CDH Flow Chart

In my effort to explain the next couple of weeks to friends and family, I came up with this.  If any of the more "seasoned" CDH families have some feedback, I'd love to hear it.

For friends and family - i hope this helps you understand our prayers and struggles over the next few weeks/months/years.  click on the link below to make it large enough to read - you'll be redirected to Picasa Web Albums

Click here for Larger Image

CDH Recommended Reading List

Just wanted to share some of what I've been reading as we get ready for Maddie's arrival next week. 


Journal of Pediatric Surgery  - just search for CDH.  Only the abstracts are available for free but they provide enough detail to start a conversation with your doctor.

Your Child in the Hospital by  Nancy Keene and Rachel Prentice.  Excellent book to help plan the nuts and bolts of a long term hospital stay.

Why Mine? A Book for Parents Whose Child is Seriously Ill.  A short pamphlet that helps think through and deal with some of the emotional stress of having a sick baby.

Everything on the CHERUBS web site. 

Other CDH blogs, especially where the CDH baby is still a baby. 


For Siblings:

When Molly was in the Hospital. By Debbie Duncan
What about me? When Brothers and Sisters get sick. by Allan Peterkin
Curious George Goes to the Hospital

Pregnancy Photo Shoot

Belly Pictures and a Middle Name

37 weeks and 2 days

Also, Maddie has a middle name!  Madelyn Erin Spence

NICU Visiting and Support

We are just 12 days out from meeting Maddie!  Excited, nervous and exhausted as we start to prepare to go up to UCSF.  I'm figuring now is a good time to post this message for those of you that either want to come visit or know how you can support us while in the NICU (in case Maddie comes early).

Stuff to know:

• UCSF address is 500 Parnassus Ave, San Francisco, CA.  NICU is on the 15th floor.  You have to take special elevators up.
• We we will be there anywhere from 30 to 60 days (hopefully not any longer)
• We will have access to email/facebook at night
• We will check our voice mail when we step out of the NICU, but don't expect quick replies.

Visiting:

• Except for immediate family, you will need to coordinate with us ahead of time (1 or 2 days) if you plan to come visit.  You can't really get past the elevators without Luke or me.
• Immediate family will have their names on the visitor log. You'll be allowed in after checking in at the nurses window.  Immediate family CANNOT escort people in who are not on the list.
• No one under 14 allowed.
• Please become a manic about hand washing and avoiding people who may be sick for 3-4 days before visiting.  
• If you have even a slight runny nose or cough, don't come.  The nurses won't let you into the NICU anyway.  Plus, any infection can be a serious complication for Maddie - even a cold.  And if you give it to me and I get kicked out of the NICU, I may kill you three times.

Support

• Dillan and Dakota need love.  While we have awesome family and friends taking care of them, they both need playdates.   Lots of playdates.  Lots and lots and lots of playdates.  Did I mention, you should make some time to come play with my big babies?
• Prayer.  Or happy thoughts. Or champagne toast.  However you usually ask the Lord to help, please do that for us.  A lot.  Can't get enough of it. 
• Don't get offended or impatient if you don't hear from us for quite a while.  We are already in survival mode and it's only going to get worse.  But your phone calls and emails and texts and words of encouragement mean a ton to us, so please keep them coming.
• We won't have a car (most of the time) and will be quite nomadic.  Plus I will be recovering from the c-section. Storage and our ability to receive anything large or heavy is completely out. If you plan to mail a care package, please limit it to these types of items.  Email me at ladibug4@gmail.com for the mailing address (I'm not ok posting my sister's address on the internet).
• Baked goods for the staff!   We want Maddie to have the best care possible and if we keep everyone fat and happy, we figure we can't go wrong.  Feel free to include a little card or note thanking them for their hard work.
• Gift cards - food, toiletries, Amazon, Starbucks, Jamba Juice, etc.
• Head accessories, blankets, booties, stuffed animals for Maddie.  However, anything you send will likely be donated to the NICU, so save the special gifts for when we get home.  She won't be wearing clothes for several weeks, so please don't send clothes yet.
• Cards, notes, verses or anything like that.  No books please. Again, 99% of what we receive will be left at the hospital when we leave.
• Despite you're awesome intentions, save flowers, plants, gift baskets, toys for Dillan, etc until we are all safe at home. 

4th of July Milestones

4th of July has always been my favorite holiday. But earlier today, I was thinking about how defining this date has been to me as an adult. Let's walk down memory lane together....

