Congenital Diaphragmatic Hernia

Once again, it has been forever and a day since an update! That is good though...Sarah keeps us very busy! I

 

A few months ago, we were fortunate enough to be able to have Sarah's feeding tube removed! She had been eating on her own for 6 months, and had not used the tube during that time. So now, she looks like she has an extra belly button where the scar is from the tube.  I hope she will always look at that as a reminder of what a miracle she is!

 

I had the opportunity to e-mail with a mother who is expecting a baby (also named Sarah!) with CDH in the days to come. Please keep baby Sarah in your prayers, along with her family as they move ahead. 

 

 

A little late on this! As usual, we are a little behind on the holidays!

I am always reminded around Christmas of our first Christmas with Sarah...the dissappointment of not having her home from the NICU in time for Christmas, but yet the joy I felt spending time that day in the NICU being surrounded by God's miracles.

In my MOPS group, one of our questions during discussion was "What is your favorite Christmas Carol and why?". My answer..."Mary Did You Know?".

I have always liked that song, but really connected with it through that first year with Sarah. That song would bring me to tears each time I heard it! Thinking of Mary, pregnant, with so many questions, and her only option to trust God, and His plan. 

How difficult it is to be pregnant in the first place! The hormones...any woman who has borne a child knows what I am talking about!

I remember a discussion I had with my friend, Michele, while I was in Nursing School. It was about Faith, and we were discussing Abraham's willingness to trust God with the sacrifice of his son. I was not yet a Mother, but knew that would likely be the most difficult request God could ever make of a person!

And there I was, a few short years later, having to say "Yes, God I trust you. I trust your plan for her...for this pregnancy...for us. If she doesn't make it...it will be for your Glory, somehow."

Things don't always make sense when you are living by Faith...that is why it is Faith. It didn't make sense to me when I knew God was telling me we wouldn't be going to Florida to deliver her...and I had talked myself into believing that our best shot at her survival was to have her treated there. But now, I know why we stayed here....

It didn't make sense when surgery had to be delayed because she wasn't quite ready...

It didn't make me feel hopeful when I saw her hooked up to a ventilator that did more work for her than the one she had been on...

I will never know this side of life, why we were chosen to experience this...and yes, I believe we were "chosen for this" and not "afflicted by this". I can only look at the ways we have grown through this journey, and be thankful for that. I have a miracle each and every day to be thankful for, and a little girl who proves in every way that God is not limited by statistics or by human understanding!

And often, I think of Mary, holding her little baby, so in love with Him...but knowing, that baby belonged to God, and that she must trust Him. Her capacity as a human to percieve the future so limited, what else would she do?

I write this not because I claim to be an expert in Faith, or in trusting God. Despite our experience, I still have difficulty trusting God and His plans each day. And usually with the "little things". I am still reminding myself every day that if God carried me through THAT...he can get me through anything!

There was a framed verse that hung outside of Sarah's nursery before she came home...it reads"For I know the plans I have for you; plans to prosper you, plans to give you a future and a hope. -Jeremiah 29:11". It was a reminder to me each day that God does have a plan for my life...and for Sarah's life.

This time of year is a reminder of the great plans God has for us...if we make the choice to trust Him and accept Him into our lives.  It is a reminder of the great love He has for us... the love so great that makes Him worthy of our trust.

 

 

Blessings,

 

Dawn

 

 

 

 

Wow! Three years...I can't believe it! The little girl who at this very time three years ago was fighting for her life is now a wild unstoppable toddler with a non-stop vocabulary and boundless energy! One thing remains the same...she has a mind of her own!

I wouldn't know where to begin with all of the advances Sarah has made. The biggest of all though is with her eating. She has made amazing progress in the last couple of months, and she actually LIKES to eat (especially if it is ice cream!). Her feeding therapist is so impressed with her...and so are we! It is finally a reality that the removal of her G-tube is likely only months away. 

Sarah is one special little girl, and certainly proof that God DOES do miracles! We are very fortunate to see proof of that every day with her. I hope her story will continue to give hope to other familes who find themselves in the very place we did a few short years ago.

I realized suddenly today that it was about this time of year we learned that our precious little girl had CDH...something we had never before heard of.  I grabbed my journal to look back, and sure enough, it was this week we were given that news.  I can remember exactly what I was wearing that day of the Ultrasound, and that long walk down to meet with our Midwife to talk about what we had just been told.  Things went so fast following that...the visits to the high-risk Perinatologist, the multiple Ultrasounds, non-stress tests...and research...and the fight to have you born in the best facilities.  I can't think of anything to describe that whole experience except bittersweet.

There is a newer song by Gary Allan that I have frequently heard on the radio, with the words "Life ain't always beautiful, but it's a beautiful life"...a wonderful song that reminds me of this journey.  There are many, many wonderful families and healthcare professionals we have met...many miracle we have seen...that we would have missed if God had spared us this chapter in life.

This poem is a great description of what it is like to find out things aren't going to be "as planned"

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                                   Welcome to Holland     -  by Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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Someone had the wonderful thought to write a follow-up to that poem, that very much describes what the last few years have been like.  Would I change a thing?  Of course, as a mother, you would always make choices to spare your child any pain and suffering.  But yet, I know she will be stronger for it all, just as us.  As she gets older, I hope more and more that she will truly understand the meaning of those battle scars she has, and understand what a miracle she is, and I hope that she will tell her story, a story of God's love and healing.

 

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                                     Celebrating Holland - I'm Home!  by Cathy Anthony

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger, the pain and uncertainty. Inthose first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.

Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.

I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts.

I have come to love Holland and call it Home.

I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!

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As always, please keep CDH families, expecting, surviving, and with wings, in your prayers.  Our thoughts and love are with you all.

 

Dawn

 

 

Well, after a long hiatus from the online world I have returned to find tons of CDH parents with space on MSN, and of course have to join ranks!

I am hoping to be able to offer support to families dealing with the diagnosis of CDH, and to above all, offer hope.

Sarah's old site, www.caringbridge.org/mn/sarahcollins, contains old journal entries beginning shortly after her birth and chronicle her NICU stay.

Sarah's story is also featured on www.benotafraid.net, a website offering support to families facing a poor prenatal diagnosis.

 

Dawn