Life in the NICU Part 5 - Finally Home

Haven't read the beginning of the story? Start here.

Timothy is a fighter. He fought that infection hard. Over the course of about seven days they put him on increasingly higher doses of medication and increasingly more invasive ventilators in an effort to help him in his fight.

While he was fighting the infection we weren’t able to hold him at all. All I could do was reach into the side of his incubator and lay my finger on his foot or leg. I would stay by his side for a few hours each day and sing to him. I remember at one point, I was standing at his bedside and only stayed a few minutes before the grief caused by his situation overcame me and I had to leave the room. I knew that there was still a real possibility that my baby could die. While we had been in the NICU I had already witnessed one family have to say goodbye to their wee little son who was just too little and frail for this world. I knew it could happen.

But, one day, we came in to the hospital to the news that Timothy was getting better. His body was responding better. And slowly his lungs started working better.

And every day, he gained a few more grams. And every day, he got a little bigger. And every day, he ate a little more.

We celebrated when he reached 2 pounds. We cheered when he reached 3 pounds. We started hoping when he reached 4 pounds and by this time was gaining 1-2 ounces per day.

When he was nearing 5 pounds, I got the news from the head nurse that Timothy was the next in line to move over to the Feeder and Grower side of the NICU. This indicated that instead of being in a room with a nurse to patient ratio of 1 to 2, he was able to be in a room with a ratio of 1 to 3 or 4. It meant that all he needed to do was grow, grow, grow and learn to drink from a bottle. In Timothy’s case, he also needed to be able to breathe room air, rather than being on oxygen to help

By the beginning of December, he was growing and growing, literally before our eyes. We were able to put clothes on him. He was in an open air crib, able to maintain his own body temperature without living in the tropical paradise of the incubator. I was able to hold him freely as long as I wanted. I changed all his diapers whenever I was there.

He still needed oxygen, just the tiniest bit. It was almost like it was a crutch for him. They kept trying to wean him off, but he couldn’t get the hang of it.

He was starting to take his milk from a bottle, little bit at a time, sometimes tiring before he could finish 15ml.

But every day, little by little, he was growing.

Until one day, during the middle of December, the neonatologist started talking to me about when we could take him home. The doctor decided that since he was doing so well, except for the oxygen, he would go ahead and discharge Timothy with an oxygen tank until his lungs were finally able to handle breathing completely on their own.

I remember very clearly a Friday shortly before Christmas. The doctor told me that Timothy was ready to go home. The words that I had waited to hear for nearly three months. But I was scared out of my mind. I told him that I wasn’t ready yet. Crazy, huh? You’d think that after all that waiting I would have loaded him up into the carseat and taken off!

But I had a little guy that was born so fragile. For his entire life I had medical staff keeping an eye on him. If I took him home, it was just going to be me and my husband! What if we made a mistake? What if we didn’t catch something?

I told the doctor that I wasn’t ready. He said he wouldn’t push me, to just tell him when I was ready.

Over the weekend, I thought and thought. Jeremy and I talked about it and he also didn’t push me, knowing that I needed to be comfortable. I talked to the nurses that were working in his room, who by now were friends. No one pressured me, but I knew that we couldn’t keep him there forever.

On Monday morning, I made sure to be at the hospital in time for the doctors’ rounds. When he came into the room I told him that we were ready to bring Timothy home. And so it was decided. They told us that we could take him home the next day.

timothy going home.jpg

After 87 days and a million dollars, we brought our son, Timothy David White, home, weighing over 6 pounds and the size of a typical newborn.

Finally, our family was together again, under the same roof. No more hours spent at the hospital. No more waiting for middle of the night calls that never bring good news.

Even as I type this, I am overwhelmed by the memory of that day and the days that followed. I believe it was Kendra that told me to expect a time of transition after we brought him home. The other children needed a chance to bond with the baby. They needed a chance to bond with me again as their primary caregiver. We all needed a chance to just be normal.

So, that’s what we did. We weren’t allowed to go anywhere except the doctor’s office and grandma’s house because it was the middle of the winter and if any of us got sick and brought illness into the house, Timothy was at a very high risk of getting sick and ending up back in the hospital. For three months, he didn’t go anywhere. And it was the best thing ever. I stayed home, carrying him in the Moby Wrap, with his portable oxygen tank strapped to my back.

Just a couple weeks after Timothy came home.

Just a couple weeks after Timothy came home.

During this time, with a 7 year old, 5 year old, 3 year old and a newborn, we spent a lot of time reading books on the couch. We all took naps in the afternoon. We played lots of games.

We were a family.

Note: He only needed the extra oxygen for about six weeks. After several nights of waking up to find that his nasal cannula had come off in his sleep and the apnea monitor never picked up a change in his breathing, we knew he didn’t need it anymore.

That little boy, born 1 pound 13 ounces, is now 3 years old, 26 pounds.

The Beanie Baby is just a few inches shorter than him.

The Beanie Baby is just a few inches shorter than him.

Taken just a few weeks ago after he played in the mud.

Taken just a few weeks ago after he played in the mud.

We prayed earnestly from the beginning of this story that God would use Timothy’s life to bring people closer to Jesus, to understand that we cannot cope with the trial and tragedy of life without the hope that comes from knowing Jesus. I can’t tell you the number of people that have told us that Timothy’s life story woke them up to their need for Jesus. And for that, we give God all glory and praise.

-Michele