Happy Omphalocele Awareness Day!

Words I never thought I'd say, for a day I never knew existed last January 31st!  But this year, and all the years from now on, will be different.  

This is Molly's day.  Today we honor our brave little beauty for her triumphs in her first 34 days of life, and for her strength to face the challenges that lie ahead of her.  You are an amazing miracle, Molly!

Molly in her black & white

Join us in wearing Black & White to raise awareness and to honor Molly.  To learn more about O Awareness, here's the PSA (adapted) from the Mothers of Omphaloceles (a group we are a part of):

JOIN US AS WE CELEBRATE

OMPHALOCELE AWARENESS DAY!

JANUARY 31, 2013

Who are we? We are the Mothers of Omphaloceles, also known as The MOOs. We are parents, grandparents, family and friends, over 600 strong, who are all connected by a birth defect known as omphalocele. Some of us are anxiously awaiting the arrival of our special “O” babies. Many of us have young children and teenagers who were born with the condition. There are several of us who were born with an “O” and are now grown adults, some with children of our own. And there are the parents of “O” angels. We have come together from all across the world to form a community of strength and support. Today we are asking for your help to spread awareness about omphalocele.

What is an Omphalocele? It is a birth defect in which the abdominal wall does not close properly, allowing abdominal organs to protrude into the umbilical cord. In some parts of the world it is referred to as an exomphalos. It is often detected between the 12th and 20th weeks of pregnancy. It is estimated that a small omphalocele occurs in 1 out of every 5,000 births, a large omphalocele 1 in 10,000. At this time there is no confirmed cause for the condition, and no cure.

There is still a lot of misinformation about omphalocele. With the latest treatments the prognosis for our children is good. But many medical professionals are unaware of those treatments. Many of us are told that, even without other defects, our babies will not survive. Many of us are advised to end our pregnancies. We are told that our children will most definitely be born with additional complications. But what we have learned in our community is that our children CAN and often DO survive when given a chance. With advancements in pre-natal screening and treatment options, including surgery and non-operative management (aka Paint and Wait), the mortality rate is drastically reduced, and more of our babies are living and thriving.

Today we are asking for your help in sharing this message. Share it with your family and friends, and help us reach others dealing with this diagnosis. Share it with medical professionals, especially those involved in treating our babies, so that they know to give our babies the best chance possible at a normal life. And most importantly, help us spread HOPE.

1 Month

Happy One Month Birthday, Molly Alice!    

You have filled our lives with abundant joy, more than we ever could have imagined.  You have astounded us with your strength every single day, and shown your sweet contentment in the face of so much adversity.  You are absolutely beautiful.  You are our big miracle in a little, tiny package, wrapped perfectly by the hands of our Wonderful Maker.  We are blessed beyond measure and so, so very thankful for you.  

Birthday girl, asleep in Daddy's arms tonight

So much to report!

I know this Molly update is long overdue!  First I want to say THANK YOU! to everyone who has prayed for Molly Alice, asked how we're all doing, hugged and encouraged us, given me rides to the hospital, brought us delicious food, run errands for us, done housework for us, and sent us love across the miles through the mail.  You have really made these past 3 weeks much easier on us, and allowed us to focus our energy and time on our precious Molly Alice.  We are so grateful to have you in our lives, and so is Molly. :) 

All bundled up after bath time

I have a lot of happy news to share!  Molly is doing beautifully.  She has changed so much over these 3 weeks, and we're seeing more of her adorable little personality every day.  It's amazing how content she is, despite all the pin pricks, lines and tubes, loud noises and beeping alarms, and other crying babies.  Nothing much seems to bother her!  She's tremendously satisfied being held and gazing at us, "reading" her books, and looking at her mobile.  She is making steady progress, which is just what we've prayed for; it seems like each day she conquers a new milestone, and she makes it look easy!  She really is an amazing little fighter.  

Snoozing in her cute hat made by Aunt Susan

The primary focus right now is feeding.  Molly has progressed from getting 1 ml/hr of milk to 19 ml/hr of milk through her NG tube (a tube that runs through her nose down into her stomach).  She's been fed continuously since birth, always keeping her belly somewhat full and gradually stretching it out.  We've gone very slowly since her stomach is in her omphalocele; her digestive tract has a different layout from ours, so we are careful not to overwhelm her with feedings.  Now that she's at a nice large volume, the doctors will start moving to bolus feeding, which means she will get her continuous feed turned off for an hour so that her stomach can empty, giving her time to feel hunger for the first time.  Then it will be turned back on, giving her a full sensation.  Gradually the time off will be lengthened and the time on shortened, until it mimics the natural newborn feeding routine of eating a lot of milk at once every few hours.   This is a fragile process, so please pray for her to tolerate this transition well and without setbacks.  

Perhaps the most exciting news we have is that Molly has been given the go-ahead to attempt oral feeding from a bottle, and she gets to try two tiny bottles a day!!!  So far, she's taking her time.  She is figuring out how to suck, swallow, and breathe (which is a rather complicated process, you know!), and stay awake at the same time (which might be the most difficult part).  She's also been given permission to try to latch for breastfeeding (hallelujah!), and we hope to move to breastfeeding once she's conquered the bottle (where the drs can closely monitor the amount she's eating)!  

