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.

Walk With Me Wednesday - Prayers

I'm not going to go into huge detail.. I don't want to embarrass anybody. But today I'm remembering a day ago last July. I met a friend, Chantelle, on the Internet. We had connected via an HLHS email loop and her family was in Spokane. They were new to the area, having just moved in October. Chantelle shared that her daughter Tatyana was having her Fontan (the 3rd HLHS surgery) at Sacred Heart Children's. I emailed asking, if all went well, if we could come up and meet them. (As it happens, we had a cardiologist appointment at the hospital two days after Taty's surgery.. which given how OFTEN we saw the cardiologist is NOT a huge surprise). When I got up there that first day, Chantelle wasn't there. I left a note. I'm pretty sure I missed her the second time too. But as they say, 3r time's a charm and it's a MEMORY! I probably won't forget even without recording it here...

At that point, Tatyana was having some complications. I can't remember the details but she still had chest tubes, they were worried about chyle thorax, etc. Chantelle had come in and for various legitimate circumstances, her "mama bear" was in full mode that morning. Having JUST met Chantelle (mere minutes, seconds maybe!), I got to witness, as she herself puts it, her "head spinning like Medusa". :) I could tell that she was just a mom who wanted the BEST for her child, like we all do. I was grateful I had left Seth at home with his dad and I was able to busy myself playing with baby London! But you know, I LOVE Chantelle. She's been a great friend and I'm blessed to have her in my life. And her family needs our prayers.

Tatyana, as I previously mentioned, has protein losing enteropathy. She's having a heart cath today. Chantelle took her in and had her admitted to PICU yesterday as she was incredibly weak and not eating. PLEASE pray for wisdom & discernment for the doctors, for wisdom & discernment for JT & Chantelle as they oversee their daughter's medical care. I got to talk to Chantelle for a bit last night and was DELIGHTED to hear how well she was doing emotionally. She was experiencing peace that she couldn't explain.. Please pray for that to continue and for their family to draw close to God during this difficult time.

Thanks, friends!

Because I can't resist sharing this cute picture of Seth - from that time frame (last July) - Seth and Tatyana's baby sister, London



One of my FAVORITE pics of Tatyana from her hospital stay last July

Walk with Me Wednesday - Snapshots..

Edited to add a "Cary snapshot" towards the bottom.




Oh, another Walk down Memory Lane with Lynnette! Yay! As usual, I"m late getting to it.. Better late than never, right?

Today, I've been thinking about snapshots. Not necessarily photo snapshots, but memory snapshots. Those "moments" literally, minutes in a day, that we think we'll capture in our memories for always. Of course, on our own, our feeble minds can't remember.. Heck, I'm lucky I can remember what I ate for breakfast! So, today I'm just going to share some random "snapshot moments."

All, yes all four, of our children have/or are currently, receiving speech therapy. Sean's been at the longest, starting when he was 2 and still getting some at school. Cary got a few years between age 1 and when he "graduated" late last year. Kayleigh got about six months of speech before Seth was born and has recently started up again at the school. Seth saw speech language pathologist (SLP) for oral issues, mostly feeding due to the g-tube.

I was recently reminded of a speech therapy session when Sean was about Kayleigh's age. He was working on the /k/ (hard k as in kitten or cake or carrot) sound. The SLP put a card in front of Sean and he said the word. They were flying through the list.. "Carrot" "cat" etc. A picture similar to this appeared on a card:

And Sean very earnestly stammered out:
"cu.. cu.. cu-MUFFIN" Years later, I'm still laughing about it!

I almost re-lived that moment today! Kayleigh has this tendency to drop her first vowels. She's currently working on s blends, st, sn, sk, etc. at the beginning of a word. The SLP reminds her to "let the air out of your tire" as Kayleigh says "sssssssssssss" at the beginning of a word. "Ssssssssnow" "Sssssssssssssski" etc. So today they're using cards. And Kayleigh's truckin' along and the image below appears on the card:



And Kayleigh stammers out:
"Sssssssssssssssssss Pee Yew!" (It sounded like "spew").

Cary "graduated" from speech therapy last fall. Our wonderful SLP saw him about once a month through November due to the "instability" in our home at the time. I was grateful. I couldn't think of a specific speech therapy to share but Cary offered up a similar example for me this evening! We were going to his 1st grade "musical" performance. I was asking him where he was standing on stage so I could sit in the right area etc. Cary says, "Oh, mom, I'm not going to be singing Twinkle, Twinkle, Little Star." Uh, okay? "I"m going to be paying the glockensmock."

The WHAT? Oh, GlockenSPIEL. Of course! And you do "smock" (smack) it..

Sometimes I forget that our kids don't always perceive the world the way we do. I'm glad. What joy those "mis-perceptions" bring to my life!!

Walk with me Wednesday - Down Memory Lane

So here it is. The post I've been putting off for over a week. (Two weeks?) It's probably gotten a WAY bigger build up than it deserves. One of the things I'm learning is that sharing the memories of what happened with Seth, the good and the bad, accomplishes a couple of different things for me. It validates and affirms those things happening (especially the good). Some of the negative gets blown up in my head and sharing it helps me to keep it in perspective.. and validates it as well. I shared a negative memory in an email today and was blessed to be encouraged and discover I was not alone in my feelings. But today's memory is a POSITIVE.

