We had quite the busy week last week. We had a visit from our early intervention dietician. Although she is very nice, I find these visits to be a little rough on myself. I always wonder if Lochlan has gained weight or height, and if he didn't, then the food I am making for him is not good enough. We cut back on monthly visits, and decided on every other month since I have the hang of choosing, calculating, and blenderizing Lochlan's feeding tube food. I was very nervous because he hasn't been weighed for 2 whole months. My worst fear is that if he stops growing, then they will make us give him formula again. It's never been the case since starting real food, but the fear is always there. Everything went well and he is staying on his curve, but it still makes me and Adam sad to talk about all of the months of growth that he lost when he was an infant. It makes us even sadder to see him side by side kids his age. I'm hoping that one day we can overcome our disappointment, but we still hold out hope that Lochlan will get a transplant in time to grow to a normal height.
We also took the trip down to Albany for Lochlan's urology appointment. The second Lochlan and I entered the ultrasound room, we seemed to panic at the same time. The tech requested that I hold him down on the table, but I just could not do that to my baby. I have always held him during the exams, so I just plopped myself down on the child size table and did my best to calm Lochlan. Even though the ultrasound is completely painfree, Lochlan was hysterical. For a brief moment I was tempted to refuse the test, but we stuck it out. Once Lochlan calmed down, my thoughts began to spiral out of control while I stared at the screen. Every time we get an ultrasound the tech always gets quiet and begins to ask questions to figure out if we know how terrible things are in there. In the dark ultrasound room, the past memories of bad news always come back. It's usually in that moment when I refuse the exam for the right side and then abruptly announce that yes, we know, we expect that Lochlan will need a transplant. The exam ended and then we were ushered into another room for the doc. Every time we meet with the urologist he is genuinely amazed at Lochlan's wellness. He is the same urologist that once told us that Lochlan likely would not make it without dialysis at 2 weeks old. So as we chatted, I brought up that we had started potty training. Lochlan immediately announced that he had to pee. The doc handed us a cup into which Lochlan peed excitedly (apparently peeing in cups is awesome for a 2 year old). It was like Lochlan knew that his job was to pee at the urologist's office, and although he was in a diaper for the day, he didn't pee once in it that day. Even though things are going well now, we remain cautious because Lochlan's urethra has been damaged so severely that it could close up again. The other issue is that he urinates so frequently from the kidney disease that it will be hard to stay accident free when he starts preschool in September.
Our busy week was rounded out by a biannual NYS Early Intervention meeting. As Lochlan nears his third birthday, he will lose all of his early intervention services. Right now we have a feeding therapist, a dietician and an occupational therapist. I was sort stunned when I was notified that the school district would not likely pick up his current services. With the grace of God, Lochlan has met all of his milestones except eating, but it also means that he will not get any services at school. I was told that if he still has a feeding tube, I will need to make arrangements for someone to visit school during the day to give him his tube feeds and medications that go into his tube. While I'd like to start calling the school district to complain, I'm choosing to hold out hope that everything will work out. Who knows? Maybe he will have a brand new working kidney and then we can kick the tube to the curb by Kindergarten.
Thank you for following Lochlan's journey. Please don't hesitate to ask us questions, and please keep us in your thoughts and prayers. The positive impact of everyone's thoughts and prayers thus far has been more important than you all know.
Wednesday, August 12, 2015
Saturday, May 16, 2015
Look who's Two!
We were awoken this morning at 5am by Lochlan's whining. Usually, we wait a little bit and then he falls asleep until 6 or 6:30. This morning, Adam was insistent that he should go and get him. I was glad that Adam brought Lochlan to our bed because I was granted an extra hour of sleep and some well needed snuggle time. Later in the morning Adam told me that he was awoken during a flash back dream of when we were in the NICU. He had a sudden moment of panic and needed to make sure Lochlan was ok. Lochlan is not only OK, he is doing great.
I too was hit by a wave of memories today. I can still feel my heart sink when I think of when I realized that he had no anus, the feeling of letting Lochlan go on the ambulance without me, the exhaustion of standing at Lochlan's side less than 24 hours after he was born, and then realizing that I would not be able to sleep next to my one day old son after his surgery. They were truly the worst moments of my life, but I am so glad that Lochlan will never remember any of it. I'm hoping that as the years pass, my memories will become hazy and less traumatic. I also realize that reliving the moments is something I shouldn't do, so instead, I focus on the bright little boy Lochlan has become.
