SERIOUSLY???

Life cannot be this easy. A couple in New York have taken up painting things that they want. Then they sell the painting for the actual price so that they can buy the item. Then they go buy the item and post a picture of it. This is a crazy concept...and I feel like a damn fool for not thinking of it first!

If you can stomach it, check it out: http://wantsforsale.com

Anyone interested in a painting of a 52 inch plasma screen television?

Army Men

This post is for all the tall people who can't get enough
Army Men

Parting Shots...

Going Home!!

Just got the call from Jake. Dr. Shapiro is ready for us to leave!! YEAH! He thinks she looks great and we are free to go pick up Jake and Lucy. Which is great because some of Jake's old beer started exploding in the garage this morning and I am surprised that the police did not show up here looking for a gun fight!
Needless to say, we are so thankful that this has gone so well. We are so thankful for all the love and support that we have gotten. Big shout out to our siblings who have been especially supportive. I think Jake is going to take over my blog so that should be entertaining.
Check back later for one last picture.

Another Day.....

Dr. Shapiro came by this morning. He said that her lungs still look gunky on the x-ray. He listened to her lungs and they sound fine, but he would like her to stay in the hospital today. Hopefully tomorrow she can come home. We have to be careful that things sound good with her lungs because she is at risk for developing pneumonia. During the surgery they stopped her lungs and the this can cause stuff to get stuck in there. As a result of that we have to make sure that things get moving. So thats that. Kind of disappointed, but I don't want her to come home and then us go right back to the hospital for pneumonia.
But the boys are coming home today and that is pretty awesome. We cannot wait to see them, and it will be nice to have them in the house tonight so that my imagination doesn't get the best of me!

15 Years Ago....

Jake & I went to Frankfurt for a tattoo festival. I don't think we have been apart (spiritually) since that weekend. I look at these pictures and it makes me laugh & cry because these kids don't know all the happiness, joy and sadness that lies ahead of them. I would not and could not choose another person on the planet to be my soul mate on this crazy adventure. So thank you Jacob for everything that you are and everything that you do. I love you sooo much...I would shoot up in the air for you.

Lucy's Smile

This is not the best picture of her smile, but you get the point. She is smiling! That lets me & Jake know that she is feeling more like her old self, with a better heart!

Moving

We are about to leave the PICU and go to our new room in the ICU Step Down Unit. This puts us one step closer to home! Yeah!

Sucking on Air

Lucy prefers to have the cannula tube in her mouth. Dr. Shapiro let me know that this is fine with him because she is still getting the oxygen!

Which Item is Missing?

If you guessed "Drainage Tube" then you are correct! They came by and removed it this morning. She had another chest x-ray and they think everything looks great. The bottom portions of her lungs are a little collapsed, but they think with us picking her up and moving her around that they should re-expand with no problem. She is doing great and we will be moving into the Step Down Unit today! I do not want to be too hasty, but we could not have asked for a better recovery. Lets keep hoping that things keep going well.
Hope everyone has a great weekend!

Scenes from the PICU.....

Ponder This....

Now that the excitement has died down, I find myself really thinking about the miracle of this surgery. Lucy's heart is the size of her fist. Her FIST!!! Dr. Fox had to work inside of a heart the size of a small plum and not touch any of the nerves running through it or around it. Then he had to sew, SEW, patches onto a dime size hole and another hole smaller than a dime. All this inside something the size of Lucy's fist. It blows my mind that Dr. Fox walks around like a normal human being and people in the real world don't know the kind of gift/power that he has. Dr. Fox, Dr. Holt, and Dr. Shapiro are real life super heroes. Not to mention all of the awesome nurses, respiratory therapists and C&As that care for Lucy and help her to heal.
Makes me want to go out and make a difference in the world. Excuse me while I count the Box Tops for WPS! :)

Aunt Jenny is Awesome!

Aunt Jenny made a blanket for Lucy and on the blanket were pictures of the people in her family. Aunt Jenny said it is the family giving Lucy a hug! Thank you so much Jennifer!

Excellent Progress

Dr. Fox Approves

Lucy alternately slept, ate, and pooped well last night. Her voice is coming back, and she's definitely more coherent. Her surgeon and cardiologist stopped by and approved of her progress. This morning we are losing one of the two chest tubes, the pacer wires, and one of the IVs in her wrist.

