Worth a thousand words

Maddie is 26 days old today. We finally got to hold her.

Viagra

i posted this video a few months ago. Maddie started trials with viagra yesterday.

Using Viagra to Treat Birth Defects

Maddie had an eventful day today. Morning was taken up with an x-ray and an echo cardiogram. The doctors had discontinued a medication for her pulmonary hypertension earlier in the week, and the echo cardiogram was a follow up to see if her hypertension was still doing OK. It was a good echo, and they might start to wean her nitric oxide (another hypertension drug) in a few days.

They decided to extubate Maddie off of the ventilator around noon. They were going down to a CPAP, which is a little oxygen mask that fits around her nose. It's designed to give her just enough pressure to prevent her lungs from collapsing when she exhales. After all the activity of the morning, Maddie wasn't in the best shape at that point. She lasted about 2 hours on the CPAP before they put her back on the ventilator. She was oxygenating fine, but wasn't ventilating the CO2 well enough to continue.

It's hard not to see this as a set back, but it just turns out Maddie wasn't ready just yet. We're once again reminded that we're on Maddie's schedule here, and she will let us know when she's ready for the next step. The doctors want to be fairly aggressive at weaning her off the ventilator. The ultimate goal is to teach her to breath on her own, after all. We might try again after the weekend.

Anyways, she is resting now and doing fine. She even has her favorite nurse watching out for her tonight. Speaking of hospital staff, it turns out that all the doctors, fellows, and residents are all changing shifts on Monday. So Maddie will have a bunch of new folks looking after her. The new doctor coming on knows Maddie very very well, so we aren't worried about any discontinuity in her care (this is Luke writing, so I get to use fancy math terms). We are so thankful for all the doctors and how they have taken care of Madelyn over the last month. These folks are incredible people. As if keeping our daughter alive day to day wasn't enough, they've really stretched to make our lives comfortable. One doctor has cried with us on multiple occasions. One shared her museum tickets with our family. One is running a marathon this weekend and raising money for CDH families. Really? Who are these people? God is really using them in a cool way.

Ms. Maddie Pictures

Special mommy and daddy date with Dillan

Picturesfrom Tuesday, July 26th.

Slow going

Question: How is Maddie doing?
Answer: Shes hanging in there, but shes still very sick and has a long way to go.

NOt much change over the last few days.  We are still fighting against the chest fluids (Chylothorax).  We've seen some reduction in output over the last few days but not enough to really move forward.  Once the Chyle dries up and stays gone, the chest tubes will come out followed shortly after by extubation and feedings.  Once Maddie is breathing on her own and able to eat and gain weight, we can start thinking about coming home.  This could be in two weeks or two months - we have no idea what condition her digestive track is in and how she will tolerate real food.

Chylothorax is a complicated condition for a lot of reasons - more then I can get into right now.  But suffice it to say that no one really knows the best way to treat it in infants, all treatments are experimental and there is no such thing as a normal reaction or results to treatment.  The whole team is learning as we go.  At this point, we aren't sure if the reductions are due to the medication (octreotide) or time, but i'm fond of giving God the credit.

Luke and I move into the ROnald McDonald house tomorrow.  We are very excited.  it will be a much better place to have dillan come stay with us plus a huge costs savings.

Please continue to pray.

Sunday Update

Luke here. Madelyn had a great night last night and a good lie-in this morning (according to her British nurse). Her chest tubes are putting out a bit less fluid than before, which is a positive sign. Let's pray that her fluid output continues to dry up! The fluid can put excess pressure on her fragile lungs, which causes her oxygen levels to drop. Also, as long as she is producing so much fluid, she needs to have two painful chest tubes installed.

Prayer Requests and Donations

Maddie has had a great couple of days - which is such a relief for all of us.  Luke and I both spent some time at home this week.  As hard as it is to be far away from Maddie, it is great to spend a few days with Dillan and Dakota and to know that Maddie is having a good day. 

Specific Prayer Requests for this week:

- Reduction in the amount of fluid her chest tubes are putting out.
- Successful weaning on the ventilator - maybe even extubation?
- Making progress toward starting to feed her.  A few milestones left toward this goal.
- No infections!  This is the biggest risk right now.
- Dillan to continue to adjust and adapt - we are asking so much of our little man and he is doing great!
- Housing for us all.  We are still at the hotel and as of July 19th, the UCSF Social Work Program has started to cover our bill (such a blessing).  But we are still hoping to get into the family house and have Dillan spend more time in the city with us.  Our cramped hotel room is just too, well cramped, with Dillan.

For those of you who have asked, our church, Monterey Church has established a benevolence fund for our family.  100% of what is donated will be given to us and is tax deductible for you.  We promise to use all donated funds toward care and bills for Maddie. 

Checks can be made payable to and mailed to:
Monterey Church
417 Alvarado St.
Monterey, CA 93940
(Include "Spence Family" in the memo line)

19 days old!

Maddie is 19 days old today.  Seems like such a blur already. I have completely lost my ability to distinguish between different days of the week and only know what time it is because of who is walking through the bay or because its time to pump (again).

We have so much to be thankful for.

• We didn't know if Maddie would be able to hear or see - the video from the other day shows that she can do both.  
• We didn't know how being intubated would effect her - often CDH kids (or any kid who is intubated for the first weeks of life) have a oral aversion and forget how to suck and swallow.  I'm happy to report that Maddie loves her binky.  But she loves sucking on my pinkie finger even more. 
• When we first got discharged, our average daily cost of living was about $200/day.  Between help from friends, family and the hospital's generosity, we are now managing to live on about $35/day total.  This does not include Maddie's deluxe suite, of course.  We estimate that she is costing between $15K and $20K a day - thank God for good insurance!
• Maddie is making steady upwards progress every day.  She is still dependent on a lot of help to get through the day, but hasn't had emergency life saving intervention in about 5 days.  
• Dillan is such a great kid and has been so amazing through all of this.  So far his spirits are high and he is still a happy well adjusted kid.  I hope we never discover what his breaking point will actually be.
• Friends coming to visit Maddie, taking care of Dakota, playdates with Dillan, calls, texts, emails, presents, gift certificates, donations, giving blood and mostly, prayers.
• Family dropping everything and flying or driving for hours to be here to support us.  Ruth has been living with Dillan for over 3 weeks now and still has energy left over to help clean up my house and yard.  Mom and Dad, Uncle John and Aunt Carol have made multiple trips up to see both kids.  Rusty left his new baby and Therese in Utah (man, I hate Utah) to come see us.  Jamie has dropped everything to be here almost every day.  Plus all of Luke's family that has been able to stop in for an afternoon and spend some time with us.  
• Prepositions - I know its killing some of you that I keep ending sentences with them.  Sorry.  No editing of my blogs allowed for at least another few months.

