So not "Crunchy"

But I really want to be! I would make the worst hippie ever. I really love the idea of natural remedies and treatments. However, my skeptical and analytical side wants to see proof that things will work before I try them. With many "natural" cures there just aren't scientific studies to back them up. And some things can actually be quite harmful even though they are "natural."

However, I have taken a leap of faith over the past six months. Primarily with my personal oral care. Exciting, right?

I've been reading up on natural oral care remedies since I had to get several cavities filled a few years ago. I wasn't quite yet 30 and the dentist was already starting to talk to me about crowns if the cavities kept coming back. I was already doing the requisite twice-daily brushing plus flossing. I really tried to keep my mouth rinsed out and cleaned after eating sweets. And I tried to take my daily vitamins along with a mild effort towards eating healthier. But my teeth kept getting cavities. New ones would appear at every checkup. I was feeling defeated and just assumed that bad teeth were my reality, something I had just inherited and couldn't really do anything about.

Then I started reading up on natural remedies. Home-made toothpastes (these were appealing to my "crunchy" and "frugal" sides) and oil-pulling. But being the skeptic that I am it took me awhile to actually try these things. I first started out by adding baking soda to my toothpaste and focusing my brushing efforts on being more gentle and targeting the gum-line. Then I upped the crunchy-factor and started brushing 50% of the time with a mixture of organic sea salts and baking soda. And then I moved to all salt/soda completely.

What I found is that my mouth felt so much cleaner! I wasn't feeling a build-up of gunk by the end of the day. My teeth felt smooth! And my research (ok, excessive googling) shows that the salt helps to re-mineralize teeth and is actually less abrasive than commercial pastes. I really just liked the fact that I could mix up a month's worth of  "paste" for just a few cents using 2T of salt and 2T of soda. And when swished between my teeth at the end, it seemed to pull out any remaining gunk in my teeth. Flossing afterwards very rarely yielded any nasty bits (when that used to be the norm after brushing with commercial paste). I will say that the salt took a bit to get used to. And it does not leave my mouth with a minty-fresh feeling either. But my mouth does feel very clean and I can eat just about any food after without a weird interaction (toothpaste and orange juice, anyone??).

Yet, my teeth were still a bit sensitive so I started trying oil-pulling. Honestly, this was the one that seemed the most crazy to me in the beginning. Swishing oil in my mouth for 15-20 minutes? And not just any oil, but using coconut oil (which seems to be the flavor of the month amongst my crunchiest friends). To say I was skeptical would be a massive understatement. So I started reading to see what harm it could do. Because so many of these "natural" remedies are also potentially harmful, so I wanted to know what I was up against. Except, this one really had no dangers. The only possible downside I saw was potential yellowing of the teeth from using olive oil. Since I was going to use coconut oil that wouldn't even apply. It was truly one of those things where it wouldn't be harmful and may possibly help. So with that knowledge I started trying it.

I've been doing this now for about 6 months. I just had a dental checkup today. This is the first time in YEARS that I don't have any new cavities!! Ok, I do have a broken filling that will need a follow-up, but nothing new! They spent very little time scraping gunk off my teeth at my cleaning, my gums never hurt, and the hygienist and dentist both told me that I was doing a great job taking care of my mouth. This is the first time that I have ever had a great review at the dentist!! Honestly, the only things that have changed are basically the paste (salt/soda) and mouthwash (coconut oil) that I am using.

So for this skeptical wanna-be hippie, I would say that these two things are definitely worth trying! Your pocketbook and your mouth will thank you :) At the very least there is no harm in trying. And for those on food stamps, this is a great way to use normal "food" items for personal care. Another way to stretch those dollars just a bit further.

**But seriously. I am a mom and random blogger. Please don't take any of this as medical advice! Do your own research/googling first before trying anything. **

The Season of Advent

This year, the celebration of Advent has really hit me hard. The anticipation of Christ's birth. The promise of hope and redemption for all.

2013 started out with such hope and anticipation for me. We were consciously trying to have another baby. I was counting days and tracking signs. The last few days in January I was taking a test twice a day because I just KNEW that this was our month. And that first day of February those two pink lines answered back. The hope, the excitement, the anticipation of meeting this little person. A little pink heart was placed on the calendar on her due date. How appropriate.

As the weeks went on I would read up on fetal development. Hey, our baby has ten fingers & ten toes! Oh, look, we just grew ears today! We talked about baby names, made plans on how to fit two kids in our little house, and talked to Aly about the tiny baby in Mommy's tummy. That anticipation and hope soon turned to heartbreak and worry as we learned at the beginning of May that our little one would not be with us long.

And in August Aubree was born. Born into a silent delivery room. There were no cheers and no crying baby. Just silence, tears, and hugs as we spent a very few moments with out little girl before having to give her back. We went home empty handed and feeling broken. I feel that this is what God refers to in Genesis when he says that part of the curse of sin is that pain will be increased with childbirth. The physical pain of birth is no picnic, but most women do recover and some even go on to choose to do it again. Ha! But to have to endure that physical pain along with the death of your child is beyond imaginable. To be honest, the depiction of the birth of Christ as a silent event is a horrifying thought to me now.

It has been hard for me this year with the focus of Christmas obviously being about the birth of Jesus. The most joyous event ever. I am having a hard time seeing pregnant women or babies as my arms and my heart ache to hold my daughter. But I have been so struck by the story of Mary. I feel like I see her in a completely different light. I imagine the joy and anticipation she must have felt when she learned that she was going to have a baby. And not just any baby. She was going to be the one to give birth to the Messiah. The one who was coming to fulfill the promise of hope and redemption for everyone. And how her anticipation must have turned to heartbreak as she realized that in order for the world to be redeemed, her son was going to die.

However, it's not his birth that gives us hope. And it's not his death that gives us peace. It's the story of his resurrection. Jesus didn't come to die for the sins of the world and to stay dead. Jesus came to conquer death. Our hope is in the resurrection and the promise that this world is not all we have.

I won't lie, I am sad that Aubree is not here to sit in her bouncy seat and look at the tree all googly-eyed. Or to stare on as Aly "helps" to open presents for everyone. Or to snuggle up on the couch after a morning of busyness and nap the afternoon away. But she is getting to celebrate Jesus' birthday with the King himself! Can you imagine what the celebration must be like in Heaven?

And for Aly, I am having such a hard time reigning in the presents. She's at that age where the things that she enjoys are still so cheap! Crayons, markers, finger paints, new coloring books. They will keep her entertained for hours and only cost me a few dollars. And yet I am constantly reminded of Luke 11:13 as I shop for her, "If you then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give the Holy Spirit to those who ask him!"

Have Patience

Being patient, kind to others, and consciously making an effort to not be selfish seem to be my themes this year. Funny how these lessons really sink in as you try to teach them to a child. I find myself being convicted frequently by my own words.

Aly has been having a rough time traveling in the car lately. Even though she's not quite hit 25lbs yet (but she's close!!), she did hit the height limit for rear-facing in her car seat this month. I was hoping that turning her seat around would make traveling more pleasant. But I am learning that my daughter is just as impatient as I am. Red lights make her WAIL and scream until the car starts moving again. It was very difficult when she was rear-facing and couldn't see the lights, but now that she can see them with me, we've started to make a game of it.

Me: Aly, what color is the light up there?
Aly: It's  red!!
Me: And what does red mean?
Aly: It means: Be Patient. Wait your turn!
Me: That's right :) Look at all the other cars going. They waited patiently for their turn, and now they get to go. Oh look, now our light is green!! What does that mean?
Aly: It's our turn! We can go!

We have this conversation almost every time we come to a traffic light. And even when Aly is not in the car with me, I find myself repeating the same information. It's not my turn, I have to be patient. Take a minute to just relax. It will be my turn in a minute, but for now I get to sit still and be quiet.

This has also transferred over in to how I view the other drivers around me. When I am in a hurry and someone JUST WONT MOVE OUT OF MY WAY, I am immediately reminded that I need to slow down and not speed, that there are other people on the road with places to go and people to see and my personal journey is not any more important than theirs is. And that jerk that just cut me off? Maybe that person is having the worst day of their life and completely zoned out, not thinking about traffic. Lord knows I was in that same place many times over the past six months. Or maybe that person is late to work, or needs to rush home to something very urgent. I find myself thinking more about the other PEOPLE on the road, and praying for whatever circumstances may be happening in their lives right now.

It's amazing to me how our minds can be trained to think like this. At first it was such a conscious effort to stop and redirect my thoughts towards compassion and patience. But slowly over time it is becoming a habit. I hope that I can help to teach Aly to be patient and caring for those around her. And the best way to teach her is to model it myself.

