On Monday, K arrived for Josiah's weekly session. KT (OT) joined us. Josiah enjoyed K and enjoyed meeting his new friend. The consult for OT was initiated due to Josiah's difficulties in gaining weight. Of course, we seemed to have broken through that barrier last week. Thus, I hoped we weren't wasting KT's time. Josiah enjoyed showing off all of his tricks. KT, who demonstrates a love for the babies, enjoyed watching, working, and playing with him.
Josiah is doing so well, and making huge strides every week. It's exciting to see. Despite having broken through the weight-gain hurdle, KT will continue to visit monthly for now. According to the American Academy of Pediatrics, babies should not start "food" until about 6 months of age. We don't know if the pediatrician will want to start food with him right at 6 months, or if he'll want to wait a bit longer. Josiah still has limited head control; that may play a role in determining when he starts "foods." When he does, I suspect that KT will be another invaluable team player. Josiah was born with an extremely high palette (not unusual in Down Syndrome). From what I've read, and heard, food can easily become lodged up there, and the child's tongue cannot reach high enough to dislodge it. OT can be very helpful in overcoming such hurdles. I am prepared for the (possible) continued eating challenges. I know Josiah will ultimately prove successful.
As a funny side note....yesterday, I had placed Josiah in his swing. James (age 2) was in the room alone with the little guy. I entered the living room only to find James feeding tiny little muffin crumbs to his baby brother. I softly reminded James that the baby is too little to eat "real food." All the while, I had to control my laughter. Josiah had muffin crumbs on his chin, lower lip, upper lip, and under his nose. He had little bits of crumbs on his tongue which he was happily gumming to death :) Josiah looked at me, then looked at James and gave him a huge smile. It was a cute moment. Josiah seemed to enjoy the momentary break from milk.
And, did I mention that the aforementioned muffin was chocolate chip????
Wednesday, March 28, 2012
Saturday, March 24, 2012
A Break-Through in the Weight Gain Battle
Yesterday, Josiah woke at about 7am. I had not forgotten that he had an appointment at the pediatrician at 10:30am. He was due for his next (and final) Synagis shot for this season. The Synagis shot requires a weight check, as the dosage is dependent on weight. I nursed him and prayed for an 'acceptable' weight gain.
Jesse went to school. Carl and I packed up the other boys and headed to the pediatrician. We were there a few minutes early, and brought straight to a room. I tried to remain optimistic, but prepared for the disappointment that has defined so many weight checks before. I got Josiah undressed and carried him to the scale. The moment of truth had arrived.
I placed him on the scale. I was hoping to be excited about the results. Part of me was ready to burst into tears if the results were not as I hoped. When the scale locked in with his current weight, I was ELATED! 10lbs 6.5oz. He had gained 15oz in 15 days. It was the 'picture perfect' weight gain (1 oz per day). I carried him back to the room; I couldn't help but feel overwhelmed with joy!
Within minutes, I could hear the pediatrician walking towards the room, all the way pronouncing "15oz in 15 days." LOL. At last, it was not going to feel like a 'doom and gloom' visit. I finally felt as if we had broken through that barrier. I was thrilled. Carl was thrilled. The MD (and nurses) were thrilled! FINALLY! He received his shot, and we were done! We were homeward bound, without the overwhelming anxiety of visits past. Josiah doesn't need to be seen until next month, for his 6-month check up.
We were winning the weight battle. I am still nursing, primarily. Josiah is only receiving 1-2 supplemental bottles per day. Don't believe anyone who tells you that a special needs child cannot be breastfed!
K called while we at the pediatrician's office. She is coming out on Monday with one more member of this amazing team! I was able to, briefly, update her with the good news. She shared in our excitement.
I called KF during the late afternoon hour. I was delighted to share our news with her. She has truly been an amazing support throughout this weight gain battle. Last week, she told me that this has become 'personal' for her too. I cannot explain how touched I've been by the amazing supports we have in our life. I told KF that her undying support through my breastfeeding journey, has been invaluable. I don't think I would've continued the BF without her help.
I've learned over the years that the most important things in a person's life, are those worth fighting for. This up-the-down-staircase journey is not always easy. However, it's one of those battles worth fighting. I have amazing parents, an incredible brother, and the best sister-in-law in the world. I am blessed with a husband, who is my best friend. I have 3 amazing boys who teach me new things, everyday. Our family has that one extra chromosome which has introduced us to new friends, new supports, new information, new learning opportunities, and confirmed our belief that we are the luckiest people in the world.
Jesse went to school. Carl and I packed up the other boys and headed to the pediatrician. We were there a few minutes early, and brought straight to a room. I tried to remain optimistic, but prepared for the disappointment that has defined so many weight checks before. I got Josiah undressed and carried him to the scale. The moment of truth had arrived.
I placed him on the scale. I was hoping to be excited about the results. Part of me was ready to burst into tears if the results were not as I hoped. When the scale locked in with his current weight, I was ELATED! 10lbs 6.5oz. He had gained 15oz in 15 days. It was the 'picture perfect' weight gain (1 oz per day). I carried him back to the room; I couldn't help but feel overwhelmed with joy!
Within minutes, I could hear the pediatrician walking towards the room, all the way pronouncing "15oz in 15 days." LOL. At last, it was not going to feel like a 'doom and gloom' visit. I finally felt as if we had broken through that barrier. I was thrilled. Carl was thrilled. The MD (and nurses) were thrilled! FINALLY! He received his shot, and we were done! We were homeward bound, without the overwhelming anxiety of visits past. Josiah doesn't need to be seen until next month, for his 6-month check up.
We were winning the weight battle. I am still nursing, primarily. Josiah is only receiving 1-2 supplemental bottles per day. Don't believe anyone who tells you that a special needs child cannot be breastfed!
