"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Sunday, March 29, 2009

Matters of the Heart

March 29, 2007 was my original due date for Marissa.  I had learned around 31 weeks that I would not make it to my due date because she was in distress and would need to be born a little early.  I came to grips with this reality.  When March 29th rolled around and Marissa was already two weeks and two days old, I felt a little twinge of sadness.  I knew that if things had progressed "normally" with my pregnancy, she might be just days old, or maybe not even born yet.  I was feeling a little sad and sentimental that day.  Until we got to the hospital.  Then those feelings turned to deep sadness and fear.

When we got to the hospital that day, we were told Marissa had to be re-intubated and was now in congestive heart failure.  In her case, because the valve that was supposed to close (PDA) had not done so yet, it had grown quite large and was shunting way too much blood into her lungs.  This caused her to go into severe respiratory distress as well.  She was essentially drowning because her heart was not functioning properly.  Our wait and see method had failed.

To complicate matters, the doctors suspected Marissa might have a Coarctation of the Aorta behind the PDA.  Colorado Springs does not have a pediatric cardiac surgeon that could handle the CoA, so the decision was made to transfer her to The Children's Hospital in Denver.  She was taken there via ambulance and Jeremy and I followed shortly afterward.  We were told by the docs in the NICU here in the Springs that they had spoken to a doc at TCH and briefed him on Marissa's condition.  Our doc was not sure if Marissa would go into surgery that night or if they would wait until the morning.

It was pretty late in the evening by the time we got to Denver and Marissa had stabilized.  It was decided to wait until the morning, which was Friday, to consult with cardiology.  Cardiology made brief rounds that morning and decided she was stable enough to wait until Monday morning to do anything more.  We were frustrated because she was sent to Denver to have surgery and now that she was there, they wanted to do more "wait and see", this time, 70 miles from home.  Ultimately, it was determined that she most likely did not have the CoA and she would have surgery to close her PDA on April 5th, a week after she got to Denver.  She got through the surgery and, as it turns out, she did not have a CoA.  Now, her heart is as healthy as anyone could have expected and she is thriving.

This morning, as I reflect on what was going on with Marissa's heart two years ago, another mommy who is struggling with her little one's heart condition is weighing heavy on my mind.  She calls herself MckMama and her son Stellan is not doing well today.  He was diagnosed in utero with severe heart problems and his parents were told they were going to lose him when he was 24  weeks gestation.  He survived and his heart condition turned around so much that, when he was born Oct. 29, 2008, they looked for evidence of the heart condition and found none.  He was healthy as could be.

Until last Sunday.  He was hospitalized for respiratory distress and then went into Supraventricular Tachycardia, or an extremely high heart rate.  The doctors have done everything to bring his heart rate down to no avail.  They are surprised his heart has withstood the danger thus far, but he is getting worse.  His heart will fail very soon if he can not be brought into a normal rhythm.  MckMama and her family are hanging on by a thread.  I can relate to this wonderful woman.  I feel her pain.  I have sat by my baby's bed wishing I could trade hearts with her.

Please pray for MckMama, Stellan, and the rest of the family.  Visit her blog and leave a message for them.  Pray that Stellan's heart goes into a normal rhythm very soon and they will not have to intervene surgically, which is extremely risky and does not have historically high rates of success for kiddos his age.



Michelle said...

Wow!! 2 years ago today was the drive up to Denver and her original due date. It's hard to believe that this little one in our lives went through some of the things she did. She is amazing!!!

Auntie Chelle

Michelle said...

I know, reading MckMama's posts break my heart. I don't know if you've read back on Lillian's blog, but she did have a CoA, PDA, and still has a VSD. The morning of the heart surgery just about killed me. I felt like I was sending my sheep to slaughter. She had gone into heart failure a few days before it was decided to do her trach surgery.

I can identify with her so much and your thoughts of wanting to trade hearts. I wanted it to be me over and over. To date, the worse time of my life. I'm glad Marissa and Lillian are thriving and I pray for MckMama and Stellan as well. Thanks for sharing your feelings.

The VW's said...

Matters of the heart, in our kiddos, are SO very hard to have to sit by and watch and wonder! It breaks my heart reading MckMama's blog! You feel so helpless and find yourself feeling the feelings you felt long ago! I'm praying for this sweet boy and his Mama often! So glad that Marissa's heart is now doing well! I'll be praying for Marissa and you too!

Finding Normal said...

I'm praying so for MckMama and Stellan. Babies in pain...just seems to unfair.

Kendra said...

You have a great ability to make me cry. Regularly. Will be praying for Stellan.

Janay said...

As I read your post it occured to me just how many times we missed each other in the hospitals when our kiddos were little. Milo was flown from the PICU in Colorado Springs to Denver on April 1, this time for respiratory problems which resulted in his trach about 2 weeks later. I've been on that rollercoaster ride of NICU to CICU also only for Milo they called people in late at night to consult, he did have the CoA (I didn't know it had an abreviation) and a PDA kept open by drugs as well as the VSD and still we waited a week for surgery :0) I'm so glad out little ones are doing so well and I continue to pray for all those little babies and their families who find themselves in such a scary place.

Hope said...

Marissa is a miracle, for sure!! I'm praying for Stellan.

Nana and PaPa said...

We also look back on that uncertain time in Marisaa's short life and as we do, the emotions come flooding back. We have been SO blessed with 6 wonderful granddaughters, each with NO health or physical challenges, except Marissa. Not knowing whether she would even survive was heart wrenching; the thought of possibly losing a grandchild, in light of losing a child (your brother) 10 years before, was almost more than either Larry or I could even comprehend. No wonder strong, tough Larry cried himself to sleep the night Marissa was admitted to Children's Hospital. I cried silent tears when I was away from you so that I could be "strong" for you and Jeremy. We both were hurting for you two and Marissa. She is an absolutely amazing child who has blessed us, and continues to bless us with her spirited, lively personality. I thank God everyday for her healing. We will be praying for little Stellon and his parents for a healing. We love all of you so much....
Nana & PaPa