Author: alissachristensen

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!