Monday, December 21, 2015

Answered Prayers & The Road So Far: My Pregnancy Journey

I am in constant awe of how God answers prayers in a specific way.  Last night, prior to today's doctor appointment, my prayer was for CLEAR, absolute, and ACCURATE information.  Yes, Lord, I desire for my child to be alive - to have them safe in my arms this summer.  But trusting in Him means trusting that He is with me even in the bad.

This summer when we lost the baby it was weeks wrought with "maybes."  Maybe my dates were wrong. Maybe the growth will be better next week.  Maybe we will find the heartbeat in a few days. Maybe the heart just started beating and the rate will improve. Maybe it will be okay, the heartbeat will increase, and the baby will live.  Maybe the bleeding is normal.

So my prayer was that whatever is the status of this pregnancy, that it is made clear at my doctor visit. I don't want a maybe.  The past couple ultrasounds have shown a heartbeat BUT the very low end of normal. The growth is a tad behind (although that has been true of every pregnancy).  So the outcome of this pregnancy is still very much up in the air.

My regular OB sent me to the perinatal clinic for high risk patients. Often they consult - determine a plan for pregnancy - and send you back to the OB.  Last time they kept me on as their own patient for the duration of the pregnancy.  This place is critical to the health and safety of baby & me. Imagine my disappointment today when I find that I'm scheduled only for a consult and not for an ultrasound.

My nurse remembered me from last time AND recognized me from the Fraser waiting room!! I do so love those type of connections. As we discussed the plan for the pregnancy - including starting on blood thinner injections daily - I asked if we can be sure this is viable before going further.  She tries to do an abdominal bedside ultrasound.  This will not measure growth or even bpm - just verify the flickering heartbeat is there.  We find the baby but NO heartbeat.

She calls an ultrasound tech in and again, no heartbeat!! And I can't help but panic - and wonder "why aren't things more CLEAR?!"  They make room for us in the schedule to do a TV ultrasound in a room with the good equipment and a tech. While I wait, pantless, feet in stirrups, for 20 minutes for the tech to come in, fear consumes me. Would this really happen again?! I NEVER felt like something was wrong (I had the physical feelings of anxiety and fear but not the motherly instincts like a sense of impending doom).  Would I EVER trust my instincts again? Christmas will be ruined?!

Sunday, November 29, 2015

Ways We Celebrated Christmas

{This post is full of stuff from LAST Christmas, but as time goes on this holiday season I will be adding as I go. Hope some of these are fun, new ideas for you to try with YOUR family!}

We love Christmas around here. I'm that annoying crazy lady that starts listening to carols and watching Christmas movies before Thanksgiving. I was proud of myself for holding off till after Halloween to start watching Holiday movies actually!

Here are my words of advice - do what makes YOU the best mom you can be.  As in if cooking or crafting aren't your thing and don't make you happy, don't do it.  If you just aren't feeling it this year, that's okay.  Give yourself permission to know your limits and reduce your vulnerability by staying within them.  When making 800 kinds of Christmas cookies when I'm fried will cause me to yell at the kids and cry about all the dishes then I DON'T make them! I curl up on the couch and read a book to the kids instead. They won't remember "we didn't bake cookies" or "we never went sledding" as much as they may remember "Mom was always yelling."  This may not be a concern for you but the concept still stands.

Saturday, October 17, 2015

Our Special Needs Journey:Part 26 - So Much is Happening

(Our apple orchard visit seemed a good times to attempt a photo of all 4 kids but Bruce wanted to be held so I ended up in the photo (and I look super gross here), but my hubby was hard at work so he wasn't there and so we still haven't had a photo of all 6 of us in like 2 years.)

We're in a good place right now; albeit a very, very, overwhelmingly busy place.  Sundays are church and softball, Mondays Bruce has speech, Taylor has Behavior & Skills therapy, Dean & Julia see their skills therapists, then Julia has a 3 hour Adolescent Day Treatment class at Fraser (if you're counting that's 7 hours of therapy on Monday alone), I go to a 3 hour DBT class then the chiro, Bruce has an in home Behavioral & Occupational therapist here, then the girls and I go to BSF.  Tuesdays I have MOPS in the morning then Dean has Individual Skills Therapy, Julia has speech and a Social Skills group and then Karate.

