Although this is thoroughly less personal than I would like it to be, I did want too much time to pass before we said a big "Thank You" to our family and friends that have been so supportive over the past two weeks (I know, it feels like much longer already). Your support has come in many ways: phone calls, texts, visits, big baskets of food (and I mean BIG) and money for our mounting medical expenses. We are blessed to have you in our lives.
MANY, MANY, MANY thanks for your thoughtfulness and generosity!
Friday, June 29, 2012
Wednesday, June 27, 2012
Confirmation
I was so greatly anticipating good news today on Keane's weight gain. Fortunately, he has not lost weight. Unfortunately, he really has not gained weight. He only weighed 0.5 oz more today than Monday, which means he weighs the same as last Friday. However, today he also demonstrated that he clearly understands how to take the supplemental formula efficiently and with apparent enjoyment. Since we started giving the formula, he has only been able to slurp down about 0.5 oz in a 30 minute window, using a medicine dropper. Today, on three occasions he ate 1.5 oz or more in less than 20 minutes. I am optimistic that Friday will bring better news on weight gain, especially since I have a phone call with a dietician from the Peds Cardiology office tomorrow. I am hoping she will allow an increase in the formula calories per each serving. I desperately want to avoid the feeding tube.
One piece of good news... Dr. Bob prescribed a feeding schedule that will hopefully leave Ben and I more resembling parents as compared to our current zombie states: feeding at 11pm, 3am and 6-7am, then all day long until his 9p-ish bedtime. Only waking up once in the middle of the night seems doable. In addition, Ben and I are going to start rotating the 3am shift so one of us is getting enough uninterrupted sleep each day to function. With Keane's new found efficiency in taking the formula, the mission seems reasonable for Dad!
We did receive the results of Keane's kerotype test today - he does have Down Syndrome. The test is limited in the information it provides except to say the extra 21st chromosome was "present in all cells." Given he does not present with many of the physical characteristics associated with Down Syndrome, there was a chance he could have a "mosaic" arrangement, in which some cells have 46 chromosomes (no Down Syndrome) and others have 47 (Down Syndrome present). The blood test to date is not thorough enough to say definitively the type of genetic "creativity" that lead to the current arrangement; therefore, following up with a Geneticist is recommended. However, I am unclear as to what the additional information would tell us. Is it actionable? I am doubtful that more information on what may have gone wrong, where or in which parent would benefit us. We do not plan on having any more children. Does more information, in this case, actually change any outcomes or approaches to therapy for Keane? Does it benefit him for us to see a Geneticist? If not, I don't think I need that level of detail. I know, shocking for me to not want all the information, but as my Mom always used to say, "are you helping or hurting?" Granted, that was usually in the context of me making unnecessary comments aimed at my siblings, but I think the general caution still applies.
One piece of good news... Dr. Bob prescribed a feeding schedule that will hopefully leave Ben and I more resembling parents as compared to our current zombie states: feeding at 11pm, 3am and 6-7am, then all day long until his 9p-ish bedtime. Only waking up once in the middle of the night seems doable. In addition, Ben and I are going to start rotating the 3am shift so one of us is getting enough uninterrupted sleep each day to function. With Keane's new found efficiency in taking the formula, the mission seems reasonable for Dad!
We did receive the results of Keane's kerotype test today - he does have Down Syndrome. The test is limited in the information it provides except to say the extra 21st chromosome was "present in all cells." Given he does not present with many of the physical characteristics associated with Down Syndrome, there was a chance he could have a "mosaic" arrangement, in which some cells have 46 chromosomes (no Down Syndrome) and others have 47 (Down Syndrome present). The blood test to date is not thorough enough to say definitively the type of genetic "creativity" that lead to the current arrangement; therefore, following up with a Geneticist is recommended. However, I am unclear as to what the additional information would tell us. Is it actionable? I am doubtful that more information on what may have gone wrong, where or in which parent would benefit us. We do not plan on having any more children. Does more information, in this case, actually change any outcomes or approaches to therapy for Keane? Does it benefit him for us to see a Geneticist? If not, I don't think I need that level of detail. I know, shocking for me to not want all the information, but as my Mom always used to say, "are you helping or hurting?" Granted, that was usually in the context of me making unnecessary comments aimed at my siblings, but I think the general caution still applies.
