Tuesday, October 26

Walker James is one week old today. It is hard to wrap my mind around how much our life has changed and how much has happened in just one week of Walker’s life.

Today felt like a day of information overload. Many different nurses and doctors came by to speak with us about different aspects of Walker’s care. It is really amazing to see so many different professionals with different skill sets and knowledge working together so seamlessly to make sure our boy gets the best care possible.

Right when we arrived at the hospital today the general surgery nurse practitioner came and spoke to us for some time about the two different options for the insertion of Walker’s feeding tube (G-tube). The less invasive choice is to use image-guided therapy to go through the skin on Walker’s tummy and into his stomach. The other choice is to go in surgically to insert the tube. The doctors would prefer to insert the tube through image-guided therapy if they can, as it would mean that Walker would not have to undergo a full surgery and have another incision to heal from. The nurse practitioner told us she would need to meet with the radiologists and specialists to carefully go over if Walker qualifies for the image-guided therapy approach.

A little bit later, the geneticists who looked at Walker yesterday came by to order one last blood test. This final test will rule out one last condition that is a possibility before they are able to confidently make a diagnosis for him.

During morning rounds, we learned that when trying to insert a new replogle tube (the tube in his nose that suctions out his esophagus) in Walker’s nose early this morning, the nurse found she was not able to get the tube in his left nostril. She said this could be due to some sort of blockage, and they weren’t sure if he was actually getting air through that side of his nose or not. Later in the day the ENT specialist came by to look at it and was able to get a smaller tube in. He said it actually looks like Walker might just have a bit of a deviated septum on the left side. We were very relieved by this.

Finally, even later in the day again, a G-tube nurse practitioner came by to speak with us. She had gone over Walker’s charts and tests with the radiologists, who believe that Walker is a candidate for the image-guided therapy approach for inserting his tube, even though he is very small and just barely meets the 2kg requirement. She explained exactly

how this procedure would work and explained all the benefits and risks. Now we wait for a date for his procedure.

Some positive things from today:

Walker opened his eyes for quite some time and looked right at us. It was really special. He also sucked on a soother! Maybe he will be a soother baby just like Jordynn and Easton.

His blood pressures have been consistently better.

His dosage of fentanyl is going to be slowly decreased and they will see how he responds.

He was given a suppository and did two poops! (Since he is not eating, his bowels are not moving anything and he hadn’t really pooped out the meconium yet)

I think that was it. Like I said, it felt like a bit of information overload today.

Some things that are really on my mind tonight that we would really appreciate prayer for…

Pray that Walker’s incision will heal completely and his chest tube will be able to come out safely in a couple of days.

Pray for Walker as he waits for his G-tube to be inserted. Pray that he keeps growing and gaining weight so he is well above the 2kg threshold. Pray that this procedure will be successful for him, with no complications, so that he can soon start getting breastmilk in his tummy.

Pray for the results of this final genetic test to be negative. I am feeling nervous about this result. Pray also for peace and strength for us no matter what the result because we know it is all in God’s hands.

Pray that Walker does well on the lower dose of fentanyl and doesn’t show any signs of withdrawal or pain.

Pray that his little body stays strong and continues to fight. His nurse today told us he was feisty and knows what he wants and it made us smile.

Please pray for Andrew and I, too. We are really missing Jordynn and Easton and home, and it’s hard to not know what the next days and weeks and months will look like for our family.

💙💙💙