K called while we at the pediatrician's office. She is coming out on Monday with one more member of this amazing team! I was able to, briefly, update her with the good news. She shared in our excitement.
I called KF during the late afternoon hour. I was delighted to share our news with her. She has truly been an amazing support throughout this weight gain battle. Last week, she told me that this has become 'personal' for her too. I cannot explain how touched I've been by the amazing supports we have in our life. I told KF that her undying support through my breastfeeding journey, has been invaluable. I don't think I would've continued the BF without her help.
I've learned over the years that the most important things in a person's life, are those worth fighting for. This up-the-down-staircase journey is not always easy. However, it's one of those battles worth fighting. I have amazing parents, an incredible brother, and the best sister-in-law in the world. I am blessed with a husband, who is my best friend. I have 3 amazing boys who teach me new things, everyday. Our family has that one extra chromosome which has introduced us to new friends, new supports, new information, new learning opportunities, and confirmed our belief that we are the luckiest people in the world.
Thursday, March 22, 2012
Great PT visit today :)
Josiah napped late yesterday, from 8:30pm until I woke him at 1:30am. He nursed and was back in bed at 2am. Carl and I followed shortly thereafter. The alarm woke us at 6:30, as scheduled. I woke Josiah up at 7am....I was excited for today's PT visit. I changed him, nursed him, and prepared the living room for his PT visit. K and D arrived promptly at 8am. I was beside myself with excitement. My fingers were crossed that Josiah would show D his new tricks. He did not disappoint.
Josiah was happy to see his 'girlfriends.' He was playful and engaging with both ladies. While on his back, he happily reached, grabbed, and played with several toys. He demonstrated his ability to raise both arms up the air, simultaneously. He played with his fingers and hands. He sucked on his arm lol. His side-lying was wonderful today. He even showed D his new trick of rolling over onto his belly....she had to help him 'unstick' his arms each time (as they become trapped underneath him). D taught him how to use his leg to return to his back from a side-lying position....he later demonstrated his understanding of the lesson. K and I eagerly pulled out the tripod toy to show D Josiah's understanding of cause and effect. When the music stopped, Josiah used his legs to restart the music (this requires moving the middle hanging toy...a green circle). I repositioned the tripod and Josiah proved his ability to utilize his arms for the same purpose. It was very exciting. While on his belly, he utilized many muscles in an effort to move/turn his head. This is a challenge for Josiah, but his proved that he is gaining strength in his neck. D also placed him in a sitting position; he worked hard to keep his head under control.
D was excited about his progress over the last month. She indicated he is (finally) ready for weekly PT. I am THRILLED! Starting next week, Josiah will have PT weekly. He will continue to work with K, weekly, as well. My excitement is overflowing :)
By the end of today's session, Josiah was side-lying, crying, and unable to keep his eyes open. He was exhausted!!! I nursed him for about 5 minutes before he fell fast asleep in my arms. I placed him in his crib at 9:15am. I spent the next FOUR hours getting things done; Finally, at 1:15pm, I woke him. It had been 5.5 hours since he had last eaten. He nursed VERY well, played for awhile, consumed 1.5 ounces of a bottle, and (again) fell fast asleep. I put him down for a nap at 3:30pm.....he remains asleep (it's now 5:30pm).
Tomorrow, he is scheduled for the next Synagis shot. I am, as always, nervous about the weight check. Regardless, I remain optimistic!
I see how far Josiah has come in the past 6 weeks, and I remain in awe. I see his potential. I know all that he will be able to accomplish soon. He is an amazing child. We could not be more blessed that he is ours <3.
As a side note: As I mentioned, yesterday was World Down Syndrome Day. I forgot to mention how we celebrated at 7am......we had ice cream for breakfast.....all of us! I think THAT will be a new tradition :)
Josiah was happy to see his 'girlfriends.' He was playful and engaging with both ladies. While on his back, he happily reached, grabbed, and played with several toys. He demonstrated his ability to raise both arms up the air, simultaneously. He played with his fingers and hands. He sucked on his arm lol. His side-lying was wonderful today. He even showed D his new trick of rolling over onto his belly....she had to help him 'unstick' his arms each time (as they become trapped underneath him). D taught him how to use his leg to return to his back from a side-lying position....he later demonstrated his understanding of the lesson. K and I eagerly pulled out the tripod toy to show D Josiah's understanding of cause and effect. When the music stopped, Josiah used his legs to restart the music (this requires moving the middle hanging toy...a green circle). I repositioned the tripod and Josiah proved his ability to utilize his arms for the same purpose. It was very exciting. While on his belly, he utilized many muscles in an effort to move/turn his head. This is a challenge for Josiah, but his proved that he is gaining strength in his neck. D also placed him in a sitting position; he worked hard to keep his head under control.
D was excited about his progress over the last month. She indicated he is (finally) ready for weekly PT. I am THRILLED! Starting next week, Josiah will have PT weekly. He will continue to work with K, weekly, as well. My excitement is overflowing :)
By the end of today's session, Josiah was side-lying, crying, and unable to keep his eyes open. He was exhausted!!! I nursed him for about 5 minutes before he fell fast asleep in my arms. I placed him in his crib at 9:15am. I spent the next FOUR hours getting things done; Finally, at 1:15pm, I woke him. It had been 5.5 hours since he had last eaten. He nursed VERY well, played for awhile, consumed 1.5 ounces of a bottle, and (again) fell fast asleep. I put him down for a nap at 3:30pm.....he remains asleep (it's now 5:30pm).
Tomorrow, he is scheduled for the next Synagis shot. I am, as always, nervous about the weight check. Regardless, I remain optimistic!
I see how far Josiah has come in the past 6 weeks, and I remain in awe. I see his potential. I know all that he will be able to accomplish soon. He is an amazing child. We could not be more blessed that he is ours <3.