Why I Gladly Pay Taxes To Support Welfare

"I am tired of other people living better than I do, on MY dime!"

Ughghg. I am so sick of hearing this (mainly from my Republican/Tea Party friends). They perceive that people living on assistance have an easy life. After all, they are obviously not working, right? If I didn't have to go to work and could sit on my bum eating bon bons all day, life would be awesome!

But that's not what life on assistance is like. Sure, there may be a scammer here or there, but the reality is not pretty for most people on assistance. We like to hold up the example of the fraudsters and claim everyone is just like them. But that would be like saying Fred Phelps represents most Christians, or that Lady Gaga is a what most 30-yr old women are like.

I would hope we can all agree on assistance for the elderly and disabled. As a civilized society, I don't feel we should be seeing our elders living on the streets, or our disabled locked away in institutions. What seems to really burn people up are the "fraudsters" and "moochers." So how many people on assistance are scamming the system? This federal study says 91% of all assistance recipients are either 1) elderly (53%), 2) disabled (20%), or 3) working-poor (18%). Ok, then that means 9% of the recipients are able-bodied and should be working, right? Except the majority of that 9% is receiving unemployment benefits (meaning they did work at some point), receiving medical assistance, Social Security survivor's benefits, or Social Security retirement benefits for those 62-64 years old. It is approximately 2% or less that are receiving some kind of assistance that are otherwise able-bodied and able to find employment.

It is easy to hid behind generic statistics and not see the reality of a situation. So I will break down my "reality" using actual data for the county where I live. I am in Jackson County, MO. The average household income for four people is $71,200. Typically this means two adults earning $35,600 ($17/hr roughly) each and two children. To qualify for assistance, the entire household must be earning much less than the average. Let's say we have two adults each working for minimum wage and together they earn $30,576 per year. This is less than half of the average, so surely they would qualify for some assistance. Let's see:

1. Housing - The average two-bedroom apartment in this county costs $780/month or $9,360 per year. That comes out to 13% of the average household's income. For non elderly/disabled, rent vouchers are available once rent exceeds 40% of the household's income. That means a four-person household has to be earning UNDER $23,400 in our county to even begin to get housing assistance. But for our family working at minimum wage, rent is taking up 30% of their monthly income and they don't come close to qualifying for assistance.

2. Food - To even begin to qualify for food assistance, a four-person household can not have an income higher than $29,064.  The household also can not have more than $2,000 in savings. Let's be generous and "give" the family $400/month for food - $100 for each week. To qualify for that assistance, their monthly income can not exceed $893, or a yearly income of $10,716. Our family does not qualify for any assistance, but food is taking up 16% of their monthly income.

3. Utilities - A family of four applying for LIHEAP would have to earn $2593/month or less (so our family would finally qualify for some help here). The max benefit is $800 to help with winter heating bills (available after Nov 1st), and possibly $300 in crisis funding during the summer - but you have to have an active disconnect notice to qualify for this assistance. Let's assume an average electric bill of $75 and an average gas bill of $50 for that two bedroom apartment. That would be $125/month for heating & cooling combined, or $1,500/year. $1,100 in max assistance wouldn't even cover all of the utilities.

This is just barely scratching the surface here. Most of these apartments don't have laundry facilities, so families are in laundromats washing clothes at $2.00/load (that is to WASH - let's assume they take the clothes back home to line-dry). We only have three people in our family and I do four loads of laundry per week. That would be $32.00 per month just to operate the machine at the laundromat. And what about buying those clothes in the first-place?

What about transportation? KC is not the most public-transit friendly place around. I live in a suburb and commute 10 miles each day to work. To find a bus that would take me there, I would have to leave my house two hours before my shift started and I would not arrive back home until at least an hour after my shift had ended. It may be faster just to buy a bike and ride it each day if I couldn't afford to drive.


But let's get back to that average household income. $71,200 for a family of four. How much do they pay in Federal taxes to support these benefits that others are receiving? At $71,200 (assuming NO deductions), they paid $9,854 in federal taxes if they are married and filed jointly, or 14% of their income. But not all of those taxes go to assistance programs. Here's where that money goes:

So breaking down that $9,854 in federal taxes, only 12% is going towards "Welfare" (Safety Net Programs), or $1,182. And our family earning $30,576 working two minimum wage jobs only qualifies for $800 in assistance, but has paid $3,700 in federal taxes, with $444 of that going back to the very assistance programs that helped them.

So do I think that someone living on assistance, on my "dime" of $1,182 per year, is living better than I do on $71,200? Absolutely not! No one denies the fact that fraud exists. But please, let's all give up the stereotype that those on assistance are lazy and just out to scam the system. It does nothing to help the true problem of fraud and merely lets us mask the fact that there is a deep and true need in our society for these programs.

It's Finished

Today we went to the children's hospital for Aubree's autopsy report. I nearly burst into tears walking in to that place, but managed to hold it together. I was able to see the same doc that had treated me and the same neonatologist that was with us when Aubree was born (he personally took her back to the children's hospital for the autopsy when we left the hospital). Seriously, I have never had such a wonderful caring team of doctors before. The actual autopsy showed that she passed away due to her heart stopping, which is what we had suspected. It was only beating at 37 bpm the last time we had seen her on ultrasound so this wasn't a surprise. They did find some other things wrong with her heart that couldn't be seen on the ultrasounds and her other organs had issues related to her heterotaxy. But nothing really significant in light of her more complex issues. The placenta tested fine and there were no clots or infection found that would have contributed to her passing or cause concern for future pregnancies. Most of my questions were for the geneticist. She said that Aubree got two defective "nodal" genes, one each from DH and I. The nodal gene is what tells things where to go early in development when there are just a couple of cells. Having one defective gene is apparently really common, but having two could have caused Aubree's severe heterotaxy (but they can't be certain since apparently there are 60 genes that determine "sided-ness" and they only can test for a few).

It was recommended that DH, Aly, and I get heart echos and ultrasounds of our abdomens to see if any of us have misplaced organs. If we do, our chances of having another baby with heterotaxy are about 50% since DH and I both seem to have this defective gene. If not, then our chances of having another baby with heterotaxy go down about to 5%. Even if we do have misplaced organs (meaning we also have heterotaxy), most forms of heterotaxy are compatible with life and things would most likely be just fine. The chances of having another baby with issues as severe as hers (the worst scenario of heterotaxy known) is still around 1%. So we will do the tests - mainly because we have reached our max OOP and I really want to know that Aly is ok, and that DH and I are ok. But in all likelihood we won't have to worry about this issue again. Unless we hit the freakin' genetic lottery. In which case, we should also hit the real lottery just to even out the karma scales.

The doctors all said they can't tell us when to try again, but that they all personally think we are good to go whenever we feel ready. And they said that my regular OB can schedule all my ultrasounds at CMH in the fetal health center and they routinely assist with care for healthy babies after situations like ours. So we will for sure do our 12-week scan and 20-week anatomy scan there, with an additional heart echo around 24 weeks just to be completely sure.

I went in to today with a really heavy heart, but I walked out of that hospital with a sense of relief and a feeling of closure. Her due-date was yesterday, and her autopsy today. Aly was born the day after her due date and I'd had in my mind that Aubree should have been born the day after her "due date."  The autopsy report feels like the last official thing we did for Aubree as her parents. Now life can move on.

Two Months

I've been absent from here for awhile. I went back to work three weeks ago and life has pretty much resumed it's normal pace. In a weird way it seems like DH and I are back to where we were at the beginning of the year. We set out this year with the goal of having another baby, and even though we had her it seems like she never was here. Kind of weird to be starting again nine months later and feeling like things are right back to where they were.

I've really been handling things well so far. I could see new little babies or pregnant ladies and not run crying from the room. Oh sure, I felt a tinge of sadness, but it was ok. But as we got closer to October, I started feeling more & more sad. Today was Aubree's due date, and we got the call last week that her autopsy report is in and the doctors want to meet with us tomorrow. We should be going home with a new baby, not sitting in a conference room discussing her autopsy. I am hoping that we don't hear anything we didn't already know about her. I hope to hear that Aubree passed from complications due to her severe heart defect caused by her heterotaxy, and that Mike and I did all that we possibly could for our little girl. But babies with heterotaxy usually pass away in the 1st trimester, so part of me is really worried that this is somehow related to my first miscarriage and that something is wrong with me that keeps killing my babies.

