Best Big Brother Ever

So many of you are probably expecting to read something about how awesome my big brother, Rusty, is. And its true. he is awesome.

but that isn't what this post is about. Today God reminded me of how amazing my little man is and how lucky Maddie is going to be to have him as a big brother.

we had a beautiful 8 week old girl, Ari, over for a few hours today. she started to cry, as babies do. at first dillan was really upset but when i explained that sometimes baby's cry and its ok, he calmed down. i also told him babies like it when you sing songs and give them love - it helps them stop crying.

the next time she cried, without hesitation, dillan went over and kissed the top of her head. then he reached down, gently picked up her little hand and started singing "just take my hand, hold on tight. i will protect you from all around....."

it was one of those priceless, melt your heart moments that make you so thankful to be a parent. but what makes this really sweet is that Luke and Dillan have started to sing "You'll be in my heart" almost every night to Maddie. Mostly Luke sings and Dillan blows raspberries on my belly.



it really touched me deeply that Dillan has made the connection that this song is something we sing to make the baby feel better and know that we love her. and i really love that his little heart was so open and willing to share that with Baby Ari today.

She's a growing girl!

I saw my OB today, Dr. Walker. Dr. Walker is my regular OB here in Monterey, who originally spotted Maddie's defect and sent us up to UCSF. I'm measuring at 28 weeks but only 25 weeks pregnant. And since i've only gained 8 pounds this entire pregnancy, hopefully this means I'm growing a big, strong healthy baby girl ready to come out fighting.

I also had an appointment with my psychologist today, the first in about a year. She was awesome in helping me work through my struggles with PTSD and it was good to be back in her office today. She humbled me by helping me realize how fixated i am on the idea that Maddie will only have one good lung. I mean really, how many times have I had something life threatening happen to either of my lungs?

so the new rule is i get 10-30 minutes a day to research, blog or talk about CDH. The rest of the time needs to be filled with meaningful and purposeful distractions, or completely mindless distractions - just so long as i'm not sitting around worrying. Now scheduling playdates!  worrying isn't going to help anyone and its just burning me out.  We have 3 and a half months left until Maddie gets here and I need to pace myself.

she also advised me to have some canned responses ready rather then feel like I need to engage everyone in a conversation about CDH and bring them up to date. that's what this blog is for right?

so all and all, a good day and a reminder of what amazing care Maddie and I have access to.

as a side note, i've made a few improvements to the blog, include a link to follow Maddie's corner on Facebook, a place to subscribe by email, a glossary of CDH terms and right after I finish this post, I'll be figuring out how to add an RSS feed (you're welcome Ann). even if you don't use any of this, please take a moment to be awed at my amazing technical blogging skills - minus the fact that i can't add a blogpost title.

Update: No RSS feed - sorry Ann.

This is a big deal

so one of the things about CDH is that explaining to people what we are facing is so hard. People get the medical basics of CDH, that is easy enough to understand. Most of us have heard of hernias before. People also get that there is chance Maddie may not make it but see that she has a 90% survival rate and become really hopeful (which is wonderful).

But honestly, it seems like most of our inner circle are failing to grasp the huge fight ahead of all of us. heck, sometimes we do to.

- we've all heard of premies born with underdeveloped lungs and prayed for them
- we all know of babies that have had to face surgery in the first few weeks of life and our hearts have broken for them
- we know know of babies who were born with weird abnormalities and their families were thrust on a strange journey of healing while we waited hopeful for world.
- we've heard of babies with heart problems, kidney problems, inability to digest, struggle gaining weight. and we've done what we can to stand by them and their families.
- we know kids who are deaf or physically disabled or have severe learning disabilities and we've adjusted so that we can play with them.
-we've all seen people in the store with hoses and wires in their nose and quickly looked away

CDH is a random combination of all of the above, plus possibly more. We won't know all of Maddie's struggles for years to come, but we do know that just surviving isn't going to be the end of her fight.

basically, i just really want everyone to understand that this is a big deal, not a simple surgery and everyone goes home happy. that would be amazing and a miracle and something to pray for.

but please work to accept the reality that God has given us this huge struggle. and i keep writing about it and reaching out to you because my family has no chance of making it through this without you.