Dr. Shapiro hearifies moistification

Her lungs are still a little "moist", but they are not concerned. We will be trying to move her around a little bit more and feeding her more. She will still be in the PICU for one more day because of the remaining chest tube, but her docs are optimistic that she'll move to the step down tomorrow.

Thar She Blows!

We have poop! Funny how the smallest things configure into making us well human beings. So she has had a big day: eaten & pooped. She is on a little bit of oxygen through a cannula tube, the dr. wants her oxygen saturation level at 100% to help get her lungs clean. Her voice is still really raspy and sometimes nothing comes out at all, but they assure us that is natural. They did give her some ver-sed which is a medicine that helps with anxiety and it is really cool because it is an amnesiac (she won't remember anything after getting the medicine...until it wears off!). So she is in a good place and will hopefully get a good nights rest.

On a side note, Jake came up with the clever title for this post. He thinks he is so hi-larious!

Waiting to Poop

Lucy ate about 4 oz at noon and 2 oz at 4. She has had a stool softener and a suppository, but still no poop. It is also useful to note that she is on a morphine drip, and morphine can cause constipation. So it is hard to find a balance. I know that she must be uncomfortable since she has not pooped since Monday. Jake & I figure that she might be able to relax more when she finally has a good bm. Keep checking back for the next poop update! :0

Scenes from the Waiting Room

Here are some pics of us waiting yesterday. Lisa, Brian & Melanie waited with us! Sadly the puzzle bested us and it never reached completion.

Dr. Holt

Dr. Holt is a rock star. He is our cardiologist and I love the way he is so concerned with Lucy's wellbeing. He has come by everyday since she has been here. He is such an awesome doctor. I feel safe putting Lucy's heart into his care. He is really happy with her progress. Her contraction and rhythm look good to him! Yeah!

For Your Viewing Pleasure

Off of the Vent!

They took her off the breathing machine last night. She is a little raspy, but, at this point, it does not look like there is any damage done to the nerves that control speech and eating. I cannot express how relieved we are about this news. So she is up and giving them some attitude right now. Anyone who knows Lucy knows that she is not shy about expressing her views!! Will update more later!

No more Pace Maker!

I am about to leave, but Jacob is going to spend the night here with Lucy. She is doing great and is off the pacemaker completely. The next step is to get her off the vent, and she just needs to wake up more before they do that. The medicines need to wear off a little. I am sure we will have more to report tomorrow morning! Thanks again for all the support!

In the PICU

She is connected to all of her machines. She is doped up and resting. The nurses say she looks good. Her heart is really keeping it's own beat and the pacer is only kicking in once in a while. So now we just have to recover. We will keep you posted!

And she is out!

She is out!! We just talked to Dr. Fox. He thinks it went really well. Her heart is still waking up and needs a little help from the pacemaker right now. He is not discouraged because her heart is competing with the pacemaker to take over. Hopefully this will resolve itself. So now they are hooking her up to all the machines and we will be able to see her soon.
Keep the prayers coming! We still need to make it through recovery and make sure that all is right inside.

Almost to the Finish Line

Okay so it is 11:17 and they have the patches in place. Now Dr.Fox is going to make sure that her heart is beating and contracting regularly. After he is satisfied they will start to ween her off the heart & lung bypass machine. Then they will take another picture of her heart to make sure that there is no leakage. So the next phone call will be to tell us that we are off the bypass machine and then we will have a conference with Dr.Fox. I will post next to let you know that she is out.

Point of No Return

It is 9:52 (central time) and they just called to give us an update. They have all the IVs in place and Dr. Fox is scrubbing in. So now we are at go time.

Here we go....

So we are set for a 9 am surgery! We are taking the laptop to the hospital and will be making regular updates. She is going to do great!

Pre-Op Day

So today Lucy has to go in to get all sorts of stuff done. They have to make sure that she has no infections brewing, double check that they have the right blood type, and make Mom fill out financial info. We sure are nervous. The boys are at Oma & Opa's house and I miss them already.