Love to you all.  I hope to keep reporting happy news.  Please continue to pray for Maddie.  We see Him working and answering prayers every minute of every day.

Running for CDH

Maddie's surgeon, Dr. Doug Miniati + 10 from his team, will be running in the SF marathon on July 31st. His goal is to rise $2,500 - all of which will go directly to helping CDH families. Please consider making a donation in honor of Maddie.


http://www.crowdrise.com/sfmarathondougm

Bigger and stronger every day

Maddie has had several really good days in a row. Seems like every day she is getting the “best gases of her life” which means her little lungs are doing their work exactly like they should. Luke was able to leave on Tuesday and stay at home with Dillan for several nights - they are having so much fun. I plan on going home over the weekend and playing with my lil man non-stop.

They are still weaning Maddie off of the conventional ventilator. She has been on pressure support since Wednesday morning and is doing great. They were able to drop her pressures again last night and she did really well.

She is still draining a ton of fluid from her chest tubes (between 300-400 mL/day) so we started her on a new therapy last night to see if we can get her lymphs to close off. Hoping to see some drop off in fluids over the next couple of days. Once that happens, we can talk about feeding her.

We also gave her another dose of her diuretic yesterday and she has peed out most of the extra water she was retaining in her head, arms and torso. Last night, I could actually feel her skull, not just huge pockets of water.

I gave her a sponge bath last night - her very first officially bath. She did great - threw a fit just like any newborn does during their baths. Afterward, I helped change her linens and flip her over and get her all settled for the night. When i left for bed, she was sound asleep, looked rested and was sucking on her breathing tubes like they are her binky. it was so great to leave for the night and see her being very normal.

She has more awake and alert time each day - we spend a lot of time singing and reading books. She loves to hold my finger while shes awake and starts to cry if i have to pull it away. Her cries are pretty pathetic - because of the breathing tube, she can’t actually produce any sound. So she can throw an amazing fit, but you would never know it if you had your back turned to her. Poor thing. I’m sure she’ll make up for it soon enough.

The plan over the next couple of days is to continue a slow wean from the vent, a slow wean from her morphine and to try to get her chest tubes to dry up. That these are our concerns now is HUGE progress from where we were last Friday.

We have experienced so many answered prayers these last months and thank you so much for loving us all enough to petition God on our behalf, continuing to read and support Maddie and for all of your kind words of support and encouragement. We still have a long road ahead but today is going to be a good day.

Our little thumb sucker

Sound asleep

We are at the point in Maddie's journey where no news is good news and updates may be further apart.  Praise God for stubborn little girls!

Maddie did well over night. They flipped her to her tummy, which she loved! She is back on pressure support. She is breathing on her own with support from the ventilator. This means she's one step closer to saying goodbye to the ventilator. The Spences are also at the top of the list for the family house, and should get word any day that they can move in!

She's Awake!

 

 

Alert, making eye contact and tracking movement!  So perfect

Maddie is having a great day.  Just got her best gases of her life back from the lab.  She's a bit uncomfortable - two chest tubes, trying to get a new IV in today (always a production with her) and starting to wean the morphine. 

We lost our first tube today - no more catheter.  Luke has changed his first diaper (i've changed three!).  technically i got to hold her last - it was only two inches off of her bed so they could change her linen, but i felt the full weight of my little girl for the first time since she was born.  


She is still putting out a lot of fluid through her chest tubes.  Starting a process of elimination to figure out why she is producing so much.  Right now they think it is an response of her immune system putting her lymphoids on overdrive.  I don't really understand it medically yet, but hope they figure it out quickly so we can fix it and get the chest tubes out.  


Hoping to start continuous feeds later this week - we'll likely have to start with a special low-fat formula before breastmilk to help control the fluids and fat secretions.  

You can tell from the pictures that she has quite a bit of swelling (almost half of her total weight right now) but we are hoping that starts to self resolve as well.


We have a turned a corner with this little girl.  Its a small corner - more of a gentle curve in the road then a corner - but its positive progress.  Maddie is still very much in God's hands, but we have a lot to be thankful for and a lot to feel optimistic about.

The most adorable grumpy face ever!

The doctors are planning on reducing Maddie's silo (a medical term for squeezing her guts back into her abdomen), and sowing her up this afternoon. She has had a great day so far, praise God! Once the silo is gone, they have the option of turning her onto her stomach, a position she has LOVED before. They have weened her ventilator settings a bit. She's now on about 40% oxygen. Much better than a few days ago!

We are so thankful for the restful day.

Sunday morning update

quiet night for maddie.  She had a blood transfusion and a FFP (fresh frozen plasma) infusion to help replace some of the fluids she is losing from her chest tube.  Shes been incredibly stable and comfortable since the second chest tube was placed yesterday afternoon.

Our hearts and prayers go out to the Ryan family this morning.  They have been our NICU friends these last couple of weeks and said goodbye to their little girl last night. 

Ebbs and Flows

Its been a really rough 24 hours but we are looking good right now. Maddie’s numbers have been holding steady for about 4 or 5 hours. No one has been poking her or prodding her and the doctors only give her a glance every so often to make sure things are ok.

I’m going to write the rest of this blog for two audiences – people who care about all of the medical details and people who don’t.

Mommy update
One of the other CDH moms expressed on her blog that the fear you live with when you are in the NICU is a primal fear that lives in your soul. Never knowing what and when and if something is going to set your child off. Learning to ignore nurses and doctors when they tell you AGAIN to prepare yourself for the worst and that your child is very fragile or tenuous or precarious and pray for a miracle.

Then the exhaustion once its over and shes stable again. Like you could sleep for a year if you could stand to be away from her beside for that long and didn’t have to pump every 4 hours. It’s a state of being that I hope I never experience again. The highs are so high and the lows are so low and training yourself to “keep to the middle ground”, or “take the long view” or “think of everything you have to be thankful for” all feel impossible. And we are only 12 days into a life of living with CDH.