As a side note: As I mentioned, yesterday was World Down Syndrome Day. I forgot to mention how we celebrated at 7am......we had ice cream for breakfast.....all of us! I think THAT will be a new tradition :)
Wednesday, March 21, 2012
World Down Syndrome Day 3/21/12
I'm sure to many, today was simply Wednesday. For some, it was merely March 21st. For the DS community, we rejoiced today. Today, was World Down Syndrome Day. The date, numerically, is 3-21. The 3 represents the extra chromosome. The 21 represents the placement of the extra chromosome. Down Syndrome is determined when there are 3 copies (instead of the normal two) of the 21st chromosome.
The first World Down Syndrome Day was celebrated in 2006, in Singapore. This year marks the 7th Anniversary of WDSD. More importantly, it is first year that WDSD was officially observed by the United Nations. In honor of this great day, DSi launched a Global Video Event with 68 countries. Please take a few minutes to watch; You'll be glad you did. The video features beautiful children, just like Josiah, who all have that 'little extra something' :)
http://www.youtube.com/watch?v=479CziJHTFo
The first World Down Syndrome Day was celebrated in 2006, in Singapore. This year marks the 7th Anniversary of WDSD. More importantly, it is first year that WDSD was officially observed by the United Nations. In honor of this great day, DSi launched a Global Video Event with 68 countries. Please take a few minutes to watch; You'll be glad you did. The video features beautiful children, just like Josiah, who all have that 'little extra something' :)
http://www.youtube.com/watch?v=479CziJHTFo
A good life
is when you
assume nothing,
do more,
need less,
smile often,
dream big,
laugh a lot,
and realize how
blessed you are
A Better Week
I have finally pulled myself out of the 'bummed out' mode, I had slipped into. I had started to pull myself out of that hole. Then, today, I talked to KF (lactation specialist/friend) - it took no time at all to be feeling great again. I always feel better after talking to her :) It was all over the need to supplement feedings with bottles. It seems silly to me but emotions cannot always be explained :)
Josiah has been doing really well. I continue to breastfeed, on-demand. He generally takes 1-2 bottles per day, ranging from 2-4 ounces each. I jumped on the bathroom scale the other day (alone), then again holding him. The difference calculated at 10.6 lbs. So, I'm feeling positive that this week's weight check will produce positive results.
It's been a relatively quiet week. Jesse has been going to school, as usual. He has a field trip tomorrow that he excited about. James has no playgroup this week so it's been an at-home kind of a week. Josiah didn't have EI on Monday; Instead, K & D both come tomorrow. I'm excited for D to see him. She's the physical therapist & I think she will be pleased with his progress. Now, if he could just hold his own head up lol.
Josiah's synagis shot is scheduled for Friday. That's when he will be weighed again; I remain optimistic about those results. Meanwhile, he is alert and playful. He enjoys grabbing at, and grasping, his favorite toys. He continues to roll over from back to belly (oftentimes getting stuck there). He looks less like an infant now. If my eyes do not deceive me, I swear (at times) he looks like he is actually getting a little bit of a belly. These are all good signs that my little heart hero is doing well.
The next two days are sure to be good ones.
Josiah has been doing really well. I continue to breastfeed, on-demand. He generally takes 1-2 bottles per day, ranging from 2-4 ounces each. I jumped on the bathroom scale the other day (alone), then again holding him. The difference calculated at 10.6 lbs. So, I'm feeling positive that this week's weight check will produce positive results.
It's been a relatively quiet week. Jesse has been going to school, as usual. He has a field trip tomorrow that he excited about. James has no playgroup this week so it's been an at-home kind of a week. Josiah didn't have EI on Monday; Instead, K & D both come tomorrow. I'm excited for D to see him. She's the physical therapist & I think she will be pleased with his progress. Now, if he could just hold his own head up lol.
Josiah's synagis shot is scheduled for Friday. That's when he will be weighed again; I remain optimistic about those results. Meanwhile, he is alert and playful. He enjoys grabbing at, and grasping, his favorite toys. He continues to roll over from back to belly (oftentimes getting stuck there). He looks less like an infant now. If my eyes do not deceive me, I swear (at times) he looks like he is actually getting a little bit of a belly. These are all good signs that my little heart hero is doing well.
The next two days are sure to be good ones.
Sunday, March 18, 2012
A Much Needed Break, Playdate, and 5 Months Old
A week-long hiatus from writing is unusual for me. I'm back :)
Last weekend, the older boys spent a night at my parents house. It gave Carl and I a much needed break. This time, unlike others, we had predetermined to "do nothing." So often, when the older boys are away, we set a goal of accomplishing tasks....usually too many to successfully accomplish within the time frame given. It always leads to disappointment when the boys return with thoughts of, "We should have gotten more done," etc. Our goal last weekend was void of all tasks. It was impossible to disappoint. We spent time together, watched tv, and just relaxed. It was wonderful. Saturday night, the older boys returned home. They had a wonderful time with their grandparents.
On Sunday, Jesse had his friend M over. It was his first 'real' play date. It was the first time having a friend (of his choice) come over to play. We picked up M around 12noon and drove them home. They had lunch, and spent the next five hours playing. They enjoyed playing outside & in Jesse's room. Carl loved watching them play. At 5pm, we drove M home. The first play date was a smashing success! Another milestone accomplished.
Josiah spent the weekend determined to prove how well he could roll over. The proof was always in finding him on his tummy.....as he seemed equally determined to roll over when we were not in the room. He's a funny little boy. The days of leaving him on the couch 'just for a minute' have come to a crashing halt. His new trick makes him a safety hazard (to himself) now. He is so proud of his new ability, as are we.
