Colors...

It just so happened that I looked outside today only to realize that its fall.  The colors everywhere made me want to grab my camera and some people of the street and go shoot(photos people not animals).  Oh, I forgot how the hospital keeps you from realizing what goes on outside of your little world.  I had a friend let me know about the miners in Chile by facebook message, or that one would have passed me by too. 

So now for the good stuff.  My baby is SO strong and amazing.  She is practice nursing and loving it.  She latched with no hesitation.  That was an amazing step for us, as we worry about the Neuro stuff that showed me that she has the want to eat by mouth.  Hopefully she will get the stamina to eat by mouth soon. 

Ry is up here with me for the weekend.  He picked my up last night in Plainfeild.  My girls broke me out of the hospital to do some needed shoe shopping.  My feet are screaming up here with bad shoes and a long walk.  So, they took me to Metropolis and we ate and shopped and enjoyed life on the outside for a few minutes.  I have to take him to the airport sometime on Sunday, but I'm not sure when.  All I know is that I will have a vehicle and that makes me very happy!  

Well, hopefully I will get some more pictures us soon.  (and not ones of random people and fall settings)
Happy Weekend to you all....

Little Hurdles

Well, things are finally looking a little better. Not much has changed, and believe it or not, that is a good thing. She is eating well, gaining weight, and pooping. All things we want to see. She is working on bringing her breathing down to a respectable rate, but all things with time.
As far as the MRI drama, it is a waiting game. We will not know anything remarkable until she starts developing more. We are just praying that she just keeps developing and eating and growing. She is our miracle. She is such a strong little critter with just as much drive as her big brother. I know that the world has big things in store for her and I will let her determine what she wants to do with her world.

Well I am up here on my own this week trying to prepare for Ryans 2 week travel. He will be in Michigan from the 17th until the 30th doing training. We are trying to arrange childcare for Jasper and boy is that a chore. We might just find a temporary day care up here and keep him at the RMD House with me in the evening. Its not ideal, but really what is? We just hate to burden anyone. I am hoping and praying that something works out. My mom is getting antsy to get back to work, so we have to get him out of her house and up here (or somewhere!!)

Miss Tempe is really a wonderful baby. So my update is this... We are waiting. Just trying to make some milestones and do our best to get her healthy and ready to go home. She still has some little hurdles to overcome, but I know she can do it. I just keep going and trying to make every day a good one. We have passed up the bad days. I am not going to let any more bad days come my way. I have too many things to be thankful for to give the bad days the upper hand. Right? Seriously... I am blessed with an amazing husband, amazing friends and family, and children that are stronger than I can ever be. I am blessed. Sometimes an occasional bad day reminds us that we need to just be thankful for what we do have and the love that we blessed with.

I had to throw a new picture of Jasper up, he painted pumpkins with his girlfriend Gaige. Half naked painting is the new thing...
Much love,
Tessa

The News...

Well first, the bulk of the update ...is that today was a tornado. 
A dear friend visited and I needed her hug and support. Good
My family brought Jasper.  Great
Jasper cried when I left the room.  Good ( I needed that)
Tempe's MRI results came back.  Bad
Tempe is still off her vent.  Good
Tempe is not eating very well.  Bad
We are spinning in circles.  Bad

We are pretty much lost.  Even though we have done some of this before, this is just not getting any easier.  We just want so bad to be at home cuddling our precious children and read stories to Jasper.  I want to nurse my baby and not pump all day.  We want to not worry about MRI's and EEG's.  We want a break.  We want our kids to be healthy and thriving.  Do we want too much? Are we greedy?

Sorry if this is a depressing post, but no matter how much lexapro I take, no matter how much I try to talk myself into being "super Tessa", today has sucked.  I am the Queen of optimism.  I am usually the one telling everyone to cheer up and find the light in the day.  Today my light is dim.  I just want someone to give me the light today.  Give me a reason to be excited and motivate me to keep chugging.  I know that we think that God and the universe does not give us more than we can take on, but seriously... What is this?  I know that I am the one who thinks that I was chosen to take care of special kids like Jasper, but I never thought that Tempe would have to run the same race.  I never thought that Tempe would be challenged more than Jasper.  I never wanted her to struggle the same way that he does.  He is amazing, but his road is bumpy and challenging.  I wanted her to be is support, his cheerleader, and his best friend. 

