Friday, December 30, 2011


'Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.'  -Ephesians 3:20

I think this may be the theme of our last year.  It has been the year of watching God do immeasurably more than all we could ask or even try to imagine. 
Our first big movement came early in the year.  We scheduled surgery for Abigail to have her tumor removed.  We knew we would have to raise the money since the surgery was considered 'elective.'  One morning in March we woke up and Abigail's tumor had more than tripled in size overnight.  Literally.  We were scared, and didn't have enough money raised to move the surgery.  We needed around $30,000 and probably had about $500 at the time.
So in an act of faith we moved surgery to April fifth.  One month away.  And our God, being able to do immeasurably more brought in enough that we paid for everything up front.  Not only that, but we also had a house to stay in instead of a meal.
At the end of our ten days in Chicago we got another little surprise.  At the time I was mostly just perplexed, but as time has moved on I can't help but look back and be so thankful.  Abigail's tumor had NOTHING to do with her NF.  It did give us the definitive diagnoses of mastocytosis (a second disorder).  First of all a mastocytoma is a much easier tumor to deal with.  Secondly, we had been hearing about masto for some time so to have something solid to go on meant we could figure out a little more of the medical puzzle that is our oldest daughter.

While I don't talk tons about our finances on here, and some of you probably don't know this, we are also (loosely) following the money matters steps from Dave Ramsey.  If you are unsure what that is you can google it.  We are on step two though, and closer every day to being completely free of consumer debt.  This year we were able to pay off two more debts and continue to put more money towards our other debt.  We also were able to pay for all of the adoption cost outright (a HUGE blessing)!  If an outsider looked at our income they would probably think we didn't have much.  Somehow, God still always provides above and beyond what we need.  Even with things outside of necessities. 
We had been wanting a ipod for a few years.  It had been on our Christmas list, but not something we could afford, or validate just buying.  A friend got a new one, and gifted us his old one along with the docking radio for it.  An ipod was not something we needed, but I believe God likes to give us good things because He can.  More than we could ask or imagine.

And lastly, or course, is the sweet little girl my husband is holding right now.  We had originally thought we would wait until Abigail was closer to five before adopting again.  Over the past year, I had really started to feel the draw of being called to adopt again, and specifically a child with Down syndrome.  We prayed, had lots of conversations with each other, and some other parents of kiddos with Ds.  Jason just wasn't ready, and I wasn't willing to force the issue.  I prayed that God would change his heart or mine.  All it took was a few minutes of Jason holding a sleeping newborn baby girl before he decided he 'might' be ready.
From the moment we started, I could feel God placing this urgency in my heart.  He was telling me that it was going to happen quickly.  I started freezing meals here and there as we were working on our homestudy.  We had a finished homestudy for three weeks before we had a daughter.  Our first one was close to three years.
I had hoped, imagined, and prayed, that it would go quickly.  I still can't believe we have a seven week old daughter.  And while I don't, and won't, reveal everything about our daughter's stories, I know that God has not finished writing things, and I can't wait to see what He is up to.  Because if there is one thing I have learned this year, it is that God really can do more than I can imagine!

I hope you all have a Happy New Year!  May 2012 be another year of God showing His people what He is able to do.
Jason, Andrea, Abigail, and Shilo.

Tuesday, December 27, 2011

one week.

So our schedule went as follows for the last week:
Last Tuesday, Shilo was released from the hospital and we got home around 7:30 pm.
Abigail was pretty excited to have her sister home again (and Mama too).
Wednesday we had nothing on the schedule.  Worked on laundry, and attempts to reclaim our home from chaos.
Thursday morning, donuts with friends and family, final adoption hearing.  That's right, Shilo is officially adopted.  Then a doctor's appointment for a weight check.  5lbs, 4oz.  We have finally grown and surpassed our birth weight.  Another appointment for insurance nonsense in the afternoon.  Packing in the evening.

Our final hearing for our adoption with our attorney and the judge.  They both were part of Abigail's adoption too, so it was pretty fun.
Our first picture as an official an legal family of four.
Friday we left to go visit Jason's family for Christmas.  We had a great time, and actually felt like it was our first time getting down time with the four of us, and just getting to really hang out and enjoy Shilo completely.
Monday we got home at eleven p.m.  We were on schedule to get home around eight and get both girls ready for bed, but an accident on I-70 pushed things way back for us.
Abigail and Shilo listening to Papa tell the Christmas story on Christmas Eve.
The week ahead holds a lot of nothing specific.  We are planning on relaxing, playing some of Abigail's new games, trying to get things unpacked.  Working on getting everyone back on schedule, and helping Abigail remember the rules and lose her attitude that she picked up sometime over the past month.
Abigail ad I played 'cootie' together today.  There was quite a bit of giggling as a result.
We have Christmas with my family coming up, and I'm thankful that they live close enough that we can make the round trip in one day.  I feel like I haven't had much time in my bed lately, and I have missed it greatly.
So for now we will settle back in to our lives here, and enjoy being a family of four.

Enjoying the season,

Tuesday, December 20, 2011


we are home!  praise the Lord.  spending the evening resting and rejoicing.

Monday, December 19, 2011

Another day, another....

So today is day five of our two day stay to learn how to do an ng tube.  I know other things came up, and am mostly grateful for how quickly it was all taken care of.  But we are at the end of things really, and I'm getting more and more annoyed at the, 'oh, there's this so we need to see this doctor before you can go.  and then this.  and then...'  leaving us being told, home saturday, sunday, monday, and now tomorrow.   Although, I may actually throw a screaming fit if we don't get out tomorrow.
At this point Shilo is very steady.  Pulmanology is supposed to come tomorrow to help figure out some of the oxygen stuff.  And Jason and I have to take a class on CPR (uber annoying since we also had to do this before leaving UK with her when she was released), and learn how to use an apnea monitor.  I am fine with these two things.  However I am also pretty annoyed.  Pulm. said they would be in today.  So if our stay is longer because of this I will be speaking to someone about it.  And the class is frustrating because when Jason came down Sunday he specifically asked if there would be something he would need to do if she had to come home on oxygen.  We were told no, and that I could be trained on it.
So when the doctor came in today and told me that Jason had to take the class I was trying to clarify why I couldn't take it and take her home if I was trained.  He finally just said, if he doesn't come take it tomorrow morning you will have to stay here longer.  You can't go home unless you both take it.
He left and I started crying.  He came back in a few minutes later, and when he realized I was upset tried to make me feel better with trite and patronizing comments.  A few minutes later a social worker came in to see if I 'needed anything.'  While that is kind in theory, you don't need to call a social worker just because I'm crying.  I would imagine lots of parents who have kids in the hospital hit a point where they have a breakdown.
So tonight I'm going to feed Shilo every three hours, try to get some sleep, and be prepared to fight to get out of here tomorrow, even if it makes me unpopular. :)

Sunday, December 18, 2011

Today's update.

