Bobby is going through one of those really fun phases where it seems he's doing something new every day. The biggest news is that he's started learning his consonants. He began with a 'ba' that now gets turned into 'da da' and some other unidentified noises. But its a huge breakthrough. We've spent months repeating the basic sounds to him (ba,ma,da,ka) and now he's gotten in. We're all very proud.
He's gotten much stronger since surgery. He's now able to lay on his tummy, put his weight on his forearms and play a little bit. He got a jumperoo for his birthday and he's done really with that - he is getting better at putting weight on his feet and is starting to strengthen his trunk when he's sitting up. He's learning to hold his arms in the air and make controlled movements. He's started showing some understanding of object permanence. He can bang two blocks together. These are all huge.
One of the best things about watching a boy like Bobby grow up is that we notice all of the little milestones. I don't think most baby books have a spot to indicate when a child moves from using a primitive grasp to a Palmer grasp. But we noticed when Bobby made that move. Banging two blocks together isn't just a child's game - it takes good motor skills and coordination. We are practicing rolling over, tummy to back, back to tummy. It takes a lot of practice and a lot of coordinated movements. And it will be a huge moment for our entire family when he can do it alone.
Otherwise, we've had many doctor appointments. Bobby will get a g-tube and a nissen fundoplication sometime in the next few weeks. The g-tube is a feeding tube that goes directly into the stomach. It will get all of the tubes out of his nose while he's learning to eat by himself. The nissen is a procedure to tighten the sphincter at the top of the stomach so that he won't reflux. This will allow us to eventually take him off continuous feeds and have regular meal times again. It will also keep his lungs healthier because he won't be aspirating.
Bobby has an echo later this week to see how his heart is doing and to see if his blood clot is gone. If it is, he will be cleared for surgery. If its not, we'll have to work with the doctors on next steps. Its possible but not ideal to have the surgery while he's still on blood thinners.
We had a swallow study. This is an xray test where they take a video of what happens in Bobby's mouth and throat when he eats. They confirmed that its safe for him to eat purees - he has enough control that the food is not going down the wrong way. Liquids are another story for now - there is some risk of aspiration so we will use thickener and proceed very slowly.
He missed his hearing test because of a ear infection. We will reschedule as soon as we get the all clear from the ENT.
In the meantime, we're off to the eye doctor today. Bobby needs surgery to correct his crossed eye and we're hoping to schedule that as part of the nissen/gtube.
Wow! And this is what we go through when Bobby is on the upswing.
4/28/09
4/12/09
Sick Little Bunny
Unfortunately, our Easter plans for the weekend have not come true as Bobby has been sick. We think its a cold/upset tummy/teething kind of thing. He's been very congested and when he gets congested he tends to reflux more and when he refluxes all hell breaks loose. After a very long night he's been able to get some sleep today and even dress up in his easter suit for a few pictures. He has been on Pedialyte all day so the real test will be tonight when he gets some formula.
Still, things are looking up. He had a great week in therapy. He had some sort of therapy four days last week and he exceeded everyone's expectations in terms of how long he was able to work. He seems happy to be active again. I think he really likes our new emphasis on talking games - once that boy figures out how to make a few consonants I expect our days of quiet Sunday afternoons are forever gone.
Valerie and I agree that we have times with Bubby now where he is happier and feels better than he ever has in his life. He is smiling more every day and is really becoming vocal and social. He's such a sweet boy. One of our favorite new things that he does is lightly scratch our arms or under our chin when we hold him. Adorable.
He had a pediatrician check up and we found out that he's gained half a pound since being home. He's on fewer than the recommended calories so the good weight gain is great news. He's also, for the first time in his life, on the same 50% Down Syndrome growth curve for height and weight. Up until now he's always been on the 25% curve for length. This is another great sign that he's getting the nutrition he needs. Given our troubles with reflux and feeding tubes its amazing that he's done so well. But, then, if I know about anything, I know how to pack some pounds on.
The next 2 weeks are crazy busy. Tuesday we're going to see a pediatrician who specializes in Oriental Medicine. We're hoping he can help with some of the reflux and congestion issues. Wednesday he has a swallow study where he will be xrayed as he eats a few bites. This will help our speech therapist determine if he is in danger of aspirating while he eats. Next week is our consult for the g-tube, his cardiology appointment, and his sedated hearing test. Plus, he has to get blood drawn once a week because he's still on Coumadine for his blood clot. Thank goodness he has such a great nanny to help with all of this.
