Josiah was born weighing a healthy 7 lbs - ironically, he weighed more than either of his brothers at birth. However, it didn't take long to see that he simply wasn't gaining weight as readily as his peers. For those of you who have read the blog from the beginning, you know this has been a sensitive issue for me (given that Josiah was/is a breastfed baby). We have persevered. Josiah has done the same. His providers have been patient (I was never willing to stop breastfeeding, only willing to supplement).
'Failure to Thrive' has always been that phrase we didn't want to hear. We didn't want Josiah diagnosed with "failure to thrive." Though it's just a concept, I guess the name sounds so horrific to Carl and I. Despite providers not using it, it still remained. It was the (usually) unspoken truth. I say usually, because hidden on a medical summary somewhere are the words 'history of failure to thrive.' Carl and I have never considered Josiah as failing to thrive. So, I set out to check definitions.
Johns Hopkins refers to failure to thrive in this way: "Children are diagnosed with failure to thrive when their weight or rate of weight gain is significantly below that of other children of similar age and gender. Infants or children that fail to thrive seem to be dramatically smaller or shorter than other children the same age." It goes on to say that failure to thrive can be the result of physical problems (such as Down Syndrome) or environmental problems (such as abuse/neglect).
Ok, fair. I can agree that Josiah does not match the weight of other children his age. I guess it's the phrase that is despised. It feels like it implies something sinister. Perhaps, in some cases it is caused by something sinister.
I've never brought myself to write about this as it's so personal for us. However, yesterday gave me good cause to mention it.
Josiah came down with a fever on Sunday. 101.3. It was late in the afternoon. He was crying non-stop, difficult to console. I finally gave him a small dose of Tylenol and called the pediatrician's office. An RN was on the phone within a few minutes. We agreed, Josiah could wait until morning to be seen.
I knew the pediatrician's office opened at 8:30, so I was up, showered, and dressed by 8. I was watching the clock with the intention of calling them at 8:35. Well, as usual, they beat me to the punch. At 8:15, our phone rang. Sure enough! It was the pediatrician's office calling to see how Josiah was doing. I explained. He fussed off and on during the night. His fever remained when he awoke at 4am. We were given a 9:45am appointment.
At 9am, we were out the door. The big boys were in school allowing Carl & I to take Josiah in alone. Once inside the room, they asked what he currently weighs. Well, you know me - I stopped weighing him at home because I was becoming a bit obsessive about the weight issues lol. So, I gently said "Can we weigh him here?" Minutes later, Josiah was undressed and laying on the scale. I knew that he weighed 15 lbs 3oz on Aug 16th. I watched the scale teeter - I was simply waiting for the end result. OMG! 17lbs 2oz. He did it! He gained 2 lbs in 5 weeks! I almost started dancing in the hallway.
They examined Josiah. Luckily, nothing serious. No ear infections. No respiratory issues. It boils down to a cold/viral thing. Thank goodness! As we were leaving, we stopped in the hallway. The MD passes by smiling. He tells the nurse, "my two failure to thrive kids are both thriving."
"My two failure to thrive kids are both thriving."
I'll take it!
Showing posts with label rn. Show all posts
Showing posts with label rn. Show all posts
Tuesday, September 25, 2012
Monday, February 13, 2012
A Great EI Visit
Josiah met with EI today. His regular worker came out with our new EI RN. Josiah responded well and transitioned nicely. He tolerated positioning and his new friend (RN) nicely. He smiled for his old friend :) His strength and determination is becoming quite evident. He seemed to want to show off his new skills for his friends.
While laying on his back, Josiah showed how nicely he can raise his arms into the air now. He even brought both hands together over his chest. He grasped a small ring and brought it up to the side of his head. He examined it carefully with his eyes. We thought he might bring the ring to his mouth, but it didn't happen. I expect that will happen soon.
