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.

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,

today.

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

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. :)

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.

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!!!!

picu.

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. ;)

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,

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!

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.

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!

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,