes they are what make the day a little brighter. Truly thank you, from both Brandon and I. And hopefully we’ll have a surgery date soon!

After much frustration yesterday. And maybe one not so nice message left on the answering machine, Brandon finally got a call back. We have an appointment for Sawyers CATscan. May 11th. Over 30 days from the last appointment. Which means we go back for another consultation before the surgery. Which will not be scheduled until after this test now.

Its at 8 am and he is not allowed to eat 2 hrs prior to the appointment. So I will get up at 5:30 to feed him a bottle to last him into the CATscan. Hopefully it will be on time. They will be sedating him, and it is a clinic that regularly see’s babies. (side not: we cannot get the CT done at the hospital because it would not be covered by our insurance. I will never ever begin to understand the american health care system and why anyone thinks its ok for a first world country.) So we have one date. One step closer.

As you can tell this isn’t my usual fluffy positive type of a post. Its just been that kind of a day. Which we are all allowed, but especially on any day we deal with healthcare. Also it could be because I’m posting this at 1 am. (sometimes its just easier to stay up and feed him, than sleep for an hour, yell at the hubby to feed him, realize he’s just as tired, finally get up, sleep in the glider while feeding him and somehow make it back to the bed again.)

And on that note, thank you Brandon for waking up with Sawyer and letting me sleep in 2 days in a row. Thank you, thank you, thank you! It’s been magical. Enjoy it today!

Today was the much awaited pediatric plastic surgeon appointment. {Ps. it was not McSteamy. Dang ABC for giving me unrealistic expectations of all doctors.} But he was very nice and his resident was making faces at Sawyer the whole time. He did not mess around at all. And I think that’s what you want in a doctor. He got right into explaining all the dirty details. By now I can listen to the whole procedure without blinking an eye. I remember thinking I was going to be that mom who can’t keep it together when my baby cried during shots. And now I can walk through an entire surgery on my 6 month baby’s head without any emotion. {if you want all those details go back and read: A Neurosurgeon.}

Today was a short visit. He is requiring Sawyer to have a CATscan done before surgery. We will hopefully be contacted by their office for that appointment in the next 10 days. No MRI, confirmed and the CATscan to rule out other abnormalities that can be unforeseen and linked to craniosynostosis. Knowing that the CATscan will be done asap, the Doctor believes surgery will be scheduled within 30 days of today. He said we have the option to push it back a couple weeks, but the faster the better for us! He was very thorough about answering all our questions. He explained why we are lucky to have caught it before a year. And if left untreated, can be known to cause delays in mental development. I’m completely rambling right now. Basically, the appointment went well, nice Doctor, things moving along, more waiting.

The biggest development was finding out only one parent is allowed to stay the night with him during recovery. It will be 5 days in the ICU. I won’t want to leave him, there is no way I could breathe let alone sleep away from the hospital. And yet I’m the biggest chicken about being alone. As if those first days weren’t already going to be tough. But still staying positive!

Completely touched that so many people continue to give such strong support. Ive already had people offering and asking what they can do to help during the recovery. We are so blessed to be surrounded by love on so many levels. Im amazed each any every time it happens, how many people care. Its so nice to see in today’s world when our values are sometimes skewed.

And if you know someone going through the same diagnosis or in the future have to deal with it, please refer them back to this and previous posts. I think sharing is the best way to find genuine experiences. I would be happy to help, since I had two moms step forward and tell me their entire story. It got me through the first days of an unheard of condition. As well as the CRANIO CIRCLE and Cranio Care Bears. And you can always reach me at lissables@gmail.com

As always I’ll update when the time comes. Thanks to everyone following our story.

After a long 2 weeks of battling some more health care approvals and road blocks, we finally have an appointment with the pediatric plastic surgeon! Next Monday the 9th will hopefully be the last appointment and we can book the surgery. There is a small chance he will require a CATscan first, but hopefully we can skip that as they are deeming surgery necessary anyways. How weird that I just want to have this surgery as fast as possible. I just don’t want to keep waiting anymore. Plus I was hoping to have it sooner than later because I don’t want it falling on my sister-in-laws due date! How sad would that be to miss something happy and new for something so sad. Either way it will be nice to have some final news on this big date!