Still, things are looking up. He had a great week in therapy. He had some sort of therapy four days last week and he exceeded everyone's expectations in terms of how long he was able to work. He seems happy to be active again. I think he really likes our new emphasis on talking games - once that boy figures out how to make a few consonants I expect our days of quiet Sunday afternoons are forever gone.
Valerie and I agree that we have times with Bubby now where he is happier and feels better than he ever has in his life. He is smiling more every day and is really becoming vocal and social. He's such a sweet boy. One of our favorite new things that he does is lightly scratch our arms or under our chin when we hold him. Adorable.
He had a pediatrician check up and we found out that he's gained half a pound since being home. He's on fewer than the recommended calories so the good weight gain is great news. He's also, for the first time in his life, on the same 50% Down Syndrome growth curve for height and weight. Up until now he's always been on the 25% curve for length. This is another great sign that he's getting the nutrition he needs. Given our troubles with reflux and feeding tubes its amazing that he's done so well. But, then, if I know about anything, I know how to pack some pounds on.
The next 2 weeks are crazy busy. Tuesday we're going to see a pediatrician who specializes in Oriental Medicine. We're hoping he can help with some of the reflux and congestion issues. Wednesday he has a swallow study where he will be xrayed as he eats a few bites. This will help our speech therapist determine if he is in danger of aspirating while he eats. Next week is our consult for the g-tube, his cardiology appointment, and his sedated hearing test. Plus, he has to get blood drawn once a week because he's still on Coumadine for his blood clot. Thank goodness he has such a great nanny to help with all of this.
4/7/09
Birthday Week
In the true spirit of all things Bobby, we have had a very exciting birthday week.
Last Tuesday the Bubs had a pretty rough day - lots of reflux and gagging. We were afraid his feeding tube had become dislodged so we took him to the ER. 7 hours later we were home, having found out that a) nothing was up with the feeding tube and b) Bobby had a previously undiagnosed heart murmur.
Wednesday he went for his regularly scheduled surgical follow up. They did an echo and found nothing nothing wrong with his heart - just some 'trivial valve regurge', meaning his tricuspid valve is leaking a little bit, but its in the range of normal. The murmur? The APN thinks that its been there a while but his breathing is so much lighter the murmur is now apparent.
Friday we said bye-bye to the oxygen cannula. So nice to be tied to one less thing!
Saturday was the big day! We went to Bubbles Academy, a music school where he took classes pre-surgery. We did a walk in class to celebrate his birthday. He had a fabulous time. He rode in their toy car. We danced. We played with rubber ducks and scarves. His mamas argued over who was getting to do more activities with him. And then we played with bubbles.
After lunch and a nap, I put together his present - a jumperoo. We've avoided getting him one because his physical therapist doesn't like them (she wants him working hard all the time, something we don't believe a year old guy needs to do). He liked it much better than I thought he might - I had expected an adjustment period. He particularly is happy as long as mama was bouncing his seat.
It was a lovely day. We'll have part 2 of his birthday in a couple of weeks when Grandma comes to visit us. I just couldn't get my act together for his mini party in time for the weekend.
Sunday was a rougher day. His chest hurts him when he coughs or sneezes - not surprising for a boy who had his sternum torn apart 7 weeks ago. But over the weekend, every cough became a 20 minute crying jag that led to reflux and his oxygen saturations coming down. His voice was raspy with congestion. We didn't know what to do.
Monday we decided we had to do something. So, we pulled out his tube and Nanny Beth took him to the ER to a) get a smaller tube that would obstruct his throat less b) get deep suctioned, where they put a tube in his nose/throat and suction out all of the mucous. Apparently, he had enough mucous that the nurse actually called someone to witness how much stuff was coming out of his system.
One or both of those things seemed to do the trick. He is much happier. Now, coughs and sneezes cause winces, not meltdowns. His breathing is much clearer. We had a condo meeting at our place last night and he was bubbly. He got fussy at the end, but I was beginning to feel fussy myself, so who can blame him.
This week is his first week of a full therapy schedule - speech 2x, ot 1x, pt 1x. He's getting a swallow study done next Monday to make sure that it is safe for him to eat (make sure he's not aspirating). He still has to have a sedated hearing test this month and his g-tube put in next month. But then I'm hopeful we'll get a break from so many doctor's appointments and spend the summer having fun.