On Monday, Josiah turned 5 months old. It's so hard to believe the miracle that IS Josiah. K came out in the morning to work with James. As usual, they had a wonderful time working together. She returned in the early afternoon to work with Josiah. This was the first time that Carl and I were not home to participate in their session; Instead, my Mom was here. K had heard that Josiah was rolling onto his tummy and, I know, she wanted to witness the new occurrence. I had joked, "Good luck!"
Apparently, Josiah did not disappoint. Once he had greeted K, she laid him on his mat. He aimed to please; He rolled onto his side. Utilizing momentum, he continued to roll onto his tummy. K was delighted! During the next hour, Josiah repeated his new trick several times for K. While on his tummy, he repeatedly turned his head from side to side. The session was full of delighted adults (and one proud baby). Though I missed the session, I was given a blow-by-blow account of it's success. First, by my Mom; Later, by K (via phone).
D is coming out next week for his physical therapy. Up until now, it's been monthly; Rumor has it, it's soon to become weekly. I'm excited! I think this will be great for Josiah.
In terms of feedings, Josiah is doing well. During the weekend, I continued to breastfeed on demand. Josiah also took a total of 5 bottles, ranging from 1-3 oz each). I'm still bothered by the need for supplementation, but will continue to do whatever is best for him <3.
This amazing journey continues....
Last weekend, the older boys spent a night at my parents house. It gave Carl and I a much needed break. This time, unlike others, we had predetermined to "do nothing." So often, when the older boys are away, we set a goal of accomplishing tasks....usually too many to successfully accomplish within the time frame given. It always leads to disappointment when the boys return with thoughts of, "We should have gotten more done," etc. Our goal last weekend was void of all tasks. It was impossible to disappoint. We spent time together, watched tv, and just relaxed. It was wonderful. Saturday night, the older boys returned home. They had a wonderful time with their grandparents.
On Sunday, Jesse had his friend M over. It was his first 'real' play date. It was the first time having a friend (of his choice) come over to play. We picked up M around 12noon and drove them home. They had lunch, and spent the next five hours playing. They enjoyed playing outside & in Jesse's room. Carl loved watching them play. At 5pm, we drove M home. The first play date was a smashing success! Another milestone accomplished.
Josiah spent the weekend determined to prove how well he could roll over. The proof was always in finding him on his tummy.....as he seemed equally determined to roll over when we were not in the room. He's a funny little boy. The days of leaving him on the couch 'just for a minute' have come to a crashing halt. His new trick makes him a safety hazard (to himself) now. He is so proud of his new ability, as are we.
On Monday, Josiah turned 5 months old. It's so hard to believe the miracle that IS Josiah. K came out in the morning to work with James. As usual, they had a wonderful time working together. She returned in the early afternoon to work with Josiah. This was the first time that Carl and I were not home to participate in their session; Instead, my Mom was here. K had heard that Josiah was rolling onto his tummy and, I know, she wanted to witness the new occurrence. I had joked, "Good luck!"
Apparently, Josiah did not disappoint. Once he had greeted K, she laid him on his mat. He aimed to please; He rolled onto his side. Utilizing momentum, he continued to roll onto his tummy. K was delighted! During the next hour, Josiah repeated his new trick several times for K. While on his tummy, he repeatedly turned his head from side to side. The session was full of delighted adults (and one proud baby). Though I missed the session, I was given a blow-by-blow account of it's success. First, by my Mom; Later, by K (via phone).
D is coming out next week for his physical therapy. Up until now, it's been monthly; Rumor has it, it's soon to become weekly. I'm excited! I think this will be great for Josiah.
In terms of feedings, Josiah is doing well. During the weekend, I continued to breastfeed on demand. Josiah also took a total of 5 bottles, ranging from 1-3 oz each). I'm still bothered by the need for supplementation, but will continue to do whatever is best for him <3.
This amazing journey continues....
Friday, March 9, 2012
Weight Gain and Rolling Over
We went to the pediatrician yesterday. Josiah weighed in at 9lbs 7oz. That's a 6oz weight gain in six days; 3oz in 2 days. I was pleased. The MD reminded me how much catching up Josiah has to do. Despite knowing he's right, I felt discouraged. We had a good week, Josiah gained 6oz, yet the focus seemed to be on how behind he is in regards to weight. I'm trying very hard not to get too discouraged. We'll go back in about two weeks for his next Synagis shot - he'll be weighed again then.
Josiah fell asleep early last night; it was about 8pm. I put him in his crib. We had Jesse and James in bed by 9pm. Carl and I decided to crash early...we were both feeling very tired. I woke up at 3:30 and decided to check on Josiah. I crept quietly into his room. Much to my shock, Josiah was lying on his tummy....sound asleep. He had rolled over in his sleep!!! He's never done that before. I was leaping with excitement; it's another milestone. I woke him at 4am for his next feeding; I thought eight hours had been long enough :)
Josiah is doing well this morning. He's had two great feedings with me. He also took a 3oz bottle for Carl. Like Jesse said, "At least you got a break from feeding him this morning, Mom." How right he is. I still don't love the fact that supplementation is needed, but I have no choice to accept it's reality. I'll check in with KF today; she always gives me the encouragement needed - I am so thankful for her.
The older boys are headed to my parents house for an overnight. Carl and I will have some much needed alone time (plus one baby). We're looking forward to the relative peace. We'll have most of the day tomorrow to ourselves, before the older boys return. On Sunday, Jesse is having his friend over - his very first play date. He is so excited!
It's going to be a great weekend.
Josiah fell asleep early last night; it was about 8pm. I put him in his crib. We had Jesse and James in bed by 9pm. Carl and I decided to crash early...we were both feeling very tired. I woke up at 3:30 and decided to check on Josiah. I crept quietly into his room. Much to my shock, Josiah was lying on his tummy....sound asleep. He had rolled over in his sleep!!! He's never done that before. I was leaping with excitement; it's another milestone. I woke him at 4am for his next feeding; I thought eight hours had been long enough :)
Josiah is doing well this morning. He's had two great feedings with me. He also took a 3oz bottle for Carl. Like Jesse said, "At least you got a break from feeding him this morning, Mom." How right he is. I still don't love the fact that supplementation is needed, but I have no choice to accept it's reality. I'll check in with KF today; she always gives me the encouragement needed - I am so thankful for her.