As for the MRI, I don't want to get too medical, but it showed evidence of a stroke on one side of her brain stem.  Pretty significant damage.  We really don't know what that means other than her very high risk for Cerebral Palsy, and significant damage to the section that controls motor function. 

Well friends, keep praying and thinking of us.  I know that you all are, and we thank you for that.  We need more miracles.  We need strength.

Tessa

Pics of Temperance

As promised.  We are going to bed early so we can get up there early.  So my post will be brief. 
She is still fighting, and fighting hard.  Hoping and Praying that she comes of the ECMO circuit tomorrow.  No promises, but we have a lot of hope.  Still not out of the woods yet, so we are still praying very hard.  Her lungs and heart have to want to keep working for her to be successful of the ECMO Circuit.  We are also praying that her Neurological function is better than what it seems.  We really have no idea what it is for sure, but she has to potential to have a lot of damage from lack of Oxygen.  We know what that did to Jasper and how far he has come over the last two years so he is a good example of what good therapist and determination can mean. 

We appreciate all the love that we are feeling for everywhere.  This little girl is a blessing, just like Jasper is.  We have reconnected, connected with so many people that care.  I know that she will have the same light that Jasper does.  He just has a way to make people love him, but at the same time he can give people a different view of self and how they can impact the world.  I know that seems heavy for a two year old, but I know that it is true.  I know Tempe is doing the same thing.  The following are some pics so you know who you are thinking and praying for. 

This is at Bloomington Hospital right after birth. 

This is up here at Riley.  The two red tubes at the top Right had of the picture are her ECMO blood veins.  That is what is doing the work of her heart and lungs. 

 You can see that we put a picture of Jasper up in her bed so he would be there with her.  It is behind her giraffe. 

Close up of her Beautiful little mug.

Beautiful little hand.

Keep on Chugging

So we are still here.  That is huge.  We are working to get to having Tempe do more work and the machine do less.  This is a very slow moving process as it should be.  We have to make sure that her lungs and heart are ready to do the work.  I know that a lot of of you have wrote love notes to her, but we wont get them until Monday.  We did not get in the the Ronald McDonald house tonight so we are camping in the waiting room.  Luckily its not that bad in here tonight.  Normally it can be a circus, but its pretty calm tonight.  (For now!) 

I will take pictures of her tomorrow.  I have held off becuase I think seeing a baby on life support is very scarey.  I know that it does not bother some people but, when you have had one child on life support already, you know how scarey it is.  You know that a machine is what is keeping your baby alive and it is hard to want to document that.   But in the hope that she keeps chugging, I want to share with you her beauty.  She has the same natural light that Jasper has and I know that people are praying for her all over the world.  Its has been amazing to see how many people care.  I saw a 2 friends that I have not seen in years, becuase they wanted us to know that they were here to help us out if we needed it. 

Jasper is keeping my mom busy.  He has mastered tearing apart her cabinets, and as Im sure some of you know that has to be keeing my mom on her toes.  He is such a strong boy. 

Well, I need to attempt to sleep. 
Much love,
Tessa

Love Notes for Tempe

As I was trying to fall asleep last night I thought that I wanted to read more to Tempe while we sit in there with her. My friend Amy has sent us emails through the Riley site and they print them off and deliver them to us.  So in my head that is the best thing you guys can do for us... please write Tempe note of encouragement and I will read them to her at her bed side.  She needs to know that she is loved and strong and can keep fighting.  I know you are are praying and I promise we feel it.  Good things are happening slowly but surely. 
http://rileychildrenshospital.com/information-desk/patient-email.jsp  Just email Temperance Thompson and they will deliver it to us. 

Much love,
Tessa and Ryan