Last Tuesday the Bubs had a pretty rough day - lots of reflux and gagging. We were afraid his feeding tube had become dislodged so we took him to the ER. 7 hours later we were home, having found out that a) nothing was up with the feeding tube and b) Bobby had a previously undiagnosed heart murmur.
Wednesday he went for his regularly scheduled surgical follow up. They did an echo and found nothing nothing wrong with his heart - just some 'trivial valve regurge', meaning his tricuspid valve is leaking a little bit, but its in the range of normal. The murmur? The APN thinks that its been there a while but his breathing is so much lighter the murmur is now apparent.
Friday we said bye-bye to the oxygen cannula. So nice to be tied to one less thing!
Saturday was the big day! We went to Bubbles Academy, a music school where he took classes pre-surgery. We did a walk in class to celebrate his birthday. He had a fabulous time. He rode in their toy car. We danced. We played with rubber ducks and scarves. His mamas argued over who was getting to do more activities with him. And then we played with bubbles.
After lunch and a nap, I put together his present - a jumperoo. We've avoided getting him one because his physical therapist doesn't like them (she wants him working hard all the time, something we don't believe a year old guy needs to do). He liked it much better than I thought he might - I had expected an adjustment period. He particularly is happy as long as mama was bouncing his seat.
It was a lovely day. We'll have part 2 of his birthday in a couple of weeks when Grandma comes to visit us. I just couldn't get my act together for his mini party in time for the weekend.
Sunday was a rougher day. His chest hurts him when he coughs or sneezes - not surprising for a boy who had his sternum torn apart 7 weeks ago. But over the weekend, every cough became a 20 minute crying jag that led to reflux and his oxygen saturations coming down. His voice was raspy with congestion. We didn't know what to do.
Monday we decided we had to do something. So, we pulled out his tube and Nanny Beth took him to the ER to a) get a smaller tube that would obstruct his throat less b) get deep suctioned, where they put a tube in his nose/throat and suction out all of the mucous. Apparently, he had enough mucous that the nurse actually called someone to witness how much stuff was coming out of his system.
One or both of those things seemed to do the trick. He is much happier. Now, coughs and sneezes cause winces, not meltdowns. His breathing is much clearer. We had a condo meeting at our place last night and he was bubbly. He got fussy at the end, but I was beginning to feel fussy myself, so who can blame him.
This week is his first week of a full therapy schedule - speech 2x, ot 1x, pt 1x. He's getting a swallow study done next Monday to make sure that it is safe for him to eat (make sure he's not aspirating). He still has to have a sedated hearing test this month and his g-tube put in next month. But then I'm hopeful we'll get a break from so many doctor's appointments and spend the summer having fun.
4/4/09
4/3/09
Birthday Eve
Tomorrow is a very big day in the Grunsted household. Bubsy is turning one! No exclamatory phrase I might use to describe the big day is going to do justice to what's happened in the last year. Or do justice to the drama surrounding how he got here.
A year ago today Valerie was 38 weeks pregnant. Bubsy had quit cooperating with the non stress tests several weeks earlier so we were doing weekly ultrasounds to check on him. Until April 3rd, the tests had been uneventful.
On this day, we went about our routine. Valerie laid on the table; I sat next to her, holding her hand. The ultrasound tech put the lotion on Valerie's tummy and turned to the screen to check Bobby's movement. Almost immediately, she stood up and ran from the room saying she needed to get a doctor. I asked what was wrong. "His heart rate is 63," she said with a shaking voice. A soon to be born baby's heart rate should be well into the 100s.
Valerie and I sat, waiting, not saying a word. All I could think was that we were going to lose Bobby. After all the excitement, the worry about his heart condition, the fear about the Down Syndrome, he would never be born. My heart went blank.
The tech came back with a doctor. He calmly checked the fetal heart rate - it was now 110. "He must be lying on the umbilical cord," he said. "That's what controls the heart rate."
"There's an 80% chance you're not leaving the hospital pregnant," he told us. My fear subsided as he explained that the situation was not critical, but at 38 weeks, why take a chance?
Valerie was wheeled to the labor floor, where we were placed in an observation unit and our ob/gyn, Dr. Saleh was paged. He was on call that night, a blessing for us because he did not just show up minutes before the birth but was close by all night.
Valerie was hooked up to various monitors and we sat and we waited. At that point, I had no idea that I'd spend much of the next year staring at the blips and waves of various monitors. Things calmed. Bobby's heart rate settled into the mid 100s. I began to think we'd be part of the 20% that got sent home. Then, the heart rate on the monitor dipped againg, right back in the 60s.