The morning started off with me feeling quite defeated.  I thought we might get to go home today, but alas the doctor had a different idea.  However, after a long day, and Jason getting to join me for about six hours, I feel a little bit better, and somewhat refreshed.  The man I love being here with me always makes me feel better.
So here's the basic rundown.  Shilo DID need an NG tube.  In order to send us home with one we both have to be trained in how to insert it.  We have to successfully do it, and the feeding two times.  And we both got our gold stars.  The tube is just to help her get extra calories.  We are still feeding her by mouth, and after twenty to thirty minutes, whatever she hasn't taken gets put in the NG tube.  This is not a permanent fixture, matter of fact she is already taking about 25-30 of the 45 ml that she is required, by mouth.  The doctors seem to believe once she gets a little bigger that she will have the endurance to take it all by mouth.  So there is NO reason to do a permanent G tube, because she won't permanently need it.  On top of that we really want her to do as much by mouth as possible, and to avoid another surgery.  She tolerates the tube well, and is still more than willing to eat with it in so we feel very confident in this choice.
She still is having some trouble with her o2 sats.  The cardiologist will be coming tomorrow to talk to us about it, and we will hopefully figure out if we can just go home with oxygen.  That seems so minor, and like a silly reason for us to be stuck here.
I feel like I've really gained a handle on Shilo and medical stuff in the last few days.  I've made a few nurses very angry as they have tried to turn her o2 up without realizing that she has a heart defect and pulmonary hypertension so her sats are not supposed to be in the high 90's like everyone else.  One nurse in particular probably has a dart board at home with my picture on it now.  I argued with him several times that he was not going to turn her oxygen up.  He called the doctor to try to override me, and the doctor agreed with me so from there on out he was a little more kind about it. 

That's really about it.  I am praying that we can go home tomorrow and get a few days of rest before the holiday festivities begin.

Friday, December 16, 2011

serious stuff.

So here's the not too brief, not too long run down of life the last few days.  Wednesday night we hung out in the e.r. until about one in the morning.  We were admitted for dehydration, low temperature, lethargy, and decrease food intake.
Thursday afternoon was spent with an entourage of doctors making their way through our room.  We had found out that morning that Shilo's issues was hypothyroidism.  Super common in Ds.  However, Shilo's tsh numbers turned a few heads.  There's a little bit of variance in 'normal' but most labs accept anywhere between .35-5.2 for normal range. 
Some of the 'really high' numbers they normally see are around 400.  Shilo's tsh was 944.  It literally set a record.  Apparently little one was on the brink of multi-organ shutdown.  We are very glad that we made our way to the e.r. at Riley, and for fast acting doctors and nurses who seemed to understand the seriousness of things much better than I did (even if they didn't yet know about the crazy numbers).
We are off of oxygen, and i.v. fluids as of now, and she has taken three bottles and done really well.  She is still have some desating episodes, but I imagine that if we were at home we wouldn't even realize it was happening since her color is staying pretty good.  So when the machines start beeping, I don't freak too much ( I think this makes the nurses as uncomfortable as the parents who over react to everything).
So if things go well tonight, we should be able to go home tomorrow!  So keep praying for little miss to eat well, keep her o2 sats up, and have a great night!!!!

Thursday, December 15, 2011


Well, true to what our daughters seem to be, Shilo has kept things interesting for us. Last Thursday we saw her cardiologist and everything looked great. She was falling back on feedings a little, but we were persistent and increased her calories for her formula again.

The weekend was full of a sleepy baby who was VERY hard to feed. We went into Monday deciding we were ready for an ng tube so we could feed her what we could and ng the rest. She was not taking in enough. I e-mailed our doctor, but didn't hear anything back. We already had an appointment scheduled for Thursday so decided to wait it out as long as she was taking in enough to not dehydrate.
Wednesday morning, Jason changed her diaper at 2. I checked it at 8 and it was dry. I gave her lasix (which is a diuretic so usually she pees within the hour). Two + hours later still no pee.
I called our doctor and cardiologist. We saw a doctor (ours is out on Wednesdays) and the short of it is we ended up at the e.r. at Riley for what we thought was going to be an ng tube and a couple of days of training.
When we got here her temp was 90.3. No, you didn't read that wrong, nor did I type it wrong. It was quite a whirlwind of activity from that time forward with doctors and nurses poking and warming, asking questions, and examining.
Her heart still looked great, her lungs were a little cloudy. So there was talk of a possible infection being the cause of sleepiness, leading to not eating, leading to dehydration. But we still had to wait on blood work for a few things.
So despite the fact I was awaken this morning by the doctor coming in to tell me this, it still feels like 'good news' in the grand scheme of things. It appears she has hypothyroidism. This is super common in Ds and would explain all the symptoms from being extra sleepy to a low body temperature. And, it can be fixed with medicine and monitoring of blood. We can SO handle that with no problem at all.
We are in the PICU right now and will likely be moved to the floor today as she has been stable all night. I am a wee bit tired. We would love your prayers for things here to turn around quickly so we can get back home again. Abigail is in the nutcracker ballet on Saturday and Mama would love to be able to see her in it. So would her sister. ;)

Monday, December 12, 2011

Our littlest peanut.

All right, I have been promising some more medically/doctory information on our youngest daughter.  My last post was *supposed* to contain a video, but someone changed the settings on our camera and it's apparently to big to upload the cute video of Abigail singing to Shilo.  I am working hard nagging my husband to figure out how to make it smaller so you all can enjoy it.  Until then though you will have to settle for this.
A little disclaimer before I get started:  I feed a little one at five and decided to stay up to get stuff done.  If anything in this post is gibberish and incoherent just skip over it, and remember that I don't sleep through the night right now.

So here's the long of it all.  Shilo has Down syndrome.  About 50-60% of children with Ds have heart defects.  There are a few different types that can come up.  Shilo had two that had to be repaired, but technically had five heart defects at birth.  Her two big ones were a coarctation of her aorta, and a complete AV canal.  Two months ago these things meant nothing to me, so I will do my best to explain them.
The coarctation just meant that part of her aorta (the heart valve that carries oxygen rich blood to the rest of your body) narrowed so much that her body was not getting the blood flow that it needed.  This was the defect that was repaired at six days.  The doctor cut out the part that was narrowed and reconnected the two ends.  It is unlikely that anything else will ever have to be done here, but there is a small possibility of scar tissue forming at the sight of the repair causing the aorta to be too narrow again.  If this happens they would likely put in a stint to open it back up.
Her second bigger defect is the one that will be repaired through open heart surgery between four and eight months.  Your heart has four chambers.  Each side has an atrium and ventricle.  The heart is truly a complex thing, but the best description I can give is that on both sides of Shilo's heart the atrium and the ventricle are open to each other, and they shouldn't be.  It makes her little heart work harder, and so she is constantly wore out.  So add into this occasion anything that takes energy (eating, bowel movements, and crying at this point in her life) and we have a little girl who sleeps almost all the time.
Our biggest battle with it all right now is that Shilo wears out when she is eating.  She isn't gaining weight well as a result of being too tired to eat.  For the time being we will continue to wake her every three hours and make an attempt at getting something in her.  It still isn't enough right now as she just is too tired to eat very much.  If this continues over the next few days, we will talk to our doctor about possibly doing an NG tube (tube that goes through the nose into the belly), and whatever she doesn't take by mouth we will bolus through the tube.  This way she is still getting enough calories without overexerting herself.
The hesitation for the tube was that they are hard to place (making certain they go in the belly and not the lungs), and obviously more medical type stuff to deal with.  A nurse friend has offered to help us in any way she can though so this makes it less daunting right now.
Our other big hesitation is that Shilos is a great eater when it comes to being able to latch and suck.  This is something that some kiddos with Ds really struggle with.  We want to make sure she does not lose this ability.  So after lots of thought and consideration we decided that we could make an attempt at feeding her every three hours still, give it a time limit (we will feed for thirty minutes) and then put the rest through the tube.  This way she doesn't lose any ground when it comes to eating.  It will also cut back on the amount of worrying we are doing right now over eating and gaining.  Little peanut still only weighs 4 lbs and 13 ounces at a month old.  We aren't even back up to birth weight yet. 

