28 September 2010

Contractions

Ever since this journey at the Children's Hospital really started for us, I have been comparing it to labor: how the valleys on this roller coaster are like the pain of contractions, and how the peaks are like the rests in between. I remember thinking when we got here that if I could give birth and endure back labor without any medication, how I could do anything, even if it felt impossible. I remembered how I kept thinking labor was impossible and how I did it -- how we got through it. And how we would get through this, too.

We've had a good few days of rest between contractions -- the first big contraction of emergency surgery and that long, long night and the rest in between: days of boring, days of ECMO being dialed down, days where Ewan was doing well, nights where we could enjoy his wakefulness.

Another contraction came today.

They did the first trial off ECMO today. Ewan didn't handle it well. I held my breath and my heart rate escalated as I watched his stats drop: his heart rate, his blood pressure, his O2 saturation levels. The numbers dipped to scary levels. It wasn't time to take him off. An echo was ordered, as was another cath lab procedure.

When they started it up again, his heart rate was up but his color wasn't coming back. They had to switch out the entire ECMO machine. When they did an echo later, they found that some pressure was built up around his heart creating resistance. Apparently, this is common with ECMO. This meant another surgery to fix the pressure around his heart. You can imagine how this felt -- the last time we sent my baby off to cath lab, it was quickly followed by emergency surgery and a very long night of wondering if we would ever see him alive again.

The day today was one big contraction.

In surgery today, they found that there was some blood built up around Ewan's heart, and this was creating resistance. They also found that he was bleeding from one of the canulas inserted into the heart that is connected to the ECMO machine. These have been repaired now and his heart rate is in a beautiful place. His pressures are higher since they have to run the ECMO machine at a higher rate to prevent clotting so they can reinsert one of the catheters that came out (see what a terrible balancing act this all is?!). This pressure build-up could very well be at least part of the reason why today's first trial off of ECMO didn't go so well. We're hoping to target another possible reason tomorrow in the cath lab.

In cath lab, they're going in to see exactly how blood is flowing through the heart. Since Ewan is already on ECMO, there's not nearly the risk of him going in this time as there was the first time. While they're in there, they're going to do another trial off so they can see exactly where any hold-up may be: to see if there's any additional narrowing in the arteries. If there is, they can place little stents that will hold the arteries open and help them expand to allow for better blood flow. This could be something else that will help us get off of ECMO sooner.

ECMO is all well and good for a time, but it's very important to note that its usefulness is very limited and tends to decline over a short period of time (just a couple of weeks). Ewan has been doing fine on ECMO since his surgery, but the sooner we can safely get him off of this machine, the better. Using ECMO has its own inherent risks that shouldn't be sneezed at, including the formation of clots when the machine is slowed down (or when they wean him down), and the reaction of the body to the plastics used in the machine. Getting him off ECMO is Goal #1. It's keeping him alive now (thank you, Jesus!), but we cannot count on this for long. We need for his heart to be able to take over, and we need for enough blood to be moving through the arteries and going to the lungs.

So we're hoping and praying for the following things:
  • That today's surgery and tomorrow's cath lab will ensure that Ewan has all the best chances of being able to move blood to the lungs.
  • That we can get him safely off of ECMO as soon as possible.
I am hoping the contraction is easing for now. Today is drawing to a close and Ewan is resting safely for now. Tomorrow is another big day -- our doctors are very hopeful. As I head to sleep, I rest safely in their assurance, and the knowledge that we are loved, prayed for, and watched over. God bless baby Ewan, and all those who love and pray for him.

20 comments:

Kristine said...

I hope you're able to rest in between the contractions. Every day, I learn from Ewan and his wonderful momma. <3

Shay said...

what a great analogy! I admire your strength and faith in all of this...God definitely has you all in His hands...praying, praying, praying! praying you rest well and for wisdom and revelation tomorrow as Ewan goes into the cath lab. love you lots!

Anonymous said...

How you manage to write so well through this is amazing to me. I believe sharing your thoughts is helping us all to pray directly to his needs, and yours. THANK YOU for continuing to include us all and allow us to support your family on this journey. I imagine it is quite difficult. I check every chance I can for your updates as I can't stop thinking about you all. Here's to a new day tomorrow filled with blessings. Hugs, Sarah V.

