Wednesday, June 17, 2009

WwMW - Walking with You - First Steps

Another Walk With Me Wednesday that I'm getting up late. Some day I will get ahead of this blogging meme thing. Some day. In the meantime, since this is a memory, I'm going to combine Lynnette's Walk With Me, with Sufficient Grace's Walking With You. Kelly at Sufficient Grace Ministries is starting a place where moms who have lost babies can share the steps of their journeys.

For the first "Walking with You", Kelly suggested that we share the beginning of our journey. The moment, day, when we knew we would be walking this horrendous path. Our moments came in stages, for lack of a better word. Because Seth was born with a congenital heart defect and lived with us for six months, we walked a couple of different journeys.

But it really began on October 2, 2007. It was a Tuesday. We were just sitting down to eat and the phone rang. Leland answered and handed me the phone, it was my ob. The previous week we had done a "nuchal fold" ultrasound; he was calling with the results. I knew immediately that this was not good news and went downstairs with the phone. At that point, the information was limited to "Something is wrong with the baby and we can't say for sure what it is," none of the options were good. The best diagnosis at the time would have been Down Syndrome. Other possibilities were considered "incompatible with life", trisomy 18;13, for example. That was the first steps on the difficult path we would walk with Seth. We had no idea what we were in for but we knew something was coming..

We were pretty clear, from the beginning, that termination would NOT be an option for us, regardless of diagnosis. God had given us this baby and we would accept and love him regardless of his health. Our 18 week ultrasound was done by high-risk perinatologists. We were referred to a genetic counselor. We had some blood work done which had pretty much ruled out the scary trisomies and were led to believe we were most likely looking at Down syndrome. We could deal with that. At the 18 week ultrasound, we were informed that they couldn't get a good view of the baby's heart and we were referred to a pediatric cardiologist. That appointment was set up for about 22-24 weeks. We were not in a rush because we were not going to terminate and the feeliing was that we should wait until the baby's heart was big enough that the echo would be a bit more definitive.

And we prayed. And asked people to pray. And pressed in for a miracle. And believed. I was CONVINCED that we would walk out of that office having been told our baby had a perfect heart. The echo was long and in the middle I had to walk around because baby shifted positions. Finally the cardiologist came in, reviewed the films, and said she would talk to us in her office. She was very kind but as long as I live I will never forget hearing her say "This is probably one of the most serious things we could be looking at." (And I looked heavenward, "What? This is NOT the good news I was expecting to hear"). "Your baby has a defect known as Hypoplastic Left Heart Syndrome." I had done some research when we didn't know what we were dealing with, and I had come across HLHS, and tears IMMEDIATELY sprang to my eyes. And THAT began our journey as "heart parents." (Incidentally, the cardiologists were VERY reassuring and we were quite optimistic most of our pregnancy and Seth's time with us). But being "heart parents" is not what this is about. (And that portion of the road did have it's own bumps & potholes!)

So fast forward... Seth had his 2nd surgery, the Glenn, on Sept. 11, 2008. Almost a week later, Sept. 17 was probably the beginning of our grief journey. We were home,I had even gone to bed early and the phone rang. Leland burst into our bedroom; "Get up, we gotta go, that was the hospital".. I ran down and told my mom and we rushed to the hospital. Seth had coded. We didn't realize though, the road that would put us on. Fast forward a couple more weeks, October 2, 2008. Seth is still intubated, unresponsive, beginning to show posturing. During our care conference, one of the doctors tells us that he believes Seth could "have another code event within the next 24 hours." And prayerfully, Leland and I decide to not continue with any additional invasive procedures. Seth is put on comfort care. We loved that sweet boy for the next ten days and on the morning of October 12, Seth slipped quietly from my arms into the arms of Jesus.

When I look back, I can not believe how much my life has changed. The irony of recieving the intial phone call and the news that our baby was not likely to get better on the same day, a year apart, is not lost on me. As you can see, our journey did not have a definitive beginning to the road we're on now. We were so blessed to have the time we did with Seth.