Check back later today and I should have the info on what time we go in tomorrow. Prayers are welcome! :)

Ethan's letter to Lucy

Ethan wrote the following letter to Lucy:

"I love you so much Lucy. I hope your srjry goes well. You are the best sister ever. I can't wate to have you back. Love your big brother Ethan."

He is so awesome! I am such a lucky Mom to have such wonderful kids.

May 21st is the big day!

Okay here is the down low. Dr. Fox thinks that Lucy is a terrific candidate for this type of surgery. She is the right age, weight and she is in good health. She does have a moderate VSD (which is causing most of the problems) and a small ASD. The patches will be gortex, which is kind of cool. She will go in early on May 21st, and the first thing they will do is to intubate her and put her under. Then they will start IVs. This could take a while because her veins probably have scar tissue from her time in the NICU. He is estimating an hour just to get the IVs started. The surgery itself should take 3 - 31/2 hours. Then she will come out and it will take 30 minutes to get her hooked up to the monitors and resting. When she comes out she will look something like this:
As you can see they will be monitoring everything in her body. There are some hurdles she has to pass before she can come home. 1) (#5) She has to get off the breathing tube and breath on her own. Sometimes this takes hours and sometimes it takes days. Dr. Fox estimates maybe a night. 2) (#3) She needs to maintain the rhythm of her heartbeat. She will have pacer wires to monitor her heart rhythm. These are threaded in and sutured into place. These will allow the doctors to control the rate & rhythm of her heartbeat. If she is not able to maintain her own rhythm then they will have to put in a pace maker. 3) (#13) The excess liquid in her chest needs to clear up. These are the chest tubes that will allow the blood and extra fluid to drain from her chest. When liquid stops coming out of these then there is no more excess fluid to pull out. 4) We need to know that she can contract her heart. She has extra blood in her heart right now b/c of the holes, and that makes it harder for her to contract her heart and get that blood out. Hopefully once they close up the holes there will be less blood for her heart to move around and it will be easier for the heart to contract. Those are the big ones. Otherwise we need her to eat and poop.
There are things that can go wrong, but you can use your imagination for all of those things. I don't want to get into all of the gory details. We are going to hope for the best...obviously. Dr. Fox does these types of repairs all of the time. I asked about him on our Down Syndrome board here and we got nothing but positive comments about him and his work. So there it is. Needless to say, we are scared out of our minds. We are trying to push those negative thoughts aside and stay positive. We want her better and we want to move on.
So that is it for now. We shouldn't have anything new up here for 2 weeks. If you have any questions, please feel free to ask them. Thanks for all the love and support. I will leave you with a picture of Lucy and Nurse Maggie...who is one cool nurse!

Dr. Holt ~ Our Cardiologist

Dr. Holt is a great doctor. I feel like he is really concerned with Lucy's well being. Which makes me feel secure. He explained once Lucy is intubated and in surgery he, or one of his associates, will drop a camera down Lucy's throat and take pictures from behind her heart. Mel has a big word for this picture taking procedure but I cannot even pronounce it let alone spell it. Fancy Nurse Terms! This will give the surgeon a better picture of what needs to be done. After the surgeon is done, Dr. Holt will come back in and take another picture of her heart just to make sure that the patch is secure and there is no leakage. Dr. Holt will be with Lucy during every step of her recovery working with the surgeon and neonatologist.

We meet with the surgeon, Dr. Fox at 3:00. Will take notes so that I can accurately portray the facts.

The Big Meeting

I am starting this blog so that there will be a convenient place for people to check on Lucy's status during her surgery and hospital stay. We will have the computer at the hospital and will be able to update the blog and get information out quickly.

We have two doctor appointments on Monday. First we will meet with her cardiologist Dr. Holt and later in the day we will meet with her surgeon, Dr. Fox. We will have a lot of information to pass along after meeting Dr. Fox. They will spend the afternoon giving us a blow by blow of everything we can expect before, during and after the surgery. They even suggested we bring a tape recorder so that we don't miss anything! I am not looking forward to this appointment. Talk about an intense and stressful Monday.

Anyways I hope that this blog is helpful. We are so thankful to have so many people that love us and our children. It is helpful to know that we are not alone in this.