Blogspot help!

Notice how on my archive menu on the right, my titles are all screwy? Anyone know how to fix it? I tried adding paragraph break, line break, title html, header html.

any advice?

Congential Diaphragmatic Hernia (CDH) Awareness Day

Congential Diaphragmatic Hernia (CDH) Awareness Day

Baby Maddie at 22 weeks

Please Share Madelyn Spence's Story

Thursday March 31st is Congential Diaphragmatic Hernia (CDH) Awareness Day. Please wear Pink (Maddie's color) or turquiose (the official CDH color) and share Baby Maddie's story with one other person.

Madelyn Spence was diagnoised with CDH at 21 weeks of gestation. She currently has an expected survival rate of 90% if no other complications arise. She is due July 13, 2011.
...
CDH is a serious birth defect affecting 1 in 2500 live births. A large hole in the diaphram allows the stomach, liver, bowels or other organs to develop in the chest cavity, limiting the development of the lung, heart and digestive systems of the fetus.

Overall survival rate with CDH is 60%. Long term complications for survivors include deafness, learning disablilities, scoliosis, digestive problems, heart failure, asthma and even death. Life expectanty is unknown as CDH treatment is just reaching a point where survivors are routinely making it past childhood.

Our prayer for this week is that we can share Maddie's story of survival one year from now when we again invite you to participate in CDH awareness day.

Fear manifested

I had a horrible dream last night that social services came and took away Dillan.  Luke and I were so overwhelmed with preparing for Maddie and taking care of her, that we had started to neglect him.

I woke up realizing that we have so much to emotionally process and just praying that we can handle all of this while protecting our children.

BTW - my plan right now is to count on all of you to help take care of Dillan while Luke and I are back and forth in the hospital with Maddie.  Family should be here to help with the day to day, but spontaneous playdates, frequent visits, one on one attention, mental stimulation.  Its basically going to take everyone we know to help keep him happy and thriving.  And we are so blessed to have friends that we can count on to be here when we need you.

Madelyn Bracelet

Gender Neutral or Male Bracelet

Mom came up this last weekend and delivered by Maddie bracelet that I've previously posted about it.  Its really beautiful and I love wearing it.  Such a gentle reminder to keep my hopes up and align my heart with Gods.

Monica asked if there is an organization that we would like her to donate money to and I requested Project Sweet Peas.  Already this organization has been a huge support to me - I've befriended a mom named Stephanie, whose 3 year old, is a CDH survivor.  When the time is right, Stephanie has promised me a Sweet Peas Care Package, full of wonderful goodies to help us in our NICU stay.

The bracelet Mom, Jamie, Therese and I are wearing

Please consider ordering your our Madelyn Bracelet as a reminder to pray continually for His will be done in sweet little Maddie's life.


Rowdy Wear

Thoughts on Pregnancy Termination

This is something I've been thinking about (and bothered about) a lot since Maddie was diagnosed.  I have to be honest, I considered terminating this pregnancy dependent on Maddie's post-birth quality of life.  This is a hard thing to admit considering most of Luke's family and our closest friends are can be described as Pro-Life.  In fact, I imagine this post will ostracize me from at least one or two people who read it. 

Those of you who have ever discussed this with me know that I am neither Pro-Life or Pro-choice.  I feel that this issue has so many shades of gray that to firmly align myself with either camp is not only naive but is allowing another deeply personal and spiritual matter to be politicized.  I do not believe the bible supports either camp and that claiming the bible supports your political ideals over another's is blasphemy. 

Had the doctors told us that Maddie would be born, in pain, and live briefly, in pain, and then die, in pain, I would have probably not continued this pregnancy.  Not that it would only be my decision, but that is what I would have wanted to do.  i am so grateful that we have a more optimistic diagnosis and did not have to really explore this option.

In my heart, I believe maddie is already alive.  She is known by God and if we ever have to pro-actively make the decision to send her to heaven, He will be there to greet her, whether that is pre or post C-section.

So it really bothers me that others, encouraged by some with the same faith as me, are forcing moms to birth babies that will suffer horribly before dying.

