21 September 2010

Learning Curve

Notebook at the ready, James and I have been busy asking questions and taking notes, talking to both doctors and nurses about Ewan's condition and care. Truth be told, James is far better at the whole question-asking thing than I am. When doctors ask if I have any questions, I tend to get a blank look on my face and then that's when they start to explain what they think I should know.

Holding Ewan for the first time since his birth :: Sept 19

All in all, it is still the case that Ewan is doing well for a baby with as severe a case of Tetralogy of Fallot as he has. His doctors and nurses both say he's got a strong will (wonder where he gets that from?) and is pretty fierce. None of this is surprising to me, of course. :o)

You don't need to be a mama to get this :: Sept 19

When he first arrived in the NICU where we delivered, he was breathing well on his own and overall, had excellent stats and color. They put him on the prostaglandin (PGE) to keep the PDA open. The PDA is the vessel that is normally open in utero in all babies, but closes a few days after birth. This caused him to stop breathing a few times and so prior to his transfer, they had to intubate him (as hard as it is to see, we appreciate this since not breathing is obviously not something we want to mess with). The cardiology team at Children's learned through a series of scans that the PDA wasn't making a significant contribution to the overall bloodflow and oxygenation, and so they made the determination to wean him off the PGE (this happened yesterday at about 11 am). They attempted an extubation shortly after, but he experienced some significant pauses in breathing again, so they will attempt it again today to see how he handles it. He is already initiating most of his own breaths, so this is encouraging.

Sept 19

Sept 20
On Wednesday, he goes to the Cath Lab where they will take a catheter and be able to determine very specifically the makeup of his anatomy. They already know that he has a few distinct collateral arteries going to his lungs, and this procedure should determine how big they are and what kind of work they're doing. This procedure will play a significant part in determining the course of treatment.

Fingers!! :: Sept 20

In other news, he also got a blood transfusion to keep his red blood cells up (we like those oxygen-carrying red blood cells!!) and he got his first feeding, which we were there to see. So awesome! I've been pumping every three hours (with a lapse or two for sleep) since the day he was born, and it was just so awesome to see that even though he's not inside me anymore, I can do my part to nurture and protect him.

First feeding :: Sept 20

I always knew it would be hard to leave him there: to see him hooked up to the tubes and wires, to need help and permission to be able to hold him. Even though I know this sweet boy came from me, even though I was so very present for his arrival, I look at him and have a hard time believing he is ours. I look at him and can hardly believe that God entrusted him to us as his parents: this sweet, eternal soul. The feeling of being this child's mother was already so overwhelming to me when I was pregnant (in a good way, as in: I've been honored with this child), and is a thousand fold more so now.

I know days are coming when we have big decisions ahead, and it's no wonder that we're tired. I haven't gotten any significant stretches of sleep since giving birth and of course, there's the emotional side to all of this. So I'm going to go back to bed for a few more winks, and then go and see my baby.

Sept 20
Much love and many thanks to Team Ewan!! We love you -- please know that we feel your love and prayers, and that even if we're not responding right away (or at all), we're getting all your comments, notes, and lines of encouragement. It is the hyperbole of understatement to say that means a lot.

All snuggled up :: Sept 20

Much love,
the mama

Tired mama :: Sept 20


christianne said...

You are so beautiful and amazing.

I love every snatch of update you share with us. It's such an honor to be taking along the journey with you.

Oh, you are such a strong fighter woman, and I love and cheer on the fierce mama bear in you ... as well as the tender mama bear side too. (That picture of you crying as you held him in your arms tugged at my heart!!)

I love you, mama bear. Rooting and cheering and praying for you from the other side of the country, but my heart is right there with you.


christianne said...

PS: I love the nom nom nom on Ewan's toes part, too! :)

Unknown said...

Your way with words is amazing...
I am praying very hard for your little monkey. (Who is absolutely gorgeous btw!) I have three kiddos, and I can't imagine having the strength to go through what you are going through. You are an amazing momma I tell you!!

Continuing to pray VERY hard for Ewan!

Anonymous said...

Thank you for updating!

Ewan looks AMAZING!! I know it's so hard to see your tiny, fragile child in the NICU but the nurses there are amazing.

Caths are also scary (both kids have had one) but they are really routine (at the childrens hospital here) and SO much less invasive than OHS.

We are praying for Ewan and YOU!

Caleb said...

Thanks for taking the time to keep all of us posted! It's good to be able to read about what's going on and see the pictures. I love the foot one! It looks like he has good color and a great head of hair! Love you guys!!!

the nervous mom said...

Gosh I love your blog. For a mama who's had barely any sleep and going through so much, you write so beautifully. And may I also say, Ewan is quite beautiful too. *heart hugs*

Peachy said...

Just wanted you to know that prayers continue. He is gorgeous and a perfect child of God.

Anonymous said...