Let me share some of the highs:
- Maddie is off of the paralytic. She is moving toes and fingers and has opened her eyes a few times. Sometimes she squeezes our fingers. Often she lets us know how much she hates being ventilated.
- I got to help change my first diaper today. Never have I been so happy to wipe a dirty little butt!
- I get to put lotion on her lips every few hours. She usually pokes the worlds most perfect little tongue out at me while I do it.


Medical update
Post op maddie looked really good for about 18 hours or so. Stable stats – her CO2 was a little high but nothing too concerning. She got a new roommate who needed to be put on ECMO. While the surgery team was in the bay working on Baby B, Maddie got agitated with all of the noise. They gave her some Versed, hoping to calm her down. Instead, her blood pressure completely dropped out. This started an 8 hour cycle of hand venting, adjusting meds and moving back to the oscillating vent.

Around 10 PM, Dr. Keller (a CDH genius and amazing woman – I’ll probably dedicated a whole blog to her one day) was consulted and recommended putting Maddie back on the conventional vent and letting her show us what settings she liked. That stabilized her until about 1 AM. They did an x-ray and saw that fluid was collecting around the right lung, putting so much pressure on it that it could neither oxygenate nor ventilate. They drained her chest cavity (remember her chest tube is designed to do this but is on the left side of her body) and immediately her stats went to normal. A few hours later she spiraled out of control again, did another drain and bam, back to normal. The decision was made to insert another chest tube, this time on the right side. So far we have collected about 60 cc of fluid on the left and well over 100 ccs of fluid on the right. To put this into context, Maddie’s lung volume is only about 10 ccs in her good lung so the pressure this fluid was causing is substantial.

Maddie also has an elevated white blood cell count, indicating some kind of infection. Nothing is growing in the cultures yet, but she is on 3 types of antibiotics for the next week or so and we’ll wait for the labs to come back and tell us more.

Slight reduction of the silo today. Hoping for a bit more over the coming days and closure by Tues or Weds. New artery line and new IVs today as well.

Maddie's chest tube is in and she is totally stable!

Not a good day for Maddie. There is evidence of infection, fluid build up in her lungs, and her blood gases are down. She's very fragile. It is delaying the silo reduction (putting her intestines back where they belong) and putting in the second chest tube on the right. The doctor says she is sicker than normal post op. Please pray.

PRAYER REQUEST:

Madelyn has had a really rough day. She is back on the oscillating ventilator and has not yet stablized. Please pray that she stablizes and that these are just post op bumps.

Pictures from eariler this week

 

Dillan playing in the Child Life Services Room

They changed Maddie's tape and tubing on Wednesday.  Our first peek at her sweet little lips and cheeks.

 

Luke here with a Surgery Update!

So Maddie's surgery went very well. The doctor was smiling and patting Luke on the back as he walked out. They only had to turn her oxygen up a little bit during the surgery. Other than that, she was nice and calm.

They found a pretty large defect. Maddie was missing about 40% of her diaphragm, all of it on the left side. Her intestines, stomach, and spleen were all in her chest cavity at the time of surgery. They were able to fix the hole with a combination of a muscle flap and gortex patch. They detached some of her oblique muscles and used that to close the diaphragm. The muscle was a little thin in one place, so they also put in a small gortex patch to reinforce that weak spot. The doctor hopes that the muscle flap will grow with Maddie and carry a smaller risk of retearing.

Maddie's abdomen was too small to contain all the new organs that have to fit there, so she currently has a silo. That is basically a plastic tube that is holding her intestines outside her body. As her abdomen is stimulated to grow, they will be able to push more of those intestines into her abdomen and finally stitch up her incision. They hope to do that over the weekend. She also has a chest tube to drain out some of the excess fluid that will fill her chest. It is quite a site to see.

All in all, this was more than we were hoping for, but we are so proud of our little girl! We spent time with her late last night, and again about 4 am. She is off of the paralytic medication and is starting to move around a bit. She was squeezing our fingers and opening her eyes just a little bit last night. Now she can start the road to recovery! We were able to see some pre and post operation x-rays. It is obvious that her left lung has expanded quite a bit and has much more room to grow. Hopefully, that means better lung function in the long term.

Thank you all for your prayers yesterday.

Isaiah 41:10
So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

Maddie is doing great!! She's totally stable!!

Quick Update:
The surgery is going well so far. She is missing about 40% of her diaphragm. They are attempting to use a muscle flap before using a patch (which would have more complications later in life such as reherniation or scholiosis) There is no estimated finish time yet.

Maddie is being prepped for surgery right now. Please pray a lot!

Maddie's Surgery is scheduled for tomorrow afternoon with a backup slot on Saturday just in case.

1 week old pictures

so far a nice quiet day today.  no more word on surgery tomorrow.  Luke and I checked into a new hotel and will be there until Sunday (maybe longer if they have a cancellation).  Its a relief to know we have 4 nights in one place!

Here are the pictures I promised last night.  They are not in order but I don't really want to spend more time away from here to fix it.

Sweet perfect tube free little hand

Maddie and her Godmother - Aunt Jamie



 

She loves laying in the prone position. 

Cutest baby butt ever!

Sunbathing

Grandma and Maddie

Family photo

Cutest Baby Butt EVER!

Luke and I had a great day hanging out with Dillan and are looking forward to cuddling with him in a very small bed tonight.  We are staying in a boarding house within walking distance of the hospital for hte night.   Stan and Ruth are staying with us.

Maddie had a stable day.  She gots some meds switched around and some new IVs, all of which moved her numbers all around for the day, but shes trending positive and resting great.

She is on the surgery schedule (not an add-on) for Thursday.  No promises but we are happy they are confident enough to place her on the schedule. 

Trying to upload some pictures (including pictures of Maddie's cute little tush) but our Wi-Fi connection doesn't think that's such a great idea.  Pictures tomorrow if the stars align.

Surgery postponed indefinitely

To call today frustrating and emotional is a huge understatement. Last week, we met with one pediatric surgeon who wanted Maddie to be at her best before surgery. So the NICU team started to work hard to wean down her vent settings which sent her into a tail spin more then once. We finally found a place where Maddie was more or less stable and kinda kept her there. Every so often we would try to wean, but then return back to these baseline settings before she could get unstable. We assumed these base settings were her best and expected to get the green light for surgery on Friday.

Then the weekend came and the surgeon on duty over the weekend stated she didn’t want to operate on Maddie if she was at her worst. So we worked really hard all weekend to keep her stabilized and show that she can maintain constant stats. We assumed that some consistency in her stats and settings would show she was not at her worst and expected to get the green light for surgery today.