So other than that we like having a second girly.  We are tired from getting up to feed her, as it should be with a new baby.  Our house is in a little bit of chaos, and phone calls and e-mails have gone unreturned.  But there has been snuggling on the couch with two little girls, dancing a playing games with a big girl, and endless kissing on the head of a little girl.  So all the important things are still being taken care of.

Loving her sister.

Papa and Shilo napping together.

Both our girls swaddled. 

In love with two girls,

Thursday, December 8, 2011

A Promise.

Abigail loves to hold Shilo.  Whenever she does she insist on singing the song to her, 'I am a Promise.'  It seems so fitting for what we believe about Shilo.  The words are simple, but a beautiful truth.

'You are  a promise, you are a possibility.  You are a promise, with a capital P.  You are a great big bundle of, potentiallity.  If you listen, you'll hear God's voice, and if you're trying, He'll help you make the right choice.  You have a promise to be, anything God wants you to be.'

That's right Shilo.  You can be ANYTHING that God calls you to!  Your sister will help to make certain that you know this!

Wednesday, December 7, 2011

Blessed among women.

While the term 'Blessed among women' was one given to Mary while she was carrying Jesus, I feel like I have also been blessed.  Going into this season of expectation, the season where Christ came to dwell among us, and where we also anticipate his return some day, I look around at what I have and feel like I may be one of the most blessed women alive.  I think this picture pretty much sums it up (although the person behind the camera is also a huge blessing in my life).

So grateful for my two sweet girlies, and a wonderful husband.

Saturday, December 3, 2011

The man of the house.

Any of you who have followed me for long probably realize that I have a huge crush on my husband.  The man is a great husband and Papa, great at handy work, and more than willing to cook, clean, and do dishes. 
The last few weeks have been spent focusing on Shilo (and making sure Abigail was doing okay from a distance).  After we all met back up, Jason had to leave a few hours later to come home and work.  We both really missed each other, and like we when we were dating, sometimes just called to know the other person was on the other end of the line; even if we didn't have anything to talk about.
Last night we had a date night in.  We put the kids to bed, snuggled up on the couch and watched a movie.  This morning, Papa and Abigail are out on a donut date together.   This gives me time to do a huge shout out to the man I'm married to.
When I arrived home on Wednesday, Jason was still at work.  I walked in the door to see that he had cleaned~the whole house.  All the way down to the handle on the refrigerator, stripping and waxing our kitchen floor, and scrubbing the toilets.  All the paperwork was layed out nice and neat on the kitchen table in stacks to help determine what was for what.  When he got home that night he declared that I got a night off, and so I blissfully slept while he feed Shilo every three hours.
Thursday he got home from work early.  He reminded me that he had worship team practice that night, and so he came home so I could get some time out of the house alone.  He new I had just spent five days alone,and that bedtime routine by yourself can be exhausting.  So he made sure I got a break.
He is still taking some of the night shifts.  He is still helping me keep the house picked up and looking nice.  And he is still the man that I am madly in love with.  I am so thankful for a husband who is my best friend!  So thanks Jason for working so hard at everything you do!
I love you Jason!

Friday, December 2, 2011

My heart is full.

We are home.  Tuesday afternoon all of the interstate paperwork went through so I spent the evening packing.  I made certain to go to bed early and get lots of sleep get up every three hours to snuggle and feed a sweet little girly in my arms.
Wednesday we drove home and arrived around two.  Once I was home I realized that I had spent five days alone with a three year old, and a new born, gone to a doctor's appointment with both of them, and spent four hours in the car with both of them (plus a one hour stop to feed both of them).  I felt completely unfazed by it, and pretty proud of myself.  I was, however, more than ready to be home with a husband who loves to help, a bed that is my own, and lots of people we love jumping in to help.
This sentence is to let you know that I'm transitioning from logistics of life to the heart matters.  You have been prepared.
For some reason I always saw myself as the mother of boys.  There were three of us girls and no boys.  Both of my sisters had boys, and for whatever reason it just felt like I would follow suit.  So I was overjoyed when Abigail came.  As we started the adoption process this time I just sort of assumed we would have a boy.  We picked out a boys name. 
I was once again pleasantly surprised.  There are so many days where Abigail and I are playing together and I feel like my heart can't be any fuller.  Amazingly though, another little girl came along, and here I sit with my heart even more full than it was before.
The last couple of days have been busy with unpacking, a well baby check, and returning 8 million phone calls, as well as making new ones to set up things for Shilo.  I haven't had much time to just sit and enjoy being the Mama of a new baby.  So at nap time today I put Abigail to bed, and snuggled in with Shilo on my chest.  For two hours we layed there, my three week old daughter and I.  There is something so amazing about snuggling a baby that makes the world feel like all is right.   

Abigail smooching Shilo as we all three snuggled.

Somehow, it managed to get better.  I feel completely undeserving, and gracious beyond words that God has chosen me to be the Mama of these two sweet girls.

Thankful for daughters,

Monday, November 28, 2011

short and sweet.

I'm tired.  Jason went home to go back to work, but I have a few more days before I can leave, while waiting on the interstate paperwork.  So three year old, new born, and someone else's house has me feeling pretty busy.  I thought I would update a little that Shilo is out of the hospital (obviously), cord free, eating well, and sleeping pretty much anytime she's not eating.
And Abigail is in LOVE with her little sister.  I can't even put into words how sweet and wonderful she is being.  She is showing not one ounce of jealousy.  She is helping take care of her however she can, and most of all she loves holding her, singing to her (mostly made up songs about adoption), and giving her butterfly kisses, Eskimo kisses, regular kisses, and squeezes.  My heart feels blessed to overflowing watching my two girls together.
*someone* likes being a big sister

You probably won't hear from me again until after I am home and have some nighttime help from Jason.

Loving that Abigail has a baby sister,

Thursday, November 24, 2011


Everywhere we have turned people have been saying, oh you must be so bummed to be spending Thanksgiving in the hospital.  It must be really hard.
Well, ummmm, it's not.  We had people who shared their meal with us today, and I am thankful for that.  But in all honestly sitting in the hospital room with the sweet gift God has bestowed upon us makes it a little hard to feel anything less than thankful.  Yes, we missed the time with family we had been planning.  Jason missed going hunting with his dad and brother, which he had been looking forward to for quite some time.  But as much as Thanksgiving is about spending time with family and loved ones, it's also about being thankful.

So for today I am thankful that we have two daughters.  I am thankful that Abigail got to join us today and meet her sister.  And I am thankful for a woman who selflessly chose life, and adoption for Shilo.  Turkey and mashed potatoes are great things.  But being a family of four makes today, and every other day of the past week and a half, worth giving thanks for.
Their first meeting.
Giving thanks,

Wednesday, November 23, 2011

She's mine.