Alert after a dressing change.  Look at those wide eyes!

Molly's omphalocele is healing well and the surgeon is pleased.  (The surgeon handles all things omphalocele until she has her closure surgery in a few years.)  The membrane is thickening and skin is slowly growing.  He thinks it will take about 9 months to a year for the skin to fully cover it.  The dressing change responsibility has been passed on to us now, so we do her dressing change nightly.  There is still a large thin spot in the membrane that is very fragile, so please pray for this spot to thicken and heal so that she will be at less risk for harm to her omphalocele.  Amazingly, our sweet girl doesn't seem to mind her dressing changes nearly as much as having her diaper changed, and many evenings she falls asleep while we are wrapping her in gauze. :)

One more exciting piece of news: Molly got her PICC line taken out yesterday!  That was the last remaining invasive line (like an IV into the heart), through which she had been receiving additional nutrition and medication if needed.  SO the only thing left besides her breathing, heart rate, and oxygen monitors is her feeding tube!  Yay!  Without all those lines, she can wear many more of her cute outfits, like onesies with sleeves!

Being held by Gram & Pop for the first time!

Little fashionista in her Cupcake onesie and legwarmers!

Tears

"There is a sacredness in tears.  They are not the mark of weakness but of power.  They are the messengers of overwhelming grief and of unspeakable love." ~Washington Irving

This was one of my favorite quotes throughout my pregnancy.  I often thought of it when all I could do was cry.  It justifies my tears.  So much grief, so much love, even before our little one had a known gender or a name.  I've cried more tears over these 10 months than I've cried over the past 10 years combined, and they continue to fall even as I write this.  

We have a routine now.  I go to the hospital to visit Molly for the first half of each day, and then I come home for the afternoon.  When Cameron gets home from work, we have dinner, then we go back to see Molly together at night.  Nights are our precious family time.  We usually give her her sponge bath on the scale under the heat lamp.  We brought in her own bath supplies, so she smells extra sweet.    Then we put her in a fresh diaper and clean outfit.  We swaddle her up tight and hold her, and read her a bedtime story.  She loves the stories her daddy read to her religiously before she was born.  Then we say her prayers and tuck her in to sleep.  Right now, she's already asleep for most of the routine, other than the bath, which she's learning isn't so bad after all.  

Would you believe she already recognizes our cues that we are saying goodnight?  She spends the evening quiet and calm, until we start to wrap up to leave.  Then she opens her eyes and bats them at us, suddenly wide awake for the first time all night, begging us to stay.  Or she starts to fuss with a pitiful scrunched face, and the urge to hold her is too strong to deny.  She knows when we are leaving.  She makes it next to impossible.  

But then we bid goodnight to our precious baby girl, and we eventually have to leave.  We leave her bedside and walk out of her room after several returns to kiss her sweet fuzzy head.  Always hand in hand, we walk out of the NICU, push the button for the elevator that always comes too quickly.  We walk down the deserted hall and out of the hospital into the lonely night.  Tears sting my cheeks that are chapped from our nightly exits in the cold.  We get in the car and leave the parking garage.  We drive the long way just to drive past her window, say goodnight to our sweet Molly as we go by.  Ask God one more time why we have to do this.  

Yesterday Molly turned 2 weeks old.  Leaving her has only gotten harder the more we get to know her and love her.  There is so much joy and hope and pride and life when we are together. It feels so wrong to be without her at home, in the car, everywhere I go.  She's supposed to be with me, isn't she?  I hope it won't be this way for too much longer...  

Molly Alice

I have wanted to write a post since the day she arrived, but life has been crazy, to say the least.  It's been an amazing, exhausting, joyful, painful, wonderful, emotional roller coaster of a week!  

But finally, we are so proud to announce the arrival of our baby girl,

Molly Alice Ingram

born December 27th, 2012 at 11:43 a.m.

6 lbs., 1 oz.

18 inches long

and fearfully & wonderfully made

meeting daddy

then meeting mama

There is SO MUCH to say about her first 6 days of life, but there is so much to share that I don't know where to start.  I promise to fill you in on the details soon.  For now, I'll just say that these have been the most wonderful days of our lives, and yet, the hardest ones too.  There are no words that can express the love that we have for her, the space in our lives and hearts that she fills to overflowing.  

We just wanted to share some pictures to tide you over until we have the chance to write again and share more about her first week of life...

getting as close as we can

 Off the ventilator on day 4!  Go, Molly, Go!

Holding her for the first time on night 4! A BIG, fantastic surprise!  

Look at that sweet face.  

Ringing in 2013!  The best New Year's Eve yet!

Thank you for all the congratulations, well wishes, and prayers for our sweet Molly.  Please keep praying for us all as we adjust to life apart, now that we are home and she is at the hospital.  She is our beautiful new world.