I follow families that have children that undergo dialysis as infants for months on end until they receive a donor kidney, so even though we have been through a lot, I am happy that we have been able to give Lochlan a somewhat normal life for his first two years of life. Surprisingly, Lochlan doesn't mind his daily shots, constant tube feedings, or bowel regimen. Our hope is that as he grows up with these daily medical needs, he won't feel ashamed or like an outcast. I must say that I tube feed him anywhere and everywhere, and so far our community has been so supportive. I feel awkward feeding him in front of other parents, but it gives me hope because no one has ever expressed disgust or hostility. Without going in to detail, we've started giving Lochlan a potty routine, and he has been amazingly receptive to it. He is so brave and beams with pride when he is done on his potty. His new phrase is, "I dit" which means, "I did it." Lochlan is clearly gaining the determination that it takes to live with a life-long illness.
Last time I posted, Lochlan's Nephrologist mentioned dialysis, but we are happy to report that Lochlan had a little growth spurt, and he will not need dialysis at the moment. We are hesitant now to make any assumptions as to when Lochlan will need dialysis or a transplant. At some point, Lochlan's kidney will reach a tipping point and his kidney function will decline at a steady rate. Until then, Adam and I continue to attempt to treat this time period like a gift of freedom from extra tubes and needles. With a little faith and luck, we are hoping that we will be able to spend the next year away from the hospital. The MRI done in March showed NO tethered cord. It was a huge relief to know that Lochlan will not need spinal surgery. However, staying true to Lochlan's medical history, the report didn't end there. The MRI showed areas of Lochlan's brain that were developmentally abnormal, and that his spinal cord didn't develop down as far as it should have. Because Lochlan has never had seizures and his neurological exams have always been normal, these incidental findings may never affect him.
Last time I updated the blog, Lochlan was eating really well and enjoying it. He quickly gained back all of the weight lost during a horrendous stomach bug plus some, but he has since stopped eating. Both Adam and I admitted to each other today how much it crushed us that he didn't even want to hold his cupcake or stick a finger in the frosting. He did however have a blast blowing out the candle. Despite still mourning not having a child that eats normally, Adam and I mentally condition ourselves to appreciate the small things. A year ago, we were uncertain of how Lochlan would fair on a real food diet. I was deathly afraid of not following the doctor's orders for formula feeding, but I can say that I have mastered Lochlan's blenderized diet in the past year. Many medically complex children live with chronic GI disfunction, so we are happy that we have overcome the odds. Watching Lochlan's growth curve has kept us on the edge our seats, but it gives me the greatest pride to see how far he has come. Watching Lochlan grow into the active, good-humored little monster that he is, has given me the certainty that he will not only be OK, he will be great!
I too was hit by a wave of memories today. I can still feel my heart sink when I think of when I realized that he had no anus, the feeling of letting Lochlan go on the ambulance without me, the exhaustion of standing at Lochlan's side less than 24 hours after he was born, and then realizing that I would not be able to sleep next to my one day old son after his surgery. They were truly the worst moments of my life, but I am so glad that Lochlan will never remember any of it. I'm hoping that as the years pass, my memories will become hazy and less traumatic. I also realize that reliving the moments is something I shouldn't do, so instead, I focus on the bright little boy Lochlan has become.
I follow families that have children that undergo dialysis as infants for months on end until they receive a donor kidney, so even though we have been through a lot, I am happy that we have been able to give Lochlan a somewhat normal life for his first two years of life. Surprisingly, Lochlan doesn't mind his daily shots, constant tube feedings, or bowel regimen. Our hope is that as he grows up with these daily medical needs, he won't feel ashamed or like an outcast. I must say that I tube feed him anywhere and everywhere, and so far our community has been so supportive. I feel awkward feeding him in front of other parents, but it gives me hope because no one has ever expressed disgust or hostility. Without going in to detail, we've started giving Lochlan a potty routine, and he has been amazingly receptive to it. He is so brave and beams with pride when he is done on his potty. His new phrase is, "I dit" which means, "I did it." Lochlan is clearly gaining the determination that it takes to live with a life-long illness.