The older boys are headed to my parents house for an overnight. Carl and I will have some much needed alone time (plus one baby). We're looking forward to the relative peace. We'll have most of the day tomorrow to ourselves, before the older boys return. On Sunday, Jesse is having his friend over - his very first play date. He is so excited!
It's going to be a great weekend.
Wednesday, March 7, 2012
Yesterday's Visit to Children's
Jesse had the day off yesterday, due to teacher conferences. So, he and James went to my parents house for the afternoon. Carl and I headed to Children's with Josiah.
It was our first visit to the Developmental Medicine Center/DS clinic. A was quick to meet us; she had paid Josiah and I a visit after his surgery. She finally had the chance to meet Carl. Josiah was weighed and measured. He weighed in at 9lb 4.15oz. At best, he's gained 3oz; At worst, he's gained 1oz since Friday. We met, first, with the nutritionist, then the feeding specialist. There were several good conclusions to our conversation. First, it is unlikely that this is medically based (ie, gastrointestinal issues, absorption issues, etc). Josiah seems well on all accounts. Second, it is not a feeding issue - Josiah is doing well breastfeeding. Third, there is nothing "wrong" with me.
The final assessment:
Josiah simply needs more calories than he is currently getting. As breast milk and formula both register at approximately 20 calories per ounce, Josiah likely needs more calories per oz.
Solution:
1. Nurse Josiah as we've been doing. Immediately after each feeding, offer him 2oz of fortified formula or breast milk (breast milk or formula with added formula mixed in).
2. Pump 2-3 times per day to increase my own supply, per KF's advice.
I love when problems and solutions are fairly simple. This seems to be the case here. I am so thankful.
This morning, Josiah had 1 interrupted feeding. Two hours later, he had his second (and full) feeding. He was immediately offered a 2oz bottle of fortified formula and he consumed the entire bottle. He was given a second bottle, and consumed an additional oz. I think we're off to a good start. I'll wait until noon, and start the next round.
Tomorrow, we return to the pediatrician for a weight check. I'm hoping we can pack on a few ounces today lol. We'll see. If nothing else, I can tell the pediatrician the steps we have already taken to accomplish our simply mission: weight gain :)
It's a mellow day at home today. I'm hoping to putter about, getting some things done at home.
It was our first visit to the Developmental Medicine Center/DS clinic. A was quick to meet us; she had paid Josiah and I a visit after his surgery. She finally had the chance to meet Carl. Josiah was weighed and measured. He weighed in at 9lb 4.15oz. At best, he's gained 3oz; At worst, he's gained 1oz since Friday. We met, first, with the nutritionist, then the feeding specialist. There were several good conclusions to our conversation. First, it is unlikely that this is medically based (ie, gastrointestinal issues, absorption issues, etc). Josiah seems well on all accounts. Second, it is not a feeding issue - Josiah is doing well breastfeeding. Third, there is nothing "wrong" with me.
The final assessment:
Josiah simply needs more calories than he is currently getting. As breast milk and formula both register at approximately 20 calories per ounce, Josiah likely needs more calories per oz.
Solution:
1. Nurse Josiah as we've been doing. Immediately after each feeding, offer him 2oz of fortified formula or breast milk (breast milk or formula with added formula mixed in).
2. Pump 2-3 times per day to increase my own supply, per KF's advice.
I love when problems and solutions are fairly simple. This seems to be the case here. I am so thankful.
This morning, Josiah had 1 interrupted feeding. Two hours later, he had his second (and full) feeding. He was immediately offered a 2oz bottle of fortified formula and he consumed the entire bottle. He was given a second bottle, and consumed an additional oz. I think we're off to a good start. I'll wait until noon, and start the next round.
Tomorrow, we return to the pediatrician for a weight check. I'm hoping we can pack on a few ounces today lol. We'll see. If nothing else, I can tell the pediatrician the steps we have already taken to accomplish our simply mission: weight gain :)
It's a mellow day at home today. I'm hoping to putter about, getting some things done at home.
Monday, March 5, 2012
Determined to Find Solutions
Josiah woke at 5:45am. He always nurses well first thing in the morning. Despite lingering frustration, I was determined to get things rolling....
K came out at 8:30 to work with James. He was so cute this morning & beyond excited to see her. They spent their time playing, talking, and laughing. Josiah enjoyed watching them, from his swing. K was able to see the boys back-to-back today, which was nice. At 9:45, it was Josiah's turn. He, too, had fun with K. He showed off his ability to hold toys, each time bringing them up the air (and looking at them). He rolled onto his side and back again. He kicked his tripod toy, triggering the music sensor; he's clearly demonstrating his understanding of cause and effect. We moved the tripod so it was over his chest. He enjoyed proving that he could trigger the same sensor, using his hands :) He responds with pride each time he demonstrates one of his tricks. He's an amazing little boy.
Jesse went to school and had a great day. We all went to pick him up; he likes when we do that. Afterwards, we did a few quick errands and returned home. During mid-late afternoon, I offered Josiah a new bottle that arrived today (I ordered it on Saturday). I was ecstatic about this bottle as I believed Josiah would really like it. Again, I was hopefully optimistic. Josiah would have no part of that thing! So, I continued to nurse Josiah on-demand, even when I felt I had nothing left. It can be exhausting. I still worry about the lack of weight gain. I know things will get better soon.