Wednesdays I have a standing talk therapy appointment, the boys both have Occupational Therapy at Fraser, Julia has 3 more hours of Day Treatment, then the kids all go to church for Awana and Youth Group.  Thursdays Dean has an 8 am Social Skills Group then Julia heads to coop classes for the day, then Dan gets Julia from co-op, heads to Taylor's Social Skills Group in Eden Prairie, then to Karate.  Fridays Bruce has an ECFE Special Ed class and Saturdays Julia has Karate.  Somewhere in there we homeschool, attempt to sleep, and fit in doctor appointments. And by attempt to sleep I mean it is past 4 am, I haven't blogged in months, and still have so much to work on!

So the total hours of therapies alone is 24 and a half hours for the lot of us. The aggressive therapy is necessary right now, especially for Julia.  She's not "worse" per se but the gap between her life skills and where her peers are is greater now. Functioning a year or 2 behind at 7 years old is very different than functioning 5 to 7 years behind at 14 years old. It's getting to be a pretty big deal. Sigh. Autism is harder than I was ever prepared for.

Saturday, August 15, 2015

My Pregnancy Journey: Part 5 - A Special Kind of Luck

“I am leaving you with a gift—peace of mind and heart. And the peace I give is a gift the world cannot give. So don’t be troubled or afraid." -John 14:27

Here's what's on my heart tonight:

It's been a rough month. (And not just this whole pregnancy thing - there are other factors that have made this a difficult summer.) I can't seem to go about things the "easy" way.  The hyperemesis (morning sickness) was brutal. It was devastating, to say the least, that the baby had a slow heartbeat and we had to just sit and wait for the baby to die, which took another week.

After the baby no longer had a heartbeat 3 1/2 weeks ago, I took meds to induce the miscarriage to speed things along.  2 weeks later there were some complications (think: gross woman stuff), I was still so nauseous, and the pain was brutal.  To spare you further details, I'll just say I ended up at my OB's office 10 days after the start of the miscarriage process.

Saturday, August 1, 2015

Our Special Needs Journey:Part 25 - General Update for Past 4 Months

This is the longest I've gone between updates (4 months - I didn't think it was possible to be even MORE busy, but...  And I have spent all of the summer so far very ill (read these posts about getting pregnant - and losing the baby - and other complications).

-------------------------------- BRUCE --------------------------

Late June I brought Bruce in to our new developmental pediatrician (I've switched all the kids over to this great doctor at Children's Specialty Clinic and they each needed a full diagnostic appointment). His hearing has increased - the Eustachian tube that was originally narrow has grown as he aged. So, that is really wonderful news!

The Doctor said he's considering an Apraxia label (pending a follow up eval in 3 months) which is a motor speech disorder.  I'm not concerned because even in just the past couple months he has really expanded and improved his language! He's made so much progress and very much on the right track.

He's joined his siblings at Fraser and now attends twice a week for Speech Therapy & OT.  We also had our first Behavioral Therapy session today.  After a long qualification & diagnostic process we've finally begun our in-home sessions. This basically means that a therapist works with Bruce AND ME on some behavioral and sensory issues.  A lot if it is learning some appropriate parenting strategies & practicing putting them into place with the therapist present.  So much of what I'm learning applies to all the kids though, so it's a really worthwhile thing!

Sunday, July 26, 2015

My Pregnancy Journey:Part 4 - The Dark Place (Grief & Loss)

Damn You, Dark Place. I never wanted to see you again. I told you we're through. I demanded you leave me be. Yet you found me. You crept into my head and stealthily took hold of my heart.  It was familiar territory for you and you knew all the cracks in the walls. Getting in was easy. And while I know that God will carry me through any storm, I really didn't want this one to rage.

The pain. The deep, dark, lonely hurt. That anger I'm embarrassed to admit exists and the guilt that controls too many of my thoughts.  Guys, I'm hurting bad today. I KNOW God is in this, drawing me near, bringing me through to the other side, but I am so scared to go through this storm.

I've been here before. The thing is I'm not sure how long it will last. Already I'm doing much better than the days following Bentlee's death. The intensity of the pain is just as deep but the frequency is not as all-consuming.

