This is the next chapter in our long struggle with sick babies and Hirschsprung's Disease. Of course, the story began over 17 years ago. If you are just tuning in, you may want to start at the beginning.

(If you know me in real life, please don't be confused. The children all have blog psuedonyms that begin with the same first letter as their real name.)

Previous Chapter: When a Surgeon Sprints

 

December 10- Day 8 in the hospital, 7 days post-op (continued)

 

From the moment the doctors gave the order to move Sean to the ICU, there was an urgency that filled the air. There was rushing to get sleeping Hubby from the Parent Lounge. There was scurrying to gather all of our scattered belongs and shove them into bags as quickly as possible. Hubby sprinted in and helped me and the nurse finished gathering our things and Sean’s things. The transport person arrived and helped us finish.

 

I felt as if we were in a race, but we finally arrived—all of us—at the ICU.

 

Hubby and I waited in the ICU’s family waiting room while they got Sean settled in his new room. We called our parents to give them the news. We made a quick call to one of the people in our small group to let them know what was happening. We asked them to call the rest of the folks in our group and ask them to pray for Sean. We told them how devastatingly serious this could be. Then we waited some more.

 

That must have been the longest half hour of our lives!

 

Finally we were told that we could go back to Sean’s room. His nurse filled us in on all of the rules of the ICU. We could stay with Sean has long as we wanted; we were not limited to only being in his room a certain amount of time. However, we were not allowed to have food or drink in his room. We were also not allowed to sleep in his room at all, not even a nap during the day.

 

Up to this moment, we had not left Sean alone for more than a minute or two in the hospital. We ate our meals in his room beside his bed. I slept in a fold out chair beside his bed every night. If I went to take a shower, it was while Hubby was with him. I didn’t want my baby to wake and find himself in a strange place without his momma. If he cried, I didn’t want him to have to wait until a nurse heard him and could get to him. I wanted to be by his side, caring for all his needs.

 

Now they were telling me that when our baby was the most ill, we would be forced to be away from him the most. I understood all the reasons—I knew that those rules were there to make it easier to save a life if they need to do so.

 

I wasn’t sure that I could do this.

 

 

Then I took a look around that huge empty room and at the crib sitting backed up against one wall. There was my tiny boy—very sick and still.

 

Of course, I would do anything for that tiny boy.

 

I prayed that God would gird us up for the task and bring healing to my baby boy.

 

 

We ate lunch in shifts that day. Sean slept most of the time. There was little fussing. He mostly just was groggy or sleeping.

 

When suppertime finally arrived, Hubby and I were planning to eat in shifts again. Sean’s room was right in front of the nurse’s station, and she assured us that if he moved, she would see it. We just didn’t like the idea of leaving him when one of us could stay with him. But then one of the couples from our small group came to visit. They sent us off to eat supper while they stayed with Sean. We tried to enjoy our moments together during supper, but we could only think about that big room upstairs with a small crib where our baby was sleeping.

 

It was so sweet to visit with our friends for a little while. It was good to see the caring faces of friends. When people asked what we needed, it was always difficult to think of what we really needed. We were only thinking of Sean, not ourselves. When our friends walked in the door, I realized that we just needed a visit from friends. The hospital was a little over an hour’s drive from home, which made it difficult for people to come visit us. What a gift from our loving friends!

 

When we finally returned to Sean’s room after supper, he was doing much better! His limbs were no longer cold, and his belly was much flatter. The tube that Dr. E left in his bottom was doing its job of bypassing the anal sphincter to let the poop just come out. Sean was awake and alert, being fussy, and acting hungry. These were all wonderful and hopeful signs that the antibiotics were working.

 

It felt strange to be happy that our baby was being fussy and grumpy, but it meant he was well enough to tell us he didn’t feel well. A huge weight was beginning to lift off of our shoulders!

 

Dr. E came to check on Sean before he left the hospital for the night. He seemed to think that Sean was responding to the antibiotics. He said if the fever was gone in the morning, we would know that enterocolitis was the problem and that they were treating Sean properly.

 

We were beginning to feel hopeful after a very despondent—and long—day.

 

When Hubby and I were so tired that we just couldn’t stay awake anymore, we decided that it was finally time to leave Sean. We couldn’t afford a hotel, and the Ronald McDonald House was always full. We usually just slept at the hospital—Hubby in the Parents’ Lounge (along with a few other dads), and I in Sean’s room. Tonight, we both settled into an empty lounge for ICU parents.

 

It was difficult to sleep so far from my baby, but I asked God to keep my baby and bring us rest. After gazing at the ceiling for a while, I reached over into Hubby’s lounge chair and held his hand.

 

We got as close to one another as we could.

 

Sleep finally came.

 

 

 

Next Chapter: Not Just One Miracle