We left the hospital at about 5pm, yesterday. Josiah seemed to know he was going home. As he was wheeled out in his stroller, he was fascinated looking around. In his car seat, he fell asleep quickly and slept until we reached home.
Jesse (the oldest) was watching out the window when we arrived home. We were met by both boys as we came up our staircase. The boys were happy to see Mama. They were happy to see their baby brother. I showed Jesse Josiah's 'zipper' (aka scar, as Daddy calls it).
Josiah ate well and fell asleep around 9pm. He proved happy to be home; he slept until 6am.
Josiah's voice seems stronger than ever. He is eating well; he even burps after feeds (something he never did before). He looks great.
We have to schedule another sedated echo cardiogram for later in the week, just to be sure the surgery 'stuck'. We have every reason to believe that it did :) In a week or so, we fill follow-up with the pediatrician. It was fun reading Josiah's discharge papers. They suggest a child who used to have heart disease (past tense). They suggest a child lacking a heart murmur (what a great thing!). Josiah's labs were perfect, all numbers falling within normal limits. They suggest a child with a history of failure to thrive (which we do not anticipate to be a continued problem). They suggest a child who's broken heart was made whole. What a miracle <3.
I had fun playing with the other boys last night. They were both pleased to have Mama sing and read to them before bed. Our night-time routine was back; normalcy had been returned.
The week continues as normal. James's EI worker will come to play with him this morning (something he greatly enjoys). Jesse's back to preschool (and pleased about it). We will take the younger boys to playgroup later in the week.
It's nice to be home. Everything just feels right :)
Showing posts with label heart murmur. Show all posts
Showing posts with label heart murmur. Show all posts
Monday, January 30, 2012
Sunday, January 8, 2012
Cardiology with unexpected results
Yesterday, I brought Josiah to the cardiologist for a routine evaluation.
At 12 wks gestation, we learned that Josiah had a hole in his heart (ventricular septal defect (VSD)). At wk 18 gestation, we were told that the hole had closed on it's own. Just to be sure, we made an appt at an Advanced Fetal Care Center. There, they performed another ultrasound and confirmed that no holes were present. We were thrilled.
At birth, a heart murmur was detected but was gone the next day.
Approximately 3 wks ago, the pediatrician detected the heart murmur again. He referred us to the cardiology clinic affiliated with the Children's Hospital. Given the previous ultrasounds and EKG's (which all looked good), we were not concerned.
As a side note, Josiah developed a respiratory infection about 10 days ago. He was subsequently admitted to the Children's Hospital for one night. There is an assumption of RSV, though he was never formally tested.
Yesterday, I took Josiah to his scheduled appointment with the cardiologist. The MD noted the rapid breathing and chest congestion, not surprising given the respiratory infection. They performed an echo cardiogram. The MD read the results, came in, asked me a few questions.......then the three pieces of news.
1. The original hole (VSD) in Josiah's heart never fully closed. They are able to see how large it was, the portion that his own tissue covered, and the hole that still remains. I am told this is mild-moderate in size.
2. Josiah also has an atrial septal defect (ASD). I am told this is mild-moderate in size.
3. Most concerning, the right side of Josiah's heart is quite enlarged. The right side of the heart is the side responsible for pumping air to the lungs. It is hoped that his heart has been working harder due to the respiratory infection. If that proves true, the heart should decrease in size once the infection clears up.
The positives: Josiah has not fever, is eating well, sleeping well, and not sweating during feeds. His oxygenation level is good (avg 97/98) and blood pressure is good.
Teary-eyed, I went to the pediatrician immediately afterwards. Josiah was given a nebulizer treatment in the office, which seemed to improve his airflow. We were given a nebulizer to bring home. We will use this three times per day for the next ten days.
We have a follow up early next week with the pediatrician.
We have a follow up appointment scheduled at the Children's Hospital in two weeks. They will perform another echo cardiogram and compare the two. We are keeping our fingers crossed that a marked improvement will be evident.
At 12 wks gestation, we learned that Josiah had a hole in his heart (ventricular septal defect (VSD)). At wk 18 gestation, we were told that the hole had closed on it's own. Just to be sure, we made an appt at an Advanced Fetal Care Center. There, they performed another ultrasound and confirmed that no holes were present. We were thrilled.
At birth, a heart murmur was detected but was gone the next day.
Approximately 3 wks ago, the pediatrician detected the heart murmur again. He referred us to the cardiology clinic affiliated with the Children's Hospital. Given the previous ultrasounds and EKG's (which all looked good), we were not concerned.
As a side note, Josiah developed a respiratory infection about 10 days ago. He was subsequently admitted to the Children's Hospital for one night. There is an assumption of RSV, though he was never formally tested.