Then today, new surgeon came on. All day we were told to expect surgery after 4:30PM today and the whole team worked together to prep her (and us) for surgery and keep her stats and settings constant. We had some hiccups throughout the day, especially when 2 babies in her bay started to throw fits and it got really loud. About 3 PM, today’s surgeon came by and said that she doesnt like where the vent settings and NO are at all and that she wants to see her weaned down to a regular ventilator (remember right now Maddie is on a oscillating vent) before she’ll operate - even if that takes a week or more.

We had some emotions to deal with after this conversation. We have requested a family meeting with members from both teams so that we can all get on the same page and start working toward a shared goal. That should take place sometime tomorrow.

Our attending tonight was surprised that Maddie’s surgery was postponed and is working pretty aggressively to make the regular vent work. She’s sitting by Maddie’s bedside (along with the nurse and respiratory therapist), almost constantly adjusting settings to see if we can get Maddie to a nice stable place on the regular vent. I’m pretty in love with this woman right now and her determination to get my baby girl better.

We are frustrated. A lot of what is happening right now is because Maddie’s pre-birth ultrasounds showed such a positive prognosis (remember the 95% survivability we were given?) but she is presenting much worse and much sicker then anyone expected. Much more like a baby with a large hole in their diaphragm and with their liver up. So our whole team is having to switch gears and development a new course of treatment for her. There is speculation that her liver may actually be up and that she will likely need a patch and a chest tube - things we weren’t prepared for.

So I’ve been using this word “stable” quite a bit the last few days. In CDH land, the world we now live in, stable means not in immediate mortal danger. Maddie is in a medically induced coma and is only breathing thanks to the machines and medical professionals who surround her. But each procedure, each time they reposition her tiny body , even her first poop tonight, starts a spiral that would led to her body shutting down if not for immediate intervention. Its scary and overwhelming and heartbreaking. But its our world for right now. I mention this so that you understand that even on good days, even on great days, there are no sighs of relief for us - at least not yet.

I mentioned the other day that we started Maddie on a diuretic to start drawing out some of the fluid she is retaining. This is working great and has really helped bring Maddie’s stats back down to a manageable level. As you can see from the pictures below, the swelling in her face and especially her eyes, went down significantly today. Shes beautiful and so sweet to spend time with and so soft to touch.

Tomorrow Luke and I will take a bit of a break from Maddie’s bedside (don’t worry - her grandparents will be there for us) and spend the day playing with Dillan. There is even the possibility of him spending the night with us in a hotel if it looks like Maddie is going to have a quiet night. I’m so very excited to see him - i may jump out of my skin.

Our prayer requests tonight are numerous and a lot of them are very unspecific. But here are two among the rest

Maddie adjust quickly and safely to the new ventilator so we can move ahead with her treatment plan.
Housing for Luke and I. We lose our boarding room in the hospital tomorrow at noon and dont yet know what the plan will be after that. Likely we will stay in a hotel for up to a week while we wait for room at the family house.

This is a long blog. thank you for loving us enough to read all of it.

This evening - No more swelling

early in the morning - very swollen

Surgery Postponed

Maddie plummeted this morning, and when brought back to stable condition her numbers were not as good. They were not able to start an artery line. Her surgery has been postponed indefinitely and the doctors will reassess her on Wednesday.

Surgery today?

highly likely Maddie will have her surgery late this afternoon. Please spend the day praying for her. The doctors have been preparing us for a much tougher surgery then originally expected.

Pictures Day 4 and 5

Day 4- Hanging out with Grandpa

Day 5 - Kisses from Grandma

Hanging out with Grandma

Too cool for school

Cuddling with mommy

Finding the moving average

We are training ourselves (and hopefully all of you) to not focus on Maddie's progress in terms of hours or even a day.  We have learned that in order to ride this roller coaster, we need to look at a block of days together and determine if we are trending positive or negative.  With that in mind, we are definitely trending positive but Maddie had a really rough day yesterday.  She needed a blood transfusion to help stabilize.  We also started her on a diuretic to start helping pull away some of the fluid shes retaining.  Both of these helped immensely and she had a very quiet night.  We were able to bring down the pressure, amps and oxygens levels, all of which she tolerated great for the first time.

Shes a fighter.  As soon as she starts approaching the 2 hour mark between administration of her paralytic, she starts fighting the ventilator and trying to breath as much as she can.   Its always nice to see her spirit start to come through but a relief to see her calm back down and let the machine do the hard work for her.

So far, Rusty, Dad and Luke have all been able to donate blood directly for Maddie.  Once it is screened and matched, their blood will be used first when she needs a transfusion.  Mom donated too but is not a match.  If you come and visit and have A+, A- or O- blood type, please consider donating too.

Today we are hoping she stays nice and quiet.  Maybe lets us wean her down some more.  Repair surgery still looks like for tomorrow afternoon sometime - but again, we'll believe it when it actually happens.  These kinds of things have a way of getting moved around a lot.

Luke and I are really starting to get exhausted.  We both slept like champs last night.  Really missing Dillan - it was heartbreaking to call and say goodnight.  I have two beautiful babies and didn't get to hold either one of them yesterday - not something I ever want to experience again once we bring Maddie home.  Dillan is having a great time with Stan and Ruth and his doggy back at home.  Ruth says he misses us, but I think shes just trying to make me feel better.  He is so in love with his grandma I don't believe he is missing much of anything. 

We have a bed in the NICU for Luke and I again tonight.  Tomorrow we are hoping to get word on something more permanent.

Please continue to pray.  We love all of the emails and texts and calls of encouragement. We super love the gift cards we've received! 

Day 3 and 4 pictures

Her inner ear is heart shaped - both ears.  so cute and amazing to see in person

Daddy and Big Bro Dillan checking in on Baby Maddie

All dressed up for Uncle Rusty



Daddy loving on some baby toes

Maddie and momma

Maddie and Uncle Rusty



Just a reminder - please don't mail things to UCSF. if you'd like to mail Maddie a present, message me and i'll send you our address.

Surgery is postponed until Monday.  Maddie is stable but the surgery team was overbooked for today and bumped her off the schedule.

Luke and I have are boarding here in the hospital tomorrow and Sunday night.

Prayers are being answered.  Please continue to shower us in them.

3 days old!

Maddie will be 3 days old at 3:16PM today.  Really carzy for us - we feel like we've already been here weeks.