Josiah tolerated lying on his right side very well. He grasped his hands together and showed how nicely he could roll from his side to his back, without assistance. The DS developmental chart states 5 months as the typical age for this accomplishment....so he's 1 month ahead. That's great :)
For the first time since surgery, Josiah had some belly time. He tolerated it well. He didn't seem to make any effort to raise his head, but he hasn't had belly time for almost 3 weeks. We have to limit belly time because of his sternum (ie breastbone) which was broken for his open-heart surgery. We've been told his sternum will heal completely within 6 weeks of surgery; we are almost half-way there. In the meanwhile, we have started with 5 minutes of belly time and can expand the time in small increments - as tolerated.
Next week, EI PT returns for a visit. I think she will be impressed with how far he's come since her last visit. I'm excited for that visit.
Tomorrow is Valentine's Day and I am excited to spend it with my four boys (hubby included :) Every day is a new adventure and every minute a blessing <3
While laying on his back, Josiah showed how nicely he can raise his arms into the air now. He even brought both hands together over his chest. He grasped a small ring and brought it up to the side of his head. He examined it carefully with his eyes. We thought he might bring the ring to his mouth, but it didn't happen. I expect that will happen soon.
Josiah tolerated lying on his right side very well. He grasped his hands together and showed how nicely he could roll from his side to his back, without assistance. The DS developmental chart states 5 months as the typical age for this accomplishment....so he's 1 month ahead. That's great :)
For the first time since surgery, Josiah had some belly time. He tolerated it well. He didn't seem to make any effort to raise his head, but he hasn't had belly time for almost 3 weeks. We have to limit belly time because of his sternum (ie breastbone) which was broken for his open-heart surgery. We've been told his sternum will heal completely within 6 weeks of surgery; we are almost half-way there. In the meanwhile, we have started with 5 minutes of belly time and can expand the time in small increments - as tolerated.
Next week, EI PT returns for a visit. I think she will be impressed with how far he's come since her last visit. I'm excited for that visit.
Tomorrow is Valentine's Day and I am excited to spend it with my four boys (hubby included :) Every day is a new adventure and every minute a blessing <3
Sunday, February 12, 2012
4 Months Old
It's been a great weekend. Last night, we had the opportunity to see a dear friend of mine. The boys finally met their "Auntie Natalie." They fell in love with her; the feeling seemed mutual. The older boys mentioned her quite a few times today. Jesse wants to visit her in N.Y.
Today, my parents visited. They just returned from a two-week vacation. The boys were very excited. They waited at the window as the time approached; they waved, knocked, and blew kisses when my parents pulled in the driveway. They do so love their grand-parents. This afternoon, we accomplished numerous errands and made it home just before dark.
For the first time ever, Jesse's homework (he's in preschool) took 2.5 hours. It's amazing to me that preschool homework can be so time consuming. On a positive (even if time-consuming) note, he's now learning to write his name. It's a huge milestone. Jesse has an appointment next month to formally register for kindergarten - I'm not sure where those 5 yrs went lol. The kindergarten registration packet arrived yesterday. We'll fill that out and bring it to the appt. He'll have his eyes/ears checked there - then it will be official. I can't believe he'll be off to K in September.
James is two and exemplifies "terrible two." He's sweet, lovable, sociable, and funny...but oh-my-goodness, he can be maddening!!!
Josiah has had a great weekend. He's eating really well. I'm able to sleep, generally, 5 hours at night before he needs to eat again. So, I'm tired but adjusting well. I can tell he is more comfortable. He's breathing easy and full of smiles these days. He's four months old today. I'm so proud of this amazing little boy <3.
Tomorrow, EI comes to work with him. We'll meet the EI RN tomorrow, as well. We're fortunate to have this amazing team working with our son, who are constantly cheering him (and us) on. I'm hoping to give him a few minutes of belly time tomorrow. I hope he can tolerate it. We're 17 days out of surgery, so I'm hoping his comfort level will allow it. The faster he can return to belly time, the faster he can start to gain strength in his neck (he still needs full support of his neck/head).
I've been reviewing the great DS developmental chart to get a feel for where he stands right now. By the age of four months, according to the chart, DS kids:
We don't have a lot planned this week and, for that, I am grateful. Of course, I'm forever trying to accomplish other projects. They will all be completed.....I simply refuse to stress out about it. Meanwhile, tomorrow is Monday and our amazing adventure continues......