Last time I posted, Lochlan's Nephrologist mentioned dialysis, but we are happy to report that Lochlan had a little growth spurt, and he will not need dialysis at the moment. We are hesitant now to make any assumptions as to when Lochlan will need dialysis or a transplant. At some point, Lochlan's kidney will reach a tipping point and his kidney function will decline at a steady rate. Until then, Adam and I continue to attempt to treat this time period like a gift of freedom from extra tubes and needles. With a little faith and luck, we are hoping that we will be able to spend the next year away from the hospital. The MRI done in March showed NO tethered cord. It was a huge relief to know that Lochlan will not need spinal surgery. However, staying true to Lochlan's medical history, the report didn't end there. The MRI showed areas of Lochlan's brain that were developmentally abnormal, and that his spinal cord didn't develop down as far as it should have. Because Lochlan has never had seizures and his neurological exams have always been normal, these incidental findings may never affect him.
Last time I updated the blog, Lochlan was eating really well and enjoying it. He quickly gained back all of the weight lost during a horrendous stomach bug plus some, but he has since stopped eating. Both Adam and I admitted to each other today how much it crushed us that he didn't even want to hold his cupcake or stick a finger in the frosting. He did however have a blast blowing out the candle. Despite still mourning not having a child that eats normally, Adam and I mentally condition ourselves to appreciate the small things. A year ago, we were uncertain of how Lochlan would fair on a real food diet. I was deathly afraid of not following the doctor's orders for formula feeding, but I can say that I have mastered Lochlan's blenderized diet in the past year. Many medically complex children live with chronic GI disfunction, so we are happy that we have overcome the odds. Watching Lochlan's growth curve has kept us on the edge our seats, but it gives me the greatest pride to see how far he has come. Watching Lochlan grow into the active, good-humored little monster that he is, has given me the certainty that he will not only be OK, he will be great!
Monday, February 23, 2015
Lochlan's BIG news!
Two weeks ago, Lochlan had a nasty stomach bug which was awful because he lost at least two pounds. With the support of Lochlan's amazing pediatrician and GI doc, we were able to keep him out of the hospital. Considering it took him six months to gain two pounds, I was beyond upset. He looked so sickly and thin that it hurt my heart every time I looked at him. Once he recovered, he must have been so hungry that he finally had the motivation to EAT! He has been an apple, puff, cheese, cheerio, and popcorn eating machine for the past week. Yes, the same child that will not let baby food touch his lips. It truly feels like a miracle because I really thought that he would not eat until he got his transplant. He still has a long way to go and he will need his feeding tube for a while after his transplant, but this week has quieted my fears that something is wrong in Lochlan's throat. Our next goal is to get him to chew, but I think that will come.
In other news: Lochlan's nephrologist dropped a bomb and suggested that we should start thinking about dialysis because he is having a hard time gaining weight and growing. While we were in Boston, they felt that if we could find a live donor, we could transplant before dialysis. We are currently looking for an adult donor with O blood type in excellent health that feels strongly about helping Lochlan. There are two possible donors so far, but because the transplant center does everything to protect the donor, it is hard to find someone that passes all of the health tests. Initial blood testing will happen for all of the possible donors in a local lab at the same time. I will write an extensive post after I do all of my research because the details of being a live organ donor are interesting.
After such an enjoyable uneventful holiday season, we are starting to make our way back into planning for the future. The future is really hard to think about because dialysis and transplant stand in the way like a big speed bump. Seriously, they stand in the way of school, vacations, jobs, house projects and everything else. Thanks to some really kind people from the Saratoga Springs Fire Department and a fireman's legacy, we have a great event to look forward to. It involves a family barbecue, a fundraiser for Lochlan, and a motorcycle ride on September 19th. I will post more details when they become available.
Lochlan will have an MRI on March 18th to see if his spine is tethered. I want to hope that it will be good news, but realistically it is likely that he will need some sort of surgery on his spine. There is no news on Lochlan's heart because his insurance does not participate with the one local pediatric cardiology group. With everything going on, I have been unable to give it my mama bear's all to get it covered. Hopefully this week we can get the gap exception to make an appointment. Maybe between arguing with Caremark over Lochlan's important medictions, I will get sassy enough to get it done.
Sometimes all of this feels like running a marathon with two toddlers on my back, and when I think I want to just give up, all of you special people pick us up and carry us until we are able to run again. I know for sure that we could not do it on our own, so we thank everyone that reads this and cheers Lochlan and our family on.
In other news: Lochlan's nephrologist dropped a bomb and suggested that we should start thinking about dialysis because he is having a hard time gaining weight and growing. While we were in Boston, they felt that if we could find a live donor, we could transplant before dialysis. We are currently looking for an adult donor with O blood type in excellent health that feels strongly about helping Lochlan. There are two possible donors so far, but because the transplant center does everything to protect the donor, it is hard to find someone that passes all of the health tests. Initial blood testing will happen for all of the possible donors in a local lab at the same time. I will write an extensive post after I do all of my research because the details of being a live organ donor are interesting.