Just a quick update - she had a stable night and they were able to move the vent from her left side to her right side.  We will get to see the left side of her face today but more importantly, the doctors now have access to her left side to perform the surgery.

Still looking like the surgery may happen this afternoon although that can change at any second.  They will perform the surgery right in the NICU bay (which is pretty amazing).  This is great because now we dont have to worry about transporting her to/from the OR which can be dangerous.  The draw back is she is no longer a candidate for a scope surgery.  She will get a 4-6 inch incision and a really cool scar to go with it.  We will find out more specifics of hte surgery later today when teh surgeons come by to talk to us.  luke is taking very detailed notes which i hope to post at a later date for other expectant CDH families (side note - if you are an expectatant CDH family following this blog, let me know if you have questions.  I'm so glad i did the research I did before we got here.  Between the vicadin, sleep depreviation and all of the new things we are learning, my memory is almost zero).

Prayers:
- God's hand to led us into surgery at exactly the right moment for Maddie.  This means her health and strength but also the team taking care of her.
- An easy surgery and no repair patch necessary.  No further complications or defects present to find during the surgery (we really want confirmation that she is isolated CDH).
- Quick healing, following by huge gains in her body's ability to govern itself. 
- Housing for Luke and me.  Right now we have no idea where we are sleeping after we are discharged tomorrow. The social workers are figuring this out right now but there is no plan as of yet.

They keep reminding us that although she is stable, she is a very sick little girl - much sicker then they expected her to be based on her pre-birth prognosis.  I"m anxious about the surgery - its our first major milestone toward bringing her home - but it comes with a lot of unknowns and risks.

Pslams 18:6 In my distress I called to the Lord; I cried to my God for help; From his temple he heard my voice; my cry came before him, into his ears.

He hears us when we call out to him.  Please call out to Him on behalf of Maddie urgently today and as she recovers from surgery.  I'll update again when i can but still having a hard time getting constant Wi-Fi.

Prayer Request: Maddie has not had any changes. Because of this, the doctors might operate tomorrow afternoon to avoid waiting too long and seeing a decline. Please pray that the doctors are able to find just the right window for her surgery, neither waiting so long that she declines or rushing in so early that she doesn't have a chance to improve.

The Most Beautiful Baby in the NICU

I had the blessing of visiting the Spences today. It really was a blessing. It was as always, wonderful spending time with Luke and Lisa. I got to go for a walk with Dillan and read him books in the gift shop. And seeing Maddie for the first time was so many things. It was wonderful and scary and my heart swelled with love and the same time it broke for what she was going through.

Maddie is so beautiful! She looks just like Lisa with a touch of Dillan. Her bottom lip is full and looks pouty already (her top lip is covered by tubes right now) She has long slender fingers and huge adorable feet!

Dillan got to meet Maddie today. He brought her a Paddington bear and a special hat that Grandma Lorraine got for her. Luke said he did amazing and was very well behaved. (Hopefully Lisa will post thier first family picture soon!) Dillan also did really well in Lisa's room. He likes playing hide and seek by wrapping himself up in the privacy curtain. He was also really cute playing with his grandpa's iphone.

Lisa is healing up pretty well. She'll stay a patient at the hospital until Saturday. She was able to get up and visit Maddie. Only nurses get to touch Maddie during the day, but she and Luke are looking forward to touching her tonight when she wont need as many tests or as they say, as much tweaking.

The Spence Family is, even in the hospital, amazing. Whether in Lisa's room or in Maddie's NICU area, their abundant love is apparent.

-Brena. (A friend.)

An update for Wednesday morning.  Maddie got switched to an oscillating ventilator last night to try and raise her oxygenation and lower her blood CO2 levels.  She had a good restful night, and the doctors say she is responding well to the new ventilator.  They are continuing to monitor her blood gases, and are giving her fluids and medication to lower the blood pressure in her lungs.  They were able to lower the oxygen concentrations of her breathing gases.  It was at 100% oxygen late last night, and now it is down to 60% (you and I breath about 23% oxygen).  So that is a good sign, showing that she is stabilizing.  It also gives us some room to adjust if she starts showing signs of stress.

She looks so sweet, but is very sensitive to touch and sound.  We haven't been able to really touch her more than a little squeeze on the hand or foot.

Lisa is doing GREAT.  She's already been into a wheelchair twice has got to spend a few hours at Maddie's side.  We love you all, please keep praying for Madelyn!

Happy Birthday Madelyn Erin Spence

Madelyn Erin Spence was born today at 3:16PM.   She weighs approx. 7 lbs and 6 oz.  Totally normal c-section and i'm recovering fine - although not quite as quickly as I'd like. We were surrounded today by amazing family who saw to our every need and took amazing care of Luke, Dillan and me.  Everyone got to see Maddie for about 10-20 minutes before heading home.  Dillan will meet his sister tomorrow morning.

I'm hoping to get into a wheel chair and spend some time with her in the next 30 minutes or so.

Once delivered, Maddie let out 4 little cries before being passed to the set-up room. In the set-up room a team from Peds and Neonatalogy intubated her, started an IV and a catheter.   They worked really hard to stabilize her oxygen levels - had to resuscitate her twice.  She was moved to  the NICU where they did an Electrocardiogram (heart sonogram).  We'll get the results of that tomorrow.  She does not like to be moved or touched (her oxygen levels drop which is called destating).  You can see in the pictures that she is still covered in vernix.  She will not get her first bath until she tolerates touch better.

She is on a sedative (stops her from pulling out tubes), a paralytic (stops her from swallowing in air that may get trapped in her bowel) and Nitric Oxide (helps draw out the excess CO2 in her lungs).

Luke and I got to finally spend some time with her at about 6:30PM for just about 20 minutes.  She is so sweet and precious.

She has continued to have a hard time stabilizing, so they put her on a oscillating ventilator at about 9 PM tonight.  If she doesn't stabilize soon, she will be put on ECMO (baby life support). Timing of the repair surgery is completely dependent on her stabilizing.

Our prayer is that she stabilize.  ECMO is big and scary and something we've prayed all along to avoid.  Please pray like crazy for this.  Although a lot of babies do great after having been on ECMO, it would be a last resort to save Maddie's life - a position we obviously do not want to be in.

Click here to view these pictures larger

Off to UCSF

Off to UCSF tomorrow morning. Friends and family will be updating Maddie's facebook page and our blog until I'm up to it again. Thank you for all of your support and continued prayers. 

