Skip to content

Everything is Where it Should Be: July 20, 2012

July 21, 2012

My favorite thing about this step forward is that it can’t be stepped back. He had surgery. It’s done. He did it and that can’t be taken away. And he did it on their terms. It wasn’t a hail Mary surgery. His amazing, over protective intensivists (Dr Mema & Dr Cox) decided he was ready. He was strong enough. I am so proud of him. And I am SO grateful to them for getting him strong enough to go there. This accomplishment is as much theirs as it is his.

On the way to surgery Dr Himidan touched me on the arm and told me “I’m going to do it exactly the way your uncle taught me” in her gentle voice. And from then on I felt peaceful. In her eyes I could see she wanted this to go as perfectly as I did. This place is filled with angels. It was a long hard wait, but she told us that she doesn’t look at the clock when she operates and we shouldn’t either. She assured us that if there was a problem someone would come tell us. So I didn’t worry. It was almost 5 hours before we talked to her again. I was anxious. I wanted to install treadmills in the waiting room so I could burn off my nervous energy. But I knew he would be OK. 5,000 people read this blog today. That’s a lot of voices going in to God’s ear. You kept him safe with your positive thoughts.

His scar is enormous compared to other CDH babies because he had EVERY SINGLE ORGAN in his chest. His bowel. His stomach. His intestines. His spleen. His WHOLE liver. He even had a KIDNEY up there! His nurse said she’d never even heard of that before. Everyone was surprised. He is a very sick boy. He has been very sick. “But not WHOLE LIVER sick.” Oliver is a fighter. Despite all that he got himself stable enough for surgery and he got through surgery without desatting or anything. That tiny little boy has fought through more than I ever have or will. And I mean that even more now than I did before, because we didn’t realize just how much he was up against before.

Dr Himidan is amazing. Every time she tried to get his liver down the blood vessels twisted and she had to start over. That is why it took so long. That is why he has the huge incision. She was so apologetic. I say who cares?! It’s a scar. If he’s alive, he doesn’t get to complain. One of the huge risks post surgery is that his stomach will swell too much and his organs will fail. Oliver is at a much higher risk for this because of the number of organs that had to be put back. To prevent this, she separated his abdominal muscles and put a gortex patch between them to allow room for swelling. See? Amazing.

He is still at risk. From swelling. He’s at risk of infection. His pulmonary hypertension is still a problem. He has 1/3 of his right lung and a tiny nub of a left lung, but size doesn’t always matter. They have to have the necessary functionality. And you can’t tell that by looking at them. He could get very sick still. There are still no promises he’ll come home. But the obstacle has been removed. It is now truly up to him. He no longer has every single organ in his body compressing his lung and I pray that that is enough to propel him home.

My cousin and I decided in December 2010 that we would get pregnant together in October 2011. Somehow that actually happened. She was due one day after me. But Oliver decided to come early and her little girl decided to stay inside. Little Eliza was born today, happy birthday Eliza! I am so thrilled for her parents, two of the best people I know, and Poppy’s godparents. I think there is incredible beauty in today being Eliza’s birthday and the day of Oliver’s rebirth. I can’t wait to see them together. Xo

20120720-224839.jpg

20120720-224900.jpg

20120720-224918.jpg

20120720-224939.jpg
A little organ mountain

20120720-225037.jpg
He thought about waking up but changed his mind

Advertisements

From → Uncategorized

10 Comments
  1. Way to go, Oliver! I can’t believe he had his *entire* liver up there. He’s such a fighter–I know you’re proud, Alex! 🙂

  2. James permalink

    Unbelievable little guy. So inspiring and you are all so strong.

  3. cousinjenn permalink

    How one life touches other lives. David and Sharifa, Oliver and the not-quite-countless (5000 plus hits? yowza) people following your beloved family’s progress. Thank you for your beautiful writing, and sharing of a difficult journey. See you all soon. ❤

  4. Lani permalink

    Thank you for your constant updates Alex. I’m so pleased the surgery is behind him now and we are still thinking good thoughts for him. His German care package should be there soon – hopefully it helps! xoxo

  5. varla permalink

    Alex, You are an amazing mother ! Your faith, your strength, and your love are are so powerful and so inspiring! 100 Hugs for you and all my prayers and positive energy for Oliver’s continued recovery ! XX 00 Varla

  6. Carolyn permalink

    I just found your blog because one of my friends on facebook “liked” your update about it being surgery day. Since I saw that post, I have been sending good vibes and hoping that everything would go well. I’m so glad to hear that Oliver got through the surgery and I will keep hoping for a steady recovery for your little guy. Best wishes!!!

  7. Michelle Goleski... permalink

    So happy to hear that Oliver was strong enough to get his surgery… There’s a long road ahead… Stay strong… My thoughts and prayers are with you…

  8. Oh wow!! That is a lot of stuff up there! What a little fighter. As you say now there is no turning back and it is all good from now! So glad that this step is over.

    http://ourcdhherolittlea.wordpress.com/

  9. kym pritchard permalink

    YAY YAY OLIVER…BE STRONG EVERYBODY
    Sending all positive vibes your way. Don’t be afraid to ask for help, things that can be done by someone else can be done by someone else…

  10. Good job Oliver! Good job Dr. Hamidian! Good job Alex and Tim for sharing Oliver with all of us. We have been with him, and you and Poppy, in our hearts and prayers all the time….so glad he passed this milestone!!!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: