Yesterday was the anniversary of being admitted to the hospital. Today was the day I knew he was coming soon. Even though I was keeping things from the doctors so we could have as much time with him as possible, I knew it wouldn't be long until the labs revealed things were headed south quickly. Would it be my blood pressure or kidney failure that did it? I didn't know. But neither were going to be delayed much longer.
Tomorrow at 11:22 am, Robbie will be three years old. The day brought the single biggest source of happiness into my life, but it was a day of terror more than celebration. Nothing can ever change that.
However, there are things that mitigate the sorrow: My son's smile. The way he throws his head backward when he laughs. When he grabs my face to plant a big slobbery kiss on me. Two of the biggest things that continue to amaze and thrill me are simply watching him eat and drink.
Eat and drink he does. It was more than a year ago when we started to try to wean him from his tube feedings. We had success and then failures. Then more success and more failures. Eventually eating became "normal." He asked for snacks, enjoyed meals. Neither of us cried at the site of a spoon or a bowl anymore. But drinking was even harder. He would sip occasionally, sometimes even tease us by downing 2 or 3 oz in a day. But then he'd go weeks without so much as allowing a cup to sit on the table near him. I wondered if it would ever happen.
We eventually weaned him to just water in the tube. He could eat enough to maintain his weight, but he just wouldn't drink. Every once in a while, he'd slip and prove to me that he could. He'd get really hot and down 4 oz in a sitting, for example. I tried to push him a little, but still keep him alive. He would backslide and all the experts would encourage me to add to his tubings again. I kept thinking I needed to push just a little harder, but when he'd have a bad day or three, I'd get nervous and give in to the pressure.
But at the end February I finally reached my breaking point. I always encourage parents to listen to their instincts, but I had been ignoring my own. I needed to give him a chance to make it. On February 27, we tubed Robbie for what would be the last time.
The first few days were pretty rough. He would drink only water, and not much of that. 7oz, 9 oz. Then we had a "good" day- 12oz. But then another bad- 7. I got nervous. Could he go a 4th day? He was still wetting, still crying tears, still sweating, still running around like a typical crazy toddler- no outward signs of dehydration. David and I wrung our hands a bit, but moved forward. He drank 17oz. Not that 20 that the experts wanted, but it felt like gallons. Then he had another bad day- 7oz. But then another 17 again. Back and forth it went for weeks- sometimes he'd have 2 or 3 bad days in a row, but then he'd have a great one. The first time he hit 20oz in a day, David and I oohed and ahhed and patted each other on the back.
We pushed applesauce for snacks as an extra source of liquid. He started to take sips of juice from a juice box. We bargained. "Take a sip and you can have another cracker. Good job!" He started to cheer for himself sometimes. He'd take a drink and say "Good Job, Wobbie!"
And then it had been a month since he'd been tubed. And I suddenly started thinking about a life without a tube. We put the IV pole & feeding pump in the basement.
The weeks went by and it became clear that he was never going to be a kid who regularly drank 20+ oz per day. He averages closer to 15-17, but he still wet, sweated, and cried. Something else was happening, too. He was gaining weight. He put on more than 2 pounds by himself! He hadn't gained 2 pounds in a year even with the tube. And now he'd done by himself in six weeks.
Then around 2 months without the tube, he got sick. He stopped eating and barely drank. I panicked. My friends reassured me that their healthy kids often did the same when they get sick. He'll get through it.
We saw the doctor- a double ear infection. When the doctor prescribed antibiotics that always upset his stomach, I felt sick myself. I was nearly in tears in the office- what if I have to tube him for hydration? She said "it's better than an IV." She clearly didn't "get it." But it turned out Robbie did. He drank just enough to get by. And as his health improved, so did his eating. He lost nearly 3 pounds in the 2 weeks of being sick and medicated, but a week later, he'd regained a pound of that. And the rest came back slowly over the next few weeks.
On Thursday, Robbie had his regular quarterly GI appointment. It had been a full 3 months since he'd been tubed. When the NP came in and asked how things had been going, I lead with that fact. She smiled and nodded. In telling her how things had gone, I mentioned my friend Becky and her son Evan, adding that Evan had his tube pulled a year ago. Before I could even finish my thought she asked, "Want me to take it out?"
I was stunned silent. I had planned to ask how long it had to be, but I expected it to be later. I asked if she was serious. She said, "Yes. He's gained nearly 3 pounds. He's doing great. It's only up from here." I started to cry. She left to get a syringe while I cursed myself for having not brought the camera.
I used the last breath of battery charge on my cell phone to take one last tubed-Robbie photo. Five minutes later, it was done. She put a layer of Tegaderm over the wound. Robbie complained about the "sticker" on his belly, but when we told him to leave it on, he accepted it and went back to pushing the doctor's rolling stool around. He was completely unaware of the momentous nature of what had just happened.
To further surprise me, she also discharged us from GI entirely. He still needs Nexium & Miralax, but as long as our pediatrician will write for them (she will) we "don't need" a GI doctor. Yet again, I was near tears. Robbie now only has one specialist- an ENT. How very.... typical of us.
As we checked out, we showed off Robbie's newly flat belly and said our good-byes. I'm pretty sure I floated to the car. I called David on the way and was struck by how nervous he sounded. I didn't feel nervous at all. If you'd have asked me a month ago how I would feel the day we pulled his tube, I would have said "excited and nervous." But really, all I felt was joy. I know we can do this. I know HE can do this.
The joy that I felt that afternoon has been carrying me through the sad memories of three years ago. The journey has not been easy, and has left scars both physical and emotional- but we have been rewarded with victories that continue to defy preeclampsia and prematurity.
Three years ago today was a very bad day. But today is a very, very good one.
--Trish