As I sat holding her, and staring she just seemed so familiar.  Her little face feels like it's always been in my heart.  I have known her for so long, yet I just met her.  Adoption is amazing like that.  I believe that I could have picked her out without anyone telling me who she was.
Our adoptions have both been very different.  With Abigail I got to know her form before she was born.  I saw her through ultrasound.  I felt her kick by putting my hand on her tummy mommy's belly.  The moment she was born I was in love with her. 
Shilo was much different.  We didn't even know how much she as going to weigh when we met her.  We had never seen her tummy mommy, and therefore had no idea even what color her skin would be.  It took us a little longer to fall in love the way we did with Abigail.  But from the first moment I saw her she felt familiar, like someone I had always known.
I have heard people say that they don't know if they could love a child that wasn't theirs.  The thing is, as soon as we met our daughters there was something there.  Some heart connection that was ordained by God when he chose these sweet girls to be ours. 

So thankful that we have been chosen to be two sweet little girl's parents,

Tuesday, November 22, 2011

Refelctions from Holland.

I have been thinking about the poem 'Welcome to Holland' quite a bit here lately.  I have been recalling my feelings of bewilderment, fear, and pain when we landed in Holland the first time around.  Today, we were given our packet from the hospital on having a child who has Down syndrome, and is a heart patient.  The poem was in the packet of stuff for new parents.  It made me smile this time.
You see Holland was super scary when we landed there unexpectedly.  You spend time screaming at God and letting Him know that your ticket was not for this place.  Eventually you start to settle in.  You may not always be excited you are in Holland, but you start to meet other parents, other children, and you begin to enjoy this close knit family you make in Holland.  You start to recognize milestones not as one less thing you have to do, but the biggest accomplishment of your child's life, up until that point.
But this time we chose Holland.  We bought our boarding pass and happily flew in that direction.  We knew where we would be landing, and we couldn't be happier to be here.  We have made a whole new set of friends here this time around.  And it feels different.  Less scary.  More pleasant.
People wonder why we chose here this time.  They think we might be a few french fries short in our Happy Meal.  Honestly, our first trip to Holland taught us to love deep and passionately because tomorrow is not guaranteed.  It taught us that children singing loudly in the store, not matching, and jumping on the bed are not grounds for discipline.  But, more than anything, it has taught us to laugh.  Turn on the music, turn it up, and dance.  Sit for thirty minutes, and just watch your child pretending.  Make cupcakes together, and get flour everywhere.  Just do things that you enjoy.
Yes, we chose to stay in Holland.  It isn't so bad here.  Since being here our lives have been greatly enhanced and filled with more joy than we ever experienced.  I think that this is best summed up by a favorite quote of mine:

"I don't think the worst thing that could happen to me is having a child with special needs. I think the worst thing would be to raise a child who is cruel to people with special needs."

~ Matthew Mickelson Butman

Sunday, November 20, 2011

Moving forward. Only forward.

I guess day five was the day everything caught up.  I spent yesterday NOT holding Shilo in hopes that her oxygen could be turned down enough to do oral feeds.  So last night I finally tried picking her up, at which point she desated and had to be turned back up.  Then I skyped with Jason and Abigail, and from that point on I spent the night crying.
I felt like my baby didn't like me.  I was missing my oldest daughter.  I was alone, tired, and just wanted to feel like something was going right.  I went back to the Ronald McDonald house for the night and got a good night of sleep.
I arrived this morning feeling a little better, and saw my favorite nurse was on today.  I have been okay with all of the nurses thus far, but Kathleen has by far been my favorite.  During rounds we found out we were going to continue to try to take off oxygen, get her chest tube out, and move to the PCU (progressive care unit).  Shilo was upset after they took out the tube, and I was actually able to hold her and calm her down.
So as of tonight, we are off of our oxygen and beginning to take oral feeds.  She still desats some if she gets moved around a lot, but we are still have a MUCH better day.
So things feel like they are progressing well.  Jason will be back tomorrow.  He also got hit with the life just went crazy stuff yesterday so we are looking forward to being able to support each other and be together again.  However we are still feeling pretty sad that Abigail won't be here with us.  I mean it would make things much more chaotic if she was, but we like her, and think she would really like the RM house and some of the fun stuff at the children's hospital.

So I guess that's our update.  We are moving forward and hoping to be up and out of this place soon.  It's been an overall good experience, but home would be even better. :)

Saturday, November 19, 2011

the emotions of the last few days.

Shilo is currently sleeping, Jason is back home to get some work done and hang out with our daughter, and I am choosing not to hold sweet one right now because she tends to desat when she gets I'll wait until they do vitals again and then comfort her instead of being the one who causes it.
Anyway, I thought I would share a little more of the personal and emotions side of things here.
First of all, I wasn't sure what to expect when we got here.  There are so many stigmas that go with children with Down syndrome that I was ready to defend our choice to knowingly adopt Shilo.  But that hasn't been the case at all.  While I have had lots of saintly comments, 'wow two children with special needs, y'all are just amazing' I think it's good to clear up right away that we aren't amazing or saintly.  We wanted to be parents.  And without Abigail and Shilo we wouldn't be.  As far as special needs go: raise your hand if you have a biological child with special needs.  Now raise your hand if you got some sort of choice about it during pregnancy.  Right.  Nobody else gets to choose.  So why should I be able to say, 'yes, I'll take a Caucasian baby, brown hair, green eyes, and perfectly healthy please?' 
I also believe that If I'm going to be willing to step up with my beliefs about being pro-life then I should also step up to the plate of helping those Mama's who choose life.  For some that might mean coming alongside single parents.  For some it might mean stepping up and taking in those kiddos who's parents loved them enough to choose life and make certain that they had a great one by placing them for adoption.  I can't write passionate post about not aborting children with Down syndrome and then hope everything just works out in the end for whomever ends up in that situation. 
'If one of you says to him, "Go, I wish you well; keep warm and well fed," but does nothing about his physical needs, what good is it?'  These verses are from James 2:16.  We are called to have the works that back up our faith.  If I say, go have your baby with Down syndrome, and enjoy your life, but am not there to help out in some way I am a liar.  Well wishes do nothing to help in the midst of the situation.

All that was to bring us to the first doctor conversation I had in the NICU at University of Kentucky hospital.  It will forever be etched in my heart as a moment that God ordained with great joy.
Jason and I arrived here on Tuesday at around 1 in the afternoon.  We sat next to Shilo (who still didn't have a name at that point) and stared and rubbed and kissed and sang.  After about an hour a doctor pulled us aside so he could give us all of the going-ons with our little girl.  He went through what all she had going on medically and then with the biggest smile said, ' She has Down syndrome. We know that. But she will be great. She is great. Where I am from [India] we don't have this sort of care for these children. She will do just fine.'  It went on, but the conversation about her actual diagnoses was all positives of why her life will be great and how many opportunities she will still have in life if we don't limit her.  I still tear up thinking about it.

Every interaction we have had with nurses here has included a story about a friend, a niece, a cousin, somebody they know that has Down syndrome who is just this awesome joyful person whom they have strong affectionate feeling towards.  Not one person has questioned the logic of what we are doing.  Not one person has mentioned that she should have been disposed of while in the womb. 

We are so grateful for our Shilo and the joy she will bring to our family.  We believe ALL children are a blessing from the Lord.

Enjoying our children with different chromosomes than most,

P.S.  While I'm not going to make any sort of public push for assistance, we have had lots of people wanting to know how they could help.  So I added our paypal info at the side as well as the charity that we would love for people to donate to. :)

Friday, November 18, 2011

Shilo update.