I heard back from the DS clinic today. Josiah has an appointment, tomorrow, to meet with both a nutritionist and feeding specialist. I hope they can offer a few helpful suggestions. This evening, I called KF. We spoke at length. I am determined to continue to breastfeed Josiah; KF is determined to support my efforts. She is also determined to help me solve this current feeding/lack-of-weight-gain issue. She offered some very helpful tips, which I will implement immediately. We'll see what comes of tomorrow's appointments.
The boys are going to my parent's house tomorrow so we can go into Children's with Josiah. It's always less complicated when the older boys are not in tow.
I firmly believe this will all work. I'm just looking forward to reaching that reality :)
K came out at 8:30 to work with James. He was so cute this morning & beyond excited to see her. They spent their time playing, talking, and laughing. Josiah enjoyed watching them, from his swing. K was able to see the boys back-to-back today, which was nice. At 9:45, it was Josiah's turn. He, too, had fun with K. He showed off his ability to hold toys, each time bringing them up the air (and looking at them). He rolled onto his side and back again. He kicked his tripod toy, triggering the music sensor; he's clearly demonstrating his understanding of cause and effect. We moved the tripod so it was over his chest. He enjoyed proving that he could trigger the same sensor, using his hands :) He responds with pride each time he demonstrates one of his tricks. He's an amazing little boy.
Jesse went to school and had a great day. We all went to pick him up; he likes when we do that. Afterwards, we did a few quick errands and returned home. During mid-late afternoon, I offered Josiah a new bottle that arrived today (I ordered it on Saturday). I was ecstatic about this bottle as I believed Josiah would really like it. Again, I was hopefully optimistic. Josiah would have no part of that thing! So, I continued to nurse Josiah on-demand, even when I felt I had nothing left. It can be exhausting. I still worry about the lack of weight gain. I know things will get better soon.
I heard back from the DS clinic today. Josiah has an appointment, tomorrow, to meet with both a nutritionist and feeding specialist. I hope they can offer a few helpful suggestions. This evening, I called KF. We spoke at length. I am determined to continue to breastfeed Josiah; KF is determined to support my efforts. She is also determined to help me solve this current feeding/lack-of-weight-gain issue. She offered some very helpful tips, which I will implement immediately. We'll see what comes of tomorrow's appointments.
The boys are going to my parent's house tomorrow so we can go into Children's with Josiah. It's always less complicated when the older boys are not in tow.
I firmly believe this will all work. I'm just looking forward to reaching that reality :)
The Roller Coaster Ride
After feeling so positive yesterday morning, I had a bit of a let down.
Early in the afternoon, we decided to get our major grocery shopping done. In preparation for the time out of the house, I nursed Josiah until he seemed satisfied. We packed up the boys and headed to the store. We were in the store for about five minutes; Josiah had a meltdown. I thought, "No problem. I'll just feed him a bottle." Josiah refused to take it. The mere offer of the bottle made him cry louder and stronger. I couldn't believe this was happening. I was armed with a well-thought-out grocery list, two boys who were looking forward to shopping and, now, a screaming baby. I stood in the middle of the produce aisle for what seemed like an hour. What do I do? Do we shop anyway? Why won't he take the bottle? Is he going to scream like this the whole time? Are we going home without having accomplished the grocery shopping? It seemed like a devastating turn of events. Carl offered to take Josiah out to the van to wait. Luckily, Josiah was satisfied as long as Carl walked with him. So....for the next hour or so, Carl walked Josiah around the store. In the meanwhile, I completed the grocery shopping with the two older boys. By the end, I was exhausted and drained but, at least, the grocery shopping was complete.
Once home, I nursed Josiah off-an-on as usual. He ultimately took 3oz of breast milk in a bottle....I knew not all had been lost. I still can't explain how frustrating this is for me. It feels very personal for me. We spent the evening with the boys. Jesse went to bed late, given that it was a school night; he did finish his homework, so that was one more accomplishment for the day.
Carl and I were exhausted. Josiah fell asleep around 1:30am; I put him in his crib and went to bed. He woke me at 5:45am....another week begins.
Early in the afternoon, we decided to get our major grocery shopping done. In preparation for the time out of the house, I nursed Josiah until he seemed satisfied. We packed up the boys and headed to the store. We were in the store for about five minutes; Josiah had a meltdown. I thought, "No problem. I'll just feed him a bottle." Josiah refused to take it. The mere offer of the bottle made him cry louder and stronger. I couldn't believe this was happening. I was armed with a well-thought-out grocery list, two boys who were looking forward to shopping and, now, a screaming baby. I stood in the middle of the produce aisle for what seemed like an hour. What do I do? Do we shop anyway? Why won't he take the bottle? Is he going to scream like this the whole time? Are we going home without having accomplished the grocery shopping? It seemed like a devastating turn of events. Carl offered to take Josiah out to the van to wait. Luckily, Josiah was satisfied as long as Carl walked with him. So....for the next hour or so, Carl walked Josiah around the store. In the meanwhile, I completed the grocery shopping with the two older boys. By the end, I was exhausted and drained but, at least, the grocery shopping was complete.
Once home, I nursed Josiah off-an-on as usual. He ultimately took 3oz of breast milk in a bottle....I knew not all had been lost. I still can't explain how frustrating this is for me. It feels very personal for me. We spent the evening with the boys. Jesse went to bed late, given that it was a school night; he did finish his homework, so that was one more accomplishment for the day.
Carl and I were exhausted. Josiah fell asleep around 1:30am; I put him in his crib and went to bed. He woke me at 5:45am....another week begins.
Sunday, March 4, 2012
Steps in the Right Direction
It's amazing what a solid six hours of sleep can do for the soul and mind :)
Yesterday, my mind was still reeling over Josiah and his lack of weight gain. It had been another night of broken sleep....bed at 12...up at 2...bed at 4...up at 7. I had a terrible migraine for most of the day. Despite exhaustion and frustration, I knew a solution had to be near. I was determined to locate it.