After such an enjoyable uneventful holiday season, we are starting to make our way back into planning for the future. The future is really hard to think about because dialysis and transplant stand in the way like a big speed bump. Seriously, they stand in the way of school, vacations, jobs, house projects and everything else. Thanks to some really kind people from the Saratoga Springs Fire Department and a fireman's legacy, we have a great event to look forward to. It involves a family barbecue, a fundraiser for Lochlan, and a motorcycle ride on September 19th. I will post more details when they become available.
Lochlan will have an MRI on March 18th to see if his spine is tethered. I want to hope that it will be good news, but realistically it is likely that he will need some sort of surgery on his spine. There is no news on Lochlan's heart because his insurance does not participate with the one local pediatric cardiology group. With everything going on, I have been unable to give it my mama bear's all to get it covered. Hopefully this week we can get the gap exception to make an appointment. Maybe between arguing with Caremark over Lochlan's important medictions, I will get sassy enough to get it done.
Sometimes all of this feels like running a marathon with two toddlers on my back, and when I think I want to just give up, all of you special people pick us up and carry us until we are able to run again. I know for sure that we could not do it on our own, so we thank everyone that reads this and cheers Lochlan and our family on.
Saturday, November 22, 2014
18 month update
I have had zero time to update the blog, so I decided that today I would put Lochlan in childcare and update you all on the little guy. Yes I know, I'm supposed to be exercising, but I tend to misuse the Y's childcare room when I just want to write or relax. The Y is super important for Lochlan because he has the chance to learn how to separate from me and socialize with other toddlers. The other interesting reason is that Lochlan needs to be exposed to as many viruses and pathogens before his transplant. His immune system will be suppressed for the life of the transplanted kidney and he will be better off if he is naturally immune to germs. I'm not sure where I would be without the great people at the Y. My greatest support comes from the women who care for the children in the chidcare room, Moms at preschool, and all of the fabulous women that always stop to ask me how Lochlan and Mommy are doing. I am also so grateful that I continue my love of Zumba even when I am feeling down and lazy.
Lochlan had his urethra repaired in Boston at the end of August, and had his vesicostomy closed a few weeks ago in Albany. So far, he is urinating out of his penis the way he should (fingers crossed). We are so happy because his kidney function has remained stable after they closed his vesicostomy. We will find out if the urine continues to reflux into his kidney next week. We are hoping that Lochlan will continue to pee, his bladder is working, and we won't have to continuously catheterize him or reimplant the ureter. I am really hoping that we can move past this because Lochlan has some other problems that we should address before he can get his transplant.
Next, we will need to schedule an MRI to investigate Lochlan's spinal defect. As far as we know, his tailbone is fused and rotated out. Unfortunately, it would not be a surprise if his spinal cord is tethered. If the cord is tethered, as he grows it could sever and cause neurological deficits. Fortunately, surgical intervention is a permanent cure. Parents of other VACTERL children remark that the specific surgery tends go smoothly without many complications.
The next priority is to follow-up with cardiology to figure out the extent of Lochlan's PFO. It is a hole between the upper chambers of the heart that usually closes when the child is born. We ran into some problems post-anesthesia in Boston, and the team was certain that his problem was exacerbated by the oxygenated blood mixing with the deoxygenated blood in the heart. The good news is that if he does need surgical intervention for that, it is done with ultrasound and a catheter inserted into a large vein. Compared to his many other surgeries, it seems minimally invasive.
Since I obsess over Lochlan's GI and weight gain problems, you probably all know that growth is always the problem that takes priority over everything. He continues to have little interest in eating, and tends to gag and vomit if he manages to get anything into his mouth. We are fortunate to have a very patient feeding therapist, and so far Lochlan enjoys his time in the highchair. I continue to kill myself by creating and making blenderized food for his feeding tube, only for it to end up all over my home and everyone's clothing. While I am amazed that his kidney function has remained stable, I know that part of it is because he hasn't had enough growth to stress the kidney. Lochlan hasn't gained any weight since before he was in Boston. There is one thing worse than watching your child starve, and that is to watch your child be happy to starve. After Lochlan vomits, he is happy. So far the only thing that Lochlan tolerates is breast milk. I stopped pumping a month ago, but a very special mama continues to pump for her baby and gives us the rest. We are so fortunate to have this liquid gold because the doctors allow us to feed it to him when he is supposed to have a clear liquid diet before and after procedures. It has kept him from needing IV fluids and the dreaded overnight admission to the hospital when he had the whole UTI debacle. Also, we give it to Lochlan overnight because he is able to easily digest it while he sleeps.