Monday, June 25, 2012
A disappointing visit today
I was very encouraged after Keane's appointment on Friday. His color was better, he needed less oxygen and gained more than his goal weight. Unfortunately, when I took him to his pediatrician's office this afternoon, he had not gained any weight since Friday. I am so disappointed. I have been feeding him either from me, or with supplemental formula, about every hour when he is awake, plus we haven't been letting him sleep for more than two hours at a time during the day. It's exhausting, especially combined with Avery's high-octane personality! The prescription now is to wake up two-to-three times per night to see if he will eat. If he doesn't gain weight for his Wednesday lunch-time appointment, he may have to have a feeding tube. So....we will feed then feed some more!
First Dance Recital (06/23/12)
I know, no words are necessary...!
In case the video doesn't give you access: http://youtu.be/uS0sG9MUoqs
Grrr.... Holidays!
Today I spoke with the scheduling guru from Dr. Kelly's office (Peds Cardio). Keane will have his sedated echocardiogram on Monday, July 9th. The regularly scheduled cardiac conference to prepare for his surgery will occur on Friday, July 13th. THEN... his surgery date will be scheduled potentially for the week of the 16th or 23rd. I was really hoping to secure an echo appointment for next week; however, 4th of July is putting a damper on my wishes for a timely surgery! I do living in limbo so well...
Saturday, June 23, 2012
Keep it coming Mom!
Keane had a great visit Friday afternoon with Dr. Bob. Good weight gain would be one oz. per day; Keane gained 3.5 oz. in two days. Yes! His lungs were clear and his liver is now back where it should be (i.e. - heart and lungs are functioning better, retaining less fluid and not pushing his liver down in his abdomen). Avery also learned about the secret "sister" kiss on Keane's foot. She loves her brother so much she has been trying to smother him with snotty love on his face. She's been giving secret sister kisses now...! Thanks Dr. Bob!
Friday, June 22, 2012
The stars align?
About five weeks ago, I hired a Nanny in anticipation of working a few hours a week. One of the reasons I really liked Allie was her desire to pursue a graduate school education in early intervention. I remember thinking she likely possessed desirable attributes like patience and empathy. Can you imagine, I hired a Nanny five weeks ago who wants to specialize in early intervention for children with special needs AND is completing her senior year internship at Early Childhood (EC) Cares? EC Cares is the early intervention program at UOregon that Keane will likely be referred. So, likely, Keane will see Allie at home and at therapy.
The stars align in the most amazing ways. All roads over the last few months were leading to right now...
The stars align in the most amazing ways. All roads over the last few months were leading to right now...
Thursday, June 21, 2012
Can't forget...
What is this stuff?
Wednesday, June 20, 2012
When two isn't enough to tango
Thanks for all the support and prayers headed Keane's direction. Last week my biggest concern was my finishing my manuscript for school, starting to actually work a bit again and planning for Avery's birthday party and now...well, my whole world view has changed.
It's so crazy. He doesn't really look that ill. He gets a little pale from time to time, but he laughs, chuckles, plays with his toys, even kicks his sister when given the opportunity. Ironically, in the last couple days he started standing up on both legs, which cracks him up and obviously gives him a tremendous sense of accomplishment. When ever I am in the room, he watches me non-stop. Every time my eyes catch his from across the room, he brings his hands to his mouth and gives this sheepish grin as if to say, "Hi, Mom."