I know that other HLHS angel moms occasionally find their way to my blog and I belong to a yahoo group that has been a helpful resource in connecting me with other moms - HLHS Angels
I also found comfort in several websites, Lynnette Kraft's blog, book and support website. I found Emily's site, Stepping Stones helpful as well.

In addition, Leland and I attended a support group called GriefShare. I found it helpful enough to attend twice!

Kelly also suggested we close with a prayer request. I just continue to pray for God to turn my mourning into dancing. I am grateful that His mercies are new every morning and I seek restoration of joy! I also would ask for prayers for the hearts of my "big kids" as all of this has been difficult for them as well and I would hate to see it negatively affect their relationship with God.

Writing this out IS cathartic and I obviously enjoyed it enough to get very long-winded. Thanks for reading. I think this "Walking with You" will be an nteresting journey as well.


Denise said...

Beyond lovely.

Sally-Ann said...

Thank you for sharing your journey. I think it is good to write our experiences in life - the good, the bad and the in-between!

Kelly @ The Beauty of Sufficient Grace said...

Kathryn...thank so much for sharing the first steps on your journey with sweet Seth. Your family has really endured so much...I'm so sorry for the sorrow and the struggles. And so grateful with you for the time you had with your precious boy. And grateful that he is no longer suffering, but in the arms of Jesus. I will definitely be in prayer for your family as you continue to grieve and heal. Praying for God's continued comfort and sufficient grace for every step of this journey. And...even specifically for joy to be restored in your family...for a season of abundant joy. I hope you will continue to join us when you are able and that many will find comfort as they read that they are not walking this path alone. I decided to do Walking With You every week...each Thursday...instead of monthly. That way, we will be in a routine and not "forget" that its coming...and more people will have the opportunity to join in with us. Next Thursday, we will be writing about continuing a difficult pregnancy...waiting to meet our baby. Thank you again for sharing these pieces of your journey and your heart with us. And thank you for allowing us to walk with you.

In His Grace,
Kelly Gerken
Sufficient Grace Ministries

Holly said...

Thank you so much for sharing! I've read about HLHS before but got a really good look into when I read Waiting with Gabriel after we got Carleigh's diagnosis of anencephaly.

I also met a mom whose daughter Cora had HLHS. They had decided on the 3 surgeries but during Cora's cath there were some problems and they ended up choosing comfort care for her. We were in the same due date group on Cafemom. I told Cora's mom that I wish that I could've given Cora Carleigh's heart but it wasn't possible.

What a blessing to have those wonderful 6 months with Seth. I imagine it had to be nervewracking wonder what was wrong with him in the beginning. Not knowing what it was but that it was something...

God bless you! (((hugs)))

Leslie said...

I'm so glad you're joining us in this walk! I started a second blog to record my journey.

Blessings and Hugs,

Lynnette Kraft said...

Your post brought back my own memories. As you read in my book, we prayed for a miracle too and truly hoped we'd get that. In fact, we hoped over and over again that Anna's heart would heal...but it didn't.

I just prayed for you and want to remind you that God WILL make you dance again.


Lynnette Kraft said...

By the way, thank you for sharing that journey with us - I know how hard that was to do.

Steph said...

What a hard story to write, but I'm glad you did. I think it does help to get it out that way sometimes. Your words brought back many memories for me. We didn't find out about Annika's heart problems until after she was born, and didn't find out the true severity until she was about 8 months old. But I had those same feelings of praying for a miracle during the time we were waiting for the cath to confirm what the cardiologist believed, and then having to accept that that particular miracle wasn't in the plan for her.

Interesting to read about posturing--I haven't heard that term, but after Annika's stroke, her feet were pointed down like that, and that was what led them to believe there had been brain damage and to discover the stroke. Sigh. . . hard memories, still.

But it will get better. New good memories will come and bring new, different joy to your heart.