So here we were on this crazy ten ticket ride, and I knew very early on, that we would have to find an organized way to survive this ride or else we would get lost in everything. I decided that it would be a very smart idea to get a day planner for Simon. With all of his specialists we needed a central place to keep phone numbers and other important information.
If you know anyone who has recently had a baby with a disability of any sort, here are my suggestions for them:
1.Get a day planner or central notebook. Something with lots of places to make notes when the doctors are speaking medically. Have enough space in there for pens and a calculator. (You never know when a calculator will come in handy.) Have a different color pen for keeping track of developmental milestones. It is nice to look back at the day planner and be able to realize that even though it took a little longer, my baby did eventually roll over. This was how old he was when he did it.
2. Set up or have someone set up a food brigade. With all the new words that you are going to have to learn, all of the appointment that you are going to have to keep, you do not want to be worrying about what will be for supper in a few days.
3. Have a central information person. If your baby is still in the hospital and you are running back and forth, you probably won't have time to be returning phone calls from Great Aunt Dorothy who wants to know how the baby is doing. With social networking it is easier to have only one place to update people, but it is always nice to speak voice to voice.
4. Be prepared for the stories. We had so many people who told us stories about their second cousin twice removed who had a baby with Down Syndrome and had to have a hernia operation, or a lung removed, or whatever. People will spend a lot of time trying to process for themselves how to deal with your new bundle. Sometimes you just have to smile and nod. If you are a friend of someone who has the new baby, try not to tell stories about your cousin who had the baby. After a while it gets to be a bit much. Save it for next year when it matters more.
5. Do your research. Get a hold of reliable material that can help you interpret what doctors are saying and what challenges need immediate attention and which ones can be addressed in the months or years ahead.
6. Find a friend. There are connections to be made at the hospital where you can speak with someone who has been through something similar. Find someone who has been there and can answer your questions, or just listen. It is invaluable to have a person you can call to find out about the challenges that lie ahead. If you can, go through a friend that you know personally. Then they can vouch for their personality and character and the probability that it will match with yours.
7. Take time to cry. It does really stink at times to have this hand dealt to you. Holding in the disappointment only delays the process you will have to go through eventually. You expected to have a perfectly healthy baby and when you don't it is okay to grieve. Just don't let yourself drown in sadness. You also have a baby! For some people that is not a reality that they can achieve.
I don't have much time today, so until next time,
here we come ten ticket ride. Going up!
Tuesday, November 16, 2010
Friday, November 5, 2010
And now for the rest of the story...
Just a quick recap from last time - Simon took a long time to be born, but when he did he came fast, we found out he had Down Syndrome and that was a huge shock, and we had pizza and I was tired.
So there we were we were supposed to be at home enjoying our wonderful baby in the peace and quiet of our condo. The biggest decision I was supposed to be making was when to bring Elizabeth back home. And instead we were in the hospital sleeping in a very uncomfortable bed and an even more uncomfortable chair bed. Simon was in the NICU and was going to be there from a couple of days to a couple of weeks. This did not impress me at all. I like to know things and not be given an approximate time frame. I had waited nine months for this baby to come home with us and now we were told we were going to have to wait even longer.
We were met the next day by a couple of hospital staff. The hospital pediatrician stopped by to talk with both Andrew and I, but Andrew wasn't there at that time so I was thrown into the primary caregiver job. (That's what a mom is anyway, but this was different.) I took notes and heard a few dreaded words. "Kids with Down Syndrome are notoriously poor eaters." I wanted to cry. Our daughter had given me a lot of grief when she was a baby because she had candida problems. I told myself when I was pregnant with Simon that as long as he was a good eater I would be okay if he was a terrible sleeper. I guess I am (was) supposed to learn something in all this. PATIENCE! Oh bother.