What I want to know is how did you look so beautiful moments after giving birth?? That first family photo is absolutely stunning in every way!

Ewan looks fabulous....I am not seeing a "blue" tint to him at all. This is a good thing. Prayers are being offered up that the cath goes as planned so the doctors have a better idea of how to mend his heart.

So glad to see that you were able to hold him....how precious is that? Amazingly awesome, huh?

I know it is hard, but try and rest - that is the BEST thing you can do for Ewan right now.

Shannon Egan

Stephanie S said...

I am praying for you guys. He is adorable. My heart is too full to say more. Thank you for sharing your journey with us.

Nadine said...

Thanks for the update girlie!!! He's soooo cute!!!! Can't wait to find out the treatment plan and all! Fingers crossed! GOOD NEWS!!!!!!Praying hard for the little man! Much love to you three!!! <3

SimplyDarlene said...

We've not yet met. I am Darlene (A Simple Country Girl). Sweet Claire of HCB shared about you and yours.

I am with you in thought and prayer. My son was born with 3 holes in his heart...I know a little itty-bitty part of such things...although nothing compared to what you are in right now.

That baby-toes image says so, so much. But the one with you holding him for the first time...no words worth saying.

May God shine His love and strength and blessings and peace upon you all.

Katie said...

I'm crying right now. What beautiful pictures, they bring so many memories/feelings back. You are handling this so well, so proud of you! I'm so happy you got to finally hold him and that picture says it all. Amazing. We're praying for Ewan, you and James as well as the awesome medical team at Children's who we love and adore. Love and hugs to you Kristen!!!

terri said...

he so beautiful and so are you. i don't know why, but i was thinking about how cool it is that someday ewan will be able to read all of these things you've written and see the pictures and know how amazing you are and how fortunate he is to have such wonderful parents. lucky kid.

The Hansen Family said...

I'm crying reading this. My heart swells for you guys. May the Lord continue to uphold you in a special way & help precious Ewan in ways only He knows how to. You're not alone. Love, Ginny

roseruf said...

It is really wonderful to see he is so strong! He have a lovely big team around him, so much love is always a hug help!!
We are far away, but thanks to his wonderful mother that is doing all this incredible effort, we can now send to him our best wishes, hoping just a little more love can help.
A big hug for all of you, beautiful family.

Jen said...

These pictures are so precious! I loved finally getting to "meet" precious Ewan. He is soooo snuggly and sweet! :) I am right there with you on everything you described- you love them more than you can even comprehend. And so true- how blessed are we to have been trusted by God to be heart parents? A pretty special honor.

We are saying lots of prayers for your sweet family!

Heart Hugs!
Jen, Craig & Andrew

In This Wonderful Life said...

he is beautiful! hang in there..we are saying lots of prayers!

Shay said...

Kirsten, my friend Becky has a 16 year old son dealing with "LEMS", a neuro-muscular disease and I am regularly praying for him and keeping up with the Facebook Group "Pray for Daniel". The other day Becky posted a quote from John Piper and I wanted to share it with you. praying God uses it to touch your heart in the ways you need to be touched.... "regarding an “all or nothing” view of praying where John Piper asks, “In praying for healing should we not be encouraged to break the ‘all or nothing’ habit and pray that today something powerful be done by God in the body of our loved one? And tomorrow something more? And the next day something more? If Jesus touched a man twice, should we not expect to touch the sick often before they are healed?”

“I am finding it helpful to see my prayers as God’s appointed injections of his healing power. And like many antibiotics, the dosage (of prayer) must be continued over time. Each prayer makes its contribution. An antibiotic pill is not an ‘all or nothing’ treatment. You keep on taking them ‘till the bottle is empty. And each prayer carries a measure of divine power—sometimes more, sometimes less, but always effecting ‘something’ good if prayed in faith.”

“So don’t let an ‘all or nothing’ mentality impede your perseverance. Pray for total healing and total salvation. But don’t prejudge God’s timing. Until the total work is done keep praying that God do ‘something’ today to help, and believe that he will. Always pray and don’t lose heart.” (The "All or Nothing" Impediment to Prayer, Piper)

Kirsten, you, James, and Ewan are on my mind, heart and in my prayers. I love reading your updates and seeing the precious photos. you are a fierce momma bear and Ewan is blessed to have you and James as his parents. and you are so beautiful, even when you are tired! love you lots!

Baby Hung said...

Thanks for sharing your story and congratulations on a new baby. We are still praying for you and he looks precious. Good job as a new mommy so far!!

Niki said...

I just found your blog randomly, and saw that you are in Seattle. My son had his open heart surgery there in April. He was two weeks old. It is a wonderful hospital, as I'm sure you've found out, and you are in the best of care. I know how hard it is to see your baby like that...I really do.
My baby boy is doing so well though, you would never guess how sick he was.
Take care,
A fellow heart mommy,