Great Expectations

So my dad has always had a couple of sage pieces of advice that I've really found to be true in my life.  You may have heard others say Expect the Best, Prepare for the Worse.  In our family, we've always said, keep your expectations low and you won't be disappointed.  Since learning that Maddie has CDH, I've really stuck to this in terms of her medical prognosis.  But after our appointment at UCSF today, I've moved up a bit from low expectations to cautiously optimistic.

Totally normal boring ultrasound (new beautiful face pictures later tonight or tomorrow).  Maddie is doing everything she should and nothing new or alarming showed up during the exam.  We meet with Dr. Rand and decided that the next time I need to travel to UCSF is our scheduled delivery date of July 5th or if I go into pre-term labor.  Very cool.

We also met with Dr. Lee, the Director of the Fetal Therapy Center and a pediatric surgeon.  Dr. Lee gives Maddie a 95% chance of survival and explains the other 5% risk associated with things we just don't know yet.  He imagines Maddie will have a relatively short stay (about 4 weeks) after having surgery sometime in the first week of life - assuming no other complications. Once again, I left UCSF feeling like we are the best case scenario for a worse case situation. 

The highlight of the day definitely came during the ultrasound.  Jamie and Dillan came in for the first few minutes and Dillan was transfixed by the screen.  For whatever reason, I assumed Dillan would be able to distinguish the blurry ultrasound images and actually understand that he was seeing Baby Sister on the screen.  About 3 or 4 minutes into the exam, he very loudly and proudly announced "Thats not Baby Sister - Thats a FISH!"  we all died laughing and he repeated the joke about 500 more times. 

Prayer Requests going forward:
- No pre-term labor.  Nada.  None.  Zero.  Not even a little bit.  Don't want it - don't need it.  No thank you.
- No post-labor complications for me.  If ever there was a lady in need of an easy c-section recovery, its this girl.
- No post-delivery complications for Maddie.  We want one repair surgery and then to forget about this whole CDH thing ever happened.  Its possible, even if its not probable.
- Divine Intervention and timing to help work out all of the day to day family logistics starting about July 1 and going forward for a few months.  Housing, food, child care, laundry, doggie care, parking....still a lot of things i'm not exactly sure how we will handle but it helps knowing that we aren't going to be alone through all of this and that we literally have hundreds of people we could call and ask for support (including you so don't reject our calls!)

UCSF tomorrow

Tomorrow is our monthly check up (maybe the last one?) at UCSF. Please pray for another boring appointment, normal progress for Maddie and a very informative meeting with the doctors for Luke and I.  My mom is here with us to help make sure we ask all of the right questions and can digest all of the information we are hoping to gather.


On the agenda - ultrasound, meeting with the pediatric surgeon and possible meeting with the Neonatalogist. 

Will update tomorrow night or sometime on Wednesday.

HOPE Tote Bag

Yesterday we received our HOPE Tote bag from the CDH support organization CHERUBS.  I can not even begin to express how much this group of CDH parents, family and survivors have supported and encouraged us.  We were floored to receive this unexpected gift of baby clothes, blankets, NICU survival items and much more.

Included in the package was a CDH baby book.  This book is amazing - full of great information, CDH baby specific pages, pictures of other survivors and so on.  Anyway, there are a few things in the book that I want to share here.  You can view the entire baby book here: http://www.cdhsupport.org/babybook.php

They have a wish list of items needed to fill tote bags for other families.  You are invited in send items or money in honor of Madelyn Spence.

Ok, so here is the first cut and paste from the CDH baby book (edited a little bit by me to be more relevant and let you know what really stood out to me).

Advice for Family and Friends

• Listen. You don't have to say anything, just lend an ear and a shoulder.
• Learn about the child's problems and how to help take care of him/her. The parents will need trained babysitters that they can trust.
• Avoid saying things like "I understand", "It's God's will", "You just have to accept it and move on", and other cliches and "words of wisdom". Stay positive and respect the parents' decisions and feelings.
• Offer rides to the hospital, babysitting siblings, doing laundry, cooking meals, cleaning, picking up mail, making phone calls, etc.
• Encourage the parents to talk about how they feel, but don't push them too hard.
• Realize that the parents will need support, comfort, and help for many years, not weeks.
• Ask questions, find information, seek support for the parents- but realize that there arecertain boundaries.
• Bring food, books, and magazines to the hospital.
• Take pictures, videos, and help the parents to accumulate mementos.
• Don't be afraid to cry too. The parents know that their family and friends are hurting too.
• Don't expect everything to be "normal" someday- accept the child for who he/she is, an individual.
• Call the baby by name, not "John and Mary's baby" or other such references.
• Talk to your children about the baby and about what is going on in words that they can understand so that they won't be scared of the baby.
• Let the parents grieve in their own ways- even parents of survivors need to grieve.
• Ask the parents what they need and make them feel comfortable enough to let you know.
• Don't criticize the parents (or baby) if their child is developmentally behind or not eating with words like "Isn't that baby eating yet?", "Why isn't he/she gaining weight", "A year old and not crawling yet?".
• These children cannot be compared to healthy children or even other CDH children. They have their own paths to follow and reminding the parents that their child isn't "normal" is very painful.
• Don't try to cheer up the parents if they break down crying in front of you...sometimes we need to cry and be sad. Sometimes trying to cheer us up just makes us feel worse.

Enjoy this blessing

OMG!  41 days and a wake up before I meet my little girl.  So crazy.  We are so not ready but at the same time, bursting to meet her.

Right before we moved a 3 crazy weeks ago, we got the chance to meet with M, a 2 year old CDH miracle and his mom, L.  (L has asked us to keep her anonymous online for some very good reasons).  M had his liver up, spent some time on ECMO and had some really rough days.  We sat and listened to L tell their story of pregnancy, birth, surgery and recovery and very clearly understood that L and her family had been through hell.  But it was impossible to not notice as M played, ate loads of pizza, giggled and proudly showed off his surgery scar - how could this perfectly normal little toddler ever have been so sick? 

Needless to say, we were so encouraged and overwhelmed getting to spend the day with M and to think that one day, we may be blessed enough to introduce Maddie to an expectant CDH family and give them just a little bit of hope and encouragement. 

L passed on one piece of advice that I've been trying to hold onto and make my new mantra - to enjoy Maddie as the blessing she is.  Knowing that we are expecting a sick child is overwhelming.  It is really easy to get focused on all of the bad things that could happen.  It feels really important to make sure people know this is not a normal pregnancy and that Maddie won't be a normal baby or normal child.  Talking to other CDH parents, we all feel like educating the world of this horrible defect is our new life's mission.

So when someone runs up and rubs my belly (especially students) and get excited and happy and ask how many more days until she arrives, my first instinct is to lay it all out for them.  I want to tell everyone how scared I get and that we will have to wait days, maybe weeks, before we can even hold our little girl.  That when they see pictures of her as a newborn, they'll have to work hard to ignore the wires and tubes and bandages in order to see her beautiful little lips and eyes and cheeks. 

But every time I am able to overcome that instinct and feel the excitement of almost getting to meet my little girl, I'm able to remember that Maddie is our blessing not our burden.  That she will be perfect, even if she's not perfect medically speaking.  That I have every right to show off pictures of her and brag about her and am under no obligation to explain or even notice when people get too focused on her tubes or her scars. 

God knew exactly what He was doing when He gave us Maddie.  He has given her a testimony of love and hope and heartbreak and endurance and fight and she isn't even out of my tummy yet. So we are going to enjoy her and not let CDH overshadow Maddie - its just part of her journey, not the journey itself.