This week has been a really bad week. It started on Tuesday, and as the week progressed I got more & more sad and angry. Sad that my baby is not in my arms like she should be. Angry with the world for going on with life like normal. Sad that it has been two months since I felt her kicks and rolls, her dancing to daddy's music, her sudden jolts and kicking at the sound of my alarm in the morning. I miss the giant belly that made it impossible for me to sleep, or sit, or walk. And vainly, if I can't have the baby, then why the hell do I have to keep the smooshy tummy afterwards? Yet part of me loves that stretch mark on my stomach that I know was left by Aubree. She WAS here. She WAS real. She IS my baby.

Someone asked me this week if I was "all better." Another person asked Mike and I if we would have more children. These really threw me for a loop. I don't know if things will ever be "all better." Part of me will always miss Aubree. She is our daughter, the same way Alyvia is. She had her own personality - she loved green chiles and dancing the night away in the desert air when we went to visit great grandpa in New Mexico. She loved to dance while Mike played the guitar and sang, yet she always stopped as soon as he would place his hand on her. How she knew the difference between his touch and mine I will never know, but she calmed immediately whenever he would speak to her and put his hands on my tummy. Aubree liked when I would rock with Aly on my lap and read bedtime stories, but she would kick Aly for encroaching on her space. Aly loved to pat my belly and talk to her sister.

Having another baby won't make things all better. No one will ever replace Aubree. And to be honest, the thought of going through another pregnancy is absolutely terrifying. Through the wonderful support groups I have found over the past year my eyes have been opened to just how many things can go wrong with a pregnancy. And I've come to realize just how very little I can do to prevent those things from happening. Most fatal defects are complete random chance, and not the fault of a mom drinking caffeine or eating a lunch meat sandwich. No matter what rules there are and how careful a person is, the truth is that the scariest and most lethal defects are just random chance. If and when we decide to have another baby I know that facing pregnancy itself will be facing one of my biggest fears. It will be the choice to allow myself to be put in the position to lose everything again, and to be willing to face that risk in order to hold a living child in my arms.

And yet, even knowing the outcome, I would choose to walk this road again.  I love my daughter and I am so thankful for the time we had with her. I am thankful that we life in a time when we could discover her challenges and prepare to face them. We knew that each day was a gift and we tried to cherish each one. Our 31 weeks with her far surpassed everyone's original estimates. We were able to spend an additional three months with our daughter, and we know that she directed her story and went on her own terms.

Aubree, I hope you have really enjoyed your last two months in Heaven. I hear that time is not the same there, and I hope all you know is a time when we are already together with you.

Back to Reality

The last six weeks have been a surreal mix of pain and grieving for my baby mixed with joyful moments of connecting with my two-year-old and just resting from the craziness of life. Aly and I have really enjoyed this time together. We've sang songs, played games, gone on trips, shopped, run around at the park, and just generally had a great time. I think I would love the SAHM life! Too bad it doesn't come with a paycheck & medical benefits like my real job does ;)

But today was the day I had to go back to that real job. All last week I was in a bad mood with DH. I couldn't even express why I was so upset. I was sad. And mad. I had just gone through maternity leave, but had no baby. None of my normal work clothes fit because I still have the smooshy tummy, but no baby and no breast feeding that helped me lose all the weight with Aly. Normal cycles returning left me feeling moody, bloated, and just generally unhappy with myself. And then yesterday DH broke his foot! Poor guy. And then Aly didn't feel like sleeping last night and was up just about every hour screaming about bad dreams and scary things in her room. I woke up in a sleep-deprived fog this morning and stumbled around helping DH get ready for work and getting myself ready, only to still make it to work a couple minutes late (ughghg). And then I spilled black coffee on my white shirt. And then I had 10 complaints waiting for me (translation: it's going to be a BUSY day!).

And, and, and.....that's pretty much how my day went.

After feeling a bit sorry for myself, I realized that being in a sad mood was only going to make the day worse. I could continue my little pity-party and chose to see every little inconvenience as another one of life's cruel jokes, or I could choose to change my attitude and try to be happy. To look for the joyful moments or purposefully create some if needed.We've been working with Aly on having a good attitude (heaven help us, she's 2 going on 16 with these mood swings!). We tell her that we need to have a happy heart and a good attitude. Today I found myself repeating those words to my own heart.

I think the things that frustrate me the most as a parent are when my child struggles with the same things that are most often my own weaknesses. It's amazing how little patience I tend to have for her in these areas, when they are really what I dislike the most about myself (and the things I tend to gloss over or excuse myself for). Today my heart was reminded of Matthew 7:1-5 (The Message)

"Don’t pick on people, jump on their failures, criticize their faults— unless, of course, you want the same treatment. That critical spirit has a way of boomeranging. It’s easy to see a smudge on your neighbor’s face and be oblivious to the ugly sneer on your own. Do you have the nerve to say, ‘Let me wash your face for you,’ when your own face is distorted by contempt? It’s this whole traveling road-show mentality all over again, playing a holier-than-thou part instead of just living your part. Wipe that ugly sneer off your own face, and you might be fit to offer a washcloth to your neighbor."

Guess it's time to model the correct behavior for my daughter. And choose to find the joyful moments instead of letting myself get consumed in a pity-party of celebrating all that is going wrong. Even with all that's gone wrong over this last year it is still easy for me to see that we are blessed beyond measure. There's always someone that has it "worse" and someone that has it "better" than we do. But comparing myself to someone else or to what I think is the "ideal" only ends up poorly.

So tonight I choose to go to bed with a happy heart, thankful for this day.

Month One is Done

We had our little girl one month ago. The pain is gradually fading and now I can look at her pictures without crying. I made a collage of pictures to print off for her service and it's framed and set out in the living room. Aly loves to sit and look at the pictures of her sister:

The top center and bottom pictures were taken by Amanda. We absolutely LOVE the photos she got for us! The top corner shots were taken by Mike just minutes after Aubree was born. I love the picture of her head. It's the only picture we have of her hair. This is how much hair she had at 10 weeks early!! She would have had a full head of black hair just like her sister if she had made it to full-term :) And that foot...that was the foot that tried to break my ribs. Oh how I love it :)

It seems so strange that she's been gone for a month already. I was looking back at some of the goals I had set back in December for 2013 - one of them was to have another baby. I guess I should have been WAY more specific about that one, since I really wanted to keep her and not just "have" her. I knew Aubree was on her way even before those two lines turned pink that first weekend in February. She was very much wanted and planned for. Ok, if you know me, the "planning" part of that last sentence wasn't a surprise.

The last few weeks at home for me have been really good for our family. Things are much calmer, relaxed, and happy. I've been able to spend a lot of time resting and recovering. It's been kind of hard for me to actually sit down and take it easy as most of the time I feel ok, but I am quickly reminded that I need to let my body heal since I did just go through 3/4 of a pregnancy and delivery. This down-time, though, has really let me spend some quality time with Aly. We've been cuddling on the couch and watching her favorite Disney Jr. shows (mommy now knows ALL the songs!). We've played tea party and princess dress-up. We went shopping and got some puzzles to put together. Aly has been helping me with cooking dinner most nights and she's loved it! She helps me take care of Lucy in the mornings. All of these things that I usually rush through on my way to work or in the crazy minutes when I first get home. It's nice to be able to slow down and include Aly more, and to see how much she is growing and maturing.

The week after next I go back to work and life returns to our new normal. Normal life full of busy schedules and rushing around. But, I am kind of ready to get back into familiar territory after the agonizing uncertainty of our life since May. Back to a life that I can "control" or plan for. Yeah, right. But I am really going to miss  morning cuddles on the couch and naps in the afternoon.

One Month Ago Today

Was the last time we saw her sweet little face. Sucking on her thumb, wriggling around and trying to evade the ultrasound wand, funny little heart beating in it's own way. This wasn't our best set of pictures, but obviously they are absolutely priceless to me. I could have stayed there all day just watching her.

Three Weeks

Oh man. This week has been rough. I think part of the shock is wearing off. Emotions are rushing in, even when I don't want them to. Dreams are sneaking in and making it hard to sleep. The rest of life has settled and moved on.

And then I get snagged back to reality by the phone call from the hospital to pre-register for delivery. Or the call from the other hospital asking me to do a customer satisfaction survey from our stay (the hospital was amazing, btw, but having the survey people call me completely sucked). And the babies have started arriving. I knew of over 20 women having babies this fall. In the last three days, the first three have arrived. Thankfully all had uneventful arrivals, and moms and babies are all fine. But I've done some facebook filtering for now. Not that I am not happy for these families (honestly, I am - any new baby is a wonderful blessing). I just don't know what my emotions are going to do when I log in to FB and scroll through my news feed. And for every mom that delivers, a new pregnancy announcement is made. HOLY COW! Is it just the season of life that my cohorts are in, or is there some serious baby boom going on?

