23 September 2010

The day before the BIG day (we think)

Note: You can click on any of the photos below to view a larger image.

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Today was a full day, carrying within it an extraordinary range of emotion and a lot of information, so I hope you don't mind if I keep it somewhat brief ... we're so exhausted, and tomorrow is going to be a big day not only emotionally, but for our own preparation for Ewan's medical care, so we definitely need our rest.


Shortly after we arrived at Ewan's room at the NICU, I got to hold that sweet baby again. He was just on the canula for breathing support and was free of the CPAP which I know he absolutely hated. I held him for an hour and a half -- maybe more and I think we both enjoyed it. Some of the meds they're giving him can make him a bit cranky (and we also learned that he is a boy who does not like to be wet), but I kicked into fulll mama mode: rocking, shushing, stroking his hair, rubbing his hand, kissing his sweet head. I could have done that all day.


For the most part, he stayed calm. And when he wasn't, I loved on him all the more.


Later in the afternoon, we met with the doctor who will be performing the cath lab procedure that is currently scheduled for tomorrow. He sat down with us for about an hour or so to explain to us the procedure, its importance, and what they're looking for. When we pulled out our notebook, he said he would write everything down he was explaining and then give it to us.


We went over the basics of Tetralogy of Fallot -- he explained the variations within ToF with Pulmonary Atresia, and within that all the different types of possibilities for what they could see, some far more severe than others. I'm not going to go into the technical details here, but with Ewan's specific make up, there appear to be a few possibilities, one definitely more desirable than the others -- each with varying possible outcomes. This catheter procedure is really the only way to tell.


As he explained it, the cath lab procedure is all about building a road map of Ewan's heart. What they see tomorrow will tell them where they need to go and what they need to do. Tomorrow's procedure will give a team of twenty or so pediatric cardiologists and surgeons who will use that information to discuss Ewan's specific case on Friday or Monday, and together determine an appropriate course of action.


We really appreciated how incredibly straightforward and understanding this doctor was with us -- we know this can't be an easy part of his job to talk to parents as honestly as he did about some of the possible grim outcomes of their children's conditions. He didn't pull any punches, and made it clear that he would meet with us immediately after the procedure was completed. He also said they as doctors don't perform any procedure on a child that they wouldn't be willing to perform on their own children -- and if that there was a hospital or a doctor that could do it better, that's where Ewan would go.


Some other information about the cath lab: Ewan will be sedated while the catheter procedure is done. It is expected that it will take about two hours, and the doctor will meet with us immediately after. But it is only after the team of pediatric cardiologists and surgeons meet that we will know what kind of surgery we can expect for Ewan, and roughly when it needs to happen.


It was very hard on my heart to hear all this. I look at that sweet, adorable baby and wonder how in the world something could be so wrong with him. I want to use my mama magic to make it all go away --  instead I have to trust his care to others, hand him over for things that irritate him, leave him at night when all I want to do is cuddle up beside him. His broken heart is at the center of mine.


Before we left, I asked James to baptize him. The risk of tomorrow's procedure causing death is very minuscule (0.03%), but I didn't want to get to the point where Ewan was going in for something big and we hadn't done that yet. It's definitely a comfort.


As I said: tomorrow is a big day. Please pray for us. If that's not your particular bent, happy thoughts, good vibes, and well wishes all accepted as well. It must be said: your prayers are truly carrying us. This is such a poignant and emotional experience -- I gave birth less than a week ago, and it will be some time before I'm recovered from that physically. We're both incredibly sleep deprived. We have a baby in the NICU. This is our first time doing any of it, and there isn't any road map for us as to how. Your prayers are carrying us along -- I know myself well enough that we aren't making it by our own strength. Not by any stretch.


In short, we (all three of us) need you.

The papa bear needs you.


The baby bear needs you.


The mama needs you.


Lord, have mercy on us all.

30 comments:

tea said...

Will be praying so much for you all. Your family is beautiful and you're such a good mama.
(((Love to you, Kirsten.)))

I pray that Jesus guides the doctors in all they do.

Nonny Baby said...

We will lift up your precious family to the Great Physician and ask that He guides the hands of the earthly ones He's put in charge of the care of Ewan. We will ask for His perfect wisdom to empower the minds of the doctors and His perfect grace and mercy to cover your family, not only tomorrow, but for every day of this journey.

Love to you all.

Summer, Jim & the Crew

madeforjoy said...

Lord, in your mercy, hear our prayers. Blessings, Kirsten!

deb said...

Kiss on Ewan's sweet little forehead for me.

Prayering ,

deb

Amber said...

Praying for you all ... lots.

Stefenie said...