Thursday, July 23, 2015

My Pregnancy Journey:Part 3 - Goodbye Without Hello

This morning I woke up 9 weeks (and 1 day) pregnant.  Tonight I am no longer pregnant.  The baby passed away some time between Monday and today, Wednesday.  Today's ultrasound revealed that Baby no longer has a heartbeat. She is now safe in the arms of God.

(I do not know the gender - but something I've learned with 10 losses is personalizing the child helps with grief.  I'm choosing girl because my hyperemesis/morning sickness is far worse with girls than boys in my personal experience.)

Late Sunday night I went to the emergency room to score some IV fluids and nausea meds (they are more effective in IV form for me).  I had lost 15 lbs (8% of my body weight), was dehydrated, weak, and could not stop throwing up or keep anything down.  I did feel much better after a few liters of fluid and a new anti-nausea med prescription. I've even been able to eat a bit the past couple days!

Thursday, July 16, 2015

My Pregnancy Journey:Part 2 - The Waiting Game

Today's ultrasound did not go well.  I'm 8 weeks and 2 days.  It has been over 2 weeks since my previous ultrasound.  In that time the growth of the baby has been equivalent to "5 days" and places me at 6 weeks and 1 day along.  That actually puts conception a week AFTER my first positive pregnancy test. Measuring THAT far behind is NOT good,

The other bad news is that Baby's heartbeat is really slow at 42 bpm; it should be between 110 and 160 for this stage of pregnancy.  The doctor told me not to be optimistic - at this point there is nothing that can be done.  I have another ultrasound scheduled for next week to check up on Baby - unless I naturally miscarry before then.

Tuesday, July 14, 2015

My Pregnancy Journey:Part 1 - 8 weeks

Today I am 8 weeks pregnant. That may not seem like a lot, but for my pregnancies, and the unique type of drama that accompanies them, 8 weeks is a long time.  It has been 5 weeks of hardcore anxiety, surprise, fear, delight, and sickness. 

Oh, the sickness.  Pregnancy is like being drunk.  Every single second of the day is that hungover feeling where your head is pounding, totally dehydrated, thirsty, and the all-consuming need to vomit.  However, this vomiting brings NO relief.  I simply throw up everything - which is often only stomach acid & bile because I'm too sick to eat - and have it coming out my nose and getting stuck in chunks at the back of my throat.  

I've lost 10 pounds in 2 weeks (where were those results when I actually wanted to lose weight?!) and feel completely dehydrated and weak.  It's causing headaches and there's this unending feeling of nausea. All that extra saliva cannot be swallowed or I'll throw up.  I can hardly breathe (my nose is always plugged but now mouth breathing is vomit-inducing). 

Monday, May 11, 2015

Busy Bags for On the Go Entertainment

We spend SO MUCH time in the waiting room at appointments (doctor offices and especially tons of therapies) or in the car.  With 4 kids it can be chaos getting out the door. We need coats, shoes, snacks, diapers, and entertainment.  So, to solve that last one we put together ready-made, grab-and-go busy bags.

I dug through the schoolroom and the kids' bedrooms and collected a much-more-massive-than-is-necessary slew of travel toys.  I stuffed the items in bags - some are geared towards my boys (6 and 2) and the others for my girls (10 and 13) but most are a mixture.  Before we head out the door we grab a bag (sometimes 2 if all 4 kids are going, but often the girls don't mind playing with whatever the boys have).

At present I haven't labeled the bags because the kids have fun with the mystery of it. The bags in the picture are actually thermal lunch bags I found at Michael's for $2 a piece.  I have a few more to pack up so I'll likely use some gallon ziploc bags or some cheap thrift shop find.  The various containers and pencil pouches were all randomly collected over my homeschooling and clearance shopping years.

Hope these Busy Bag/Travel Activities give you some ideas!

Friday, March 27, 2015

Our Special Needs Journey:Part 24 - The Joy in the Ordinary

Again it's been too long.  In our world no news is good news, as a general rule.  Life has been boringly ordinary as of late. And I love it that way. As I think of all that our family has been through an ordinary day like this one is right where I want to be. There is so much joy found in the ordinary, uneventful, everyday life.  Moments like this these:

 (This is the blissful start to my ordinary days.)

(This is how I end each day - with snuggles.)

I've had days, as I'm sure you have as well, that were NOT so ordinary.  In a not so extraordinary way. Days when your whole life changes and time stands still at that moment. And in the grief I wished for nothing more than to go back to one of those ordinary, but oh-so-special days.