Although I constantly worry about Lochlan's quality of life, he is generally happy most of the time. He gets a shot every night and an especially painful one once a week, but we try to do it quickly and give him lots of snuggles afterwards. We have started teaching Lochlan that bath time is fun and not torture now that he is allowed to be submerged in water. It broke my heart the first few times we tried. Currently, he enjoys baths as long as we don't wash his hair and as long as Declan is in there with him. Declan continues to cheer his brother up when he is sad, and dutifully role models naughty behavior. Lochlan's favorite book is Brown Bear, Brown Bear What Do You See? His favorite word is turkey, and he loves to mimic an elephant. I am surprised by how much energy he has and how busy he is when he plays.
The years ahead will get tough, so we try and focus on being happy that we are not on dialysis yet, or making frequent visits to Boston. We depend on the incredible amount of kindness and support that you all give us. This time last year was especially rough, but we made it through with the help of our family and friends. We couldn't be happier to spend a somewhat normal holiday season together this year.
Lochlan had his urethra repaired in Boston at the end of August, and had his vesicostomy closed a few weeks ago in Albany. So far, he is urinating out of his penis the way he should (fingers crossed). We are so happy because his kidney function has remained stable after they closed his vesicostomy. We will find out if the urine continues to reflux into his kidney next week. We are hoping that Lochlan will continue to pee, his bladder is working, and we won't have to continuously catheterize him or reimplant the ureter. I am really hoping that we can move past this because Lochlan has some other problems that we should address before he can get his transplant.
Next, we will need to schedule an MRI to investigate Lochlan's spinal defect. As far as we know, his tailbone is fused and rotated out. Unfortunately, it would not be a surprise if his spinal cord is tethered. If the cord is tethered, as he grows it could sever and cause neurological deficits. Fortunately, surgical intervention is a permanent cure. Parents of other VACTERL children remark that the specific surgery tends go smoothly without many complications.
The next priority is to follow-up with cardiology to figure out the extent of Lochlan's PFO. It is a hole between the upper chambers of the heart that usually closes when the child is born. We ran into some problems post-anesthesia in Boston, and the team was certain that his problem was exacerbated by the oxygenated blood mixing with the deoxygenated blood in the heart. The good news is that if he does need surgical intervention for that, it is done with ultrasound and a catheter inserted into a large vein. Compared to his many other surgeries, it seems minimally invasive.
Since I obsess over Lochlan's GI and weight gain problems, you probably all know that growth is always the problem that takes priority over everything. He continues to have little interest in eating, and tends to gag and vomit if he manages to get anything into his mouth. We are fortunate to have a very patient feeding therapist, and so far Lochlan enjoys his time in the highchair. I continue to kill myself by creating and making blenderized food for his feeding tube, only for it to end up all over my home and everyone's clothing. While I am amazed that his kidney function has remained stable, I know that part of it is because he hasn't had enough growth to stress the kidney. Lochlan hasn't gained any weight since before he was in Boston. There is one thing worse than watching your child starve, and that is to watch your child be happy to starve. After Lochlan vomits, he is happy. So far the only thing that Lochlan tolerates is breast milk. I stopped pumping a month ago, but a very special mama continues to pump for her baby and gives us the rest. We are so fortunate to have this liquid gold because the doctors allow us to feed it to him when he is supposed to have a clear liquid diet before and after procedures. It has kept him from needing IV fluids and the dreaded overnight admission to the hospital when he had the whole UTI debacle. Also, we give it to Lochlan overnight because he is able to easily digest it while he sleeps.
Although I constantly worry about Lochlan's quality of life, he is generally happy most of the time. He gets a shot every night and an especially painful one once a week, but we try to do it quickly and give him lots of snuggles afterwards. We have started teaching Lochlan that bath time is fun and not torture now that he is allowed to be submerged in water. It broke my heart the first few times we tried. Currently, he enjoys baths as long as we don't wash his hair and as long as Declan is in there with him. Declan continues to cheer his brother up when he is sad, and dutifully role models naughty behavior. Lochlan's favorite book is Brown Bear, Brown Bear What Do You See? His favorite word is turkey, and he loves to mimic an elephant. I am surprised by how much energy he has and how busy he is when he plays.