I hit that spot yesterday where I was tired enough that when I hit the bed last night I slept hard.  So although I'm still tired today, I don't feel like I could drop quite so much.  As a result I think I can write a semi-coherent post about our sweet Shilo.
The going ons of the past few days have been crazy fast, but we are settling into life in the PICU for the moment.  Shilo had her heart surgery yesterday morning.  She is a four pound rock star.  That girl didn't miss a beat.  The surgery went much faster than the doctors anticipated, was 'straightforward' as far as a coarctation repair goes, and recovery has gone smoothly.  We are a little over twenty four hours out, and she has needed only tylenol for pain.  She is on some oxygen (she still has an AVcanal that will need fixed down the road which could be the cause for this), and lasix (also likely from AV defect) to keep the fluid of her heart and lungs.  She has started taking some food by an ND tube, and will get to try oral once the speech therapist is here to evaluate eating.
We are finally getting to hold her for the first time today.  We are in LOVE with this little girly.  She seems so calm and laid back with a feisty spirit that is helping her recover quickly from heart surgery at six days old.  So really as far as medically, things here couldn't be going much better than what they are.
Shilo with her matching bow and binky.
Outside of the medical stuff, we could use some prayer for all the adoption mumbo jumbo.  While nothing is going 'wrong' per se, there are a few things that just aren't going at this point.  And of course, we greatly miss our little girly who is hanging out with grandma and grandpa back home.  We can't wait to see Abigail, and for the two of them to meet.  We are hoping that maybe we can skype with her in the hospital room so that she gets a better idea of what miss Shilo is like.  She is going to be such a great big sister, and we can't wait for her to get started on loving on her sister.

So there you have it for now.  I have some great hospital stories that I may share sometime soon, but for now I'm going to get back to sitting her enjoying Shilo.

Enjoying our second daughter,

Wednesday, November 16, 2011


Well, I had every intent of writing a book review.  That will not be happening.  Instead I will share a whirlwind of life changes.
About three weeks ago we finished our home study.  Abigail had the stomach flu, twice after that, I had it once, and Jason and I spent last weekend on the couch with food poisoning.  Monday around noon we found out we had been chosen by a birth mom due November 25.  Monday around four we got a phone call that birth mom had given birth on Friday (11/11). 
Tuesday morning we arrived at the hospital to meet our BEAUTIFUL little girl.  Without further ado,

Shilo Jendaya. 4lbs15oz 18-1/2" long.

 She will be having surgery tomorrow morning to repair a coartation of the aorta.  Or....her aorta is too small and they are going to fix that.  It will be a closed heart surgery.  I will *try* to update when I get the chance, but I would love if you would all be praying for our sweet Shilo.

Celebrating changes,

Monday, November 14, 2011


All right.  This is going to be a quick one.  I will probably post a little more later this week, but our lives are sort of a whilrwind of activity at the moment.
Anyway,  my Papal is home.  He still doesn't have great vision (it's double unless he's wearing an eye patch) and his left side is still a little less than his right.  So please keep praying for him.  He seems to be in good spirits, but like I said if he ends up stuck in his house it will be very hard on him.
Secondly, Abigail is much better (hooray!).  By some crazy and ridiculous fluke she got the stomach flu twice in a two week period.  Stinky.  Jason and I both ended up with food poisoning over the weekend (it was his birthday too...poor guy) and so I'm trying to recover our house because it was nearly hoarder looking bad.  Probably not really, but I can't handle the kind of mess we had. :)

So I have a book to review in the next few days, and another blog post in my mind that I need to sit down and write, but for now, my house won't clean itself.

Thanks for you prayers!

Tuesday, November 8, 2011

Sign me up for some prayer.

I have a couple of request that I would like to make of you, my faithful blog followers.

First of all, this is a picture of my Papal.  He will be 86 on Thursday.  He is, by far, one of the greatest men alive.  His wife, my grandmother, passed away twelve years ago from cancer.  He was by her side every step of the way, caring for her, cooking, learning to do laundry, and so many other things.  His heart was broken when she went to be with Jesus.  The things that keep him going are living close to family, being able to drive and do things for himself, as well as the fact that he still works five and a half days a week.  Pretty amazing man, huh.
On Sunday evening he had a stroke.  It doesn't appear to be a severe one.  However, his vision is double, and his left side is week.  He is in the hospital still, and will be on his birthday.  I know that he is looking forward to the day that he gets to be reunited with his wife.  I also know, that people don't live forever.  However, it will be devastating to him to not be able to drive, work, and live independently while he is still hanging out here on Earth.  So would you pray that his vision would be restored quickly, as well as the complete use of his left side!

And secondly, I have a sick little girl.  Again.  I am trying not to be crazy Momma, but my head seems to be moving to those scary places.  So here's the run down.  Two weeks ago yesterday, Abigail woke up with a stomach virus.  She was vomiting all day, and had a low grade fever.  The next day, no vomiting or fever, but she was tired (pretty normal stomach bug progression).  The third and fourth day she was back to eating and acting normal, with some weird intermittent vomiting.  Went to the doctor.  Said likely flared up either GERD or Masto stuff wait it out.  She had no more vomiting, but some *other* tummy troubles from Thursday until Tuesday of last week.  We have been a week of normal.  This morning we woke up to vomiting and low grade fever again.  Perhaps she caught the stomach virus a second time.  I'm trying to live there.  But when your kid's body is programmed to grow tumors, weird symptoms take your head to scary places.  So would you pray that if something more is going on it would be obvious.  And if not, that she would kick this thing once and for all so we can get back to normal here.  

Thanks all.  I'll try to update you on both things in the next few days!!!

Sunday, November 6, 2011

Borrowing a baby.

There is a family at our church with a little guy, C, who is about three and a half months old.  I often snuggle him on Sunday mornings until he falls asleep on me.  Every Sunday I joke that I'm going to take him home with me.  Today,  they told me if I really wanted to (temporarily) I could.  They are a very large family (8-9 kiddos) who were more than happy for a little break.  And we were more than happy for some baby snuggles.
Like most parents preparing for their second child, I have some worries.  I wonder how a new baby will affect Abigail.  Well, little C gave me a very small glimpse into it, and made me long for the day when we can bring home a new little brother or sister for her.
Abigail  happily held him for as long as she could.  She read to him from some library books, brought him toys, and gave him his paci.  If he started to fuss at all she would gently pat him and kiss him while saying, 'It's okay baby.  What's wrong?  What you need baby?'  My heart just melted.  She didn't show one ounce of jealousy towards him.
We did eventually take him home.  We decided it was time when she crawled up next to him on the couch and said, 'You going to be my bwoder.  We going to adopt you.'  Whoops.  I guess she was a little confused.  We explained he already had a family who loved him and would miss him.  But little C helped to wash away those fears I had of what it would be like with a second kiddo.
We believe in being prescriptive, so we have spoken over Abigail, again and againm that she is going to be a great big sister, and how good she will be at helping take care of the new baby when they come.  But seriously, she is going to be a great big sister, and she will be so good at helping take care of the new baby when they come!

Abigail holding baby C.

She even shared her submarine with him, which she puts away anytime she hears other kids are coming over.  It's one of her 'special toys' that she doesn't want to get broken.  At bedtime tonight she prayed for baby C, and that she would get to be a big sister and hold that baby and help take care of them!