Today, my parents visited. They just returned from a two-week vacation. The boys were very excited. They waited at the window as the time approached; they waved, knocked, and blew kisses when my parents pulled in the driveway. They do so love their grand-parents. This afternoon, we accomplished numerous errands and made it home just before dark.
For the first time ever, Jesse's homework (he's in preschool) took 2.5 hours. It's amazing to me that preschool homework can be so time consuming. On a positive (even if time-consuming) note, he's now learning to write his name. It's a huge milestone. Jesse has an appointment next month to formally register for kindergarten - I'm not sure where those 5 yrs went lol. The kindergarten registration packet arrived yesterday. We'll fill that out and bring it to the appt. He'll have his eyes/ears checked there - then it will be official. I can't believe he'll be off to K in September.
James is two and exemplifies "terrible two." He's sweet, lovable, sociable, and funny...but oh-my-goodness, he can be maddening!!!
Josiah has had a great weekend. He's eating really well. I'm able to sleep, generally, 5 hours at night before he needs to eat again. So, I'm tired but adjusting well. I can tell he is more comfortable. He's breathing easy and full of smiles these days. He's four months old today. I'm so proud of this amazing little boy <3.
Tomorrow, EI comes to work with him. We'll meet the EI RN tomorrow, as well. We're fortunate to have this amazing team working with our son, who are constantly cheering him (and us) on. I'm hoping to give him a few minutes of belly time tomorrow. I hope he can tolerate it. We're 17 days out of surgery, so I'm hoping his comfort level will allow it. The faster he can return to belly time, the faster he can start to gain strength in his neck (he still needs full support of his neck/head).
I've been reviewing the great DS developmental chart to get a feel for where he stands right now. By the age of four months, according to the chart, DS kids:
- smile when touched and talked to (yes!)
- smiles spontaneously (yes!)
- recognizes mother/father (yes!)
- follows object with eyes, in circle (haven't tried that yet - will mention to EI worker)
- reacts to sounds (yes!)
- vocalises to smile and talk (yes!)
We don't have a lot planned this week and, for that, I am grateful. Of course, I'm forever trying to accomplish other projects. They will all be completed.....I simply refuse to stress out about it. Meanwhile, tomorrow is Monday and our amazing adventure continues......
Wednesday, January 25, 2012
Surgery was a SUCCESS
Josiah got his bath at 1:30am. He got his last feeding from 2am-3am. Then, he napped. We left at 5am for the drive into Children's. We arrived at the hospital parking garage at 6:15am and were checked in by 6:45am. First stop, pre-op admitting. We were escorted to the pre-op holding area. Josiah was hungry by then. Luckily, he recently discovered his thumb which was successful at pacifying him :)
At 7:50am, members of the team arrived. Nurse Tom allowed us our hugs/kisses with Josiah then took him from me. He immediately voiced a fondness for our little man. Josiah was given an oral sedative and handled it like a trooper. Nurse Tom wrapped Josiah in his favorite blanket, gave him his favorite stuffed animal, and CARRIED him to the O.R. (that made me smile). Carl & I were escorted to the family waiting area.
The RN liaisons there are wonderful. They made us comfortable, assured us that updates would be provided, and stayed in constant contact with us. At 9am, the surgeon came in to introduce himself and explain the procedure. The wait began.
The first call came around 10am. Josiah had handled anesthesia well. The incision had been made at 9:30am. He was transferred to a heart/lung machine at 10am. The transfer to machine went smoothly. Josiah was stable and doing very well. Carl & I walked around and tried to waste time. We made our way back to the waiting room at 11am. At 11:40, the second call came. The repairs to the heart had been successfully completed. He transferred smoothly off the heart/lung machine. They were about to finish the procedure. Josiah was stable and doing very well. What great news!
At 12 noon, Dr. E. came in to speak with us. The VSD was much larger than anyone predicted. It was partially covered by a valve which is likely why it fooled us early on. Dr. E. was able to move the valve, repair the hole, and gently slide the valve back into place. The ASDs were numerous (about 5-6) and were all closed successfully. They performed an echo cardiogram, which confirmed that repairs had been completed with great success. The elevated pressure in his heart immediately registered as normal :) Josiah is "ahead of schedule" in terms of stability and recovery - what great news this is!