Karmen Madan said...

laying hands on his sweet little heart and praying w/you and for you. He is constantly on my mind and in my prayers. I think that through this process he has taken part of my heart, may it help his heart beat a little bit stronger. Pleas Lord Jesus make it so! Amen!

Jamie said...

I will pray for peace during this time. They say those contractions make us stronger. If only they knew how many times I cried out for some relief! God chooses to bless us in ways that we don't always understand, but oh how Ewan is such an amazing little blessing!

Rachel Elizabeth said...

Holding my baby close and thinking of your beautiful boy. Praying for the first time in a heck of a long time.

Nadine said...

Praying for you my friend! Hope you get some rest!

Molly said...

Praying for strength and peace for you guys and for baby Ewan... hang in there! The peaks are coming :)

Hope's Blog said...

The journey does seem like a contraction...never thought of that comparison, but it is perfect. I really hope you are able to rest a little in between. I am keeping Ewan in my constant thoughts and prayers. ECMO is a wonderful medical technology, but I am praying they can figure out what is happening and get him off the ECMO.

Maryann said...

I'm praying for Ewan. Keep leaning on God and your husband.

Anonymous said...

Just wanted to share a favorite verse that I have used during my son, Kaston's hospitalizations. It's Psalm 147:3 "He heals the brokenhearted and binds up their wounds."

Please know that we are praying for baby Ewan and your family, that he be wrapped in the healing hands of God and that He bring peace, understanding and patience with mom & dad, that the medical team know the exact course of treatment for baby Ewan, that he remain free from infection and human error, that the machines that are keeping him alive perform the exact way that they are intended and that they provide Ewan's body with the rest that it needs.
Many Blessings!
Jamie
Amarillo, TX
snydertime.wordpress.com

Carlo said...

I'll be praying for you guys!

Amy said...

I just found your story, and will be praying for Ewan. Thank you for sharing his story and for posting updates. Your journey is all too familiar - starting with the devastating news at the 20wk ultrasound, and doctors recommending abortion. We, too, have a miracle "heart kid," and have been down the bumpy road of recovery. We know that recovery is not always smooth, and there are bumps, set-backs, and difficult days. Hang in there. If you want to see a kid who's amazed every doctor, beaten all the odds, visit our blog at http://babymatthew.wordpress.com. Be sure to read the "about Matthew" page to see our story. You have our prayers - this is the hard part, and it only gets better and better from here.

Stefenie said...

I agree that this journey can most definitely be compared to labor...the highs and the lows. Almost four years down the road for us and we are still feeling those contractions from time to time. I think it just comes with the heart family territory.

I am so sorry that Ewan had another speed bump in the road but at least they are trying to help him make progress and doing everything they can to fix whatever may be slowing him down. Keep your head up girl!!!

Anonymous said...

My son's PreK-4 class will be praying for baby Ewan at Chapel tomorrow. Ewan is the focus of the Chapel Hour...you will have 12 4-5 year olds praying for Ewan. Hope you don't mind, but I talked to the Pastor at school about Ewan and he decided to make it "Prayers For Ewan" during Wednesday's Chapel.

I know how scary the heart cath lab can be (we just did another one in July) but it is truly less invasive than the OHS.

Prayers are being offered up for your entire family.

Shannon Egan

Katie said...

Praying and thinking of you right now. Just was able to check on your progress and read the twitter update that Ewan's in the cath lab. Praying the balloon procedure will help, it's sure made a difference for Maddie :) Praying it can do the same. Heart hugs Kirsten...

deb said...

sending so so much love.

prayers and then some.

Leslie said...

Came here from Sarah's blog. I've been reading and catching up - praying. For you, for Ewan, for grace and strength for each moment. Rest, if you can. He is able. He is Love.

Anonymous said...

Our continued love and mighty mighty prayers coming Ewan's way!!

Lisa L.

Anonymous said...

I heard your call to EWTN and I am typing this message with tears in my eyes. Please know that we in New Jersey are praying for Ewan, you and your family! May God bless you all and continue provide you strength, love and support in this difficult time!