Immediately, Valerie's bed was surrounded by doctors and nurses. I stood just outside watching. She was moved from one side to the other as they worked to free the umbilical cord. A nurse placed an oxygen mask over Valerie's mouth, telling her to 'breathe for your baby'. And then as suddenly as it had fallen, the heart rate went back up.
Dr. Saleh arrived at the hospital then, calmly assessed the situation and offered, 'how'd you like to have a baby today'. His demeanor brought me back from the brink. A few minutes later our labor nurse, Lynn, came in and introduced herself. To me she said, 'Try not to panic'. I suppose the stench of fear was all over me.
We were given a labor room and Valerie got a shot of Pitosin to start contractions. The labor itself is really her story to tell. She was brave. I did my best to help. And Bobby's heart rate kept falling. All through the evening into the early hours Lynn came into the room every time his heart rate fell, repositioning Valerie until things stabilized. The stress of the heart rate fluctuations amid Valerie's contractions was nerve wracking - I wanted Bobby here. I wanted a C-section. But I kept thinking of Lynn's words of wisdom 'try not to panic'.
Around midnight Valerie asked for an epideral. That turned out to be the thing that kept us from a C-section, I think. She relaxed when she got the shot and Bobby took a breather as well. I stared at more monitors. For several hours all was quiet while Valerie finished her contractions.
At 6 am Dr. Saleh decided it was time to push. Suddenly, our lonesome little labor room was filled with nurses and neonatologists. Lynn's shift was up which made me sad - after spending the night helping us, she missed the big moment.
And it was a big moment. Valerie pushed and screamed. I encouraged her every time she pushed but I could tell she was only listening to Dr. Saleh and the occasional encouragment he gave her after a particularly fruitful push. She knew he was getting her to the end. Bobby's head was soon visible. Amazing. And then at the last minute his heart rate dipped one last time. "He has to come now," Dr. Saleh said, and he called for the vacuum. That worked the first time, Bobby, cone head and all came out, wrapped in a tiny ball. He let out a wonderful cry.
Immediately he was passed to the neonatologist, surrounded by her students. I stood by Valerie, waiting and watching Bobby, amazed at how big he looked once he was stretched out. And I looked to see if he had Down Syndrome. We had been told our changes were greater than 50/50 and in our hearts Valerie and I both believed he had Ds, but still, I hoped. I heard the neonatologist reciting symptoms to her students, 'short appendages, flat nose, low muscle tone...' One of the students was looking at me pitingly. It pissed me off. "Don't pity me on the day my son is born," I thought.
I walked over to the doctor. "Does he have Down Syndrome?" I asked.
"He has the signs, yes," she answered.
"That's what we thought," I answered, smiling.
I gave the news to Valerie who absorbed it without a reaction. She was too busy watching as the nurses brought Bubsy to her. She held him face to face for a few moments. The sun of the new day shined on them both. All I could think of was that he looked exactly like his mama. Beautiful. Then away he went.
Echos and exams filled his next few hours. Valerie and I made our phone calls. A new neonatologist visited us, telling us that Bobby was doing well, given his circumstance. Still, it was very scary. A new baby is scary enough. A sick new baby that just kept us up all night worrying about his heart rate...that's a new level of terror. In the face of feeling hopeless to help his medical condition we decided to have him baptized. Whatever else about his future was out of his control, we could make sure we did that for him.
So, the first time I ever held Bobby was the afternoon of April 4th, when I held him as he was baptized. That's a very precious memory to me, welcoming him to our family and the world of faith at the same time. Doing that for my son made me feel like a parent for the first time.
A year ago today Valerie was 38 weeks pregnant. Bubsy had quit cooperating with the non stress tests several weeks earlier so we were doing weekly ultrasounds to check on him. Until April 3rd, the tests had been uneventful.
On this day, we went about our routine. Valerie laid on the table; I sat next to her, holding her hand. The ultrasound tech put the lotion on Valerie's tummy and turned to the screen to check Bobby's movement. Almost immediately, she stood up and ran from the room saying she needed to get a doctor. I asked what was wrong. "His heart rate is 63," she said with a shaking voice. A soon to be born baby's heart rate should be well into the 100s.
Valerie and I sat, waiting, not saying a word. All I could think was that we were going to lose Bobby. After all the excitement, the worry about his heart condition, the fear about the Down Syndrome, he would never be born. My heart went blank.