I hope that we can shortly rejoin the ranks of those celebrating new life. Seems kind of callous to talk about it so soon after Aubree left us. But I know this isn't the end of our story. In my heart I keep hearing the lyrics of this song over & over:

"Let me see redemption win, let me know the struggle ends, that You can mend a heart that's frail & torn. I want to know a song can rise from the ashes of a broken life, and all that's dead inside can be reborn. 'Cause I'm worn...."

I know there will be a rainbow at the end of this storm. Not that anyone will ever replace Aubree in our lives. But I know our family is not yet complete. So for now, we wait. Time to heal physically and emotionally. Time to rest from the craziness and business of normal life (with me working full-time and only seeing Aly 2-3 hours per day when she's awake). Time to regroup, organize, and plan for what's next. Time for DH and I alone - time that we have desperately needed.

For now, I'm working on cleaning out our closet. DH now has a shoe rack that holds all of his shoes! And we have enough hangers for all our clothes. I'm trying to find the small things in life to celebrate along this journey. Thankfully Alyvia has responded well to spending so much time with me over the past three and a half weeks. Her attitude has improved drastically, and she has been much more affectionate and cuddly with me (which for her is out of character - she's fiercely independent!!).

Guilt

Isn't that part of this natural grieving process?

Right now I am feeling a bit guilty. Guilty for feeling so exhausted and done with the pregnancy, when in reality I should have been enjoying my last few days with her. After our appointment on the 5th, I was DONE. I wanted to have her and be un-pregnant as quickly as possible. It was getting horribly painful, physically and emotionally. Constant contractions. Polyhydramnios that had us measuring 40 weeks when we were only 30. Unable to breathe because she loved to keep her left foot pressed up against my right lower rib. And when I say "pressed", I mean "pushing on it so hard I SWEAR she was going to break the bone at any second". Seriously painful. And the emotional roller coaster of always knowing we were on the brink, but never really knowing when our world would really come crashing down. After dealing with the pain for 15 weeks, more than three months, I was done.

Little did I know that just a couple days later I would be laying on the couch trying desperately to listen to her heart beat with a stethoscope and hearing only silence. "No", I told myself, "You are just being paranoid. Her heartbeat is funny. It's slower than yours. You are just missing it."

Only, I wasn't. She was already gone.

I WISH I had gone in to the hospital at that point. Even though I knew she was gone, maybe I still would have been able to see her in a better state. She was gone for several days by the time she was born. Her poor body was in really bad shape, and I was absolutely not prepared for that at all. In all this journey, my one desperate prayer was to be able to meet my baby alive. Not only did I not get to meet her alive, I never even got to see her beautiful face completely whole.

If only....

If only I had gone in on Thursday when I felt bad and stayed home from work. If only I had gone in on Friday when I hadn't felt her move. If only I had gone in on Saturday when I couldn't hear her heart beat. 

If only....

Two Weeks

Today marked two weeks since we had our daughter. It is surreal - almost as if it didn't happen. Our house is back to "normal" and life is marching on.

Two days after we had Aubree, we had to make arrangements for her with the funeral home. The hospital had given us back all of her clothes before we left and I really wanted to keep the actual outfit that she wore. So I picked out a nice soft pair of pajamas, a sweet matching hat, and a stuffed teddy bear to take to the funeral home. I wanted her to have a comfy outfit to rest in and she needed the bear so she wouldn't be alone. That moment was really hard, handing her outfit over to the funeral director and signing all the paperwork.Yesterday the urn came in, so today I took it up to the funeral home. They transferred her ashes for me and I was able to bring her home.

For now I have placed the urn on our mantle right next to the pumpkin we used for her pregnancy announcement. Sometimes I wish I could rewind life and go back to February or March for just a minute. Back to when I could just enjoy being pregnant and relive the excitement & anticipation of having another baby. I feel like part of my innocence is gone now and I will never be able to look at a pregnancy the same way again. While friends anxiously await the results of their anatomy scans to find out if they are Team Pink or Team Blue, I hold my breath and pray for normal anatomy (heart, brain, lungs, etc).

Emotional week

We had our little girl 10 days ago. We said goodbye 10 days ago. I have to keep reminding myself that it's so recent, because it feels like it was a lifetime ago. While I am generally feeling better physically, my body quickly reminded me that I did just go through giving birth last week and re-painting my room probably wasn't the best idea right now. Oh well, I love the nice, new, refreshing space. I needed some kind of change.

And this week, all I've seen on FB were posts about little ones going off to kindergarten. I should have had a little one going off to kindergarten too. My first pregnancy loss was early in 2008. I should have had a 5-yr old. I should be buying back to school supplies. I should be going to meet teachers, and packing a backpack and picking out special outfits in anticipation of that first day.

Instead I feel like I am missing out on a lot of life right now. Seeing life through the eyes of an excited little kid. Rocking a newborn in the middle of the night. Thankfully I have a 2-yr old that is keeping me busy :) But I hate that I feel like she is missing out on getting to know her siblings. I hate that I am missing out on getting to know them.

This morning I was uploading the last CD of pictures we have of Aubree. The ultrasound we had just days before she passed. Her poor face was so swollen. Aly came over to ask what I was doing, and saw the pictures. "That's Baby Aubree!!" she said, so excited to see her sister. So I pulled her into my lap and we looked through all of the pictures. "Awww, look at Baby Aubree!" "Pretty baby!!" She had so much fun looking at her sister. It was the first time she has mentioned her since she had told me that she was gone.

One week down

Saying goodbye

Yesterday was a really hard day. When big life events happen, I tend to think "This same time last week, I was ____." Yesterday was one week since I had Aubree and we said goodbye. All day long I thought about her delivery, holding her, and then letting her go.

In some ways, it feels like we never even had a baby. My belly is nearly gone. All the maternity clothes have been boxed up and put away. We knew she wasn't coming home with us, so there was no crib set up or clothes washed. No car seat installed in the car. No bottles and blankets set out. Ironically, we are still waking up in the night but not because we have a hungry baby crying. A storage tub was purchased for all of Aubree's things, which now sit in my closet. Alyvia has not mentioned her at all. I was wondering if she would ask, but she has not even seemed to notice.

Aubree is just...gone.

The flowers are fading and the mail has nearly stopped. The rest of life is moving on and I just feel stuck in some weird kind of limbo. We had months to prepare for this, and in some ways it is nice to finally be on the other side of it. Not knowing when the end would come was starting to really get to me. But now that it's over, I feel weird. Like life should be moving on but I just don't quite know how. Where do we go from here?

Another Birthday to Celebrate :)

Poor Aly. Over the past couple of months she has been passed around to friends & family while DH and I dealt with everything for Aubree. I even neglected to do a birthday party for her (she's two - she wouldn't really know, right?). Thankfully, some very kind friends stepped in and asked to throw her a princess party (complete with a bounce house!).

Showing off her new party dress and pretty headband :)

She was SO EXCITED to have everyone singing for her. But she just couldn't get the hang of putting up two fingers instead of just one ;)

My favorite picture of the two of us. It is so hard to get her to smile straight at the camera!

She was definitely spoiled by all our friends and family. And I think she felt very special being the center of attention for the day :) She kept telling everyone she saw "It's my bursday!! It's Aly's bursday!!!"

A Birthday Story

After our appointment last week, I was feeling very discouraged. It was very obvious from the ultrasound that Aubree was not doing well. Her heart rate was down to 37 and her swelling had drastically increased. I didn't ask at the time, but I had made up my mind to ask this week for us to schedule a birthday for her. I was just so tired and ready to be done. I wanted to know there was an end in sight.

Only Aubree had other plans.

Wednesday night she had the hiccups and was moving all over the place. I was feeling bad about wanting to schedule her birthday. I really wanted her to come on her own terms. Little did I know that would be the last time I would feel her move. Thursday morning I woke up with horrible contractions and stayed home from work. Just when I thought I should call the doctors and go in, I started to feel a bit better. Friday I ended up going to work but I still didn't feel her move at all. I was still having contractions and sometimes thought I felt her move around, but was never really sure. On Saturday I started to feel sick and have horrible itching all over. Dr Google said it was most likely a liver issue for me and a sign that my body was no longer handling the pregnancy well.

Monday morning I was getting Aly ready to go to grandma's while we went to our doctor's appointment. She was being ornery when I tried to change her diaper, and she kicked me really hard in the stomach. I told her she had to be nice to Baby Aubree. "No, mom, Aubree's gone." I looked at her and felt a bit sad, and said, "No, honey, she's right here" as I put my hands on my stomach. Aly just looked at me with a very serious expression and repeated "Nope. She's all gone." I know she was just being an ornery little kid, but part of me knew she was right.