 Our c-section is scheduled for 10 AM PST Tuesday morning.  

Final Belly Shot

Thirty-three

Written by a Mom who recently lost her daughter to CDH. Its a long read, followed by a good cry. But I ask you to take the time and tears to read the whole thing. My daughter will be born with CDH in just over 65 hours.

Most of you know I'm an English teacher. Like so many of my other teacher friends, I sometimes struggle to get my message across to my students. People just don't want to learn anymore or they couldn't care less about improving their lives. We only had Penelope for thirty-three days, but in her brief time on Earth she taught us so many things. She didn't have to lecture. She didn't have to make a PowerPoint. She didn't even have to speak, but she still managed to touch so many lives through her very existence. Here are thirty-three things she taught me in thirty-three days:

1. She taught me to write again. I studied English literature for six years in college and I used to love to write. I had professors politely tell me that I was horrible at writing fiction and poetry, but I could write non-fiction like nobody's business. Then I gave it up. I just never took the time. Yet when I started writing the notes while she was in the hospital (for no one's benefit but my own, to vent to some imaginary, faceless person), people were moved. Don't get me wrong -- I'm no writing prodigy. But she taught me to love it again.
2. She taught me what love means. The love between a parent and child is like no other bond on Earth. It is all-encompassing. It cannot be broken. It cannot fade. It is a physical love as much as emotional. It made me physically ill any time I had to be away from her. Words cannot describe the feeling properly, but it was like I had sliced myself in half and there was a magnet trying to reunite the two pieces.
3. She taught me the meaning of "perfection." I watched my newborn child swell to probably thirty pounds or more on ECMO, but she was still the most perfect thing I have ever seen in my life. Tubes, monitors, IVs, and tape could not hide that.
4. She taught me never to say "ow" again when I stub my toe. Natural birth. No epidural. No pain medicine. Enough said.
5. She taught me that I don't need television. I went 33 days without cutting on a single television screen and, honestly, never thought about it once. There was some cheating, however, in that I rented a movie from Redbox one night and watched it. But that's not tv, so I guess it's ok ;)
6. She taught me that sometimes it's ok to be girly. Many of you know I am anti-all things girly. I hate pink. I hate high heels. I hate fashion in general. But when Penelope could not wear clothes, I wanted nothing more than to put little frilly bows in her hair every day. She had a different bow for every day. Some of them were even pink.
7. She taught me to be patient. I always said I wanted a May baby and knew it would be pushing it even though they tried to tell me I wasn't due until the middle of May. Come labor on April 30, she took her sweet time to make it an hour and twelve minutes into May.
8. She taught me the meaning of fear. From the first moments of life when I waited to hear a cry until the last cap-off attempt that failed so horribly, I feared for the life of my child. I never wanted to leave her side because I always feared she would die while I was gone. This is not the same fear I have of, say, clowns. Clowns give me the creeps and I don't like to look at them. The fear I felt with Penelope was a deep, primal fear. It lives in your soul.
9. She taught me the insignificance of time. The only way I knew it was day or night was by who was in the room -- day or night shift. All I knew was that my baby was alive for another minute and it did not matter when that minute was.
10. She taught me to love my parents more. For those who don't know, I'm a bit accident-prone. I have been in the hospital countless times for countless injuries, and I always took it for granted that they would take care of me. Not only that, but I put my parents through hell as a teenager and young adult. You name it, I did it. Again, I always took it for granted that they would love me no matter what. I never understood how that was possible until it was my child. My hell. I love you mom and dad.
11. She taught me to love my sister. Ashley and I are polar opposites. Always have been. Yet we found something we have in common when Penelope was alive. We are both strong. We can both dry our tears and fight. We can just be in the same room together and give each other strength. I love you big sister. Thank you.
12. She taught me to love my husband even more. Of course I love DJ -- I married him! But when you take those wedding vows and say "for better or worse," you assume "worse" covers something like money problems or infidelity. No one goes into it thinking "the death of a child." I have never loved my husband as much as I have loved him since May 1. He had to be so strong for us and go back to work so we could pay bills. I still don't know how he does it. I don't want to leave the house now. But I can tell you this: I didn't want anyone else by my side as much as I wanted DJ. I love you babe.
13. She taught me medicine! I think I can be a doctor now. By the end, I could give reports at shift change as well as anyone!
14. She taught me that "House" is not accurate. The episode with the baby on ECMO was on the other day. Stupid "House." That's not what ECMO babies look like. I wish that's what ECMO babies looked like.
15. She taught me that a baby that has been lying in a bed for 33 days smells exactly like a limb that has been in a cast. When I got to hold my baby, she didn't smell like baby powder. She didn't smell like Johnson's baby wash. She smelled like my arm when they finally took off the cast.
16. She taught me that being a nurse is the hardest job in the world. Now don't start hating. I know teachers have it rough. I know anyone who works with the public has it rough. But these nurses, especially those that work in any kind of ICU, have to deal with death almost every day. I don't know how they do it. They work long shifts, they get covered in all kinds of bodily fluids, and sometimes they still lose. And speaking as someone who feels like I basically lived in the hospital for a month, it is the nurses to whom the families turn for support. Some of those women will always be very dear to me because they cared for her. Not in the sense of "caring for a patient," but in the sense of LOVE. They loved that baby and I know it broke their hearts, too, that she didn't make it.
17. She taught me what a respiratory technician is! I honestly never knew there were people whose whole job was dedicated to ventilators and, in Penelope's case, ECMO machines. And let me tell you, I am not a "hugger" but one of the best moments of Penelope's last day was when one of the technicians, Lisa, practically came running into the room because she had just come in for night shift and thought she had missed saying goodbye to Penelope. She is such a good, Christian woman and she just cried with us and told us how sorry she was and how much she loved Penelope. That meant so much to me and it still does. I will never forget.
18. She taught me the power of prayer. I had always heard of people saying they were "filled with the spirit," but I will be honest and say I didn't really know what that meant. Sure, I had been moved to tears before during church, but nothing as powerful as what I felt the days Penelope was alive. Everyone kept wondering how I was so strong. How I managed to BREATHE much less stay rational enough to watch over Penelope. It's because I could feel it. I could feel people praying for her every moment of every day. I knew so many people, many who had never met her or even ME, were praying for her at that moment. Any given moment.