The next hospital person that came to see both of us was the hospital social worker. She was a dear. Very straightforward and very kind. She told us two things that I remember vividly. She said, "You won't do Simon any good if you are here burning yourself out. You need to rest and you need to spend time with your daughter. If I see you here too often I will send you home." We appreciated that, and she did hold us to that. The second thing that she told us is so very true of our lives since Simon was born. She told us, "You know when you go to the Ex (The Red River Exhibition for you non-Manitobans) you can tell how scary a ride is going to be by how many tickets it takes to ride it. The ferris wheel is only two, where as the drop of doom or the zipper is six or eight. You are going on a ten ticket ride. Things will come up and you will be reminded that this is a ten ticket ride." That rang true for me on many occasions. That was exactly how we felt when the doctors told us he had a hole in is heart and would need open heart surgery within the first year of life. A ten ticket ride. No one asked me if I wanted to go on the ride. No one warned me what was coming up. We were riding this roller coaster blindfolded and no one else had been on this ride before to tell us how great or terrible it was. The triple loop? Surprise! The drop of doom? Surprise! I wanted to get off this crazy roller coaster and go back to the ferris wheel.
Through all of this craziness that we all of a sudden had to adjust to, I was waking up every three hours at night to pump. This was very important to me. Simon was still in the hospital and I was at home. If he was going to have all of these huge challenges in life, I was going to give him the best thing for him the give him antibodies and immunity and everything else that God designed mother's milk to be. That was my thing that I could do for him.
The next few weeks were a blur of sleeping, eating, pumping, going to and from the hospital, phoning people to look after Elizabeth and arranging rides for the next day. Andrew was exhausted and so was Elizabeth. I am still amazed that she handled everything so well. She went from spending every day with me, to going to a different house everyday, sometimes with people she hardly knew. It was a huge blessing that she rolled with the punches. We all rolled, and we all waited for Simon to come home.
In some respects waiting was almost as hard as all of the feeding challenges for me. Every day we would go to the hospital and wait to hear what the doctors would say in rounds. I would try my hardest to get Simon to nurse or bottle feed the appropriate amount. We didn't get a lot of sleep. Andrew would help out by being available to sterilize the pump parts so that I could go to bed those twenty minutes earlier.
As the days turned into weeks my frustration mounted. When would he be coming home? This past week I was hit on Tuesday by what had happened a year ago on that day. After watching other babies come and go in the NICU we were waiting for our time to come. On my birthday one the of the neonatologists asked, "What if Simon could handle an indwelling tube?" My hopes were up like a dog's ears when you ask if he wants to go for a walk. Home? Did she say home? Tube? Whatever. Home?
Previously they had tried to do an indwelling tube on a night shift and Simon had apparently not tolerated it at all. I couldn't blame him. Who wants a tube stuck up their nose? I was angry too. I thought that would make it easier for the nurses to save time and just tube feed him instead of bothering to try bottle feeding. That would mean it would take him even longer to learn how to eat properly. But now! Now an indwelling tube meant home. We could do that. No problem.
We talked about what that would mean for us. I would have to learn to put the tube in myself in case it came out in the middle of the night. Okay, Home? I think that if Simon hadn't been in the hospital for that long I would have balked at the idea of threading a tube up his nostril down his throat into his stomach. As it was it meant he could come home. All I had to do was successfully put the tube in three times and my part would be done. All Simon had to do was pass the car seat test which meant sit in his car seat and not have his sats (blood oxygen levels) dip below a certain point. Not a problem. He did the car seat test with flying colors, and also gave me an extra chance to put the tube in. He managed to pull the tube out while he was doing the car seat test. Sneaky boy.
Finally I had done it four times! The first time my hands were clammy, I was sweating and babbling to the nurses around me. I was so nervous, but it only took two tries and it was in. It was easier than I thought and with a few tips from the nurses it was easy enough for me to do on my own. I did still have to have someone position his head for me, but at the end I found I could hold him on my own too.
That was it! I spent the night in the isolation room in the NICU and then the next day we were sent home. Ten ticket ride here we come.
So there we were we were supposed to be at home enjoying our wonderful baby in the peace and quiet of our condo. The biggest decision I was supposed to be making was when to bring Elizabeth back home. And instead we were in the hospital sleeping in a very uncomfortable bed and an even more uncomfortable chair bed. Simon was in the NICU and was going to be there from a couple of days to a couple of weeks. This did not impress me at all. I like to know things and not be given an approximate time frame. I had waited nine months for this baby to come home with us and now we were told we were going to have to wait even longer.
We were met the next day by a couple of hospital staff. The hospital pediatrician stopped by to talk with both Andrew and I, but Andrew wasn't there at that time so I was thrown into the primary caregiver job. (That's what a mom is anyway, but this was different.) I took notes and heard a few dreaded words. "Kids with Down Syndrome are notoriously poor eaters." I wanted to cry. Our daughter had given me a lot of grief when she was a baby because she had candida problems. I told myself when I was pregnant with Simon that as long as he was a good eater I would be okay if he was a terrible sleeper. I guess I am (was) supposed to learn something in all this. PATIENCE! Oh bother.