Beautiful pictures!!

Saying many prayers for his cath. I know how very scary it can be sending your baby in for one of those. I remember the first one Logan had I was a nervous wreck and cried the ENTIRE time.

I have faith that Ewan will sail right through it! Praying that the docs come up with the best plan for him! Hang in there!!

Hope's Blog said...

You all have been and will remain in my thoughts and prayers. I know it is scary to send your little one in for a cath. I know it will give them a good plan for him.

Tara said...

Many prayers for you today. I know it's hard to navigate all this, but you are following the right guide with the Lord! Praying that the cath goes smoothly and for God to give the doctors the wisdom and knowledge they need to develop a plan for Ewan's heart.

Nikki said...

We are praying for you!!! Your strength is amazing! Caths are scary the first time but they are really, surprisingly safe. Please update when you can!!

Wendy said...

All of you are in my thoughts and prayers...He is PRECIOUS!!

Peachy said...

Lord have mercy. Hear our prayer.

Sarah Marie said...

Amen, amen. Lord, hear our prayers for little Ewan and his great big heart. Watch over him and his family as he grows. May all that they do glorify your name.

Sarah said...

Praying.

Danielle said...

Praying constantly for the three of you today and for the guidance and wisdom of Ewan's doctors as they perform his cath. Ewan is precious and you are wonderful parents! Sending thoughts, prayers and love your way...

Baby Hung said...

Continual prayer for you to yield your control over to God and to lift your worries to him. We pray for a successful surgery and a peaceful heart for you both as the Holy Spirit will be with you and Ewan.

Keep us posted as you always do :)

ANewKindOfPerfect said...

Praying that the cath goes smoothly and gives the doctors a clear picture of what is going on with precious Ewan's heart. Praying that it shows the best possible thing with the best outcome available. I pray for your hearts to feel peace and strength while he is in his procedure and as you wait (impatiently and anxiously!) for their decisions.

Ewan is absolutely adorable. It is so hard to see these little ones looking so beautiful and perfect, and imagine such big problems with their insides.

Lisa said...

praying for all of you today...

Jodi said...

Oh I am praying... my children too. I've instructed them to pray every time Baby Ewan comes to their minds... which is often! We will definitely be praying at 1:00. Hugs to you.

Emily (Laundry and Lullabies) said...

Praying, Kirsten.

Melissa said...

Thinking of you and baby Ewan... Hoping they get the "map" they need to mend Ewan's heart...

Melissa
www.yesallfivearemine.blogspot.com

Rachel said...

Praying for you that the cath comes back with positive news for Ewan.

Love from another CHD mum

Rachel
xx

Carolina Carters said...

Praying for ALL of you...especially that sweet boy! The pictures are beautiful!

christianne said...

Oh, I can't believe I'm just now getting over here to read this. It's been so good to keep tabs on everything through FB today, but it wasn't until now that I was able to read this post.

This morning I sat at my desk and flipped through all 150 photos of you and Ewan in the FB album. When I got to these that you'd taken yesterday, my eyes misted up several times and my breath caught in my throat.

You are so utterly beautiful, and Ewan is so utterly precious. It's so clear how much you love him and are the only mama for him, ever.

I love the photos where you are staring intently at him, and then also the ones where the two of you are staring intently at one another.

Been praying for you today, of course. Can't wait to hear the news of the cath lab soon.

xoxo,
Christianne

Jen said...

I've been thinking of you guys all day and wondering how things went today! Praying that everything went perfectly and you are all able to rest and now know the plan for sweet Ewan. He is just an absolute DOLL! I love the cuddly, sweet pictures of him. I just had the chance to read your birth story tonight and I was amazed at how similar things happened for you and me- esp the not having anything with you part! We didn't have a thing, not even a camera. :( Sounds like things went well though. Many prayers answered!

Continued prayers for you all...

Jen

Melissa Elsner said...

Praying lots! Right now I think you are probably in the meeting. God is doing great things through all of this!

L.L. Barkat said...

Strength to you, and beauty in every moment, even the hard ones, these hard ones.

Danielle said...

Following you on twitter about Ewan's cath lab and Emergency surgery...my heart just dropped! Lifting you all up in prayer right now!!

Angie said...

Praying for you big time!!

Jennifer @ Getting Down With Jesus said...

You and yours are at the top of my heart, spilling over the edges. I'm praying, praying.

Adelani Aderemi said...

May the Good Lord be with Ewan and all of you. I will be praying for you.
Children are heritage of the Lord and the fruit of the womb a gift. The Lord will perfect what He had started in your family and in Ewan's life.
I am deeply touched by your marternal love.