Yesterday, I took Josiah to his scheduled appointment with the cardiologist. The MD noted the rapid breathing and chest congestion, not surprising given the respiratory infection. They performed an echo cardiogram. The MD read the results, came in, asked me a few questions.......then the three pieces of news.
1. The original hole (VSD) in Josiah's heart never fully closed. They are able to see how large it was, the portion that his own tissue covered, and the hole that still remains. I am told this is mild-moderate in size.
2. Josiah also has an atrial septal defect (ASD). I am told this is mild-moderate in size.
3. Most concerning, the right side of Josiah's heart is quite enlarged. The right side of the heart is the side responsible for pumping air to the lungs. It is hoped that his heart has been working harder due to the respiratory infection. If that proves true, the heart should decrease in size once the infection clears up.
The positives: Josiah has not fever, is eating well, sleeping well, and not sweating during feeds. His oxygenation level is good (avg 97/98) and blood pressure is good.
Teary-eyed, I went to the pediatrician immediately afterwards. Josiah was given a nebulizer treatment in the office, which seemed to improve his airflow. We were given a nebulizer to bring home. We will use this three times per day for the next ten days.
We have a follow up early next week with the pediatrician.
We have a follow up appointment scheduled at the Children's Hospital in two weeks. They will perform another echo cardiogram and compare the two. We are keeping our fingers crossed that a marked improvement will be evident.
Saturday, December 31, 2011
1st Hospitalization
As it usually happens, all three boys have colds. First one gets it, then the next, then the next. Carl and I never seem to escape either. So, for about a month, the two older boys have had runny noses and ultimately coughs. Carl and I have had the same. Wednesday night, Josiah developed a cough. Luckily none of them have fevers. We made the decision to have the two younger ones checked out at the docs. We were most concerned with Josiah given his young age and the DS (as we've read DS kids are more prone to respiratory infection).
Friday morning, we packed up and headed to the pediatrician. The concern for Josiah became quickly apparent. Given the DS, undiagnosed heart murmur, labored breathing, and upcoming long-holiday weekend, the MD gave his recommendation: Go to Children's and have him checked out there.
We packed up the van (again) and headed to Boston. We arrived at the e.r. and were seen quickly (as the MD had called ahead). After a short examination, they decided to admit our little man. We were brought to a floor relatively quickly. They assessed, re-assessed, and came up with their plan: Monitor his breathing, be sure his lungs don't collapse, monitor vitals, provide nebulizer treatments, see what the morning brings. Carl eventually left with the two older boys (they got an overnight at Grammie's :), and I stayed with Josiah.
We had a double-room. Josiah's little room-mate was a cutie pie...all 15 lbs of him (compared to Josiah's 9 lbs). He was in for a fever & being treated with anti-biotics. It was a small world. Josiah and his new friend were born on the same day, at the same hospital....both admitted to Children's, and placed in the same room. The other Mom was a sweetheart. It was nice to have another Mom to talk to during our stay.
We were lucky. Josiah's vitals remained stable throughout the night. He received three nebulizer treatments but required no additional supports. He slept and ate well throughout the duration. Carl arrived early this a.m. to wait with me. At noon, we were told that Josiah was doing well and could go home. Around 1pm, we received our discharge papers, packed up our little guy, and headed home.
Josiah's little friend got the same good news....they, too, were going home.
I'm so pleased that we'll be ringing in the New Year at home :)
We close out 2011 knowing we are blessed with three happy, strong, healthy little boys.
Friday morning, we packed up and headed to the pediatrician. The concern for Josiah became quickly apparent. Given the DS, undiagnosed heart murmur, labored breathing, and upcoming long-holiday weekend, the MD gave his recommendation: Go to Children's and have him checked out there.
We packed up the van (again) and headed to Boston. We arrived at the e.r. and were seen quickly (as the MD had called ahead). After a short examination, they decided to admit our little man. We were brought to a floor relatively quickly. They assessed, re-assessed, and came up with their plan: Monitor his breathing, be sure his lungs don't collapse, monitor vitals, provide nebulizer treatments, see what the morning brings. Carl eventually left with the two older boys (they got an overnight at Grammie's :), and I stayed with Josiah.
We had a double-room. Josiah's little room-mate was a cutie pie...all 15 lbs of him (compared to Josiah's 9 lbs). He was in for a fever & being treated with anti-biotics. It was a small world. Josiah and his new friend were born on the same day, at the same hospital....both admitted to Children's, and placed in the same room. The other Mom was a sweetheart. It was nice to have another Mom to talk to during our stay.
We were lucky. Josiah's vitals remained stable throughout the night. He received three nebulizer treatments but required no additional supports. He slept and ate well throughout the duration. Carl arrived early this a.m. to wait with me. At noon, we were told that Josiah was doing well and could go home. Around 1pm, we received our discharge papers, packed up our little guy, and headed home.