I have good news, sort of, and less than ideal news. We spent about four hours yesterday afternoon at Doernbecher Children's Hospital to see Keane's new best friend, Dr. Kelly, his Pediatric Cardiologist. First the good news: Keane is stable enough to go home for a couple weeks. He needs to gain some weight before his surgery. I have pulled my first crazy Mom card and made him five appointments at his pediatrician's office in the next seven days. The first appointment will be today to get a baseline weight and oxygen saturation level. Dr. Kelly wants him to gain 20 to 30 grams per day and I don't want him to fall behind, so we are going in for a weight check and O2 check on Mondays, Wednesdays and Fridays. Keane was also prescribed and started taking Lasix yesterday. As many of you know, Lasix is an anti-diuretic that will hopefully remove some fluid from around his lungs. I still have a couple oxygen tanks in case my Mommy -dar thinks his oxygen saturation is too low.
The less than ideal news is that his heart is actually worse than Ben and I had understood from our pediatrician and our hours of research. When a normal heart starts to form around 8-ish weeks of gestation, it makes a series of folds that form the four chambers of the heart. It's a little like origami, first it folds in half in one direction (e.g. horizontally), then it folds in half again (e.g. vertically). Hence, four chambers are created. We were under the impression that the heart murmur indicated a hole between two of his heart chambers, causing oxygenated blood to mix with non-oxygenated blood. After reviewing the echo report ourselves and, particularly Ben studying up on all the terms contained within, we were anticipating to hear that Keane had at least three holes that needed to be plugged. That is not what we heard. I think I stopped breathing completely when I realized what Dr. Kelly was telling us - there were no holes. "What?" There were no holes. The folding of heart never happened. There were never complete chambers formed. There's just one big non-hole. There are sort of two incomplete chambers where there should be four. The murmur detected at his visit last week wasn't a murmur at all, although in kids with normal hearts, it would be a murmur. Keane's "murmur" is really blood spilling back to his lungs. Of rouse this couldn't really be detected earlier.... without walls, there is no hole, without a hole, there is no detectable sound.
Gortex. I used to work at REI when I was in grad school (the first time). I have a great sales pitch about Gortex as a superior waterproof product. The surgeon at OHSU, whose only job it is to fix kids with congenital heart conditions, is going to re-build Keane's heart using Gortex. I think if it were not my own child, I would be truly impressed and fascinated. I am still getting over the fact that Keane doesn't even have four heart chambers. When I was pregnant with Keane we were unable to get clean cardiac pictures in utero at my 20 week ultra sound. I went back at 24 weeks - still no clear pictures were obtained. My only question was "Can you tell me if there are four chambers?" The answer. "Yes." I understand now. The pictures weren't unclear. All the blood was mixing together. They thought he was moving, that he was so active, the images couldn't be reliable. They were clear. I don't think, given my risk factors, or lack thereof, that anyone ever considered the images were reliable - he wasn't moving too much, he was just missing at least two walls of his heart altogether.
In two weeks, Keane will return to Doernbecher for a repeat cardiac echo under sedation. Every measurement and every picture will be obtained. Next, Keane will be presented to the entire pediatric cardiac team - "cardiac conference." The entire team will decide how to rebuild his heart, how to make four chambers out of only two partial walls. Obviously he will require a full open procedure, go on cardiac bypass, and hopefully, when it's all said and done, his heart will accept its new structure, they will divert the blood back to his heart, off the bypass machine, and it will beat for the first time, in the right way. His surgery will be in about three weeks. If all goes well, he will only be in the hospital about a week. Then, Ben and I have decided we will stay in Portland, at my parent's house, for another week before heading home to start the next steps in a long journey.
I know many of you are waiting for confirmation of the diagnosis of Down Syndrome. We have not received any results of the chromosomal count and structure. However, we all need to move toward putting the systems and early intervention supports in place that will help Keane keep up with his age cohort in physical, emotional and cognitive development. Ben and I do not need to wait for the results of the kerotyping; kids with only 46 chromosomes almost always have four heart chambers. Our little man has a little extra something that makes him a little extra cool - one more chromosome and one more chance at a long, healthy life thanks to a doctor with a great English accent (his surgeon) and Drs. Kelly and Velarde (our pediatrician).
