Sleep Study

   Kid's sleep study was on Friday. It was at 9 pm so we got there at 8:30 and got all the paperwork and stuff done! Then they took her to a room, I gave her her meds and they started hooking her up!

It took an hour to hook her up! And three nurses LOL

She fell asleep 18 minutes after they got her hooked up!! She did so well and didn't cry at all! She wasn't happy when they were marking on her head with the pencil. She told them 'My mommy doesn't let me draw on my skin!'

She loved the pulse ox on her toe! She called it her special toe and was sad when they took it off her in the morning!

After she fell asleep I watched the machines for a while. The heart rate beeping was toned to how her o2 sats were. 

During the first part of sleep her sats would hang around 96% which is the low end of normal. But at some points during the nite her o2 would drop to 93% which is not normal. She moved around a lot.

They told me we'd have the results of her study early this week. So I'll keep you all updated on how that goes!

Issues and Possible Sleep Apnea?

 Where to start where to start? It seems like the two timelines and smooshed together. So I guess I'll start with one and just go to the other?

  I've been suffering from severe anxiety since I was 18, but around that time my sleep went to hell too and I figured 'hey I'm young and we have bad sleep.' and never really thought about it anymore.

  Had some kids, did lots of medications to try and control the anxiety. In 2008 or 2009? I started having episodes where my heart would be racing really fast when I woke up. I'd also start having times where I'd wake up gasping for air. It wasn't all the time so I didn't worry much.

  Then in 2010 my heart started throwing PVCs. PVC or Premature Ventricular Contractions is when your heart will have two beats really close together, so it feels like fluttering or your heart skipping a beat. 

  So I saw a cardiologist, I had a 24 hour monitor test, a stress test with echo and numerous EKGs, Everything was normal. They told me to cut out Caffeine and it was because of that and stress.

   I cut down to one caffeinated drink a day  until last year in August when I got a job and during my job my heart would throw so many PVCs! I stopped all caffeine. I quit that job in November and around this time my anxiety went so badly that I had to medicate. I started lexapro. So my anxiety has been great my my sleep has gotten worse!

   I lay awake at night and just can't fall asleep for hours.

   I've started having PVCs again though I have no caffeine

   I'm exhausted all the time.

   I can barely drive or function sometimes

   My husband has started waking me up at night saying he thought I stopped breathing.

   I wake up with headaches most days.

 So I've been just dealing with all this. I had my thyroid and hormones checked and they are all normal. 

 In April DD R (The one who's asthmatic and dyslexic) started suffering horrible migraines! She ended up in the ER for them. So we went to her pedi, and then had an MRI and then met with a neurologist. I've been stressed and more tired than ever and just so run down.

 The pedi had put her on a medication and the neuro thought we should keep her on it, but he also asked how DD was sleeping. Now I need a little back story here.

  When DD was 4 months old she was diagnosed with Asthma and Gerd and had a sleep study at about 5-6 months old

Her AHI was about 57/hour which means that she stopped breathing 57 times an hour. This is severe apnea. She was put on an apnea monitor until she was 1. At 13 months old the symptoms I'd noticed in DD went away so I figured she'd grown out of it. She still had her asthma though.

So I told the neuro she slept weird. She's up 4-6 times a night. She'll flail and flop and her muscles and legs will spasm. She'll wake up tired, she snorts and wheezes in her sleep. She just does not seem to sleep well. He told us she might have sleep apnea which making her unable to sleep and to see her pulmonologist.

I started reading about Sleep Apnea after this and started wondering if 'I' had it. I saw my GP yesterday and she referred me immediately to a sleep study and I'm just currently waiting to get a call to schedule it. Well last night I was reading and discovered? Sleep Apnea can cause Anxiety, it can cause IBS (which I have) it can cause PVCs and cause ALL the problems that I'm having!!!

I really think this might be the root of my problem!

So today? DD saw her pulmonologist and it was a really interesting talk

So first for pics!

Her lung function tests were good! Her lungs were clear so woohoo!! In other news I talked to the pulmo about her issues and she is setting her up for a sleep study.

I asked if Sleep Apnea could be hereditary since I'm having issues and having a sleep study.

She told me that the formation in the throat that is causing the OSA could definitely be hereditary and that since R had apnea at such a young age (4 months) it's most likely she was born with it!

So I'll get a call soon to get her sleep study at Children's Hospital Scheduled and all that jazz.

And that's what is going on in our lives right now.

Where to start this post

I've had a rough couple of days but am almost out of the pit again. On the 23rd it was an anniversary of sorts for me. 6 years ago on March 23, 2007 at 18 weeks I discovered we had no fluid. I'd gone in for a routine U/S and the technician had been eerily silent which is never a good thing. She kept asking if I had been leaking and when I answered no, was I SURE?

They told me Calypso had a 30% chance of being stillborn, I was sent home and told to come back in 2 weeks. There was nothing they could do at that point in time. Little did I know this was the start of our whole ordeal.

Even on bad days, it's hard to explain to people I'm NOT sorry it happened. I'm so very blessed for each day I got with Calypso! Even though 6 weeks of it was in the hospital on bedrest and 23 of it she was super sick. She almost wasn't born alive at all! I am so very blessed!