Mom Denied Abortion Even As Uterus Crushed Her Fetus

it really bothers me that mother's already in an impossible situation, with their hearts broken and their worlds imploding, are going to be forced to wait 3 days and talk to someone who probably knows nothing about their child's medical condition and isn't required to have any medical training.

S.D. governor signs 3-day wait for abortion into law

its just stupid.  i don't believe abortion is a valid method of birth control and i do believe that we (as a society) are failing by allowing anyone to accept that it is.  But I do believe that there are a million other reasons that women may have to consider termination and none of those reasons can or should have to be vetted by politicians and lawyers.

and i find it disgusting that some parents who made the decision to bring their child into this world, knowing that child would suffer in every brief moment of their life, act superior to parents who made the decision to terminate (i'm seeing a lot of this on the medical boards I've been reading). 

what would happen if all of these "pro-life versus pro-choice" dollars were invested into helping moms with accidental pregnancies carry to term?  to support them when they have to leave their job to go on bed rest or recover from delivery?  used to help infertile couples with adoption expenses?  used to help single moms, who would otherwise abort, establish themselves in a way that could actually support them and their child?  used to help improve our foster care system and rid of it all of the horror stories we all hear about?  what would happen if instead of throwing money at causes, we actually invested in people and in lives and in children?

maybe that would finally get abortion clinics to close?  maybe that would finally lower the crime and poverty rates?  maybe the popular belief that Christians are hypocritical, self-serving and hateful would start to turn around?  or maybe, one mom with a baby with CDH, whose child isn't as lucky as Maddie, wouldn't have to feel ashamed or guilty for saving her child from unspeakable pain and suffering and helping her baby enter the Kingdom, completely loved and at peace.

Little Girls

So little girls are kind of a big deal in our bible study.  As a group, we've had 3 news one this last year, are madly in love with some older little girls in our group and now Maddie is on the way.  The ladies in our bible study have had a great time buying frilly little girl things, like ruffly dresses, leggings and hair clips - especially Brena.  For as ungirly as Brena is, I think she has bought or made the most girly girl stuff for all of our little girls.

Well, if you've been reading you know Maddie will have a while before she can wear anything with ruffles or bows.  She'll be in a warmer and a diaper and nothing else for quite a while.

Brena wasn't so ok with this.  So she called UCSF's NICU (yes she actually called) and drilled some poor nurse until she found out that Maddie will be able to wear customized little hats and that we can attach hair clips to them.  Bring on the girlieness in the NICU!!!

Loving that God has given me such an amazing group of girlfriends.

We also know that we can decorate her bassinet, machines, nurses station, ect. and we can lay her on top of baby blankets that we bring in - we don't have to lay her on their sheets and blankets.

Next UCSF Appointment

Our next UCSF appointment is set for April 7th.  Another ultrasound and another echo and another meeting with our Peri. 

Just letting you know.

Not such a good day

I'm having a really rough day today.  I've been spending a lot of time reading the blogs of our CDH families and learning their stories.  And i know their stories are not going to be Maddie's story, but there will be a lot of similarities.

While I was pregnant with Dillan, I couldn't wait for him to be born.  I just wanted to meet him and hug him and hold him.  I ached for my baby.

With Maddie, its totally different.  I just want to keep her inside of me - she is safe there and our lives can go on (more or less like normal) as long as I'm pregnant.  As much as I know she will be a blessing to all of us, I look to her birthday with dread.  It means having to leave my boys, our home, my job, our dog, my bed - my entire world, behind for a while so that I can become Maddie's entire world.  It means day after day of sitting there, helpless, jut hoping that my presence and my touch are enough to help her fight.

From what I've read, a lot (ok most) of CDH moms don't get to meet their baby in the first 24 hours.  if they are lucky, someone snapped a photo right after delivery that they can hold onto until then.  I read one story where mom and dad did not get to hold baby in their arms until 11 days after birth - and that was the shortest I've read so far.  While I plan to pump, I have no idea if she will ever be able to nurse - that is, once she starts eating without the help of a feeding tube.  many moms report not being able to talk to their babies - it overstimulates them and can be fatal.  pretty much everything i remember and cherish about my first few days of being dillan's mommy are going to be impossible as maddie's mommy and i just can't figure out how to do it differently. and i haven't even started to think about all of the challenges we will face after the first few days and weeks.