He's being moved to ICU as I update this blog. Within the hour, we will be able to see Josiah again. We're trying to prepare for that first glimpse....pure ecstasy and, perhaps, a little heart break. Josiah is on a breathing tube - I know that will be the hardest thing to see. My heart is still leaping for joy that my little man has come through surgery without complication. His heart is whole and is beating on it's own.
Josiah should be able to be removed from the breathing tube later today or tomorrow morning. Then, he can start nursing again. Expected stay 5-7 days. We can't wait to bring him home. I already miss the older boys :)
I can't thank you all enough for your kind words of support and encouragement. We wouldn't have gotten through today without you! It's a beautiful journey and I'm glad you're able to share it with us.
Off to ICU....I can't wait to see Josiah <3
At 7:50am, members of the team arrived. Nurse Tom allowed us our hugs/kisses with Josiah then took him from me. He immediately voiced a fondness for our little man. Josiah was given an oral sedative and handled it like a trooper. Nurse Tom wrapped Josiah in his favorite blanket, gave him his favorite stuffed animal, and CARRIED him to the O.R. (that made me smile). Carl & I were escorted to the family waiting area.
The RN liaisons there are wonderful. They made us comfortable, assured us that updates would be provided, and stayed in constant contact with us. At 9am, the surgeon came in to introduce himself and explain the procedure. The wait began.
The first call came around 10am. Josiah had handled anesthesia well. The incision had been made at 9:30am. He was transferred to a heart/lung machine at 10am. The transfer to machine went smoothly. Josiah was stable and doing very well. Carl & I walked around and tried to waste time. We made our way back to the waiting room at 11am. At 11:40, the second call came. The repairs to the heart had been successfully completed. He transferred smoothly off the heart/lung machine. They were about to finish the procedure. Josiah was stable and doing very well. What great news!
At 12 noon, Dr. E. came in to speak with us. The VSD was much larger than anyone predicted. It was partially covered by a valve which is likely why it fooled us early on. Dr. E. was able to move the valve, repair the hole, and gently slide the valve back into place. The ASDs were numerous (about 5-6) and were all closed successfully. They performed an echo cardiogram, which confirmed that repairs had been completed with great success. The elevated pressure in his heart immediately registered as normal :) Josiah is "ahead of schedule" in terms of stability and recovery - what great news this is!
He's being moved to ICU as I update this blog. Within the hour, we will be able to see Josiah again. We're trying to prepare for that first glimpse....pure ecstasy and, perhaps, a little heart break. Josiah is on a breathing tube - I know that will be the hardest thing to see. My heart is still leaping for joy that my little man has come through surgery without complication. His heart is whole and is beating on it's own.
Josiah should be able to be removed from the breathing tube later today or tomorrow morning. Then, he can start nursing again. Expected stay 5-7 days. We can't wait to bring him home. I already miss the older boys :)
I can't thank you all enough for your kind words of support and encouragement. We wouldn't have gotten through today without you! It's a beautiful journey and I'm glad you're able to share it with us.
Off to ICU....I can't wait to see Josiah <3
Wednesday, January 18, 2012
Sedated echo & the wait for surgery
We were up at 4:15 this morning. I had to be sure that Josiah was able to nurse before the 5:30 cut-off time. Mission accomplished. My goodness was he full of smiles this a.m. We were out the door at 6:15 with the hopes of beating the morning commuters. Mission semi-accomplished.
We arrived at 8:30, parked, got a snack, and checked-in at 9am. We met with the RN responsible for the sedation, the cardiologist, and a few people in between. At 9:50, Josiah received the medication to help him sleep. He was not a happy baby. At 10:20, they began the echo cardiogram. They finished at 12 noon.
When the cardiologist walked in, I had high hopes that he'd tell us there was great improvement. Unfortunately, that was not the case. Josiah's heart remains enlarged on the right side. There continues to be a great deal of pressure within the right lung. These had not been a result of the virus. They are caused by something else.
