Day 6 - 10

By Friday morning, Benjamin was warmed up to normal body temperature of 98.7 degrees. He did well throughout the warming process and was stable through the night. He did require slightly more oxygen during the night but was back at room air using some pressure from the CPAP. 

Friday morning, I got there around 9am and they were doing an EEG to check his brain waves and look for any signs of seizures. He had to have some steroids because his throat was inflamed due to being intubated 2 times. 

I got to change his diaper for the first time that morning! Oh how the little things mean so much to me now!

That afternoon I got to hold my sweet baby boy for the first time! I can't describe it, but it felt so good. He was so content and just slept sweetly in my arms. He seemed to be making lots of progress and we left the hospital that afternoon in such celebration. 

Later that evening he was going to his MRI and I called to check on him. The nurse said he was getting upset because they were moving him, so Cam decided to go up there and check on him as he came back from the MRI. The nurses reported that they had seen some seizure like activity as he was going to the MRI. Cam witnessed him struggling and seeming upset as well. It was hard to get this news after such a day of celebration. 

They started him on a 24 hour EEG to monitor his brainwave activity to see if he was indeed having seizures. They did discover some activity on the EEG and extended it another 24 hours. They decided he was having "Sub-clinical" seizure like activity. These sub-clinical seizure that were registering on the EEG were not showing on the outside however. They started him on some medication called phenobarbital to control potential seizures. 

This medication made him very sleepy again and so it felt like we had taken some steps backwards. 

During this time, his right lung collapsed as well. They aren't sure exactly the cause, but he had been on his back for 6 straight days and had a lot of secreations in his lungs that he was not able to clear out. 

They started him on breathing treatments every 6 hours for the next few days. 

Monday morning we had a new doctor on rounds. It was hard to make this transition and begin hearing someone else's opinions and outlook on the situation. We were wanting everyone to be unified in the information they were communicating, but the reality is that everyone does have different experiences with patients which affect their opinions and outlooks. This doctor was not as positive about the hopes of Benjamin going home any time soon. Or the thought of him being able to eat well. She told us it was going to be a long road of occupational therapy and physical therapy to help him learn how to suck, swallow and breathe. Even though she said these things to us, I told her that we hoped Benjamin would prove her wrong. I believed in my heart that he would! 

The few days after Benjamin was put on the seizure medicine he pretty much slept all day. It was a good time for Cam to go back to work as well. Since we thought we were looking at a longer road of Benjamin at the NICU, he felt that being at work now was important. Thankfully his coworkers were very compassionate and understanding. We also got the official reading of the MRI that they did not see anything of major concern, but want to repeat it in a week since he had just come off the cooling blanket it may not have shown an accurate picture. 

So God was asking us to wait. It was so hard, but there was nothing new the doctors could tell us and we just had to wait and see what Benjamin would do. 

Some encouraging verses from my mom & her friend: 

I wait for the Lord, my whole being waits, and in his word I put my hope. Psalm 130:5

No one who hopes in you will ever be put to shame. Psalm 25:3

The passages that our minister had prayed over Benjamin came to mind as well:

Romans 8:24-28 & 31-35

Encouraging scripture from my little brother Chas:

Psalm 27

The Lord is my light and my salvation--whom shall I fear?

The Lord is the stronghold of my life--of whom shall I be afraid?

When the wicked advance against me, it is my enemies and my foes who will stumble and fall. 

Though an army besiege me, my heart will not fear; though war break out against me, even then I will be confident. 

One thing I ask from the Lord, this only do I seek: that I may dwell in the house of the Lord and seek Him in his temple. 

For in the day of trouble he will keep me safe in his dwelling; he will hide me in the shelter of his sacred tent and set me high upon a rock. (Thatcher)

Then my head will be exalted above the enemies who surround me; at his sacred tent I will sacrifice with shouts of joy; I will sing and make music to the Lord. 

Hear my voice when I call Lord; be merciful to me and answer me. 

My heart says of you, "Seek his face!" Your face, Lord, I will seek. Do not hide your face from me, do not turn your servant away in anger; you have been my helper. 

Do not reject me or forsake me, God my Savior. 

Though my father and mother forsake me, the Lord will receive me.

Teach me your way, Lord; lead me in a straight path because of my oppressors. 

Do not turn me over to the desires of my foes, for false witnesses rise up against me, spouting malicious accusations. 

I will remain confident of this: I will see the goodness of the Lord in the land of the living; be strong and take heart and WAIT for the Lord.

My sister, Charlotte also shared this video with me that morning that really expressed how I was feeling as well. 

See post from earlier this morning titled Praise His Holy Name for the answers to that waiting the Lord asked us to do.