Tuesday, October 2, 2007
I've been meaning to do this for a while, mostly because I'm hoping that some new mom will stumble across my blog and reading about my initiation into the Ds Club will help her get through the process. I know that reading others' experiences, thoughts, rants, and raves helped me out more than talking to any genetics counselor.
I originally typed this out in an email to a new friend (Hi Susan!) and member of the Ds Community. Sadly, I'm not up to editing and rewriting it a hundred times. It's still kind of raw.
So, take it as you will, a rambling account of How It Happened.
When I had my 20 week sono, it came back with 2 soft markers- an EIF in his heart and kidneys that were "on the larger side of normal". My OB told me not to worry about it, but said he would refer me to a specialist if I wanted to put my mind at ease. Of course I went to the specialist- at that point I was crazy with worry about what might be "wrong" with my baby. The level 2 sono showed the same markers, but the specialist told us that they were very common- he compared the EIF to a freckle in his heart muscle, and said that enlarged kidneys were very common in boys. He said that the worst case scenario would be perhaps some reflux issue with the kidney, but it was easily fixable and not to worry about it. He wanted to see us back at 34 weeks to check on the kidneys again.
So, for the next 14 weeks, I told myself there was nothing to worry about. We stayed positive. I pushed whatever doubts I had to the back of my mind, but I knew that I would never feel completely at ease until I held a healthy baby in my arms.
We went back at 34 weeks and the kidneys looked great. No other markers. I asked the doctor about Down syndrome. He said he "would be shocked if this child had Down syndrome." Bryan and I breathed a sigh of relief. I still held onto the teensiest bit of worry, but for the most part, I was fine.
I went into labor at 37 weeks, had a fast delivery, and Chase entered the world. After he was born, Bryan held him. I remember watching him as I was being stitched up, and all of a sudden, he handed Chase to a nurse and slumped in the chair as if he was going to faint. I later found out that he was pretty sure that he saw the Ds then.
But the dr never said anything. The nurses never said anything. Chase didn't really latch on to nurse really well, and then they took him away to be bathed and whatnot and said that they'd bring him to me in about an hour. An hour came and went. 3 hours later I called down. They said that he was just having a little trouble keeping his temp up, and he was under a heat lamp. Not to worry. Finally they brought him in. I held him for all of maybe 5 minutes when the nurse decided she didn't like his color. And he was pretty sleepy. So she took him back to the nursery and he was put on oxygen. She said it happens a lot. Sometimes they just need to dry out a little.
When our pediatrician came that morning, she stopped in to congratulate us and to update us on the oxygen thing. We asked her about Ds. She said that she thought he was perfect, but if we wanted her to send out the chromosomes to ease our minds, she would. She reassured us that he was getting better at breathing on his own, and they would be slowly weaning him off the oxygen that day. If we wanted to see him, we had to go into the tiny NICU.
So we did. I was able to try and nurse him several times. He was still sleepy and not real responsive. The ped assured us that he'd become more alert in 24 hours or so. It was SO difficult not to have him with us all the time- to have to scrub in to see him. To set an alarm every 3 hours at night to get up and try to nurse him. I cried a LOT during this time.
On the third day, (after 2 days of the ped telling us that he was fine) his care was tranferred to the neonatologist "just because of protocol- more than 48 hours in the NICU requires it". Fine. So now the new dr examines Chase and comes to see me in my room (Bryan had gone home to catch a shower and spend some time with my older son Ian). He comes in and says in this really thick Indian accent: Chase is a sweet boy, but he looks a little different. I thought my world was going to stop. I could almost hear everything come crashing down on me. He said he was going to send for a chromosome map- I told him we had already requested one (who was this guy, anyway? he obviously didn't know what he was doing!). He also said that Chase's stomach was getting distended, and that he was still struggling with the oxygen. They were going to do an echocardiogram to check out his heart. He thought that he might have Hirschsprung's disease (a GI tract thing) and that he would let us know the results when they came in. I asked him WHY he thought Chase had Ds. He just looked at me and said that he'd rather not go into it until the results were back.
All I could do was sob after he left. Everything I had hoped for seemed like it was being completely snatched away. This is when the "Why me??" phase really kicked in. Why, when we had done everything RIGHT- Why, when there are mothers who don't even want their children- why? when there are people who can't and won't take care of their kids- why were we cursed with DS?? It was the most horrible feeling I have ever had.
The echo showed a blood clot in the ductus. They decided to immediately transfer Chase to the main hospital uptown. They wisked him away in a little plastic baby warmer into the ambulance. I told them that they needed to discharge me. ANd home I went. The hardest thing I have ever had to do was walk from my hospital room out the doors, through the parking lot, and get into the car with the infant carseat in the back- empty. I passed new moms in wheelchairs holding their little pink babies, waiting for the nervous dads to pull the cars around front. I still cry even now when I think about it.
We made it to the new hospital at around 11 that night. We spoke to the neonatologist on duty, and he basically said that he'd been wrong once before, so he's not perfect, but he's pretty sure that Chase has Down syndrome. He pointed out his low tone, talked about the GI issues, pointed out his oh-so-slightly almond shaped eyes, his squatty little palms and fingers, his toe-gap. And he looked so helpless there. He was hooked up to countless lines, his heels had been pricked so many times that they were permanently purple. And I knew, regardless of his chromosomes, he needed US. We weren't the ones that were in pain. He was. And he was a survivor. And he had the strength within him to lay patiently, calmly, quietly, while all of this was happening to HIM- and what business did I have worrying about how my life was changing?!
We commuted back and forth to the NICN twice a day, while also trying to balance time with my 2 year old. 3 days later, it was confirmed that, indeed, Chase had 47. We pretty much had accepted it already. It still hurt, though. Not just for my selfish reasons of wanting the "perfect family"- but I have this terrible habit of fast forwarding to the future--- I could already hear the jeers and taunting of other kids. I could already feel his frustration of not fitting in. His older brother Ian- would he grow to resent him? Would it make him stronger? What did the future hold for all of us?
Chase was put on heparin- a blood thinner- for 9 days. He was on IV fluids only because of the GI issues- whatever they were. They couldn't do any testing on his intestines until he was off the blood thinners. 2 days after he was off the heparin, they did a biopsy of his intestines and confirmed Hirschsprung's disease. On my due date, he went in for surgery for a pull-though- where they cut out 3 inches of intestine that didn't have enough nerve cells and pulled everything down and sewed it all up again. He looked so delicate- so tiny in that infant-travel-box thing they transported him into surgery in. All I could think about was what would happen if he didn't wake up? ...He came through with flying colors. His surgeon said later that it was as if he went in and gave him a haircut instead of major surgery!
After he was healed (about 5 days later) Chase could start eating. I had pumped every 2 hours for 3 1/2 weeks, so he had a huge supply to get started on! He was allowed 9cc of milk by bottle, and they would increase it 3cc every 12 hours. He needed to get to 70 cc to go home.FInally, at 4 weeks old, he was eating enough to gain weight, and we were allowed to bring him home.
So, now he's been home for 4 months. And he's happy, healthy, and mighty chunky. I know he's here for a reason. All those why me's are mostly gone. I just know that he needs us and we need him. He's here to teach us something. And what if he had been born to parents who couldn't love him like we can? What would happen to him?
Most days I'm fine. Some days I still mourn the loss of the little boy that I thought was going to be here. I would be lying if I said I was completely at peace with DS. I'm not quite there yet. But I'm a lot closer than I was before. I think the thing that nags at me the most is the distant future. What will happen to him when Bryan and I aren't here? Will he be happy? Will he be independent? Will he be safe? It's scary. I worry.