Wednesday, September 7, 2011

Day 5

For most, the ability to hold one's child in their arms is an everyday thing. It's just viewed as a part of the package. But for the parent of a child in some form of critical care, it's something that is hoped and prayed for daily but rarely happens. We all eagerly wait for the next chance to feel the weight of our child in our arms.

I was fortunate enough to hold Adeline for a few moments right after birth. The nurses needed an extra hand, and I was conveniently located. So I got lucky. Today, after almost a week, Christin was finally able to hold baby Adeline in her arms. After being continuously monitored, Adeline was viewed as consistently stable and able to leave her special crib for a brief time in Mom's arms.

Both of us realize this is probably the last time we'll be able to hold Adeline until several weeks after surgery, but I know Christin couldn't have been happier. She had a glow to her today I hadn't seen all week.

Helping add to the glow was the news that while in utero things don't always appear as they are on an echo. If you think about it, you're taking a picture of the inside of a person inside of another person. After finally getting some clear pictures of Adeline's heart, it was concluded that Adeline does NOT suffer from Double Outlet Right Ventricle (DORV). Instead, she has an additional vein running from her brain to her head - a vein that typically dissolves during development. From the outside of a person inside of a person, it looked to be a misplaced artery; however, it wasn't.

In addition, the other major source of concern, her Mitral Valve, appears to be above the threshold of acceptable size, although it's still on the small side. What this means is that our greatest concern, that of her heart being forced to be single (vs. double) ventricle looks to not be the case. This is an enormous win for Adeline and gave us all an amazing sense of joy and hope today.

Of course, we have to keep in mind that once Adeline's heart is opened yet another story can unfold, but the positive news is what we want to keep thinking about.

So where does this put us? Adeline will still undergo open heart surgery this Friday or Monday for the repair of a VSD and ASD (holes in the walls of her heart), along with the repair of an interrupted aorta. If things are as they appear in the multitude of echos performed this week, Adeline will only have to undergo a single operation. Up until now we had been planning for a two or three phase surgical plan. Having a single operation is amazing. There is simply no other word to use.

After surgery, Adeline will return to the PCICU for several weeks and then be moved to a pediatric cardiac step-down unit where Christin and I will be able to stay in a special room along with her. This unit is designed to help bridge the gap between critical and home care. It is also the final proving ground for Adeline's ability to feed on her own (vs. feeding tubes and IV's).

For now, we pray and ask for you to pray that Adeline's surgery on Friday or Monday is successful and that the diagnosis received today holds true.

As a final note, thank you to everyone who has been checking in on us. While Christin and I are still having trouble returning phone calls, text messages, facebook messages and emails, your thoughts, concerns and prayers continue to move us through this challenging and stressful time.



  1. I am crying. This is such amazing news!! So thankful that things are looking better for Adeline and that Mommy finally got to hold her. I am praying for the surgery right now! Love to you all!

  2. Praying so hard for both of you and sweet Adeline!! Love y'all!

  3. Wonderful news! Praying for Adeline and for all of you! She is blessed by her brave, loving parents.

  4. She is beautiful! You are all always in our thoughts and prayers.

  5. How AMAZING! What a true MIRACLE! I am delighted to hear such wonderful news about Adeline! Know all three of you are in our hearts and prayers!!