The next hospital person that came to see both of us was the hospital social worker. She was a dear. Very straightforward and very kind. She told us two things that I remember vividly. She said, "You won't do Simon any good if you are here burning yourself out. You need to rest and you need to spend time with your daughter. If I see you here too often I will send you home." We appreciated that, and she did hold us to that. The second thing that she told us is so very true of our lives since Simon was born. She told us, "You know when you go to the Ex (The Red River Exhibition for you non-Manitobans) you can tell how scary a ride is going to be by how many tickets it takes to ride it. The ferris wheel is only two, where as the drop of doom or the zipper is six or eight. You are going on a ten ticket ride. Things will come up and you will be reminded that this is a ten ticket ride." That rang true for me on many occasions. That was exactly how we felt when the doctors told us he had a hole in is heart and would need open heart surgery within the first year of life. A ten ticket ride. No one asked me if I wanted to go on the ride. No one warned me what was coming up. We were riding this roller coaster blindfolded and no one else had been on this ride before to tell us how great or terrible it was. The triple loop? Surprise! The drop of doom? Surprise! I wanted to get off this crazy roller coaster and go back to the ferris wheel.
Through all of this craziness that we all of a sudden had to adjust to, I was waking up every three hours at night to pump. This was very important to me. Simon was still in the hospital and I was at home. If he was going to have all of these huge challenges in life, I was going to give him the best thing for him the give him antibodies and immunity and everything else that God designed mother's milk to be. That was my thing that I could do for him.
The next few weeks were a blur of sleeping, eating, pumping, going to and from the hospital, phoning people to look after Elizabeth and arranging rides for the next day. Andrew was exhausted and so was Elizabeth. I am still amazed that she handled everything so well. She went from spending every day with me, to going to a different house everyday, sometimes with people she hardly knew. It was a huge blessing that she rolled with the punches. We all rolled, and we all waited for Simon to come home.
In some respects waiting was almost as hard as all of the feeding challenges for me. Every day we would go to the hospital and wait to hear what the doctors would say in rounds. I would try my hardest to get Simon to nurse or bottle feed the appropriate amount. We didn't get a lot of sleep. Andrew would help out by being available to sterilize the pump parts so that I could go to bed those twenty minutes earlier.
As the days turned into weeks my frustration mounted. When would he be coming home? This past week I was hit on Tuesday by what had happened a year ago on that day. After watching other babies come and go in the NICU we were waiting for our time to come. On my birthday one the of the neonatologists asked, "What if Simon could handle an indwelling tube?" My hopes were up like a dog's ears when you ask if he wants to go for a walk. Home? Did she say home? Tube? Whatever. Home?
Previously they had tried to do an indwelling tube on a night shift and Simon had apparently not tolerated it at all. I couldn't blame him. Who wants a tube stuck up their nose? I was angry too. I thought that would make it easier for the nurses to save time and just tube feed him instead of bothering to try bottle feeding. That would mean it would take him even longer to learn how to eat properly. But now! Now an indwelling tube meant home. We could do that. No problem.
We talked about what that would mean for us. I would have to learn to put the tube in myself in case it came out in the middle of the night. Okay, Home? I think that if Simon hadn't been in the hospital for that long I would have balked at the idea of threading a tube up his nostril down his throat into his stomach. As it was it meant he could come home. All I had to do was successfully put the tube in three times and my part would be done. All Simon had to do was pass the car seat test which meant sit in his car seat and not have his sats (blood oxygen levels) dip below a certain point. Not a problem. He did the car seat test with flying colors, and also gave me an extra chance to put the tube in. He managed to pull the tube out while he was doing the car seat test. Sneaky boy.
Finally I had done it four times! The first time my hands were clammy, I was sweating and babbling to the nurses around me. I was so nervous, but it only took two tries and it was in. It was easier than I thought and with a few tips from the nurses it was easy enough for me to do on my own. I did still have to have someone position his head for me, but at the end I found I could hold him on my own too.
That was it! I spent the night in the isolation room in the NICU and then the next day we were sent home. Ten ticket ride here we come.
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