Repairing the holes in Josiah's heart now becomes priority. They will fix both the VSD and multiple ASD's. Unlike the previous time frame of "within three months," it is now "within a month." The MD said the VSD and ASD's are common (particularly in Trisomy 21), the enlarged heart and increased lung pressure are uncommon in a child this young. This may be indicative of hypersensitive lungs. It may be a result of the holes in Josiah's heart. If that's the case, surgery would demonstrate improvement. If not, the search for answers start again.
In the meanwhile, we try not to get too far ahead of ourselves. We wait for surgery to call with an appointment for pre-op and surgery itself. We plan from there. Carl & I will take turns staying with Josiah in the hospital, at least for the first few days. Josiah will initially be on a ventilator and breastfeeding will be impossible. So, I will pump & wait until he can feed again. Thereafter, I'll stay with him to nurse him as he is able. He'll likely be in the hospital for 4-7 days, but it could be longer. We pray for fast, easy recovery.
At 12:30pm, we took Josiah down for his chest x-ray....just more data for the MD's to consider.
We were pulling out of the parking spot at 1:30pm for the one hour ride home.
The pediatrician's office called while we were driving home. Josiah's Synagis arrived today. We'll bring him to the pedi tomorrow for his first shot, but not before bringing he & James to playgroup - a bright spot in the week :)
"Life is not a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming...Wow! What a ride!" Melvin Trotter 1924-2006.
We arrived at 8:30, parked, got a snack, and checked-in at 9am. We met with the RN responsible for the sedation, the cardiologist, and a few people in between. At 9:50, Josiah received the medication to help him sleep. He was not a happy baby. At 10:20, they began the echo cardiogram. They finished at 12 noon.
When the cardiologist walked in, I had high hopes that he'd tell us there was great improvement. Unfortunately, that was not the case. Josiah's heart remains enlarged on the right side. There continues to be a great deal of pressure within the right lung. These had not been a result of the virus. They are caused by something else.
Repairing the holes in Josiah's heart now becomes priority. They will fix both the VSD and multiple ASD's. Unlike the previous time frame of "within three months," it is now "within a month." The MD said the VSD and ASD's are common (particularly in Trisomy 21), the enlarged heart and increased lung pressure are uncommon in a child this young. This may be indicative of hypersensitive lungs. It may be a result of the holes in Josiah's heart. If that's the case, surgery would demonstrate improvement. If not, the search for answers start again.
In the meanwhile, we try not to get too far ahead of ourselves. We wait for surgery to call with an appointment for pre-op and surgery itself. We plan from there. Carl & I will take turns staying with Josiah in the hospital, at least for the first few days. Josiah will initially be on a ventilator and breastfeeding will be impossible. So, I will pump & wait until he can feed again. Thereafter, I'll stay with him to nurse him as he is able. He'll likely be in the hospital for 4-7 days, but it could be longer. We pray for fast, easy recovery.
At 12:30pm, we took Josiah down for his chest x-ray....just more data for the MD's to consider.
We were pulling out of the parking spot at 1:30pm for the one hour ride home.
The pediatrician's office called while we were driving home. Josiah's Synagis arrived today. We'll bring him to the pedi tomorrow for his first shot, but not before bringing he & James to playgroup - a bright spot in the week :)
"Life is not a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming...Wow! What a ride!" Melvin Trotter 1924-2006.
Tuesday, December 13, 2011
2-months old
Has it really been 2 months since Josiah was born??? This is an amazing journey we are on. I'm loving every minute of it.
Josiah had his first EI visit and he did very well. He is a social little boy and likes the EI worker. At this point, they simply monitor his movements, etc. He's turning his head in both directions (favoring the right, slightly). He tolerates laying on both sides. He brings his hands up to his mouth. Even on his side, he is able to bring his hands to mid-line and then to his mouth. He is alert and enjoys looking around his environment. He recognizes voices and searches for those he knows. His eyes are big and bright :) No delays evident, as of yet. The EI professional has requested a PT and RN consult. This is not due to any concerns, per se. Rather, they want to assure that a whole team is in place in the event they are needed.