At our appointment, the nurse and doctor confirmed that my liver was having a hard time processing everything. Unfortunately, we found out it was due to the fact that Aubree had already passed away. The ultrasound confirmed she had no heart beat. The ultrasound tech left and returned with the doctor, who confirmed that Aubree had passed away several days before (we are guessing Thursday or Friday). They were very kind, and presented us with our options. We chose to go back to my regular OB and to deliver at a hospital closer to home. While we could have stayed at CMH, I didn't want to be there and be so close to the NICU, knowing that we wouldn't be going there.

We came home for a bit and made arrangements for Aly, packed our bags, and headed over to the hospital. We stopped to get an outfit and some things for Aubree and to have some dinner first. We got checked in to the hospital and saw the doctor, who said I wouldn't need to start the induction that night but said we could stay if we wanted and they would start in the morning. I chose to stay and asked for some medicine to help me sleep since I hadn't really slept in days.

At around 2:30 I woke up with painful contractions. By 3:30 I asked the nurses for some medicine to help me keep sleeping. They confirmed I had gone into labor on my own, so they got me an epidural and some more medicine to help me sleep again. I woke up again at 9am, and they told me I was ready to go. The doctor came in and broke my water, and by 9:34 Aubree was born. Remind me to do this next time. By far the best way to labor is just to sleep through it! 

Aubree came exactly two months before her due date. She was 4lbs 8oz and 16'' long. Unfortunately, since she had been deceased for a few days, most of her body was in bad shape. I was not prepared for that at all. But the nurses helped to clean her up and dress her which helped a lot. She had a perfectly round little head, and perfect little hands and feet. We were able to hold her and spend eight and a half hours with her. Our families were able to meet her and hold her as well. We got pictures taken, hand and footprints made, and sweet molds of her little feet. Except for getting her foot molds taken, she stayed with us the whole time and was always held.

Around 4pm we started to talk to the nurses about what arrangements we needed to make for her. We knew the time was coming to let her go since her poor body was changing so quickly. As I held her, her eyes opened for a minute. It was as if she was saying goodbye. I placed my hand on her head and rubbed it like I used to do with Aly to put her to sleep, and Aubree's eyes closed again. That's when I knew it was time to let her go. We were able to keep her until 6:03 when the nurse came to take her away. That was, by far, the hardest thing I have ever had to do.

Shortly after she left we were discharged to come home. I just couldn't stay in the maternity ward after she was gone. It was nice to be home and to sleep in my own bed. And, in a way, it was nice to know that part of our journey was over with.

"All that Love could do was done"

One of my biggest fears throughout this process was having her stillborn. I wanted so desperately to meet her alive. But being on the other side, I am taking a lot of comfort in the fact that she went on her own terms. DH and I never had to make difficult decisions regarding interventions for her. She was never poked, prodded, or in pain. For her entire life, she was held and carried. Even though we were sad about losing her, our time with her was full of so much peace and several moments of happiness. We gave her every opportunity that we possibly could and we never gave up fighting for her to have a chance.

Even If

I used to hear this song on the radio as I drove around town, but I never really stopped to listen to the actual words until a couple months ago. This song really relates my heart and my feelings right now.

"Even If"

Sometimes all we have to hold on to
Is what we know is true of who You are
So when the heartache hits like a hurricane
That could never change who You are
And we trust in who You are

Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come

Lord we know Your ways are not our ways
So we set our faith in who You are
Even though You reign high above us
You tenderly love us
We know Your heart
And we rest in who You are

Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come

You’re still the Great and Mighty One
We trust You always
You’re working all things for our good
We’ll sing your praise

Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come

You are God and we will bless You
As the Good and Faithful One
You are God and we will bless You
Even if the healing doesn’t come
Even if the healing doesn’t come

Winding Down

Another sad appointment yesterday. To start, we had to wait two hours past our scheduled time (!). I think it's because another family was meeting with the full team of doctors. I can't imagine having their job and having to give this kind of news to families all day.

Only good news: my body is still handling this pregnancy well. No issues with blood pressure, proteins, or swelling. Aubree is a different issue. Her heart rate is declining more at each appointment. It was down to 37 today. Her body is retaining more fluid. I can't even bring myself to upload the pictures that we got - her poor face was so swollen. She's still moving around but her movements are slowing down as well.

I am starting to have a lot of anxiety about the unknown future. I've pretty well come to terms with the fact that she won't be coming home with us. But not knowing how much time we have left has me on-edge. As someone who takes comfort in planning and preparing, not being able to do that is very difficult.

Drama Queen

I woke up early this morning with painful consistent contractions. Changing positions didn't help them go away, so I got up and drank some water, ate a banana, and took a hot shower hoping that would help. We had a volunteer event at work so I went to help stuff backpacks (we did 800 in two hours!). Staying busy did distract me for the most part, but once we were finished I was aware of being in pain again. And through it all I wasn't feeling Aubree move. I decided to go home, drink more water, and lie down to see if that would make the pain stop. After another couple of hours with no change and still not feeling Aubree, I called DH and told him I thought we should go in just to be on the safe side.

Nearly three hours later we got confirmation that I was having regular contractions, but not because of labor starting (YAY!). We also got a quick ultrasound to check Aubree's heartbeat since monitors won't pick her up. It was at 41 bpm, which is lower than Monday, but the process of scanning her seemed to wake her up and she's been dancing around ever since. The doctors think the contractions started up because of the extra fluid I'm carrying now and my body being stretched to the max. They called in some prescriptions for me and let us go home.

When I went to the pharmacy to get my medicines, they told me the doctor had prescribed 5mg tablets. They only had 2.5mg tablets there and couldn't get the 5mg tablets until Monday. I can't really wait until Monday to start my medicine, so I asked if they could fill the prescription using the 2.5mg tablets and I would just take two of them. The pharmacy tech told me no, but I was free to call around to other pharmacies to see if someone else could fill it for me (she wouldn't even call their stores' other branches!!). So I spend an hour calling around, but no one has it. NO ONE. Finally I call the first pharmacy back and by chance got the head pharmacist, who said that it wouldn't be a problem at all to fill the script using the 2.5mg tablets. Of course.

More Bad News

A couple of weeks ago we met with the doctors and decided to attempt a medication that would raise my heart rate in the hopes that it would have the same effect on Aubree. Unfortunately, we found out at our appointment yesterday that the treatment did not work. She is rapidly declining. Her heart rate has gone down to around 43 bpm and she gained nearly 3lbs of fluid in 10 days due to her heart failure.

Barring a complete miracle, we will not be bringing a baby home from the hospital with us. And we most likely will not get the chance to meet her alive.

We knew going into our appointments that we should be prepared for bad news. But I was not prepared to see with my own eyes just how bad she had gotten so quickly. The diagnosis from the doctors didn't change, and they didn't tell us anything we'd not heard before. But to see just how large her belly had gotten and how swollen her face was from the extra fluid was unbearable. I broke down sobbing in the conference room with all the doctors sitting with us around the table. Her decline was so rapid that they want us to be prepared to lose her at any time now. She had been able to hold steady for so long mainly because she was so little. But as we entered into the 3rd trimester and her body continues to grow on-track, she is quickly outgrowing the capacity of her poor, damaged heart.

I was unable to talk during the meeting because I was so choked up. Fortunately DH was able to put into words what I could not. He told the doctors our main wish at this point is to meet our daughter alive. They reassured us that this is a very common and completely understandable request. They didn't want to take her just yet because of the minute chance that she could pull through this, as taking her now means they would not be able to provide any interventions to her. So we are going to be monitored weekly to see how she's progressing and how I am progressing. Should she decline further then we will schedule a delivery to give us time with her. By some miracle if she makes it 6 more weeks then they could attempt to try a pacemaker and see if they can reverse the heart failure, provided she does not suffer other organ damage in the mean time.

But scheduling a delivery may not be up to us. Her heart could stop at any minute as it is already very weak. Her size could also trigger labor to start, as she's almost the size DD was when she was born and my body is measuring at 36 weeks. I am at risk now of going into preterm labor as my body thinks we are both ready because we are both so big. I've been having pretty consistent contractions for the past couple of weeks, just like I did with DD before I went in to labor. Aubree is not strong enough to survive even a very fast natural labor, so if my water breaks we have a very slim chance of being able to meet her alive. And with the hydrops making her body so large it could complicate labor for me, resulting in a c-section even if she has already passed.