To the ordinary day BEFORE there was no heartbeat on the ultrasound and my daughter died. Before I miscarried another child. Before there was abuse or heartache. Before I lost my home (okay, that turned out for the better, but it was still hard). Before my daughter was diagnosed with autism. And then my other daughter. And then my son. To before I found my son was deaf in one ear. Before that first period that lead to years of endometriosis pain. Before Dean had his first seizure.  Before my first binge-purge session due to body-loathing. Before the first time I found myself in such despair I began self harm (of which I am in remission).

Wednesday, February 11, 2015

Our Special Needs Journey:Part 23 - January/February Update

Since it's been awhile this is, as usual, pretty lengthy ( like anyone could ever describe me as pithy!) so I will sort by child to keep it as simple as possible.

----------------------- BRUCE (& ME) ----------------------------

The highlight of January for Bruce and me was our trip to Texas! We flew down a week shy of his 2nd birthday, barely qualifying for him to fly free. It was sooooo great to see some friends and family that live there (Denton is in the DFW area).

I put together a couple busy bags to keep Bruce entertained on the plane - and while we were there. Everything could be played with while sitting in an airplane seat (even with both of us sharing the seat one of the flights and not able to put the tray down). Here's a post about what was in all of them!

Monday, February 2, 2015

Ode to Toddler: Happy 2nd Birthday Bruce!

Often the response, when reflecting on how much time has passed and how grown up our kids are, is to exclaim "how did that happen so fast?!"  Not today. Today Baby Brucie is 2 years old! While I AM in total awe of how much he has changed in 2 years, and what a big boy he now is, I wouldn't describe any part of Bruce's life as "fast."

This is by no means a bad thing! Rather an astounding blessing! I wholeheartedly feel I have SAVORED these precious years with my child. He so completely compliments our family and we are all so in love with this Little Man.

 Photo Credit: Meagan Wanschura

Wednesday, January 28, 2015

Our Homeschool Journey: Sensory Friendly School Room

Thursday, January 8, 2015

Our Special Needs Journey:Part 22 - Post-Holiday Happenings

Happy New Year!

No "year in review" post (although in reflection I am proud of all our progress) or "resolutions" to share. Just an update on what I love to talk about most - my kiddos.

So if you're following our crazy-chaotic life you'd know it is not odd for me to go so long between updates.  Because, well, I'm crazy-chaotic-busy. I'm falling back into life after the holidays and wanted to share some pretty wonderful things happening in our lives!

[Side note - even when things are NOT wonderful I still share them. No illusions of perfection because God is at work in ALL times and ALL things. He is glorified in our suffering as much as our blessings. He promises perfection in Heaven and that there WILL BE affliction in our sinful world. I'm not complaining when I talk about the burdens. He may not bring every issue to a perfect resolution in THIS life (although at times He does and it is SO encouraging) but I am assured that He will ultimately. He is always at work.]

Bruce has had an eventful month! His crazy-cool purple cast is gone and he has re-acclimated himself to walking without it on his leg.  We returned to the allergist to do skin prick testing for almonds. The good news is he is NOT allergic to almonds and has a milk option for his sippy cup! The bad news is he hates it and refuses to drink it in any form.

For the most part I LOVE nursing, I do. There are a few times breastfeeding is physically painful. I'm not sure how to convince him to eat or drink other foods until he is fully weaned (which he is no where close to doing on his own). I'm not a fan of the whole slapping me in the face if I say no to boob. And I'm REALLY REALLY not a fan of the reactions of others and lack of support. I'm appalled how comfortable people feel saying hurtful things to me or telling me "it's past time to quit nursing."
[Here's a photo from this Fall. Breastfeeding a toddler is beautiful, not creepy. This is my photographic evidence of that!]

Wednesday, January 7, 2015

Cran Apple Salad

I love a good salad but definitely like to experiment with ingredients - a change from the basic lettuce, tomato, croutons, dressing... This salad was so good I ate it every day for a week!

Romaine lettuce, chopped
Fresh spinach
Candied walnuts
Dried cranberries
Crumbled bacon bits
Crumbled goat cheese
Buttered croutons
Sliced Granny Smith apple
Topped with Pomegranate vinaigrette

So simple, soooo good!