1997 - Cadet Basic Training. There was a concert at Trophy Point - i fell asleep. afterward I was introduced to a family with a special needs teenager. She hugged me. It was my first hug since I had left LAX the week before. It brought me to tears.

2001 - Just graduated USMA. Spent the 4th in Santa Barbara with my family. Had an amazing day. This is the last time my family was together before my parents separated the following month.

2002 - Deployed. I think i was in Qatar for the actual 4th celebration.

2003 - Flew home from Iraq. Landed in the states on July 5th.

2005 - My dad met Luke for the first time. Dad approved.

2006 - Luke and I got stuck in Arizona on our way home from the most amazing honeymoon ever.

2007 - Last day of our Greece sailboat adventure. Yes, we lived on a sailboat in Greece for 10 days. Can you say unforgettable?

2008 - Awesome beach party in Carmel with Toph and Vicki. First and last time I've really seen Luke drink a bit too much.

2009 - I think we stayed home - Dillan was only 6 months old.

2010 - Camped out in Dad's yard. Almost burned his house down.

2011 - We'll be headed up to SF to have Maddie early the next morning.

Here's to a lifetime of 4th of Julys with my sweet babies and my wonderful Hubby and all of our family and friends. 

Back on Bed Rest

So this is familiar territory - I've mentioned on this blog that I was on bed rest with Dillan for 16 weeks.  Today I start bed rest with Maddie which will last 2.5 weeks - super easy for us!


I started having contractions at about 3:15 this morning.  They weren't real labor contractions - i could still talk and walk through them, but they were much much stronger then the braxton-hicks i've been having for weeks.  Every 10 minutes for about 90 seconds and radiating up my back - so off to the hospital we went.

So at the hospital we established that we were definitely in a labor pattern but nothing was happening with my cervix (Thank God!).  So they gave me a shot and some take home meds.  No more work.  No more exciting days out of bed. Scared my poor nurse at CHOMP so badly - she was very well aware of the dangers of having this baby anywhere except for at UCSF.  The whole team there was great but we definitely gave them some early morning excitement.


Really looking forward to cuddling up with my little man and watching endless hours of movies - I'm hoping it will be great bonding time before we head up to UCSF for the real thing. 

Please pray that we don't go into spontaneous labor.  In addition to the hour or so it takes us to get to CHOMP once we drop off Dillan and drive over there, we'd still have to be transported up to UCSF and no one knows for sure how long that will take (assuming it will take less then the 3 hours to drive there).  Plus spontaneous labor would really just mess with my plans to take care of everything and every one.  If you know me at all, you know that I don't do well with huge changes in plans especially when they are unexpected.

Please pray for the Anthony family.  Their baby boy Braiden was sent home to the Lord this evening.

Pray for Maddie

Prayer Chain Video for Maddie. Please share.

Make photo slide shows at www.OneTrueMedia.com

Week 34 Pictures

As promised (a little late) here are the most recent pictures of Little Miss Maddie from UCSF last week.

What do you say?

So I realize (with a little help from my friends) that my last post may have left some of you feeling like you don't know what to say to me.  I'm sorry.  I'm scared and overwhelmed and frustrated and excited and need to be able to express all of it.

But you know the right things to say to someone who is about to have a baby.  And you can guess the right things to say to someone with a child in the hospital.  And I can think of nothing better to help me remember what a blessing Maddie is then for you to remind me of how special she is and how much you are looking forward to meeting her and kissing her and holding her.

We are so blessed to have your love and support and prayers.  And I am thankful that you read this blog and let me pour myself out into it, even if sometimes I'm a total mess.

Plurality of Man

So i just reread this, and i'll warn you, I'm in a cynical mood and this is not a happy blog.

Paul the Apostle talks about being a slave to sin and not wanting to be in Romans 7. Its a verse I've really struggled to understand over the years.

The trouble is with me, for I am all too human, a slave to sin. I don't really understand myself, for I want to do what is right, but I don't do it. Instead, I do what I hate. But if I know that what I am doing is wrong, this shows that I agree that the law is good. So I am not the one doing wrong; it is sin living in me that does it. And I know that nothing good lives in me, that is, in my sinful nature.  I want to do what is right, but I can't. I want to do what is good, but I don't. I don't want to do what is wrong, but I do it anyway. But if I do what I don't want to do, I am not really the one doing wrong; it is sin living in me that does it. I have discovered this principle of life—that when I want to do what is right, I inevitably do what is wrong. Romans 7:14-21 NLT