Of all the learning opportunities I have had in my life, exposure to children or adults with developmental disabilities has not been one of them. The medical literature and academic sites are a little overwhelming - potential health issues, barriers, etc. I have found, by far, the two best resources in my life are: (1) my sister-in-law, Amanda, who has already discovered through her network as a educational specialist for children with special needs that Lane County has one of the best early intervention programs in the State and (2) this website: www.noahsdad.com. In Noah's Dad's words, the website is "A window for you to see hope, encouragement, and normalcy [of raising a child with Down Syndrome]."
With love and hope,
Erin
It's so crazy. He doesn't really look that ill. He gets a little pale from time to time, but he laughs, chuckles, plays with his toys, even kicks his sister when given the opportunity. Ironically, in the last couple days he started standing up on both legs, which cracks him up and obviously gives him a tremendous sense of accomplishment. When ever I am in the room, he watches me non-stop. Every time my eyes catch his from across the room, he brings his hands to his mouth and gives this sheepish grin as if to say, "Hi, Mom."
I have good news, sort of, and less than ideal news. We spent about four hours yesterday afternoon at Doernbecher Children's Hospital to see Keane's new best friend, Dr. Kelly, his Pediatric Cardiologist. First the good news: Keane is stable enough to go home for a couple weeks. He needs to gain some weight before his surgery. I have pulled my first crazy Mom card and made him five appointments at his pediatrician's office in the next seven days. The first appointment will be today to get a baseline weight and oxygen saturation level. Dr. Kelly wants him to gain 20 to 30 grams per day and I don't want him to fall behind, so we are going in for a weight check and O2 check on Mondays, Wednesdays and Fridays. Keane was also prescribed and started taking Lasix yesterday. As many of you know, Lasix is an anti-diuretic that will hopefully remove some fluid from around his lungs. I still have a couple oxygen tanks in case my Mommy -dar thinks his oxygen saturation is too low.
The less than ideal news is that his heart is actually worse than Ben and I had understood from our pediatrician and our hours of research. When a normal heart starts to form around 8-ish weeks of gestation, it makes a series of folds that form the four chambers of the heart. It's a little like origami, first it folds in half in one direction (e.g. horizontally), then it folds in half again (e.g. vertically). Hence, four chambers are created. We were under the impression that the heart murmur indicated a hole between two of his heart chambers, causing oxygenated blood to mix with non-oxygenated blood. After reviewing the echo report ourselves and, particularly Ben studying up on all the terms contained within, we were anticipating to hear that Keane had at least three holes that needed to be plugged. That is not what we heard. I think I stopped breathing completely when I realized what Dr. Kelly was telling us - there were no holes. "What?" There were no holes. The folding of heart never happened. There were never complete chambers formed. There's just one big non-hole. There are sort of two incomplete chambers where there should be four. The murmur detected at his visit last week wasn't a murmur at all, although in kids with normal hearts, it would be a murmur. Keane's "murmur" is really blood spilling back to his lungs. Of rouse this couldn't really be detected earlier.... without walls, there is no hole, without a hole, there is no detectable sound.
Gortex. I used to work at REI when I was in grad school (the first time). I have a great sales pitch about Gortex as a superior waterproof product. The surgeon at OHSU, whose only job it is to fix kids with congenital heart conditions, is going to re-build Keane's heart using Gortex. I think if it were not my own child, I would be truly impressed and fascinated. I am still getting over the fact that Keane doesn't even have four heart chambers. When I was pregnant with Keane we were unable to get clean cardiac pictures in utero at my 20 week ultra sound. I went back at 24 weeks - still no clear pictures were obtained. My only question was "Can you tell me if there are four chambers?" The answer. "Yes." I understand now. The pictures weren't unclear. All the blood was mixing together. They thought he was moving, that he was so active, the images couldn't be reliable. They were clear. I don't think, given my risk factors, or lack thereof, that anyone ever considered the images were reliable - he wasn't moving too much, he was just missing at least two walls of his heart altogether.