19. She taught me the meaning of "rage." One day a nurse came to do a "skin check" on her to make sure she wasn't getting bedsores. This involved picking her up and tipping her over. This made the cannula site (where the ECMO tubes were inserted) start to bleed and I went white hot. I had no control. I wanted to kick that nurse's teeth in "American History X" style. Instead, I just cried. I cried because I was helpless.
20. She taught me trust in people. Anyone can tell you I did not leave her side for the first several days except to eat, pump, and use the restroom. Everyone kept telling me it was ok to leave, but I always thought someone would screw up while I was gone and I would lose her. Sorry Brenner friends -- nothing personal. But after a while, I saw how amazing nurses and therapists can be. Don't get me wrong, doctors are great too, but we all know it is the nurses and, in Penelope's case, respiratory therapists who do all the work. Each and every one of them is an angel on Earth. They took such good care of her that I was eventually able to go get real sleep on a bed instead of a plastic couch.
21. She taught me trust in God. As I have told some of you, I knew from the day they diagnosed Penelope with CDH that she wasn't going to make it. I fought that and I fought it hard, but deep inside of me I KNEW. Of course they found the hernia early enough that abortion was still a legal option and I'm not going to lie -- I battled that. Not for me, but for her. I made the mistake of googling CDH and found all these horrible stories about how disabled many of the children who survive (if they're lucky) can be. Of course I have since come to discover that this is not always the case, but I briefly wondered if I should save her the misery. Briefly. Then everything in my body and mind told me that was not the path to take. I knew she wasn't going to make it, but neither will you or I. Eventually, none of us "make it." But if God took that path and said "what's the use? They are all going to suffer" then neither of us would be here now. So not only did I know she deserved to fulfill whatever purpose her life would serve, but I decided to put it all in God's hands. The OB always offered to schedule a c-section or induce on a certain day. I'm NOT one of those women who is going to preach to you that epidurals are wrong, hospitals are wrong, induction is wrong, etc. To each her own. I'll tell you right now that had Penelope been healthy I would have been asking for the drugs when I signed the registration papers at the hospital. But I knew that WHEN she would have to leave us, I would be filled with "what if"s. At least I was able to knock off the "what if I hadn't had an epidural?" question. She was in God's hands the whole time and there was nothing I could do to change it.
22. She taught me the meaning of friendship. We all have "friends" on facebook to whom we were never really close or maybe never even met. But when Penelope was born, I like to say "all heaven broke loose." The messages came pouring in from across the GLOBE. People who I thought hated me still loved Penelope. She even reunited me with an old friend from whom I had grown apart since high school (I'm looking at you, Kerry!). She is a labor and delivery nurse so she was able to help me with medical issues, but she was so much more than that. She and I have always been very similar in the ways we think and she, too, knew that Penelope was not going to make it. She was one of the few people who, instead of trying to pound it in my head that everything was going to be fine, simply replied "I'm scared, too, friend." That one text meant so much to me. And of course there is Brittany who, heaven help her, stood by me through the whole pregnancy and even helped Penelope come into the world. For those wondering how I managed to make it through with no pain meds, look to Brittany. Like Kerry, she wasn't sugarcoating anything with me from the start. She told me to suck it up and reminded me of my plan. Once Penelope was out, her whole focus was on me. As I lied there bleeding uncontrollably (thinking, of course, that everyone did that), she held my hand and kept me strong. She has kept me strong in so many ways. And Renee, my counselor since childhood who now gets paid to do it! She was the first to tell me when I expressed my fears about Penelope's quality of life while pregnant that each of us has a purpose in life and Penelope must be given the chance to fulfill hers, even if it will be hard. I know it broke her heart to do so, but she was also the one who kept most of you updated during the last days of Penelope's life. She lives halfway across the country, but it was like she was there being the person in the waiting room who has to give all the bad news. I could feel her strength even when she couldn't be there. To all three of you -- thank you. Thank you is not enough. I love you so much.
23. She taught me the inadequacy of "thank you" to express your love for people. There are no words. I'm an English teacher, but there are no words. To all the people, each and every one of you, who have done everything from think about us to hand us the death certificate, we love you.
24. She taught me to let go of pride. First, there was the loss of caring what I looked like. If you know my mother, you know I was raised that you don't go to the MAILBOX unless you have on your best clothes and full makeup. Yeah, that went immediately. Then there was my constant struggle of not crying in front of anyone. If you know my dad, you know where that came from! We're not big emotion-showers us Diaz girls. I think some of the doctors and nurses thought I was a bit strange because I didn't sit there and sob the whole time, but boy when I did... and now that she's gone, I have had to learn to let go of the biggest source of my pride -- the fact that I hate to ask for help. I think (and have always thought) that asking for help was a sign of weakness. Well, when it comes to mounting debt from medical bills on top of all the other bills since I can't teach summer school now (and NO I don't get paid like k-12 teachers do in the summer), I had to ask. Actually no. I take that back. I have never had to ask. People have just given. Family. Friends. Strangers. People have done fundraisers, love offerings, you name it. Every bone in my body wants to say "Thanks, but we don't need it!" but that would be a total lie. Lest you think I'm asking for donations now, though, rest assured that people are taking care of us. Once we reach the medical bills and regular bills, we are donating every single leftover penny to CHERUBS.
25. She taught me not to sweat the little things. When I say little things, I mean feet. Towards the end, as many of you can see from the pictures, Penelope's body started to form clots (an unfortunate side effect of ECMO). It's complicated and they never had enough time to figure out exactly what was going on, but basically her body sent the clots to her feet because they were "expendable." It started with her toes. In the last week or so, her toes started to turn black. Eventually they were declared goners. They would eventually fall off. Then it spread. It took several days to consume all her toes but less than twenty-four hours to take both her feet. That's why they're black in the pictures. Even if she had lived, chances are both her feet would have had to be amputated above the ankle. But you know what? I was fine with that. So be it. If she lived, we'd deal. Not sure I feel the same way about it now, but in fight mode I just brushed it aside as if it was nothing. What does that say for Penelope's situation that I didn't care if her FEET WERE CUT OFF as long as I kept my baby. On the last day it had moved to two fingers, too ...
26. She taught me the importance of laughter. I cannot tell you how much I love Tina Fey for writing Bossypants. I really must have looked like a mental patient laughing out loud in the same room as an ECMO baby, but I couldn't help it. That was about a week in and it felt soooo good to laugh. For one moment, just one at a time, to feel good again.