Josiah's little friend got the same good news....they, too, were going home.
I'm so pleased that we'll be ringing in the New Year at home :)
We close out 2011 knowing we are blessed with three happy, strong, healthy little boys.
Friday, December 23, 2011
MD visit and PT introduction
The last couple of weeks have been busy as we prepare for Christmas. We completed our shopping tonight (we think). Tomorrow is dedicated to baking desserts, then wrapping gifts. Saturday is our annual Christmas Eve celebration with family, then xmas day :) I said to Carl the other day, "Isn't there something magical about watching Christmas through the eyes of a child." He agreed.
Josiah went to the MD on Tuesday for his official 2-month check up. On our last appt (11/17), he weighed 7.10oz. Tuesday, he weighed 9.14oz. That's a 20oz weight gain in about 4 weeks. The MD actually said he was "pleased" with the weight gain (we laughed previously as he's a bit of an alarmist, at times). He's gaining sufficiently and he's primarily breastfed. That's great news.
The MD did detect a heart murmur. We're not really concerned about it. While pregnant, they discovered that Josiah had a hole in his heart (a VSD). Matter-of-fact, that was one of the first "red flags" to the DS. A few weeks later, the hole had disappeared. Just to be certain, we made an appt at the advanced fetal care center @ the Children's Hospital. They spent about 2 hours examining Josiah's heart (in-utero). They confirmed the absence of a hole. They said that a tiny pinhole could still be possible, even though they couldn't see one. The continued by saying that pinholes generally cause no problems and, more often than not, close over time. The day Josiah was born, they detected a heart murmur. However, 2 days later (upon discharge) the murmur was seemingly gone. This was the first time the murmur could be heard again, since his birth. We immediately connected with a cardiologist at Children's. Josiah has an appt in January with cardiology. We're already relieved due to the extensive examination he had while inutero. We believe it can be no more than a pinhole. It's just one more professional to be included on our growing team :)
On Wednesday, the EI PT came out to see Josiah. She's confirmed he definitely has low tone, but primarily in the neck & trunk. His arms and legs are good. So, she will see him monthly (for now). The EI worker will start seeing him weekly and, she too, will work to improve his muscle tone. PT has assured us that she can increase to weekly visits, if they become warranted. Josiah is a strong little boy....he'll get there :)
We are so blessed to have the team of professionals we have. We love each and every one of them. This is an amazing journey. Next month we'll meet the cardiologist & schedule Josiah's new baby visit at the DS clinic. In the meanwhile, xmas is in three days....a four year old, a two year old, and 10-week old Josiah - it doesn't get any better than this.
Happy Holidays to all!
Josiah went to the MD on Tuesday for his official 2-month check up. On our last appt (11/17), he weighed 7.10oz. Tuesday, he weighed 9.14oz. That's a 20oz weight gain in about 4 weeks. The MD actually said he was "pleased" with the weight gain (we laughed previously as he's a bit of an alarmist, at times). He's gaining sufficiently and he's primarily breastfed. That's great news.
The MD did detect a heart murmur. We're not really concerned about it. While pregnant, they discovered that Josiah had a hole in his heart (a VSD). Matter-of-fact, that was one of the first "red flags" to the DS. A few weeks later, the hole had disappeared. Just to be certain, we made an appt at the advanced fetal care center @ the Children's Hospital. They spent about 2 hours examining Josiah's heart (in-utero). They confirmed the absence of a hole. They said that a tiny pinhole could still be possible, even though they couldn't see one. The continued by saying that pinholes generally cause no problems and, more often than not, close over time. The day Josiah was born, they detected a heart murmur. However, 2 days later (upon discharge) the murmur was seemingly gone. This was the first time the murmur could be heard again, since his birth. We immediately connected with a cardiologist at Children's. Josiah has an appt in January with cardiology. We're already relieved due to the extensive examination he had while inutero. We believe it can be no more than a pinhole. It's just one more professional to be included on our growing team :)
On Wednesday, the EI PT came out to see Josiah. She's confirmed he definitely has low tone, but primarily in the neck & trunk. His arms and legs are good. So, she will see him monthly (for now). The EI worker will start seeing him weekly and, she too, will work to improve his muscle tone. PT has assured us that she can increase to weekly visits, if they become warranted. Josiah is a strong little boy....he'll get there :)
We are so blessed to have the team of professionals we have. We love each and every one of them. This is an amazing journey. Next month we'll meet the cardiologist & schedule Josiah's new baby visit at the DS clinic. In the meanwhile, xmas is in three days....a four year old, a two year old, and 10-week old Josiah - it doesn't get any better than this.
Happy Holidays to all!
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