It just all feels so bleak right now.  Even the best stories are heartbreaking.  I guess I should be thankful I have time to prepare - I couldn't handle all of this today.  I can't even handle the thought of it today.

Maddie's fight ahead

A short read but gives you a very good idea of some of the challenges we face ahead.

Challenges to overcome


What can you do?  Please donate to organizations like this one:
Project Sweet Peas

They provide care packages for families with a baby in the NICU.  The care packages are designed by families who have also had extended stays in the NICU, so they contain just what you need to make it a little easier.

Just a quick note - we got the results of all of the genetic tests back and everything is normal.

Right now, it looks like Maddie's CDH is completely isolated - a huge praise and hopefully a prediction of a short NICU stay.

Maddie's Nursery Theme!

Its been decided.  Maddie's nursery theme will be a Lavender Garden Party.  That means bugs, flowers, trees, suns ect.  Pink is definitely ok, but we are hoping to make lavender and purples the stand out colors. 

I just started putting together a registry for her at Babies R Us.  No need to rush to buy anything yet though - still gotta bring her home and I imagine I'll wait until that happens to really set up her nursery.

I just didn't get it

Right after college, a bunch of my friends got married.  I tried to make it to their weddings, but I missed some of the most important ones (like my roomie).  But I didn't get how important being there was.  Who cared if I missed another party?  They knew I loved them and it was just a stupid piece of paper and a ceremony with a bad band right?

Then I got married and realized how much it meant to have so many loved ones gather around us and help us start our marriage.  That their presence, laughter and gifts all told us that they supported our love and were happy to be a part of it.  And how much more then a party and stupid ceremony that day turned out to be.

And every time I've gone through a major life change or challenge, I've had to relearn the same lesson - i just didn't get it before.  And i'm learning that now with Maddie.

I've sat by friends who have miscarried.  I've tried my best to say something loving and encouraging to friends who have lost babies late in their pregnancies.  On some occasions, I celebrated a little too loudly when what could have been a lost baby turned out to be a miracle and is now a healthy handful - forgetting to acknowledge the trauma that the family just went through and the one they narrowly avoided.

Much of this was after I had already become a mom.  I just didn't get how losing a baby during pregnancy or right after birth could hurt so much.

so to my friends with no children or only healthy children, i want you to know that i get it.  you have no idea what to say, how to say it or even if you should say anything. and sometimes that makes you feel and (honestly) sound like an ass.  But i want you to know that i appreciate you trying.  That you let me acknowledge that we may never bring Maddie home.  And even though you may not get it, thank you for letting me say it.  Thank you for words of encouragement meant to remind me that we likely will bring her home, but thank you even more for letting me know you'll be there if we don't.

The Madelyn Bracelet

Baby J now officially has a name - Madelyn.  no middle name yet.  We have it narrowed down to a few, but we have plenty of time to decide.

Here is the link to buy your official unofficial Madelyn bracelet.

Madelyn Bracelet

The artist who is making them has graciously agreed to make them at cost plus shipping.  Although we did not know her a week ago, her gracious encouragement and support speak volumes about her heart.

The bracelets will look similar to the one pictured here, but will include pink strands of leather (in some gender neutral kind of way).

Whether you chose to wear this bracelet, a different one or none at all, we hope you'll continue to lift Maddie up in prayer regularly.  She (along with her family) has a tough fight in front of her.  I have faith in God's power to protect her and for His will to be done.  And I have faith that at least some of my stubborn genes will be passed onto her so she is ready for this fight when it comes.

What we learned

Sweet Little Baby J

 We got to know Baby J very well after watching her on the monitors for well over 4 hours yesterday.  She’s beautiful (pictures attached) and loves to suck her thumb.  She got very frustrated at all of the sensors and made a game out of kicking or punching them every time she could find one.