Friday night, on a whim, I ran to the store and purchased a different kind of bottle hoping he may take to it. We tried it on Friday, filled with formula, without success.
Yesterday, after the first couple of feedings, I offered Josiah the same bottle filled with 2oz of breast milk. I took KF's suggestions....make it a game. Don't force the bottle on him. Let him "play" with it. We spent about thirty minutes attempting the bottle. In the end, he drank about 1/2 oz. It was disappointing but at least he tolerated our new game.
I emailed A at the DS clinic. I figured I'd initiate the nutritionist connection. It'll be funny, in the end, if we don't need the appointment.
Late yesterday afternoon, while feeling drained, Carl offered him the same bottle (also filled with breast milk). Josiah wasn't interested. After about 15 minutes of trying, I took over. As I approached Josiah, he smiled. Carl and I knew we were being played lol. I snuggled closely with Josiah while offering him the bottle. He drank almost the entire 2oz bottle. I was ecstatic! I felt we had crossed a major hurdle.
Josiah continued to take feedings as usual. During the last feeding of the night, I had an idea. I nursed him on one side then let him take a quick break. I heated up a "nurser" bottle - these are 2oz bottles pre-filled with formula; hospitals often give them out with new baby packages. Again, I snuggled closely with Josiah while offering him the bottle. He drank the entire bottle without complaint. I burped him, nursed him on the other side, and he feel soundly asleep in my arms. I laid him in his crib at approximately 11:30pm. He woke me at 5:30am.
11:30pm to 5:30am....a solid six hours. It's amazing what a difference that has made for my once-tired mind. I feel great today. Josiah has nursed well this morning. I will offer him supplemental bottles again today. I truly believe we've crossed a bridge. I'm feeling very positive. I'm feeling very blessed <3
Yesterday, my mind was still reeling over Josiah and his lack of weight gain. It had been another night of broken sleep....bed at 12...up at 2...bed at 4...up at 7. I had a terrible migraine for most of the day. Despite exhaustion and frustration, I knew a solution had to be near. I was determined to locate it.
Friday night, on a whim, I ran to the store and purchased a different kind of bottle hoping he may take to it. We tried it on Friday, filled with formula, without success.
Yesterday, after the first couple of feedings, I offered Josiah the same bottle filled with 2oz of breast milk. I took KF's suggestions....make it a game. Don't force the bottle on him. Let him "play" with it. We spent about thirty minutes attempting the bottle. In the end, he drank about 1/2 oz. It was disappointing but at least he tolerated our new game.
I emailed A at the DS clinic. I figured I'd initiate the nutritionist connection. It'll be funny, in the end, if we don't need the appointment.
Late yesterday afternoon, while feeling drained, Carl offered him the same bottle (also filled with breast milk). Josiah wasn't interested. After about 15 minutes of trying, I took over. As I approached Josiah, he smiled. Carl and I knew we were being played lol. I snuggled closely with Josiah while offering him the bottle. He drank almost the entire 2oz bottle. I was ecstatic! I felt we had crossed a major hurdle.
Josiah continued to take feedings as usual. During the last feeding of the night, I had an idea. I nursed him on one side then let him take a quick break. I heated up a "nurser" bottle - these are 2oz bottles pre-filled with formula; hospitals often give them out with new baby packages. Again, I snuggled closely with Josiah while offering him the bottle. He drank the entire bottle without complaint. I burped him, nursed him on the other side, and he feel soundly asleep in my arms. I laid him in his crib at approximately 11:30pm. He woke me at 5:30am.
11:30pm to 5:30am....a solid six hours. It's amazing what a difference that has made for my once-tired mind. I feel great today. Josiah has nursed well this morning. I will offer him supplemental bottles again today. I truly believe we've crossed a bridge. I'm feeling very positive. I'm feeling very blessed <3
Friday, March 2, 2012
Exasperated!!!
We took Josiah to the cardiologist today for his first office follow-up appointment, since his surgery. His EKG was great! Then, they weighed him. He weighed in at 9lbs 1.3oz. At best, given that each office has it's own scale, he neither gained nor lost weight. At worst, he lost 2oz since last Friday (at the pediatrician's office). I cannot begin to describe the feeling of complete exasperation, frustration, and despair.
Perhaps it seems like a small thing; perhaps it is. All I know is this: Josiah weighed 7lbs on 10/12/2011. Today, 3/2/12, he weighed 9lbs 1oz. He will be five months old, in ten days. At Jesse's four-month check up, he weighed 15lbs. James, at the same check up, weighed 13lbs. I know the DS plays a role in the slow weight gain, but this isn't right.
We (the professionals and family alike) believed that the heart problems were contributing to his slow weight gain. That excuse can no longer be used. Today's appointment confirmed that Josiah's heart is perfect (a wonderful piece of news that I cannot negate). Is it the Down Syndrome? Is it a feeding issue? Is he not getting enough calories? Does he simply need more calories than an average child? Should we start feeding him cereal? UGH! The questions race through my tired mind.
The surgeon was very pleased with the outcome of Josiah's surgery. Josiah's heart "sounds perfect." His color is good. "He looks like a different kid." "He looks more mature in the way he's moving around." However, "I expected him to come in here having gained a lot of weight so this is disappointing." (Yeah, tell me about it!)
Up until now, Josiah has been exclusively breastfed. He doesn't like the bottle; he won't drink from a bottle. Since surgery, he's been eating every 2-3 hours. It seems impossible to me that the child has gained no weight but numbers do not lie. I don't know what to do....that's the feeling. I hate that feeling. I'm tired and feel I has so little left to give....
We made our way out of the cardiologists office. I immediately walked down the hall to the pediatrician's office. I talked to our favorite nurse M. I voiced my frustration. I asked if we should start Josiah on cereal. I assured her we were doing everything we could to properly nourish our son. She already knows that we are. She said she'd call me later.