I want to share about the last few minutes we spent with Seth. Not before he died but the last time we had with the SETH we had come to know and love during the time we had him at home. Seth was admitted to the hospital the night before his second surgery. Leland and I, taking advantage of the "free" babysitting (my mom was at our house with our three "big" kids and Seth was well cared for by the nurses), decided to have dinner out. A belated birthday dinner for me and an early birthday dinner for Leland. When we got back to the hospital, a couple of our friends, Karen & Cathey, had come up to see us and we're cuddling on Seth. I was glad that he'd had that time and had been loved upon by others in our absence! Here's a picture of Karen & Seth. Can't you just see how much he adored her? Mind you, he knew her voice, she screamed at my belly for MONTHS! She loved him too.



Leland and I hung out with our baby boy for awhile and headed home. The next morning we were up at the hospital early to make sure we saw Seth before surgery. We followed him down to surgery in the elevator.

Once we arrived in the surgery triage area, we had quite a few minutes to wait. During that time, I held Seth. I did that thing you do with babies, you know, when you hold them up facing you? Seth was sitting on my lap. I held him under his arms (knowing I wouldn't be able to do that for weeks post op due to his sternum being opened) and spent LOTS of time kissing him on the neck and under his chin. You know, when you're holding a baby, facing you, and you kiss him on that spot just under his jaw? I spent lots of time doing THAT. Seth was JUST starting to figure out expressions. He wasn't quite to giggling but he did this squealing thing, more like when you inhale rapidly with your mouth open and it makes a squeaking noise. So I'm kissing his neck, he's squeaking, we're giggling at each other. It's one of those moments that I keep telling myself I'm going to remember forever. So often at home I didn't take the time to do that. I was so busy with Seth's needs and the other kids, etc. I'm glad that I made a point to do something sweet and memorable while we were waiting..

I don't have pics of ME doing that but I do have my mom demonstrating the above described technique. (Just in case you haven't figured out what I'm talking about). You can see the joy in Seth's face. He LOVED to be kissed upon like that.



Shortly after those sweet moments, the anesthesiologist came to get Seth. His daddy and I told him we loved him and gave him goodbye kisses.. I remember starting to cry and saying "I know, he'll be fine but I'm his mom and I'm allowed to be emotional." Of course, he wasn't fine, ever again after that. As much as we miss him, he's more than fine now in Heaven and we're left to cherish and be grateful for the special moments we DO have.

To read other people's precious memories, check out Lynnette's blog, "Dancing Barefoot on weathered ground".

Baby Smiles - Walk with Me Wednesday

Welcome to my first ever, THE first ever, Walk with me Wednesday - Down Memory Lane. I LOVE the fact that Lynnette has decided to do this and open it up to all of us. I am a terrible historian, a lousy "record-keeper". I wish I were better at it, but I'm too much of a perfectionist. So, I'm THRILLED to have the opportunity (and excuse!) to do it here.

My first memory is a memory of mine but it also illustrates what a gift siblings are to each other. All of my babies smiled at about the "average" time, between 6 & 8 weeks of age. I remember Sean's very first baby smile. I was holding him on my lap, facing me. His little head in my hands, I was chatting away to him and he SMILED at me. I remember that giddy feeling, like when you had a crush in high school and the boy you like smiled at you! Sean was a very serious baby, we had to work hard for those smiles so they were all precious.

Three and a half years later, along came Cary. Sean was a big brother! And a great one, he was SO sweet to HIS "baby Cawee". It was obvious that Cary loved him too. Christmas Eve, 2001, I was holding Cary on my lap, he was facing sideways. Sean got up and came in the living room, walked over to greet us. He was SO animated with his baby brother! AND... Cary smiled at Sean! Sean was the recipient of Cary's very first smile! Cary was a much smilier baby than Sean, he handed them out like candy. But all those smiles were still precious and Sean got the very first one!

Almost four years later, along came Kayleigh! And how do you suppose HER first smile played out? She gave it to Cary! (You saw that one coming didn't you? Kayleigh was laying on her back on the couch. Cary came along to chat with her and pretty soon Cary's shrieking "Her smiled at me, her smiled at ME".. Now, I didn't witness it, but I did see smiles later that day and I believe it happened.

A mere two years later, here's baby Seth! One day, very shortly after coming home from the hospital, I was sitting on the sofa with Kayleigh and Seth. (I suspect the big boys were at school). We were just hanging out, having some cuddle time. Kayleigh was talking to Seth a bit. (And maybe he could understand her, I certainly couldn't at that point!). All of a sudden, Seth's face lit up. His eyes sparkled and he flashed a large gummy smile, RIGHT at Kayleigh! Now, in all fairness, Kayleigh was not quite as thrilled as her brothers had been when they received first smiles.. I suspect she didn't quite understand the importance of the moment. I was thrilled.. And excited that our family tradition continued. I think it's pretty darn special that all of my babies saved their first smiles for their next closest siblings. Something I always want to remember....

Click on the above button to check out more Walk with Me Wednesday Memories. (If I get a chance I'll upload photos later)