When we came home yesterday I just sat on the couch in a daze for awhile. I felt like I had to start planning something for her, so I grabbed my computer and started to look for urns. I want something that looks like a piece of artwork and not the traditional clay or marble jar. I found a few that DH and I both liked. Unfortunately, as I learned today, Google is not always kind. While I was in the mood to look at these things yesterday, I was not prepared for the constant stream of ads on Facebook and other sites based on my search history from yesterday.

I really just want to check-out for awhile. To step away from this crazy life and have a second to just breathe. But that's not how it works. Life keeps on marching forward. So I keep plodding a long, just hoping that this will help get me through the worst of it and find some kind of rest on the other side.

Unglued

I went to a Bible study tonight with some ladies from church. The curriculum is based on the book "Unglued" by Lysa TerKurst. "Making wise choices in the midst of raw emotions." Those who know me well know that I am not an outwardly emotional person. I rarely cry, even in private. And I rarely get super upset. I am not even very outwardly happy when good things happen. Most of the time I maintain a pretty steady composure. So a Bible study on how to handle emotions didn't really seem like my thing. But I needed some girl time and I figured there's always something to learn, so I signed up to go.

I honestly didn't have a lot to relate with as I read the first lesson in the study. I am not one to blow up at my husband or my kid if I am mad. I tend to retreat somewhere to calm down, think through my reactions, and then deal with the underlying issue if there is one or get on with life if there isn't. I didn't think I would have much in common with the other ladies in the study either since we all seem to be in pretty different places in life. Still, we had a nice time talking this evening and I left feeling happy that I had gone.

But as I drove home and thought about our conversations and our lesson, I was struck with one big revelation:  

I am a horribly selfish person

This last week I've been dealing with an issue of someone hurting my feelings. Someone hurt MY feelings. See that, it's all about ME. Oh, I've not thrown a tantrum or blown up over it or stormed off to confront the person to work out the issue. But the feelings in my heart were still the same even if my outward actions were kept under control. I perceived someone's actions as being inconsiderate to my current situation in life. They inconvenienced ME. And now MY feelings were hurt, and I was upset about it.

ME ME ME ME ME ME ME!!

One thing I've come to realize over the past few years is that most people are thinking about themselves. It's not necessarily a bad thing, it's just the way people work. I don't think that people set out to intentionally hurt others (well, sometimes this happens, but that's another issue). No, what I believe happens most of the time is that people are just thinking about what they need and what they want. Just like I am. This person that hurt my feelings was focused on their own needs and not looking out for mine. And that's ok!! Because I am not the center of the universe!!! They didn't intentionally hurt me. I am the one that felt hurt when I was focusing on MY needs and not realizing that this person also has their own needs that have nothing at all to do with me. In this case, feeling hurt was completely MY issue to deal with! My bad attitude, my resentment, my mean thoughts.

Wow. That was quite a lesson there.

But there was still another one.

The ladies at this Bible study are not necessarily my regular group of friends. Not that they aren't wonderful people, I just didn't think we had much in common and we are in different places in life. How can someone who doesn't have kids relate to where I am right now with facing the potential loss of my daughter? How can girls still in college relate to someone who's trying to juggle working full time, parenting, and just all the stress of life? How can someone who is a SAHM relate to the balancing act of working outside the home and still having to take care of everything at home when I get back?

Yep. You guessed it. Another example of how I am selfish.

I was ready to disregard these ladies' stories because they didn't measure up to mine or I couldn't really relate to them. Until I heard a little voice in my head saying, "Just who the hell do you think you are?*" Who am I to say that someone's life experiences are somehow less than my own? Someone may not have experienced the same pain I have, but they have still experienced pain at some point. Someone may not have had all the different life experiences I have, but they have had their own set of experiences and insights they can share. Who am I to judge how "bad" or "hard" or "sad" or "easy" someone's life has been? Just because things are different does not make them superior or inferior. Ouch.

If I can let go of the focus on myself, then I can see that we have a great group of ladies here who all have something very special in common. We all share the same faith. I can learn a lot from these other people if I just stop worrying about what's in it for me.


*My mom may be the only one who gets that line. My sister once said this to my dad when she was only 3. Not funny at the time, but definitely a funny story now ;) Funny how God brings things up and uses them to help teach you a lesson about something else altogether!

Frugal Mom Hack - Reusing and Recycling!

Now that DD is two, we can leave the house without taking the whole kitchen sink along. But sometimes you still need a few "baby" things like diapers, sippy cups, etc.

While we were out a few weeks ago, we got a bottle of water like this:

The sport top was perfect for DD to drink out of and we didn't have to carry along a sippy cup for her :) But we can't always find bottles with sport tops. So once she was done with this bottle I kept the top before tossing the rest into the recycling bin. I sent it through the dishwasher, and now I can keep just the top in my purse. If we can't find a sport bottle for her, I can just use this top for another water bottle. Yay!!

We also found that the plastic containers from cups of gum make the perfect little snack holders! They are small enough for DD to hold well, they have lids that are attached (so no dropping the lid somewhere), and they fit into cup holders or purses easily. DH loves the Orbitz gum, so I just saved several of his cups once he was done. And gum is cheaper to buy in the cups too :)

Worth a try

I officially got transferred to care at Children's Mercy and passed my physical so I am cleared to deliver there when the time comes. We've made it almost to 28 weeks which is amazing! Right now we are trying a terbutaline treatment hoping to raise Aubree's heart rate enough to clear off the extra fluid. I hope it's enough to get her to the point where she can be delivered and get an external pacemaker installed. The treatment is honestly not very effective in babies with issues like Aubree's. But it is really the only thing we can try right now and it won't make things worse.

At our appointment yesterday she was measuring right on-track, except for her poor belly which is now almost 6 weeks ahead. Due to all the accumulated fluid she's weighing around 3lbs right now. We will know more in a couple of weeks hopefully after we get a chance to meet with all of the doctors and see what our plan of action could be. Right now it looks like we may schedule an early delivery in order to get her assistance as soon as possible since right now the risk of her being stillborn is very, very high. The longer she stays in, the greater the chance that she will pass away before delivery. I know it is still a long-shot, but I really would love to at least meet her alive.

Another Set of Eyes

Dr. Marx with Boston Children's Hospital contacted us yesterday. He had received our medical records and reviewed them. While he agreed that her outlook is grim, he wasn't ready to write her off completely like others have been. Right now he sees three HUGE hurdles to overcome:

• Her heart block. He didn't know if it was 2nd or 3rd degree, but the low ventricular heart rate is very concerning. There's no way to effectively pace a heart in utero, so she has to survive to term with a heart rate approximately 1/3rd of what it should be.
• Non-compaction of her heart muscles. Muscle fibers should be dense & compacted. Aubree's are spongy. So her heart simply can not get enough force to pump the blood around like it should because the muscles themselves are weak.
• Ascides/hydrops. Due to her heart not pumping effectively, she's in heart failure. This is causing fluid to build up in her chest and abdomen. There are treatments after she's born, but again it's most threatening now as there's no good treatment in utero.

At this point, it's all up to God and Aubree. There are no treatments we can do to help her right now. The fact that she's made it this far is a complete miracle. Should she made it closer to term to be born (32-36 weeks would be good, closer to 38 would be the ideal), then they could look at some interventions. The first being an external pacemaker to at least get the heart she has pumping at a higher rate. If that works, it would relieve the fluid build-up. But since the muscles themselves are weak there's a good chance this may not work.

An external pacemaker is only good for about 4-6 weeks. At that point a permanent one would need to be implanted and additional modifications made to her heart. Or we could see if she was a candidate for a heart transplant and wait for a completely new heart. Of course transplant brings along it's own set of risks and problems. Even a new heart wouldn't necessarily "fix" her as heterotaxy babies have issues with other organ functions due to the way things are mixed up within the body. Stomach, spleen, bowels, kidneys, and liver are all commonly affected and can't really be diagnosed until after birth.

Saint Louis is the closest facility that is capable of doing a heart transplant and they have an excellent track record. He recommended we seek them out vs. trying to uproot our lives and go to Boston. Dr. Marx also knew our current cardiologist as she had trained with him a few years back, and said that he would be in touch with her to share his opinions.

And so we continue our game of hurrying up and waiting. In two more weeks we officially transfer our care to Children's Mercy and Aubree can be born there. It's the only hospital in the region capable of handling her needs at this point. Today we officially are 27 weeks along. That's 11 more weeks than we were told was even possible. While she continues to defy the odds, always present on my mind is the fact that she could pass away at any moment.