We did a few errands, picked up Jesse from school, and made our way home. I was exhausted. I left a message for our EI worker K. I know I'll hear from her as soon as she's available. This afternoon I fed Josiah...off and on....like usual. I went to the store for groceries and bought a different type of bottle - maybe Josiah will drink from this one. It's worth a try.
I talked to M from the pedi's office. The MD said we can start Josiah on cereal. I needed more than that. I didn't know what I needed, but that wasn't enough. I guess I wanted an instant fix.... I was so emotionally spent, my mind couldn't form concrete thoughts by which to gain more information. I ended the call for lack of knowing what else to say. Carl was very supportive of my frustration level. He called the MD's office back again and spoke with our pediatrician. The pedi is sympathetic to the situation and understands the frustration level. He suggests the OT (as the cardiologist did), a nutritionist (specifically with the DS clinic), formula if possible, cereal, the new bottle, and high-calorie formula if we request such. We'll see the pediatrician next Thursday for another weight check.
I called the lactation specialist KF and heard back from her promptly. We chatted for some time. It's nice to have someone who knows the frustration of breastfeeding a baby who doesn't gain weight. She offered some great suggestions. One by one, I'll try them all.
I talked to K for quite some time after. She is another fantastic support. K will put in a referral for OT early next week. It will be, specifically, for feeding. I've entrusted that task to her. We'll see K on Monday and will discuss the details further.
Tomorrow, I'll email A from the DS clinic. I'll explain what's going on with Josiah. I'll ask her what I need to do to initiate a consult with one of their nutritionists. I'll probably hear back from her on Monday.
It's the weekend now....two days, at home, with my wonderful family. I'm going to try to relax a little. I'll attempt some of the new suggestions given to me. Hopefully something will work. I'm going to try to not let it become all-consuming (although it already feels that way sometimes).
In the end, everything will work out. Even the cardiologist said "this is just another little hurdle we have to climb over." Everything will work out.
Climbing up the down staircase isn't always easy....but it's worth every single step <3
Perhaps it seems like a small thing; perhaps it is. All I know is this: Josiah weighed 7lbs on 10/12/2011. Today, 3/2/12, he weighed 9lbs 1oz. He will be five months old, in ten days. At Jesse's four-month check up, he weighed 15lbs. James, at the same check up, weighed 13lbs. I know the DS plays a role in the slow weight gain, but this isn't right.
We (the professionals and family alike) believed that the heart problems were contributing to his slow weight gain. That excuse can no longer be used. Today's appointment confirmed that Josiah's heart is perfect (a wonderful piece of news that I cannot negate). Is it the Down Syndrome? Is it a feeding issue? Is he not getting enough calories? Does he simply need more calories than an average child? Should we start feeding him cereal? UGH! The questions race through my tired mind.
The surgeon was very pleased with the outcome of Josiah's surgery. Josiah's heart "sounds perfect." His color is good. "He looks like a different kid." "He looks more mature in the way he's moving around." However, "I expected him to come in here having gained a lot of weight so this is disappointing." (Yeah, tell me about it!)
Up until now, Josiah has been exclusively breastfed. He doesn't like the bottle; he won't drink from a bottle. Since surgery, he's been eating every 2-3 hours. It seems impossible to me that the child has gained no weight but numbers do not lie. I don't know what to do....that's the feeling. I hate that feeling. I'm tired and feel I has so little left to give....
We made our way out of the cardiologists office. I immediately walked down the hall to the pediatrician's office. I talked to our favorite nurse M. I voiced my frustration. I asked if we should start Josiah on cereal. I assured her we were doing everything we could to properly nourish our son. She already knows that we are. She said she'd call me later.
We did a few errands, picked up Jesse from school, and made our way home. I was exhausted. I left a message for our EI worker K. I know I'll hear from her as soon as she's available. This afternoon I fed Josiah...off and on....like usual. I went to the store for groceries and bought a different type of bottle - maybe Josiah will drink from this one. It's worth a try.
I talked to M from the pedi's office. The MD said we can start Josiah on cereal. I needed more than that. I didn't know what I needed, but that wasn't enough. I guess I wanted an instant fix.... I was so emotionally spent, my mind couldn't form concrete thoughts by which to gain more information. I ended the call for lack of knowing what else to say. Carl was very supportive of my frustration level. He called the MD's office back again and spoke with our pediatrician. The pedi is sympathetic to the situation and understands the frustration level. He suggests the OT (as the cardiologist did), a nutritionist (specifically with the DS clinic), formula if possible, cereal, the new bottle, and high-calorie formula if we request such. We'll see the pediatrician next Thursday for another weight check.
I called the lactation specialist KF and heard back from her promptly. We chatted for some time. It's nice to have someone who knows the frustration of breastfeeding a baby who doesn't gain weight. She offered some great suggestions. One by one, I'll try them all.
I talked to K for quite some time after. She is another fantastic support. K will put in a referral for OT early next week. It will be, specifically, for feeding. I've entrusted that task to her. We'll see K on Monday and will discuss the details further.
Tomorrow, I'll email A from the DS clinic. I'll explain what's going on with Josiah. I'll ask her what I need to do to initiate a consult with one of their nutritionists. I'll probably hear back from her on Monday.
It's the weekend now....two days, at home, with my wonderful family. I'm going to try to relax a little. I'll attempt some of the new suggestions given to me. Hopefully something will work. I'm going to try to not let it become all-consuming (although it already feels that way sometimes).
In the end, everything will work out. Even the cardiologist said "this is just another little hurdle we have to climb over." Everything will work out.
Climbing up the down staircase isn't always easy....but it's worth every single step <3
Subscribe to:
Posts (Atom)