Praying that a baby comes to stay soon,

Saturday, October 29, 2011

Cleveland news, and then on to something else.

So the news from Cleveland Clinic was that her tyrptaste level was normal (4.something ,with above 11 being abnormal, and above 20 being systemic masto-I think).  She also did not have the c-kit mutation.  This means, no bone marrow biopsy (woo hoo), she will likely outgrow it (woo hoo), and we still can't be sure if belly stuff is masto related or not.  The doctor was still waiting on the slides from her tumor that was removed in April, and will call us back after he gets those and is able to put some more puzzle pieces together.  We mostly are just elated for some good news.

Moving on....

Saturdays, in our house, usually consist of someone getting up with Abigail to take her potty, and then all three of us hanging out in our bed to be silly for a while.  This morning was no different.  Abigail steam rolled us, she tried to steal Papa's pillow, she gave me a couple accidental elbows to the kidneys.  She also went and got a book to read to me.  It's an old book, and a very simple one called 'My Red Umbrella.'  The premise of the book is that a little girl has an umbrella, it begins to rain, all the animals come under it with her.  It stops raining and they all leave.  Boring really.  So Abigail reads it to me today.  She started with 'Once upon a time,'  which is funny since we haven't read fairy tales, we don't do Disney movies, and I am unsure of where it came from.  None the less I was giggling while she layed there reading it to me very seriously.  The conversation that ensued afterwards though, was the icing on the cake.

Abigail-'Mama dere's a owl in dis book.  Hew, I find it and show it to you.  You hab to be caweful of owls.'

Me-'You have to be careful of owls?  Why do you have to be careful of them?'

A-'Well a owl came and took my eye off.  He took my umbwella too.'

M-'Oh my.  What did you do?'

A-'I asked him nicewy to gib it back.  He did.  I put my eye back on, and him gabe me my umbwella too.'

I really love my daughter and her imagination.  I am looking forward to all the upcoming stories that are forming in that little brain of hers.

Be careful of owls,

Friday, October 28, 2011

...and today she danced.

This week has been filled with the craziness that often accompanies Abigail being sick.  Things started out looking like a stomach bug, she added in some photophobia (light sensitivity) and then continue to have intermittent vomiting even after she was 'better.' 
The hard thing about the disorders that Abigail has, is not so much in the having them.  It's in the not knowing when to write things off.  Stomach virus, normal.  Check.  Second day lethargic,normal.  Check.  Photophobia, not normal, call the the opthalmologist.  Reassurance, check.  Vomiting once a day Wednesday and Thursday, despite being back to herself, not normal.  Trip to the doctor, check.
I really have no idea what to think.  I know I've said this close to 6 million times, but we have an amazing family doctor.  She is so reassuring when I come in, and never seems annoyed.  She agrees that there are some things we can't just 'write off' like you might with a typical child, because it's too high risk.  So the thought is that the stomach virus Monday, caused a headache with photophobia (and it got better by Thursday some I'm guessing this is true).  It also caused some inflammation and flare up in her belly from her GERD and masto belly issues, causing her to have the intermittent vomiting.  If it's not better by Mondayish she will start an oral steroid to help calm down the inflammation.  If things still aren't improving we will see a G.I. doctor.  I REALLY don't want her scoped.  So we are just continuing to pray it gets better.
She didn't get sick at all today, although it's not a fair assessment because she took benadryl this morning to prevent car sickness.  And benadryl also helps tame mast cells.  She also went all of Tuesday without getting sick. 
However, this evening, she danced.  She put on a dress up dress, and spent quite some time swaying and spinning.  'Watch Mama.  Watch Papa.'  'Clap.'  She seemed to be herself tonight.

I also have to end this post with some mad props to my husband.  I woke up in the middle of the night with Abigail's stomach virus that I had caught.  She was supposed to have a pulmanologist appointment today at Riley.  It's an easy appointment, just a following up every few months to make certain asthma meds work.  Jason got up this morning, went into work for about an hour, came home and took Abigail to Riley, brought her back and put her down for a nap, went back to work, came home and fixed her dinner, settled her in with some play-doh, and then went back to finish up everything at work.  I am so thankful to have a wonderful, loving, and compassionate husband.  I spent the whole morning on the couch watching netflix and drinking ginger ale.  I took a nap.  I am already feeling much better!!  All because I was able to get the rest I needed to recover quickly.

I have some test results from Cleveland Clinic, and plan on doing a post on it tomorrow. 

Wednesday, October 26, 2011

A new test for Down syndrome.

What if there was a test during pregnancy that let you know that your child would later be in a terrible car accident and become completely incapacitated?  That's unrealistic right.  Well, would you want to know if your child was going to struggle with depression and suicidal issues in the future?  What would your choice be if you could know that down the road your little one will have MS, ALS, Alzheimer's, cancer or the other host of disorders and diseases that abound?  Would you choose to continue the pregnancy?  Would you end the life growing inside of you because that child was going to 'suffer' in 30, 40, or 50 years with one of these disorders?

My daughter has a genetic disorder.  NF1 is a genetic mutation of the 17th chromosome.  While it can mean some hardships in her life, it is also her genetic make-up, and effects who she is, and what she looks like.  I am extremely thankful that this wasn't known about before birth, nor is it common to test for it (a parent who already has it can request the testing).  I like my daughter.  I like her genetic make-up.  I DO NOT believe that her 17th chromosome being different than mine is something that needs to be 'fixed.'  I hope and pray that some of the things that can come along with NF can be treated or cured.  I don't want to change my little girl.

Recently a study came out talking about how parents, sibling, and people with Down syndrome perceived their lives as a result of Down syndrome.  You can read through the numbers on the links I provided, but I will sum it up for you:  these families are happy.  Divorce rates are lower.  Siblings, overwhelmingly, said they were better people as a result of having a sibling with Ds.  The study showed a great picture of joy that often surrounds the families of children who have Ds.

On the heels of the release of this study, comes a new test.  In general when a woman is pregnant there is some basic measurements and such done at an ultrasound that can look for markers of Ds.  There is a blood test they offer as well that assesses your risk through some hormone levels and factors in your maternal age and the like.  If you come back as higher risk in this category, or have some soft markers in the ultra-sound, but nothing definitive, you can, from there, choose to have an amniocentesis.  There is a risk of miscarriage with amnio though so it is often a hard decision.  However, as I've mentioned before, the abortion rate for people who find out they are pregnant with a child with Ds is 90-94%.  That means that for the 6-10 people you might meet that have Ds, 90-96 of their peers are not here.
But because amnio is risky, Sequenom developed a new, more accurate, blood test for Down syndrome.  This testing will increase the amount of woman who have genetic testing done for Ds, increase the amount of Ds diagnoses inutero, and therefore increase the amount of these precious little ones who are being aborted.  The test is supposed to help prevent people from having to have a 'risky' amnio on a 'healthy' child. 
Instead it exacerbates an already large problem to greater proportions.  We have an epidemic on our hands; a genocide that is taking the lives of children, who, if they were allowed to live, would most likely be happy in life, and cause their parents and sibling to feel similarly.  We fight to protect an endangered species of animal.  We fight against the killings and maiming of people in Tanzania that have albinism.  Both of those things are great things to stand up against, but  right here, in our front yard, we do all that we can fight for the 'right' to wipe out a whole people group because of their genetic make-up.