So for now we have a plan for what to do if she comes before 7/29. On 7/29 we will re-work our plans, and it looks like things could change again if she keeps progressing further. Unfortunately those plans also bring along another set of tough decisions that we have to face. At each milestone in development more interventions become available. Advances in medical technology have given us incredible opportunities that also come with serious risks and consequences. And our hearts will be tried as we attempt to make the best decisions for Aubree that we can given the information and resources available to us.

But for now I will continue to enjoy her kicks and rolls. And the way she tries to climb up as high as she can under my ribs, even though it's leaving the top of my belly very bruised and tender.

Clinging to Hope

Aubree Grace. Her first name means "elf-power" or "supernatural power." I especially like that second one, because I honestly believe that she's only hanging on to life right now by supernatural power. The doctors still have no explanation for why she is still alive. Ten weeks ago we were first finding out about her poor broken heart, and facing the decision of whether or not to continue on with the pregnancy. We were told that she wouldn't last more than a couple of days because her situation was so severe. We made the decision to continue the pregnancy and to try to enjoy her life, no matter how short it may be.

But she's held on. She's growing, stretching, moving all the time. Each checkup we have the doctors are amazed that she's still here. Heterotaxy happens in approximately 4:1,000,000 children born, or less than 20 in the US every year. It is pretty rare. Without serious interventions, more than 85% of children with this condition pass away in their first year of life. There are very few places in the US that see enough cases to really treat these kids. From what I have been able to determine from my endless Googling, Boston Children's Hospital seems to be the leader in care for these babies.

The doctors at our local children's hospital are great. But I can't help but feel like we are inconveniencing them by continuing to request care for her. They just don't have a way to treat her here and it seems like their only recommendation is palliative care. I know her chances may be slim, but if we stay in KC she has no chance. I started to feel a desperate need to find someone who would be willing to see her as a baby that needed help, and not a hopeless case to just write off.

So we've started asking for second opinions from other centers that are leaders in pediatric cardiology. The first place we were able to contact was CHOP. The doctor there responded that he would agree with our cardiologist here and he would not be willing to take on her case. He told us it would be better for her to pass away since the challenges she faces in order to survive are too great. That news hit me pretty hard. It's one thing to know she's facing tremendous odds and that passing away is a very likely possibility. It's another to hear someone say that your baby would be better off dead than alive. Someone who is supposed to be the expert in treating these babies. I know it wasn't said maliciously but the words still stung.

Reeling from that, I began to search online for some kind of hope. I couldn't give up at this point. She had passed the magical 24-week mark and I knew that I had to fight for a chance for her as long as she continued to hang on an grow. I came across a group of Heterotaxy families (parents and survivors of Heterotaxy) on Facebook. And that was the point I officially let myself start to have hope for Aubree. There I found families who have faced nearly identical situations with their children. Children that are now past toddler-hood and thriving. I found stories of survivors that are my age, with careers and marriages and children of their own.

With help from the group I was able to get Aubree's information sent off to Boston for another opinion. I've been researching medications that can be given while I am still pregnant to help increase her low heart rate and to help prepare her lungs in-case she is born early. What I have found is there are options available, even though the doctors here told me there were none. The medicines may not be effective for every baby but the studies I read showed nearly 50% chance of improvement, especially in the ventricular heart rate, which is where she has the most difficulty. When the other option is to wait for her to die, why wouldn't we want to give it a shot? It makes me mad that we were not even given the information by the doctors treating us.

So we continue our waiting game. Waiting for 29 weeks to get here so we can get our official transfer to OB care at the children's hospital so she can be delivered there. Waiting on second opinions. Collecting medical studies and journal articles to discuss with the OB (earning my doctorate in Googling!). And making as many memories as we can with her in the meantime.

Making memories

Her feet in my ribs.

The way she scoots around so her butt sticks out on my right side.

The way she flips over and makes me feel sick as her elbows and knees press into my stomach.

The hard jabs that bounce off my hips or ribs and make my whole body shake.

The way she stops the second she hears her daddy's voice.

She loves ice cream and sweets. Especially Sprees (mommy's favorite!).

She does not like these fireworks.

Hiccups.

Kicking at the bed because she wants me to roll over.

Morning taps as I place my hands on her to tell her about what our day holds.

Calming down when her sister gives her a hug.

But kicking back when sister encroaches on her space as we read bedtime stories.

My sweet girl.

I only wish we had more time to make more memories.

Real Thoughts from a Crappy Mommy

One child is dying and the other one seems to hate me. Sometimes I feel like the worst mom ever.

Aly has been acting out a lot lately. Mainly with me. She is obedient and pleasant for our babysitters, and even pretty good for DH. But when I see her she screams and runs away. She hits me, kicks me, tells me to go away. When I ask her to do something the answer is always "NO, Mommy, NO!" It's a constant fight to get her to do the simplest things like letting me change her diaper or brush her hair. She fights me even when I try to give her what she's asked for (like a new cup of milk).

I think she's having a hard time along with DH and I. But she just doesn't know how to deal with it or express what she wants. Not that she understands about Aubree, but she knows we are upset and stressed out and it affects her. And she's been passed off to family members a lot lately for appointments, MIL being out of town, and a couple of nights where I just didn't have it in me to deal with her because I could barely take care of myself. So her "normal" has been completely upended as well. I know it's all factoring into her behavior lately. I keep trying to be patient with her, speaking softly and giving her several opportunities to respond in the way she knows she should (like coming to me when I ask her to, or complying with diaper changes). But there are times when my patience wears thin and she ends up going to bed early or spending half the night in time-outs.

Tonight, though, we had a good night. She ate her dinner at the table with me and even seemed to enjoy it. After dinner she got to play with all of her toys and watch her favorite shows. The last couple of nights she's been at other places, so this was great for her to be in her most familiar territory. She played and even crawled up on the couch with me for some cuddles and tickle fights. When she took a bath tonight, she stayed in the tub and obeyed when I told her to sit down. Usually when bath time ends she has a melt-down, but tonight she cheerfully got out of the tub and let me dress her and brush her hair without a fight. She even let me brush her teeth and trim her toenails!! After we got ready for bed she went straight to DH to say goodnight instead of running away from us. Then she walked to her room, said "I luff you, Mommy! Night night time!" and went straight to her crib. I even got a hug when I picked her up to put her in the crib :) And then she settled in with her dolls and blankies and told me goodnight as I turned out the light and left the room.

I know she's just a toddler and that she doesn't really hate me. But it hurts a lot when she wants nothing to do with me :( I am glad we had a good night together though, and I hope these continue. I can't imagine what she's going through right now with everything so out of place from her normal schedule and a mommy & daddy that are sad all the time. It is really hard to balance parenting one child while grieving for another. I just hope we don't mess up too badly and that we all find our way through to the other side of this.

24 Weeks

We've officially made it to 24 weeks! This is a huge milestone in pregnancy, as it's considered the point where a baby has a chance of surviving outside the womb if born early. Although it's always best for them to stay in until closer to 40 weeks, with our situation now I had felt a sense of comfort and relief from knowing we had made it this far. Aubree is still moving around like crazy and keeps her feet permanently lodged in my right ribs. She's growing right on-track and I've gained 18lbs to go along with that. No idea how I can gain so much weight when she only weighs 1lb at the moment, but oh well. No...it can't possibly be all those cheeseburgers that I've been craving. Surely not. ;)

This weekend I started to read the book "I Will Carry You" by Angie Smith. The book is the story of Todd and Angie Smith's 4th daughter (Audrey) who was given a fatal prenatal diagnosis and how they continued their pregnancy and made the most of the time that they had with their daughter. I realized that I've read parts of her story before as I've perused the depths of the internet trying to find others that can relate to where we are now. A friend from church passed the book to me a few weeks ago. She had randomly come across it at an event and had been holding on to it for awhile as she wasn't quite sure what to do with it. Isn't it cool how God works things together like that?  I made it half-way through the book before I had to put it down. As I read the story of Audrey's birth, their time with her, and then her funeral I was hit with the overwhelming thought that this is what we are headed for very soon. And I am not ready for it. I want to stay where I am right now. I want to keep those sweet little feet right up in my ribs. I want to be able to pat my belly and feel her thump back. I am not ready to say goodbye and to continue on with my life without her.

But that's the reality I am facing and those are the plans that I need to help finalize. Because apparently we need to act as though we don't have much time left.

This morning we went back to the fetal health center to check in on Aubree. We saw the director of fetal echocardiography and had an echo done. This time Aubree cooperated much better, even though she was still a wiggle worm. Because she's bigger and has less room, they were able to pin her down more and get better pictures. The scans were better and the doctors were able to put together a more complete picture of her situation. Unfortunately, that did not change her diagnosis. Aubree has complete heterotaxy. The pieces of her heart are not where they should be and not functioning properly. Valves are missing, leaking, or not letting blood through. Veins and arteries do not enter the heart where they should. The muscles of the heart are spongy and unable to really pump blood. The pacemaker of the heart is still not operating. Aubree's heart rate was about 49 bpm. Anything under 55 is considered to be in immediate danger of death. But she's been hanging in there for a month now with the same heart rate! They really don't know why she's still with us, and they don't know how much longer she can survive.