And i have to say, that is about how I feel about myself right now. I want to be excited that it's almost time to meet my little girl.  Most people have the same reaction when they ask and hear that her due date is just around the corner - aren't you so excited!  almost time! bet you can't wait.  And biologically, I want to be done being pregnant.  No doubt about that.  But I still want to scream - DON"T YOU GET IT????  shes safe inside of me.  she doesn't have to have surgery or tubes or medicine or feel pain or anything.  she loves the sound of my voice right now and pushing her butt up against my touch.  all of that changes the second she is delivered.  there is an evil lurking inside of her that is going to make her hurt and shes going to go through more in her first 30 days then most of us will in a normal lifetime.  so i can relate to Paul - I want to feel so excited and happy and anxious but I can't.  when i want to feel what is "normal", I inevitably feel scared and overwhelmed. 

its only within the last few weeks that i've become optimistic enough to believe the statistics the doctors have been given us all along and that she will actually come home one day.  i'm no where near feeling ready or happy about helping my baby girl and my family through this process.  My love for Maddie is not diminished becuase of the CDH, if anything, just the opposite.  But my fear of her battle against CDH is so great that I can't get beyond it and start feeling what is "normal".

So onto my next rant - 1000 Letters for Maddie.  I'm going to postpone this goal inevitably.  It was a great goal for me to set and a cause I still believe in wholeheartedly.  And it was a cause I needed to focus on for a few weeks when things were really impossible for me to wrap my head around. But the amount of effort I put into it versus the response I got was disappointing.  Not from you - i'm sure if you are still reading this blog you supported us by sending in at least 1 letter for CDH babies.  I've decided that I need to carry forward under the delusion that everyone I know and love and have some sort of contact with will actually support us through this entire process, even if it takes years.  Being reminded that printing, signing and sending in a letter is too much shatters my delusion and i'm not ready for that either.  It may be months or even years, but for right now, I'm going to focus on getting ready for 1000 Kisses all over sweet little Maddie.

Baby Penelope

Praying for Baby Penelope and her family today. Penelope lost her fight with CDH this morning.

About the repair surgery

I found this on the CHERUBS website. Its the American Pediatric Surgical Association's description of what will happen to Maddie immediately after birth and leading up to her repair surgery. I just copied the text over, but if you want to see the diagrams, click here:
http://www.cdhsupport.org/apsacdh.php




Before Surgery

All newborns with CDH require surgery; however, the timing of the operation may be different for different babies. In the past, people thought that the babies needed an operation immediately, but it now looks like that is not necessary.

The operation may make the lungs worse because it can put The operation may make the lungs worse because it can put pressure on the good lung. This is usually a problem for just a short time. Before surgery, the baby will usually have a tube going into the stomach and catheters in an artery and vein. The infant will be on a mechanical ventilator and most hospitals will try to keep the amount of pressure on the lungs from the ventilator as low as possible. This is to avoid injuring the very small lungs.

Before surgery, the baby will have a tube in the stomach to keep air out of the intestines and to keep the intestines from pressing on the lungs. The amount of oxygen in the baby’s blood will be watched constantly, usually with a device (pulse oximeter) on the hand or foot. The baby may need medicines to keep the blood pressure normal. In some hospitals, the baby may have a different ventilator that works very fast to breathe for the infant (a high frequency ventilator).

If the baby does not keep the blood oxygen level high enough with these devices, heart lung bypass (ECMO) may be used for several days to weeks. This can only be done in very specialized centers and the infant may be transferred to a center that does ECMO.

The baby will usually have surgery after the situation is stable. It may be days or weeks before an operation is done. If the baby is on ECMO, the infant may have the surgery while on the ECMO machine. The operation may make the lungs worse initially. This is because the intestines are put back into the abdomen and cause pressure on the lungs from below.


Surgical Technique

The CDH is usually fixed by making an incision in the abdomen just below the rib cage. Sometimes, a separate incision in the chest is needed, but if needed, it is usually in babies with a hernia on the right side. The first step is to move the intestines into the abdomen (Figure 4).

After this is done, the edges of the diaphragm are found. If they can be sewn together, they will be (Figures 5, 6, 7). Sometimes, the hole is too large. If this is the case, an artificial patch (such as Gore-Tex) may be used to close the hole (Figure 8 and 9). If, after fixing the hole, there is not enough room in the abdomen for the intestines, another patch may be placed on the abdomen to hold the intestines until the swelling gets better.

The best time for the operation is still debated, but currently most surgeons wait until the baby does not need a lot of help from the ventilator. As mentioned, this can sometimes take days or weeks.