In two weeks, Keane will return to Doernbecher for a repeat cardiac echo under sedation. Every measurement and every picture will be obtained. Next, Keane will be presented to the entire pediatric cardiac team - "cardiac conference." The entire team will decide how to rebuild his heart, how to make four chambers out of only two partial walls. Obviously he will require a full open procedure, go on cardiac bypass, and hopefully, when it's all said and done, his heart will accept its new structure, they will divert the blood back to his heart, off the bypass machine, and it will beat for the first time, in the right way. His surgery will be in about three weeks. If all goes well, he will only be in the hospital about a week. Then, Ben and I have decided we will stay in Portland, at my parent's house, for another week before heading home to start the next steps in a long journey.
I know many of you are waiting for confirmation of the diagnosis of Down Syndrome. We have not received any results of the chromosomal count and structure. However, we all need to move toward putting the systems and early intervention supports in place that will help Keane keep up with his age cohort in physical, emotional and cognitive development. Ben and I do not need to wait for the results of the kerotyping; kids with only 46 chromosomes almost always have four heart chambers. Our little man has a little extra something that makes him a little extra cool - one more chromosome and one more chance at a long, healthy life thanks to a doctor with a great English accent (his surgeon) and Drs. Kelly and Velarde (our pediatrician).
Of all the learning opportunities I have had in my life, exposure to children or adults with developmental disabilities has not been one of them. The medical literature and academic sites are a little overwhelming - potential health issues, barriers, etc. I have found, by far, the two best resources in my life are: (1) my sister-in-law, Amanda, who has already discovered through her network as a educational specialist for children with special needs that Lane County has one of the best early intervention programs in the State and (2) this website: www.noahsdad.com. In Noah's Dad's words, the website is "A window for you to see hope, encouragement, and normalcy [of raising a child with Down Syndrome]."
With love and hope,
Erin
Monday, June 18, 2012
Mom hijacks Avery's blog
Some things are hard to write from the voice of a four year old... that's right, today is Avery's fourth birthday! It broke my heart that when she woke up on her birthday her Mom and brother weren't there to greet her, make her the requested chocolate chip pancakes, or give her presents. Instead, Mom and Keane were in the hospital, both curled up in a Pediatric sized bed, bars up on the side, waiting to better understand "what now?"
On Thursday, I brought Keane in for his four month "well" child check up. I had a few concerns, of course, what Mom doesn't? However, to be honest, I am still in shock and have not processed the information I am going to share with you...
Keane has an AV canal defect in his heart. Basically, it's a hole where there should be no hole. The hole discovered after a murmur was detected on his physical exam. Then the words that leave you unable to speak, "have you ever had concerns about the development of your baby?" Yes, I noticed he was still quite small, didn't have the physical capabilities that Avery did at the same age. I guess I thought he was a boy who liked to eat and lay around on the couch. It sounds so ignorant now. Did I know that the hole in the heart was most commonly associated with Down Syndrome? Actually, intellectually I did. I took quite a bit of genetics, pathophysiology, etc. in college. Did I think my son had Down Syndrome? Well, I never really thought about it. After all, I had the perinatal tests and his anatomy had been reviewed on ultra sound. I thought of all the things that could happen to your child, surely you crossed off heart anatomy and were sufficiently reassured about the risk for Down Syndrome in utero.
Our pediatrician consulted with the pediatricians at the Children's Hospital in Portland and we have a pre-operative consult on Tuesday, June 19th. My sweet, lovely and perfect little boy has a hole in his heart and needs open heart surgery to repair it. You know, when I was in college, I worked in pediatric open heart cases, as a tech and OR assistant. For all that I understand about the surgical process, my job ended in the OR. I really have very little understanding about the road ahead. I am suffocating under my lack of information and knowledge, secondary to my own broken heart. There are not enough Google hours in the day to feel fully prepared, by this week, for the road ahead.
So... that was Thursday, the visit; Friday the cardiac echo; Saturday Avery's birthday party; Sunday night, my suspicion that something was wrong...or worse...or not right. I called the pediatrician. We met at the ER. Blah, blah, blah, blah, "congestive heart failure," blah, blah, blah, "supplemental oxygen needed" blah, blah, blah, "admit you tonight" blah, blah, blah. What did we miss? How could we be so attentive to his every need and not know he was sick? He had been on his growth curve at every prior visit... then at four months he finally fell off the curve. All of his energy has been going to his heart.