Since I have been waiting on this appointment for 2 weeks Ive also reached out on the internet and found some amazing support groups. I tried first on babycenter.com but theirs is small and very slow. A mom from there recommended a facebook group called OUR CRANIO CIRCLE. The moms from there have all gone through this exact process and surgery. They have been amazing and kind, and have answered all of my {sometimes silly} questions. I feel so much better since interacting with them. And through that group I found another foundation. Cranio Care Bears, They started as two moms in the same situation and wanting to make it easier on other moms. They offer free care packages for cranio kids going in for surgery. As soon as we get our surgery date I can request one for Sawyer. Very sweet.

And of course Ive been finding humor in every situation. I know my family and friends think its dark humor, But you have to have something help you smile when a 6 month old has seen a neurologist, pediatric neurosurgeon and pediatric plastic surgeon back to back! So I found between those 2 support groups 2 onesies that I think I’ll have to recreate. one said “My  first hair cut was by a Neurosurgeon.” And the other said “Chicks dig scars!” I think they are cute. And definitely something not many other kids can have! I’ll find any way to stay positive about all of this.

I’ll update again as usual as soon as we know more! So hopefully one more week!

Thanks so much for the continued support everyone!

I’m sad to say I have nothing new to update everyone on today. We got a call on Saturday telling us our insurance had approved our next visit with a pediatric plastic surgeon. We were to call on Monday for an appointment. Here is where is gets annoying on our end. Since most of my readers are from Canada you are only given a small window into American Healthcare. I’ll admit it has its ups and downs. If you have me on facebook you know I’m a complainer of the system. Its not to say I haven’t enjoyed almost all and any of the nursing staff and doctors we’ve encountered this last year. I certainly never would have been able to go in demanding a C-section in Canada and it’s what made our birth story that much easier on all of us. Finding out later that we would have never been able to have Sawyer naturally and that I made that call and it was right. Having said all that though, there is still some very frustrating flaws in the system.

I wont even argue my big issues today, but on Monday when I was trying to make one single appointment I reached another breaking point. I was turned down without a written referral. I am not used to this expectation that I can only see a doctor if I have been referred and approved by insurance. Of course we had one but this would be about the 4th time it seems to get lost in fax land. I was told I would need to go all the way back to my pediatrician for it. Back in the wrong direction 3 doctors. I didn’t think so. I tried calling the previous doctor, our neurosurgeon, but couldn’t get through. Then I called our pediatricians line just in case. It was my lucky day and I got a woman who clearly didn’t care about us, couldn’t speak English and was losing my mind when I had to repeat our phone number 50 times and respell Sawyers name a dozen more. No its Sawyer with an S like Saw. NOT FAWYER. This is not my entry in my house Im calling you about. I ended up hanging up on her because it didn’t get anywhere . But she must have left a message for my pediatrician, so they called me even more confused since they haven’t been a part of this since Feb 9th.

We are now waiting because Brandon took over after one too many Alissa tears, and finally got through to the neurosurgeons office. They faxed that dang referral over again, and we were told to call them in 15 minutes. Tick tock tick tock. Nothing. We called and they told us we would be called when they scheduled an appointment for us. I can be calm and strong about this diagnoses and pending surgery but I just want to be dealt with as a new mother dealing with some scary news. Don’t leave me waiting in the dark for weeks waiting for appointments. Whats it going to be like booking the actual surgery!

We are still doing fine as a family. I am extremely lucky to be able to stay at home with my son, and even more fortunate that Brandon works from home as well. So we have more family time that anyone I know. And for that I will be forever thankful. Brandon is my rock and without him I would still be crying and yelling at health care reps from Monday. So we’ll just continue to wait again. I’m getting a lot of practice in that end. Hopefully I will be able to update everyone with real news soon. I just needed a little vent today.

Now I’ve got to prepare for doubling my baby count in the house! Sawyers little friend Claire is coming over for the afternoon while her Mommy and Daddy have some grown up time. Life is too short to be upset all the time. So we’re going to enjoy our double the fun afternoon. And then Sawyer is even more lucky because both Grandma’s couldn’t stay away any longer so Brandon’s mom is in town this week and the day she flies home, my mom gets here for a week! Last night Sawyer had an entire nap in GB’s arms. I’m not sure which one of them loved it more. He is truly loved.

ps. I think ever since they told me they were going to shave his head, his hair has started to grown twice as fast. ???