So yesterday we went through a level 2 ultrasound, a fetal echocardiogram and a amniocentesis. Here is a summary of her medical condition:

• She has congenital diaphragmatic hernia. This means that a hole in her diaphragm has allowed her stomach to grow inside of her chest cavity.  Her stomach is retarding the growth of her left lung and has pushed her heart to the right side of her chest.
• Except for being in the wrong place, her heart if perfect (HUGE PRAISE!!!)
• Her liver is in the right place.  If it were also herniated, we would be looking at a much lower chance of ever bringing her home. (HUGE PRAISE!!!)
• Her Lung to Head Ratio, LHR, (left lung, head circumference ratio) is 1.2.  1.4 and above is ideal, 1.0 and below is pretty hopeless.  We are in the middle range, and this number may still go up in future ultrasounds. (HUGE PRAISE!!!)
• As far as they can tell, this is isolated CDH.  As long as this is the case and no other complications present themselves or develop, her overall survival rate is estimated to be at 90%. 

Challenges still ahead

• There is still a 10% chance we won’t ever get to bring Baby J home.  The health and development of her right lung are of our greatest concern.  We also have to be aware that further complications, spontaneous miscarriage, preterm labor and even still birth are more likely to happen during this pregnancy then others.
• After birth, Baby J will need at least one surgery and several weeks in the NICU to recover.  In addition to complications from this surgery, her ability to feed, thrive (i.e. grow), breathe on her own and the continued development of her right lung will all be closely monitored. 
• Long term, Baby J will live life with only one fully functioning lung.  Hopefully this just means we’ll have to remind her not to run so much and never to smoke.  Realistically, she may be developmentally delayed or impaired, both physically and mentally. She will need to be closely watched for years and receive followup care and surgery as needed.

What comes next

• Monthly Ultrasounds at UCSF, followed by more frequent checkups as we approach delivery.
• Delivery via c-section at UCSF in week 38 or 39, followed by a 3 to 8 week stay in the NICU.
• An otherwise normal and uneventful pregnancy.  I am not on bed rest, restricted movement  or anything else.  In fact, the doctor stressed having as normal as possible next couple of weeks, taking care of each other and getting our rest.  Once this starts, it will be stressful, exhausting and demand a lot out of our entire families (even Dillan). Spending our energy on bonding and growing as a family now will be vital to pulling us through these hard times ahead.
• Closing escrow on the house.  In the background of all of this, we are still in the process of buying a house.  Which means in the next couple of weeks we need to pack, move, paint, garden, polish, replace, ect. ect. ect.
• Figuring out the logistics of work, laundry, food, taking care of Dillan and Dakota after Baby J is born, especially while she’s in the NICU.  We especially want to make sure Dillan never feels left behind, forgotten or otherwise marginalized.

Prayers

She looks just like Mommy!

We don’t image for a moment that the road ahead of us is an easy one.  There are so many factors, any of which can completely change everything in a moment. 

• Praise Him for the good test results we did receive.
• Praise Him for the love and grace He is showing us through our doctors, friends and family.
• Praise HIm for writing so many verses that speak to our hearts in this time.
• Ask Him for His will be done. 
• Ask Him to prevent further complications.
• Ask Him to allow us to relax and pace ourselves.
• Ask Him to continue to provide the world’s most amazing doctors to manage Baby J’s health
• Visualize coming to visit us in our new home with our two kids and Dakota running around creating total havoc.  Pray for that image to become a reality.

Congratulations if you read all of this.  You are a great friend.  Questions are welcomed - many of them help us remember what to ask the doctors next time.

Wear Pink

We are so thankful for all of the support and prayers we've already received on behalf of Baby J.

We'd like to ask you to wear or carry something baby girl pink with you on Monday while we are undergoing testing and consults.  When you notice your piece of pink flare, please take a second to lift Baby J up in prayer.  Even if 5 people do this and notice their flare 20 times, that's a lot of prayer for this little girl and her health.

We'd love to see pictures of you with your flare too.  Again, your love and support and prayers are really helping us get through day to day while we wait right now.  And the waiting is the hardest part.

A little Hope

Found this information at http://www.fetalcarecenter.org/conditions/cdh/cdh-details.htm.  It describes the integrated approach that this hospital and UCSF apply to patient therapy.  The last paragraph is what I'm really clinging to right now.