Now we are in Portland, at my parent's house, with our supplemental oxygen and our now medically frail child that was all to healthy to us only five days ago, preparing to eat birthday cake with Avery. Is this real?
We have been blessed and embraced by an amazing network of family and friends. Many thanks to all who helped pull off an amazing birthday party for Avery on Saturday. We will forever be grateful. We technically do not have formal confirmation of Keane's kerotype test - whether or not he has Down Syndrome. Who cares, really? He has a hole in his heart and he is rapidly deteriorating. Step 1 - fix heart. Step 2 - love, love, love for what ever steps come next.
We will be posting updates and sharing pertinent results and next steps when we know them through the blog. We love you all very much.
With hope and love....
On Thursday, I brought Keane in for his four month "well" child check up. I had a few concerns, of course, what Mom doesn't? However, to be honest, I am still in shock and have not processed the information I am going to share with you...
Keane has an AV canal defect in his heart. Basically, it's a hole where there should be no hole. The hole discovered after a murmur was detected on his physical exam. Then the words that leave you unable to speak, "have you ever had concerns about the development of your baby?" Yes, I noticed he was still quite small, didn't have the physical capabilities that Avery did at the same age. I guess I thought he was a boy who liked to eat and lay around on the couch. It sounds so ignorant now. Did I know that the hole in the heart was most commonly associated with Down Syndrome? Actually, intellectually I did. I took quite a bit of genetics, pathophysiology, etc. in college. Did I think my son had Down Syndrome? Well, I never really thought about it. After all, I had the perinatal tests and his anatomy had been reviewed on ultra sound. I thought of all the things that could happen to your child, surely you crossed off heart anatomy and were sufficiently reassured about the risk for Down Syndrome in utero.
Our pediatrician consulted with the pediatricians at the Children's Hospital in Portland and we have a pre-operative consult on Tuesday, June 19th. My sweet, lovely and perfect little boy has a hole in his heart and needs open heart surgery to repair it. You know, when I was in college, I worked in pediatric open heart cases, as a tech and OR assistant. For all that I understand about the surgical process, my job ended in the OR. I really have very little understanding about the road ahead. I am suffocating under my lack of information and knowledge, secondary to my own broken heart. There are not enough Google hours in the day to feel fully prepared, by this week, for the road ahead.
So... that was Thursday, the visit; Friday the cardiac echo; Saturday Avery's birthday party; Sunday night, my suspicion that something was wrong...or worse...or not right. I called the pediatrician. We met at the ER. Blah, blah, blah, blah, "congestive heart failure," blah, blah, blah, "supplemental oxygen needed" blah, blah, blah, "admit you tonight" blah, blah, blah. What did we miss? How could we be so attentive to his every need and not know he was sick? He had been on his growth curve at every prior visit... then at four months he finally fell off the curve. All of his energy has been going to his heart.
Now we are in Portland, at my parent's house, with our supplemental oxygen and our now medically frail child that was all to healthy to us only five days ago, preparing to eat birthday cake with Avery. Is this real?
We have been blessed and embraced by an amazing network of family and friends. Many thanks to all who helped pull off an amazing birthday party for Avery on Saturday. We will forever be grateful. We technically do not have formal confirmation of Keane's kerotype test - whether or not he has Down Syndrome. Who cares, really? He has a hole in his heart and he is rapidly deteriorating. Step 1 - fix heart. Step 2 - love, love, love for what ever steps come next.
We will be posting updates and sharing pertinent results and next steps when we know them through the blog. We love you all very much.
With hope and love....
Friday, June 8, 2012
Super cute professional pics
Located at http://maricarlianne.com/order
When you go to the website click the Access Gallery link and enter in the access code below:
Access code: gmajill
Next, view cute pics!
Enjoy!
When you go to the website click the Access Gallery link and enter in the access code below:
Access code: gmajill
Next, view cute pics!
Enjoy!
Subscribe to:
Posts (Atom)