27. She taught me how great poop can be. Yes, poop. That was about the only milestone we ever got to see with her -- her first poop. I took a picture and I will cherish it for the rest of my life. Precious poop.
28. She taught me dedication. I had to be dedicated to so many things. Of course I had to stay by her side as much as possible. After a while I felt comfortable enough to go to the Ronald McDonald House for a few hours to sleep and shower, but other than that I never hesitated to stand up for her, ask questions, and ask MORE questions until someone could finally explain to me in lay terms what was going on. She also inspired my grandmother in Mexico to travel to a convent and lock herself away in prayer -- fasting and praying about nothing but Penelope for 24 hours. That's dedication. Not only to Penelope, but to our Heavenly Father.
29. She taught me that not all doctors have a "god complex." First, there was a night when Penelope was throwing one of her tantrums, refusing to be put down by the meds (even the paralytic), wiggling her head, and dropping her sats. Dr. Roberts, the ECMO fellow, was finally called in in the middle of the night and within moments had her calmed and back to normal. I was so relieved that I jokingly said "You're my hero, Dr. Roberts!" She didn't hesitate; she simply pointed up and said "HE is my hero, so thank him." Wow. Then, on the day we let Penelope go, Dr. Petty came in to talk to us about how there was nothing else they could do. Instead, he told us that Penelope would go to heaven now and there would be no more pain. And I'm going outside the 33 days by 2 now, but on the day of her funeral we also got a card from him. He wrote that we should turn to God with our worries because He knew our pain, having watched HIS only child die on the cross. Wow again. What great people there were taking care of our baby. I thank God EVERY day that they will go on to help other families.
30. She taught me what it means to be a woman. Being a woman is not starting your period. Being a woman is not growing boobs, wearing makeup, or smelling sweet. Being a woman is pain. Back in my tattoo-getting days, I saw several LARGE men break down while getting inked, but women could always take it like a champ. The same thing goes for emotion, too. Being a woman is a heavy burden. When you have to watch your child be in excruciating pain in the times that her tolerance demanded higher doses of morphine, that is pain. When you have to plot for several minutes to find a square inch of your child that you can touch that isn't covered in tubes, tape, or wires, that is pain. When you have to say the words "We are ready to let her go," THAT IS PAIN. But being a woman is what you do with that pain. You accept it. You don't fight it. You pull it inside you. You crush it into a ball, a burning ball of fire in your heart and you fight. You shake off the tears and you fight. Even in giving her to God, I fought back every tear and told her and myself that there was nothing to be sad about. She is with God now and that is nothing to be sad about.
31. She taught me the meaning behind "Why have you forsaken me?" I don't know where or when I heard it, but someone preached or I saw it in a movie or something about how when Jesus was asking that question on the cross, you need to imagine that God had to turn around because He couldn't watch. Those words never had so much meaning to me than when I wanted more than anything to be the one holding my child to my breast as she died. I didn't care that I was topless in a hospital. I didn't care that I was being covered in my daughter's blood. There was nowhere else I wanted to be more than anything in the world -- but I couldn't watch. I couldn't see. I could NOT look at her body as, for the first time, her face sat snuggling into my neck. Oh to feel her skin against mine was the most beautiful moment of my life. Knowing that the last sensation on her skin was that of my own, but I couldn't look. When she had finally passed, I had to close my eyes as the nurses took her body away to be cleaned. I couldn't look. I get it now, God. I get it.
32. She taught me that there is, beyond ANY shadow of a doubt, a heaven waiting for us. In the last few days, I reverted to being angry with God -- not because He was going to take her, but because He wouldn't hurry up and do it already. Watching her feet die was torture. I knew it must hurt SOOO badly and I couldn't do anything about it. I thought it was cruel of God to make her keep suffering, but I also could not bring myself to tell the doctors to cease treatment. So I did the only thing I could do -- I prayed. Only I no longer prayed for healing. I accepted that God was going to take her. I only asked that He would let us know when it was time to let her go. When the doctors pronounced that there was nothing else to do, I still fought. I told them they needed to max out all her pulmonary hypertension meds, lung steroids, EVERYTHING and let her try again. It didn't work. Not only did it not work, but she did much worse than she had ever done on an attempt to cap off. Then we knew it was the day. So we finally told them we were going to cease treatment, but we wanted to hold her finally, for the first time, before they stopped. DJ held her first for what seemed like five minutes but was really over an hour. Then they gave her to me. I finally got to hold my baby after 33 days. After what was probably 30 minutes or so, one of the ECMO technicians came in and said that if we were still sure we were going to cease treatment, there was no reason for them to leave her on the ventilator. The ECMO machine was oxygenating her blood, so she didn't need to breathe. They had already taken out her feeding tube at this point, but once they took out the ventilator tube, her face was finally tube-free for the first time since the first 10 seconds of her life. She was so beautiful. She was swollen, purple, and could barely open one eye, but she was more beautiful than she had ever been because I could see her mouth and she was in my arms. But to get to the point, about 40 minutes after that, I told DJ to start packing up the stuff from the room and moving it to the grieving room because I didn't want to stay in the room and see her as soon as she had passed (see above). So he packed everything up and hauled it off. While he was gone it was just she and I in the room. I prayed out loud, "God PLEASE. PLEASE tell me when it's time because I don't want to let her go." And she smiled. At first I thought "Oh, she must be pooping." But the smile got bigger. So big that I didn't know a 6 week old's mouth could move like that. Muscles she had never moved in her life. And she wouldn't stop. She simply closed her eyes and smiled so big. DJ came back about five minutes later and we were in awe. We just stared at her as she looked so happy for the first time in her life. I cannot describe to you how beautiful it was. Our baby girl could see heaven. I know the Lord was IN THAT ROOM right then. He already had her in His arms and she was smiling. We knew it was time and told them to shut off the machines. We all prayed so hard for a miracle while Penelope was still fighting, but it was not until the end that we got it. It was truly miraculous to see my child see heaven.
33. She taught me that the fight continues. I am throwing myself wholly into the Vivint contest. I know many of you will never read this because you've probably "Hidden" me from your walls with all my annoying reminders and requests to vote! Well, you've made it through this note, so here's another one. If this touched you, vote. It's all I want in the world right now. PLEASE go every single day and vote for CHERUBS so that we can make a small impact on the future of this defect. I am flat-out begging you. Please. www.voteforcdh.org

What did Penelope teach you?
Thank you and, as always, I love you all.
Samantha