The last two days have been wild, and we are feeling so grateful to be where we are right now. Joey was extubated early this morning without any issue, a huge change from just under a week ago. He is still on oxygen, just a regular nasal cannula. The nurse is trying to locate one capable of lower flow to try to wean him off more. If all continues as is, he’ll move out of CICU tomorrow.

We are in a private room, with dim lights and music playing around the clock. We keep the glass doors closed for most of the day. We have learned that creating our own “bubble” here is necessary for peace of mind – or survivors guilt starts to settle in. There are many babies here that have not moved since we arrived. Yesterday there were two emergency interventions that happened here that required, what looked like, surgeons operating. One of our first days in the CICU we saw a large group of people in the room next to us, then heard a man moaning, music playing, and then the room was completely empty – no baby. I was sad. The preciousness of our situation became very evident.

While many of the other patients are struggling, there are many who are thriving like Joey. Our neighbor received a heart transplant the same day Joey had his heart surgery. He was extubated yesterday and is out of the CICU. A friggin HEART transplant! How does that happen?!?!? He was on the table for less time than Joseph. I’m still trying to wrap my head around what is happening here. It is amazing, crazy, unbelievably cool.

The biggest thing that happened today was this:


48 hours after open heart surgery, they asked if I would try to feed him. There is nothing, nothing, NOTHING like this. I am HAPPY.

So, we are still floating here a bit – and are looking forward to seeing MALCOLM THIS WEEKEND!!!!!!!!!! I may just eat him up.


15 thoughts on “Nooks

  1. How utterly amazing your little guy is!! I am soo happy for you all. All of the prayers are coming to fruition. I love you guys!!!

  2. Thanks Be to God!!! This is so excellent. People in MIchigan are praying for all of you. One of our parishioners passed the request to someone to passed it on to someone else. I have no idea how many people are hearing about Joey and praying or sending good thoughts or holding you all in their hearts.

  3. I remember a lot of those feelings you describe from when we were in the PICU with our baby last summer – especially that need to create a bubble. We brought our own little lamp, had speakers to play low music, created a little altar in the corner of our room – we even brought our guitar and would sing to her (and to ourselves), which I think helped a lot. If you ever want us to come sing to Joey, it would be our honor. Prayers for you all!

  4. Blessing to you. I’m a doula waiting for a mama (my cousin) to deliver a baby with a severely compromised heart. This gives me hope when I am so awfully tired. ❤ sweet you, sweet boy.

  5. I am so thankful for Joey’s success. And you have nothing to feel guilty about, btw. The rooms of tears are so painful to walk past. Every child is different, unique, a gift in a special way to their parents. At least for me, I’ve never once envied another family’s success. The pain I have suffered over the past month is not anything I want another parent to feel, and we still have our little wonder! He is doing sui well, he is bringing a positive side to the statistics 🙂 I LOVE reading of his awesome progress! I hope you can all be home soon, together again, as it should be.

  6. A mother’s love can heal. I’m so excited for you and Joey. You have such a warm and compassionate view of your total surrounding. We are rooting for you and all the babies in the CICU.

  7. The Lord loves you and is holding your family close to His heart. You are a wonderful Mommy and Daddy so make sure you take care of yourselves, too. We will continue to lift you up in prayer.

  8. God is so good. I lift you up in prayer many times during the day. What a spirit Joey has, and what wonderful parents you both are. I am a friend of Jessie W’s, and ask about all of you when I see him as well. My heart is joyful that you have this precious gift.

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