Doctors are known to lean towards the abortion route for expecting parents.  They give this grim diagnoses of what life is like with a child with Down syndrome, DESPITE the fact that studies clearly show that it is not the doom and gloom that most people are lead to believe.  People with Ds are active, wonderful parts or our society.  They grow up to have jobs, some go to college, and some get married.  JUST. LIKE. YOU.  People with Down syndrome have hopes and dreams, they have feelings, they have likes and dislikes.  Yes, they also have an extra chromosome, something many of their parents refer to as being 'chromosomally enhanced', not chromosomally challenged.
Matthew 25:40 states, 'Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.'  We are taking a vulnerable population, unborn children, with Down syndrome, and trying to prevent them from ever experiencing life outside of the womb.  That's what we are doing for Christ.  We are killing, because we see what we perceive as a weakness; a weakness that the families who experience it have shared does not cause the breakdown of their family.  A weakness, that some families, after experiencing it, go on to adopt another child with Down Syndrome.

'My grace is sufficient for you, for my power is made perfect in weakness.' (2 Corinthians 12:9)  What if we are wiping out a whole group of people who show us Christ in a new and different way; a group of people who are made perfect in their imperfections?
What if we are so excited to see a new and better genetic test that we forget to see these beautiful children?

Emmie.  You can read about her here.

Liddy.  You can read about her here.

Verity, and

Katerina (Katie) are sisters.  You can read about them here.


These children are loved greatly by their families.  Their families are happy, active, and 'typical' families. 

Monday, October 24, 2011

Tiny Dancer

Abigail woke up from her nap yesterday with soft songs coming through the monitor.  I listened for a few minutes and then climbed the steps to her bedroom.  When I opened the door her boundless energy began pouring out. 
'Mama I awake.  I took a biiiiiiiig nap.  I hungwy.  Where's Papa?  I gonna watcha Pudue wis Papa nother gain.'
I layed down next to her and kissed her face.  She moved away, 'No sank you Mama.'  So I rolled over top of her and declared, 'steam roller!'  She giggles and steam rolled me.  After determining I was 'flat like a pancake' she poured syrup on top and ate me.  The giggles continued to flow out of her as I wiggled and begged her not to eat me.
After she got up we made our beds and I sat in the rocking chair in our bedroom.  I turned on some music and for the next twenty minutes Abigail danced.  She twirled and jumped, curtsied and skipped.  And I sat quietly and drank it all in.
Sometimes I feel like I just can't get enough of her.  Her beautiful face, her curly hair, her big brown eyes, and eyelashes that go on forever.  I am completely mesmerized by her, and just get lost in her beauty.  I can't believe that she's my daughter.  How did I end up with someone so wonderful as her.
She giggles as she sways and declares, 'Mama watch dis.'  I watch.  I stare.  I don't want to miss a moment of it.  I feel like I can see her getting bigger as she dances, those moments of toddlerhood are passing before my eyes.  I don't want to look back and feel like I wasted them cleaning my house or rushing her along.

It's good to be reminded of those things, so when you are awake at 5 a.m. changing sheets because your three year old has her first stomach flu, you don't see the work and the sickness.  You see a little dancer who needs to be nursed back to health, because her audience misses her dances.  So you diligently scoop her up and do everything you can to make it all better.  And this time she doesn't say no thank you as you kiss her soft skin all over and 'swuggle' her.  She just melts in your arms and you pray over and over again that she will return to dancing soon.

Saturday, October 22, 2011


A while back Abigail and I were sitting at the table eating together.  She asked to listen to music and so I turned some on.  She then proceeded to say something to the likes of , 'Papa hab secwets.'  I nearly freaked out, but like a good Mama stayed calm and told Abigail that she should always tell Mama if someone tells her something is a secret.  'What is Papa's secret?' 
Her response, him wisten to ipod with his secrets.  Now I'm sitting there thinking what the heck are you talking about, until she made a motion with her hand and it all made sense.  These my friends are secrets.  They go in your ears and tell you stuff.
Papa's secrets.
Phew.  I mean I trust my husband completely, but that was a little scary you know.

So yesterday morning we are sitting at the table again and Abigail chimes in to tell me about Papa and Mabby playing together.  I assumed I heard her wrong and asked, 'Who's Mabby?'  She went on to explain that Papa and Mabby played while I was at my meeting the other night.  I didn't jump to any conclusions because Abigail has imaginary friends.  I tried to get more out of her, but she just kept talking about Mabby and Papa playing.
So last night we are all in the car together and I asked Papa who Mabby was.  He was thoroughly confused and so we tried to get more out of Abigail.  Turns out that this is Mabby.


I imagine you recognize Mabby.  Mostly because it's Abigail.  The other day we were somewhere and someone asked her name.  Despite the fact that I said, 'Abigail' they responded with 'Hi Abby.'  For some reason that stuck in Abigail's head, and she heard Mabby.  (A little tidbit for you, if someone tells you their kids name is a full name, like Abigail, Joseph, Patric, etc, it's probably because the go by the full name, so don't shorten it).
While there have been two crisis averted at our house now I am more on guard against my little girl who seems to want to cause some wreckage at home...

Wednesday, October 19, 2011

Second time around.

We had our home visit to complete our home study tonight.  It's been sort of funny to me how differently I feel this time around.  The first time though I moved all the furniture and scrubbed the floor by hand. I laugh when I remember that I also got a grout brush and cleaned the grout lines on the tile floor in our bathroom. We made certain the bedroom was set up and ready to go. Everything looked just right.
While there have been things in our home that needed done (like pictures that have been waiting to be hung for months) that we finally did, it's not nearly the extent that it was for our first home visit.  Matter of fact I was putting laundry away when she got here.  Whoops, probably should have timed that better.
I also can't believe how much faster the nesting has come on.  While it was there the last time, it didn't get strong until we actually found out about Abigail.  Not this time.  I have been picking up clothes here and there, making a blanket, washing some diaper stuff that got handed down (we cloth diaper), and trying to stay on top of the house so we are ready whenever the time comes.

So for now we are officially home study ready, and are currently breaking it down at our house to the song 'Dynamite.'  It's Abigail's new favorite.  I need to go throw my hands now. 

Monday, October 17, 2011

One smart....cookie.

Papa and Abigail making cookies together.

Abigail had been begging to make cookies for days.  So Friday night Papa and Abigail rolled up their sleeves and got to it.  She got to eat two that night and has of course asked for them every day since then (I won't mention the five or more at a time how many Papa eats in a sitting).
So this morning my very smart little girl decided to make an attempt for a cookie at breakfast.

A-'Mama my mouf huwts.'
M-'It does?  I'm so sorry.  Do you think you need to take a drink of water?'
A-'No.  I don't fink water would help.  I can't eat my yogurt 'cause it hurts.'
M-'What can I do to help your mouth feel better?'
A-'I sink that a cookie would make it feel bettew.'

Seriously.  When did she become smart enough to try to manipulate her mother into giving her a cookie.  She did get one, after she ate her yogurt and breakfast bar.  I have a feeling that I might be in trouble with this one.

Saturday, October 15, 2011


Before you read any further in this post please go read this blog entry.  It's beautiful isn't it.  I read it tonight, and it seemed like a good jumping point for some thoughts I wanted to share.

What seems like forever ago, we were waiting on a baby.  God had told us that He was bringing us a little girl and her name should be Abigail.  During that time period, I watched a neighbor girl have her fourth, fifth, and sixth kid (she has eight now).  I also watched her not doing much parenting, and leaving it all to her oldest, who was around nine at the time her sixth was born.  I became slightly indignant and made certain to let God know how unfair it was that someone who didn't want kids kept having them, and someone who did couldn't.
On a warm day my husband, our dog Maggie, and I were our for a walk.  Some friends were outside.  They told us that they were pregnant, with their second.  During this time in my life the announcement of someone being pregnant always left a little sting.  However, this particular pregnancy was unexpected, and they seemed a little more exasperated than excited (they did eventually become excited, and they definitely love this child).  I was both heartbroken, and pissed.
I came home that day and went to my bedroom.  I sobbed as I told God just how unfair He was being.  I let Him know just exactly how I felt about people who didn't want to be pregnant having multiple children and on and on.  I carried on with my little fit for a while before I just layed there and cried.  God allowed me to cry and whine for a while (much longer than I allow it from my daughter).
And then,tenderly and firmly, God let me know a couple of things.  He first let me know that He could make it so that I could get pregnant.  That wasn't too hard for Him, and was something He would be more than willing to do.  He also clearly let me know that IF I got pregnant, it would not be the child He had promised us, and it wouldn't hold the same promises as our Abigail.
I won't say that the wait wasn't painful from there.  This was revealed to me at the very beginning of our process so we still waited over two years from that point before we heard about Abigail.  However, there was something about knowing that God really did have a plan that instantly took the bitterness away.

Like the blog I posted above talks about, it's really easy for me to look in the rear-view mirror and see how smooth that all was.  A long wait ended in a beautiful relationship with Abigail's tummy mommy, and one truly amazing little girl.  Our lives have been so full and rich, not only just being parents, but learning so much from God, as the result of getting to be Abigail's parents.  The trip felt scary, and I white knuckled it for sure, but here we are.
And like any crazy person along for this ride, we have decided to travel that same scary road again.  Most people would think that the second time around wouldn't seem quite so bad.  You know where most of the bumps are, and you know what the end result is.  I, at least, have been trying to tell myself that.
In reality though, I am just trying to keep from feeling the pain again.  Silly, I know.  So last night as we watched a show together, and a couple finds out they are chosen to adopt a baby, I felt it.  That ache that sat in my chest while we waited for Abigail.  That feeling of longing for my child, and knowing that all I can do is buckle up, and hold on.  I have been fighting it for a while, but couldn't control it any longer last night.
The truth is, despite that I have been on a very similar road, and despite that I can scoop up the most beautiful results in my arms, and kiss her repeatedly until she says, 'no sank you mama,' I am scared.  I spent three years walking around with that pain.  It just sat there, day in and day out.  Sometimes it got worse, but it never went away.  And honestly, I don't want to feel it again.  I especially don't want to feel it again for three years. 
It's that feeling of being heartsick, the feeling of hope being deferred; the reason that Abigail's middle name is Tohelet.  'Hope (Tohelet) deferred makes the heartsick, but a longing fulfilled is a tree of life.'  Proverbs 13:12
I don't want to live heartsick.  Yes, it's different this time, because I already have my first Tohelet upstairs sleeping right now.  That doesn't make it easier.  So we have buckled ourselves in, my knuckles are white, and I have tears streaming down my face.  But somewhere in me, just like before, I know that one day, I will get to look back, and realize that this road wasn't so scary.  And the company, the smiles, and the conversations I will get to have with the driver, will make the memory of this road even sweeter.  There will be much laughter and celebration when we arrive at our next destination as well.

Longing for our next child,

Thursday, October 13, 2011


With my sad face.

With my happy face.

And finally my excited face.

That's right my friends, Abigail is going to be a big sister.  When?  I don't know.  We will see what God's timing turns out to be this time around, but we are 'expecting' for the second time.  Our home study is extremely close to being finished, and from there, a baby can come at any time.  So won't you join us in praying for the next little one that God has lined up to be our child.

With joy,

Tuesday, October 11, 2011

The run down...

So after some chaos, stress, and an extra night in Cleveland we got to talk to an expert in the area of Mastocytosis.  I'll give you the run down of what the last few days looked like and where we are with all of it.
We drove to Cleveland Sunday night and stayed in a hotel.  Monday morning we got a phone call that the doctor we are scheduled to see had hit a deer on the way to work and needed to reschedule.  We kindly explained that we were already in Cleveland and needed to see someone.  However, our big dilemma is that the doctor we were supposed to see had masto listed as a specialty and none of the other doctors.  The lady I talked to continually reassured me that all of the doctors are capable of handling the same things.  So I relented and we made an appointment with someone else.
So we ate breakfast at the hotel, and headed over to this awesome park called Preston's Hope.  We spent lots of time playing, and left with plenty of time to get to the clinic and eat lunch before the appointment.  Well, accept that all of the roads in Cleveland Y into three roads, turn into a different road, and we ended up taking much longer to get there. 
We pulled in the parking garage and drove in circles going up and up and up.  We parked at which point Abigail let us know she was going to get (car) sick.  So by the time we got inside she had puked, we only had enough time to get to the appointment, and we were all grumpy and hungry.  Deep breaths.  Deep breaths.
We do all the check-in stuff and the doctor comes in.  He is an amazing doctor.  He was kind, knowledgeable, and extremely helpful.  He knew very little about masto, and actually shared the other doctor we had an appointment with wasn't really an expert either.  So two hours later we leave his office to go eat something.  At this point we are waiting to hear if yet another doctor will see us today, and if we can stay at the Ronald McDonald house for the night.
So after lunch we find out that we were on our own for a place to stay, and that if we stayed we still weren't guaranteed an appointment today.  We contacted a friend's parents and decided to stay with them in hopes of meeting with another doctor who could answer questions and point us in the right direction.
After a much better night of sleep, and people familiar with the area who could explain how to get where we were going (plus a personal phone call with the original doctor we were scheduled to see yesterday) we got to see an expert in mastocytosis today.
It was SO worth the extra night.  He answered tons of questions, explained things very thoroughly, and gave us a plan of action as to where to go from here.  Our biggest questions at this point are whether Abigail's masto is cutaneous (only on her skin and she will likely outgrow it) or if some of her belly issues are from systemic masto.  I knew there were a couple of blood test that some people have done to check a tryptaste level, and to see if there is a mutation in the c-kit in the mast cells. (You don't need to understand that, just helpful for people who are familiar with masto already).  So he said that we would check these two things and that would help us decide if further testing needed done.  He is also going to look at the sample slides from her tumor she had removed from her leg.  So in essence we understand a little more, but still don't know anything definitive about Abigail. 
However, we are extremely grateful that after two crazy long days we are on our way to getting some more answers.  Abigail is in bed, and we are resting, as well as looking forward to a night in our own bed.  I will do another post after we get more test results back.  At this point there is no talk of seeing a gastro doctor, no bone marrow biopsy scheduled (her results we are waiting on will determine if she needs one or not), and no need to limit any foods! 
You learn a lot when dealing with unpredictable disorders.  The biggest lesson I have learned thus far is definitely that you enjoy the here and now.  So we are celebrating not seeing a gastro doctor, no biopsy needed right now, and not limiting her food.  If things change we will roll with them as they come, but for now, we are thankful.