There are decisions DH and I need to make about what kind of care we want and where we want to deliver. Aubree will most likely not be born alive. Her heart issues are so severe that she's most likely going to pass away in the womb before delivery. Even if she were to be born alive, the children's hospital won't be able to do anything for Aubree until she's full-term. At that point her only hope really is to be born in a facility that could do a heart transplant immediately after birth. Which means we would have to travel, and a heart would have to be available (meaning some other family would have to first lose their precious baby), the heart would have to fit and have the right connections, Aubree's other organs would have to be fine, and she would have to survive the surgeries. In other words, it's nearly impossible. The doctor told us she had never seen a baby with a heart like Aubree's and gave her honest opinion that Aubree has no chance of survival outside the womb.

I want to believe in miracles and I know that one could happen. But I also realize that we will most likely be saying hello and goodbye to our daughter at the same time. Even if she were to be born alive, I don't know that I could consent to putting her through so much pain and suffering for such a low chance at survival. The thought of her being in pain just kills me. I would rather try to relieve any suffering she has and to let her go back to God. They have told us that she is not in pain now, which is comforting.

It is really hard to grieve and prepare a funeral while your child still flips and rolls around inside you. The most surreal feeling ever. There are moments when I let myself forget all that is wrong and just enjoy being pregnant. And there are moments when I try so hard to forget that I am pregnant because it is just too hard to face the reality that she's dying inside me and there's nothing in this world that I can do to help her. There are times when I wish this would never end and I could always keep her with me. And there are times when I just wish it was over already because I don't know how much more I can take. I want to just check-out mentally and emotionally. I don't want to connect with her any more, but instead start sealing off my heart so it doesn't hurt so bad. And then I feel guilty for having those thoughts and I don't want her to think that I don't love her. She's still my daughter and she's worthy of all the love and attention that I can give to her. So I keep willing myself to stay engaged with what's going on, even though it is horrendously painful.

I can't believe it!

I won a blog contest! Seriously, I never win anything. But to win this contest in particular was especially encouraging :)

All That Love Can Do is a wonderful blog and resource for families choosing to continue their pregnancies after a fatal diagnosis. I stumbled upon them while we were first learning about Aubree, and I have been so encouraged by the stories on the blog and on Facebook. To know that there are other families out there walking this same road is encouraging, even though I wish with all my heart a group like this didn't have to exist.

Earlier this week, ATLCD hosted a giveaway for Epiphany Art Studio. These beautiful works of art are made by a wonderful mom who had to say goodbye to her sweet baby. Creating art was something that helped her to express the deep emotions and to bring comfort to herself and others. Really - you have to check out these pictures. There's something so haunting and yet extremely beautiful about the emotions that come through.

As a winner of the giveaway, I got to choose my own piece from Epiphany Art Studio! This is the image that I chose:

"Trust Through the Storm"

by Epiphany Art Studio

How beautiful is this piece? And how appropriate for my life in this moment. "Trust Through the Storm" - exactly what I am feeling and going through right now. I can't wait to get this and frame it.

Thank you, so much, All That Love Can Do and Epiphany Art Studio!!

Family Adventures

We took Aly and Aubree to go visit DH's family over this last month. Oh what fun we had :)

First we drove to Chicago. And we quickly discovered that Aly does not sleep in the car. That made for a REALLY LONG drive! Once we were there she was great and we had a lot of fun visiting with FIL's family. We went to church on a farm on Sunday, but poor Aly could not figure out what we were doing and just did not understand having church in a barn. So she took off running around yelling "It's a farm!!" It was pretty funny :) We also got to visit the zoo. I think she liked the birds in the parking lot more than she liked the animals at the zoo. Aubree helped me crochet a special blanket just for her while we drove.

Aly and Aubree got to meet great-grandpa and great-grandma for the first time. It was actually mommy's first time meeting them as well. It was so nice to visit with everyone!!

And this last weekend we flew out to NM to visit with MIL's family. Aly did much better on the plane than she did in the car. I think it was more entertaining to fly up in the sky and to watch all the other people around us than to sit by herself in the backseat while mom & dad drove. Aly met cousins, aunts, and uncles. And she got to spend some quality time with great-grandpa. She really enjoyed hanging out with him in his favorite rocking chair :)

Aubree loved it when mommy ate spicy Mexican food - especially green chiles. She would dance and flip almost as soon as I started eating! And I don't know if she could feel the pressure changes while we were flying, but she was very squirmy while we were taking off and landing.

Next week we have another checkup for Aubree to see how she's doing. We've almost made it to 24 weeks! I didn't think it would be possible to get to get this far when they first told us how she was doing. I am so thankful for every flip and flutter that lets me know she's still hanging in there.

Sharing a mom's heart

Yesterday was a hard day for me. The bigger she gets, the more she kicks and rolls, the more I just really want to keep her. And my heart breaks knowing that we can't.

Why I Am Not Mad At God

DH and I got news over the last month that our sweet baby girl will not survive this pregnancy. It is absolutely devastating. Obviously we are heart broken and experiencing things no parent ever should. There is nothing in this world that we can do to help our little girl. And so we just have to wait, helplessly, until her heart finally gives up. As someone who likes to take-charge of situations and take actions to make things right, not being able to DO anything is very stressful.

To say that we are on an emotional roller coaster is an under statement. Yet in all of the emotions I am experiencing, I've never once been mad at God. I know several people do have those thoughts when walking this hard road and that it is completely normal. But to me it's never been a question of God's provision, protection, or grace. This isn't something that was a part of God's plan, although I believe he can use the situation to bring us closer to him.

I believe that God created this world to be perfect (Genesis 1:31 - 2:1). I believe that the studies of science show how intricate, beautiful, and intentional his design was. Things were made to work in a certain order. We were never meant to experience sickness, natural disasters, or death. But something happened to change all that. Sin entered the world, and with it came death, chaos, and destruction (Genesis 3, 1 Corinthians 15:56, Romans 5:12). The result is that we no longer live in a perfect world. We now have horrible natural disasters like floods and tornadoes that claim many lives. People get sick with diseases like cancer and pass away. Babies in the womb are not always formed correctly and pass away before they even get a chance to live. This is not a direct result of God's will or something that he directs to happen. It is the consequence of living in a broken world. And until this world is redeemed completely, these things will continue to happen. To "good" people and to "bad" people. No one is immune from the consequences of sin. However, through Jesus, we can have hope of redemption after this life.

But I believe we can have hope for our daughter even in the midst of our grief. I am reminded of the story of David (2 Samuel 12). David's child was very sick and about to die. David wept and pled with God for days to save his son. But once his child passed away, David's mourning was over. His servants were perplexed and asked why he was no longer weeping for his child. His response "I fasted and wept, thinking God might have mercy on me and the child would live. But now that he’s dead, why fast? Can I bring him back now? I can go to him, but he can’t come to me." I know the situations are different, but the pain of losing a child is the same. However, we have hope that someday we will go to be with Aubree even though she can't be with us right now. This passage also gives me hope that children go to heaven (something that is actually pretty divisive within Christian circles, not comforting to find out when going through a situation like this).


To be honest, it kind of irritates me when people say things like "God won't give you more than you can handle", or "God only gives things to people that are strong enough to handle them." The truth is, there is nothing in the Bible that states God won't give us more than we can handle when it comes to trials (although there is a similar passage regarding temptations - 1 Corinthians 10:13). This life is ALWAYS more than we can handle. If we could do this on our own, then what need would we have for Jesus? But what God has promised is that we will never be alone (Deuteronomy 31:6,8; Joshua 1:9; Matthew 28:20 to name a few). There is nothing we can face that he can not help us through (Luke 1:37). We never have to be afraid (2 Timothy 1:7). And we can approach God at ANY time (Hebrews 4:16). But each test and trial presents us with the opportunity to exercise our faith and grow closer to God (James 1:2-4). 

Even though I am sad, I am hopeful. And I have so much peace. It is amazing to see how God provides enough grace to get through each day. We are finding joyful moments in the middle of the sadness. I am excited to meet my daughter even though I know we will have to say goodbye soon after. We hope and pray that God will work a miracle for Aubree. But even if one does not come, we will still praise him (Daniel 3:17-18 - a loose interpretation from me).