The tech came back with a doctor. He calmly checked the fetal heart rate - it was now 110. "He must be lying on the umbilical cord," he said. "That's what controls the heart rate."
"There's an 80% chance you're not leaving the hospital pregnant," he told us. My fear subsided as he explained that the situation was not critical, but at 38 weeks, why take a chance?
Valerie was wheeled to the labor floor, where we were placed in an observation unit and our ob/gyn, Dr. Saleh was paged. He was on call that night, a blessing for us because he did not just show up minutes before the birth but was close by all night.
Valerie was hooked up to various monitors and we sat and we waited. At that point, I had no idea that I'd spend much of the next year staring at the blips and waves of various monitors. Things calmed. Bobby's heart rate settled into the mid 100s. I began to think we'd be part of the 20% that got sent home. Then, the heart rate on the monitor dipped againg, right back in the 60s.
Immediately, Valerie's bed was surrounded by doctors and nurses. I stood just outside watching. She was moved from one side to the other as they worked to free the umbilical cord. A nurse placed an oxygen mask over Valerie's mouth, telling her to 'breathe for your baby'. And then as suddenly as it had fallen, the heart rate went back up.
Dr. Saleh arrived at the hospital then, calmly assessed the situation and offered, 'how'd you like to have a baby today'. His demeanor brought me back from the brink. A few minutes later our labor nurse, Lynn, came in and introduced herself. To me she said, 'Try not to panic'. I suppose the stench of fear was all over me.
We were given a labor room and Valerie got a shot of Pitosin to start contractions. The labor itself is really her story to tell. She was brave. I did my best to help. And Bobby's heart rate kept falling. All through the evening into the early hours Lynn came into the room every time his heart rate fell, repositioning Valerie until things stabilized. The stress of the heart rate fluctuations amid Valerie's contractions was nerve wracking - I wanted Bobby here. I wanted a C-section. But I kept thinking of Lynn's words of wisdom 'try not to panic'.
Around midnight Valerie asked for an epideral. That turned out to be the thing that kept us from a C-section, I think. She relaxed when she got the shot and Bobby took a breather as well. I stared at more monitors. For several hours all was quiet while Valerie finished her contractions.
At 6 am Dr. Saleh decided it was time to push. Suddenly, our lonesome little labor room was filled with nurses and neonatologists. Lynn's shift was up which made me sad - after spending the night helping us, she missed the big moment.
And it was a big moment. Valerie pushed and screamed. I encouraged her every time she pushed but I could tell she was only listening to Dr. Saleh and the occasional encouragment he gave her after a particularly fruitful push. She knew he was getting her to the end. Bobby's head was soon visible. Amazing. And then at the last minute his heart rate dipped one last time. "He has to come now," Dr. Saleh said, and he called for the vacuum. That worked the first time, Bobby, cone head and all came out, wrapped in a tiny ball. He let out a wonderful cry.
Immediately he was passed to the neonatologist, surrounded by her students. I stood by Valerie, waiting and watching Bobby, amazed at how big he looked once he was stretched out. And I looked to see if he had Down Syndrome. We had been told our changes were greater than 50/50 and in our hearts Valerie and I both believed he had Ds, but still, I hoped. I heard the neonatologist reciting symptoms to her students, 'short appendages, flat nose, low muscle tone...' One of the students was looking at me pitingly. It pissed me off. "Don't pity me on the day my son is born," I thought.
I walked over to the doctor. "Does he have Down Syndrome?" I asked.
"He has the signs, yes," she answered.
"That's what we thought," I answered, smiling.
I gave the news to Valerie who absorbed it without a reaction. She was too busy watching as the nurses brought Bubsy to her. She held him face to face for a few moments. The sun of the new day shined on them both. All I could think of was that he looked exactly like his mama. Beautiful. Then away he went.
Echos and exams filled his next few hours. Valerie and I made our phone calls. A new neonatologist visited us, telling us that Bobby was doing well, given his circumstance. Still, it was very scary. A new baby is scary enough. A sick new baby that just kept us up all night worrying about his heart rate...that's a new level of terror. In the face of feeling hopeless to help his medical condition we decided to have him baptized. Whatever else about his future was out of his control, we could make sure we did that for him.
So, the first time I ever held Bobby was the afternoon of April 4th, when I held him as he was baptized. That's a very precious memory to me, welcoming him to our family and the world of faith at the same time. Doing that for my son made me feel like a parent for the first time.
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