The Fetal Care Center CDH Team offers a unique management strategy that begins with the prenatal Congenital Diaphragmatic Hernia / CDH prognostic profile and continues through delivery, care in the NICU and post-discharge and long-term follow- up with continuity of care provided by the same team of physicians. Principals that characterize the CDH Team management strategy include:

• Integrated continuity of care
• “Gentilation”
• Aggressive management of pulmonary hypertension
• Echo-cardiographic assessment and support
• Delayed surgical repair
• Bronchoscopic evaluation
• Aggressive nutritional support

The Congenital Diaphragmatic Hernia / CDH Team includes an experienced multi-disciplinary team of:

• Surgeons
• Neonatologists
• Interventional cardiologists
• Advanced practice nurses
• Respiratory therapists
• Occupational therapists
• Speech therapists
• Nutritionists

Our family-centered approach encourages parents to attend and participate in every aspect of their child’s care, including family-centered rounds, which are conducted daily at the patient’s bedside.

Our CDH Team works closely with referring obstetricians and maternal-fetal medicine specialists to facilitate prenatal management. We also work closely with pediatricians who will be assuming primary care once the baby has been discharged home.

This integrated approach has achieved survival rates for isolated CDH of 92 percent, and 100 percent for fetuses with LHR ≥ 1.0.

Prayer for our appointment

Our appointment is set for Monday.  The baby and I will be going through all sorts of tests and holding consults with specialists throughout the day.  So the really great news is that we will have a clear picture of what is going on, what to expect and what comes next by Monday evening.

Specific Prayer Requests:
- For an amazing team of medical professionals to take care, guide and advise us.
- For this to turn out to be nothing - just a big ultrasound fake out.  God healed Dillan without any medical intervention, we have complete faith He can do it again.
- If it is CDH, for and LHR of 1.4 or greater, lung down and a left-rear hole.
- That no other abnormalities, defects or complications arise. 

Less Specific Prayer Requests:
- For peace and understanding as we go through this.  I can't figure out why two healthy, active young adults like Luke and I have had such a hard time with our pregnancies and having sick babies.  It confuses and aggravates me.  

I'll post again Monday night or Tuesday morning with the results.  Until then, please keep your prayers coming.

Facts about CDH (congenital diaphragmatic hernia)

- Occurs in about 1 in 2,500 births.  Most cases for sporadic, although we do have an increased risks of having more babies with the defect now that we've had it once.

- We are looking at a potential Bochdalek Hernia, which is the most common type (about 90% are this).   this means the hole is in the back and left of the diaphragm.

- roughly 36% chance of having a secondary defect - heart or chromosomal being the most likely.  Prenatal karyotyping will be used to discover chromosomal abnormalities before the baby is born. Fetal echocardiography will be used to discover any heart defects.  Presence of either of these increases the risks for infant morbidity. 

- If it is in fact CDH, we are hoping for a 'liver down, LHR of 1.4 or higher' result.  This is the best place to start from - easiest to fix, lowest risks of other complications.  They will do an Fetal MRI on us to figure this out.

- UCSF is one of the national leaders in CDH research, treatment and experimental surgeries.  which is amazing that we live here.  i've been looking at some other CDH hospital sites and they offer far less options and resources then UCSF.

Its a girl

We got some great news this morning - ITS A GIRL!!!!  we are so thrilled and excited and i'm having visions of pink ruffly things all over my house (at least until she becomes a tom-boy).



 The ultrasound showed some abnormalities and we have been referred up to UCSF to get a Level 2 ultrasound and work with a fetal therapy team.  The ultrasound from this morning appears to show the stomach developing in the chest - which is called Diaphragmatic Hernia.

http://fetus.ucsfmedicalcenter.org/cdh/

We should be in San Fran within the week to see the doctors and hopefully know a lot more then.  Any range of possibilities at this point - from a misread ultrasound to self-correction to emergency surgery (while pregnant or after delivery).  

We are overwhelmed and scared and just trying to focus on things one step at a time - right now that means the next appointment. 

Prayers are great.  Please feel free to call or email, just don't be offended if you don't get an update right away.

Love
Lisa, Luke and Dillan