I enjoy facebook very much but am very selective with whom I'm friends with (I have to actually know you, for example lol). Carl & I were recently introduced to a local group of parents. They have a page on FB & we recently joined. What an amazing group of people. There are approximately 130 members. They are all local and they are all raising a child with DS. They have get-togethers once per month & special annual events. We look forward to attending our first get-together & getting to know our new friends.
With the Holidays rapidly approaching, I have not yet made an appt for Josiah's "new baby" visit to Boston Children's DS clinic. We'll likely schedule that for January. His first clinic appt is scheduled for June. At that time, he'll meet with their team of specialists. They will monitor him approx. every 8 months until the age of 18. What an amazing time & place we live in. I thank God everyday that Josiah has such wonderful supports. I know he will truly blossom into an incredible young man, just like his two brothers.
Josiah's older brothers are great. James just turned two & cherishes every moment he is afforded to kiss his baby brother. James will say, "Hi, baby!" We have to keep reminding James that Josiah is not like his Elmo doll but rather a real baby. James would love to fling him on the floor and play with him....hence the constant supervision :) Jesse will be turning 5 in a few weeks.....I don't know where those 5 years went. He's doing very well in preschool & adores his baby brother(s). Jesse knows that Josiah has DS but it matters not. Josiah is his brother - nothing more, nothing less.
Oh yeah, I almost forgot to mention the best thing. Yesterday, Josiah turned 2 months old & he smiled at me. I mean a real ear-to-ear smile. My heart melted! As my friend said, "he turned 2 months old but you got the best present." She's absolutely right!
God knew what he was doing when he sent us Jesse, James, and Josiah. They are wonderful children & we couldn't ask for more. If I had to go back and do it all over again.....I wouldn't change a thing <3
Josiah had his first EI visit and he did very well. He is a social little boy and likes the EI worker. At this point, they simply monitor his movements, etc. He's turning his head in both directions (favoring the right, slightly). He tolerates laying on both sides. He brings his hands up to his mouth. Even on his side, he is able to bring his hands to mid-line and then to his mouth. He is alert and enjoys looking around his environment. He recognizes voices and searches for those he knows. His eyes are big and bright :) No delays evident, as of yet. The EI professional has requested a PT and RN consult. This is not due to any concerns, per se. Rather, they want to assure that a whole team is in place in the event they are needed.
I enjoy facebook very much but am very selective with whom I'm friends with (I have to actually know you, for example lol). Carl & I were recently introduced to a local group of parents. They have a page on FB & we recently joined. What an amazing group of people. There are approximately 130 members. They are all local and they are all raising a child with DS. They have get-togethers once per month & special annual events. We look forward to attending our first get-together & getting to know our new friends.
With the Holidays rapidly approaching, I have not yet made an appt for Josiah's "new baby" visit to Boston Children's DS clinic. We'll likely schedule that for January. His first clinic appt is scheduled for June. At that time, he'll meet with their team of specialists. They will monitor him approx. every 8 months until the age of 18. What an amazing time & place we live in. I thank God everyday that Josiah has such wonderful supports. I know he will truly blossom into an incredible young man, just like his two brothers.
Josiah's older brothers are great. James just turned two & cherishes every moment he is afforded to kiss his baby brother. James will say, "Hi, baby!" We have to keep reminding James that Josiah is not like his Elmo doll but rather a real baby. James would love to fling him on the floor and play with him....hence the constant supervision :) Jesse will be turning 5 in a few weeks.....I don't know where those 5 years went. He's doing very well in preschool & adores his baby brother(s). Jesse knows that Josiah has DS but it matters not. Josiah is his brother - nothing more, nothing less.
Oh yeah, I almost forgot to mention the best thing. Yesterday, Josiah turned 2 months old & he smiled at me. I mean a real ear-to-ear smile. My heart melted! As my friend said, "he turned 2 months old but you got the best present." She's absolutely right!
God knew what he was doing when he sent us Jesse, James, and Josiah. They are wonderful children & we couldn't ask for more. If I had to go back and do it all over again.....I wouldn't change a thing <3
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