I made a hat for my reborn doll, periodically I like dressing her up. It heals something inside of me that hurts because I can't have more babies. So this way I can still splurge and do super cutesy things from time to time

So I decided to make hats for my LC too! Here's my eldest modeling hers!

Still working on kid.2's hat! Her's is pink with blue ears lol but I'll post it when it's done!

Yesterday we played in the snow all day and I built a snow person!! (Yes I'm 28 and still building snow people) And look! She/He is french!

We're in full swing for Easter!! Here's the girls modeling their outfits!

I currently have no idea what we'll do about hair! I only know I'm curling the little's long hair in rag curls the night before. LOL

I never know quite what to get them for their Easter Baskets either.  So this year they are each getting a rabbit that has their names embroidered in their ear

Also candy, chalk, coloring books, candy, and special treasures in Easter Eggs.

Besides the hat project I have going on I've been painting plastic Easter Eggs

Making and selling Rosaries

As well as selling weighted bears in memory of angels

Also back working at my violin!! Working on Minuet No. 1 and No. 2 as well as Coleraine!

And so there's what is going on :D

One last thing. I've been getting a lot of traffic lately. So I want to appeal to you all. Calypso's 6th birthday is coming up in June. I'm trying to get her facebook page to 500 likes. Please check it out?

The life of Pai

Memento Mori

  I've been pondering this post for a while, but it's a very delicate subject and I've been unsure how exactly to approach it. However, I will be approaching it because it needs to be said and it needs to be out there somewhere.

 Almost everyone has heard of old Memento Mori or Post Mortem photos. If you haven't and are wondering 'What is Memento Mori photography?' I'll tell you.

Post-mortem photography (also known as memorial portraiture, memento mori or mourning portraits) is the practice of photographing the recently deceased. Very simple, yes?

At one point in history they were very popular and here are some examples I found online.

I've been fascinated with PM photos since I was about 11 or 12. The photos are so heart-wrenching but at the same time so beautiful and peaceful. Like they are sleeping. I first became interested at my grandmother's house. She had a book called Otto Ping 'Photographer of Brown County, Indiana 1900-1940' and in this book were two photos that never left my mind. I now own the book so here are photos of the photos.

This first photo is of Kenneth Barker Born 1903 and died 1908. The photographer actually took a photo of the whole family while he was alive but Kenneth had died by the time the photo was finished printing

The second is an unknown infant but the layout and dress are so beautiful and painful to see

They stuck with me. I began to look through antique stores to find more memento mori photos but have never been lucky in my searches. I wonder sometimes if the universe was trying to prepare me for what would eventually come far far into the future.

After I lost Calypso though I had a whole new appreciation for Memento Mori, especially since I had some myself. For some parents it's the only photos they have of their babies, for others it's the only photos they have of themselves holding their children.

I often hear people say 'Oh Post Mortem photos aren't a common thing anymore' but in reality they are. For the baby loss community memento mori photos are very much still around. Take for example the photo below

The wee baby girl above is named Vylette Moon. Her mommy took this photo after she passed away. Vylette died due to complications from medical negligence.

These modern Memento Mori are not always as flowery and extravagant in the scheme of things but they are all just as special and just as beautiful as the photos of old.

The photos still capture a child, still capture a memory and in some cases are still the only photo or the only GOOD photo (in cases of a lot of NICU babies) these parents can have. They are treasured keepsakes and deserve the same appreciation and awe these Memento Mori of old do.

Take for example these two beautiful beautiful photos of Carleigh (from CaringforCarleigh)

My sweet nephew Drake's photos were taken by his nurses after he passed away

I see a lot of comments people give about Memento Mori photos to people who are against them 'Sometimes these were the only photos the families had' well that has not changed in some cases. In the old days when a person died they would go out of their way to pose them in special ways. Adults were propped up with stands and propped in chairs with devices to hold their heads up

Something like this

Adults were also posed in beds and in coffins with elaborate flower displays and frills to make it look as if they were sleeping.

Children were dressed up in their best, some of them in gorgeous elaborate gowns. Their parents would sometimes hold them

The children were propped and laid out in beautiful ways

Other family sometimes present. In some cases the mother would be shrouded or hidden from view and she would be what would hold the infant in place for a photo.

They also had the children beautifully dressed and ready for burial

Things are different and very varied today. This little baby is Nicolai (also known as Pi) his mom blogs at A Place of Rest

He's in a beautiful gown, reminiscent of how things used to be. I find Nicolai's photos so touching and beautiful in their simplicity. He's breathtaking.

Other children like Vylette above or my daughter below are just in clothing their parents supplied

However with modern times we can also have other photos focusing on certain things. Like hands, and feet (these photos were taken from google)

Different, yet each photo says the same thing. This person existed, this CHILD existed. They were beautiful and we mourn for them.

Gorgeous photos. Beautiful then and now.

The technology changed, how photos are done has changed. The meaning and memories and emotions behind the photos are the same now as they have always been.