The years ahead will get tough, so we try and focus on being happy that we are not on dialysis yet, or making frequent visits to Boston. We depend on the incredible amount of kindness and support that you all give us. This time last year was especially rough, but we made it through with the help of our family and friends. We couldn't be happier to spend a somewhat normal holiday season together this year.
Saturday, August 23, 2014
Getting ready for surgery.
We visited Boston Children's Hospital back in May. While we were there, we had some imaging and underwent neurological testing of the bladder. I was so impressed by the way that we were treated there that our decision to take Lochlan's urological care to Boston, now seems like a no-brainer. The good news is that Lochlan's bladder and lower GI function all seem intact. Lochlan's neurologist would like to do an MRI at some point to rule out a tethered spinal cord, but he gave us his blessing to go ahead and find a permanent way for Lochlan to urinate. We have booked the OR for this Friday.
In order to prevent Lochlan from undergoing unnecessary anesthesia, they plan on using a scope to evaluate Lochlan's urethral stricture, and then doing the surgery while he is still under anesthesia. The urology team is optimistic that they will be able to reconstruct his urethra, but they will not be certain until they use the scope. If they are unable to reconnect Lochlan's urethra, they will find another permanent solution. Lochlan's urologist has estimated that we will be in the hospital for 5 days and then we will need to stay in the area for another 2 weeks.
There are way too many factors to be nervous about. This week has been horrible. Lochlan has been vomiting non-stop and everyone has been sick (except Declan of course, knock on wood). My biggest fear is that Lochlan will not be well enough to get surgery, or his blood work will be awful. I have already taken 3 weeks off at work, and it will be impossible to get the time back if we have to reschedule. I'm also worried that reconstructing his urethra will result in more strictures and surgeries. Our number one priority has always been Lochlan's quality of life, and a surgery that leads to more surgeries is not what we want for Lochlan. It could also delay Lochlan's kidney transplant.
We have been trying to ignore the overall doom and gloom feeling that came with scheduling the surgery, but we just can't shake it. Every year we look forward to going to Martha's Vineyard with my parents, but we could not make it happen this year because of the surgery. Even last year, when we were at our lowest, we looked forward to celebrating the end of summer at the ocean. This year it felt like the summer ended before it even began because there was nothing fun to look forward to.
Adam and I will be taking turns staying Boston with Lochlan during the three weeks. We are so fortunate that we have family who have taken time off of work and rearranged their schedules to keep Declan on his routine and in preschool. My heart breaks thinking about spending so much time away from him, and I worry that Lochlan will miss Declan too.
Stress is at an all time high as we plan this trip. There are so many variables and things that could go wrong. I'm not sure that I will continue to pump while I am there alone. It has been hard enough pumping for the last 15 months. Lochlan's homemade blenderized diet will also be impossible to continue while there. I am so grateful for friends who have contributed by donating breast milk. One friends has pumped 100s of bags of milk for Lochlan. It amazes me how kind people have been. Lochlan is well loved for sure, and I have faith that the human spirit will continue to help us through tough times ahead. I am hoping that at the end of our trip it will just be a hurdle that we have crossed, and not have to go back.
Stress is at an all time high as we plan this trip. There are so many variables and things that could go wrong. I'm not sure that I will continue to pump while I am there alone. It has been hard enough pumping for the last 15 months. Lochlan's homemade blenderized diet will also be impossible to continue while there. I am so grateful for friends who have contributed by donating breast milk. One friends has pumped 100s of bags of milk for Lochlan. It amazes me how kind people have been. Lochlan is well loved for sure, and I have faith that the human spirit will continue to help us through tough times ahead. I am hoping that at the end of our trip it will just be a hurdle that we have crossed, and not have to go back.
Friday, May 16, 2014
Today, we celebrate life.
Like most blogs about people overcoming medical problems, I tend to focus on everything going wrong, but today I am intent on celebrating everything that has gone right. Today, Lochlan is a year old, and he is ALIVE. As I look back on his life, I am filled with gratitude that he is here with us today. This past few weeks, I have been following families who have lost life. As I pray for these families, I hold my boys and husband close because we are all still together and that is all that matters.
Lochlan's story of survival began at his gender ultrasound. My OB office immediately referred us to a perinatologist. The perinatologist quickly listed the problems seen on the ultrasound and suggested that we schedule a amniocentesis ASAP because if we wanted to terminate the pregnancy, we would have no time to waste. Before having children, Adam and I had already discussed that we would love any child that we were given, so that was not an option. The perinatologist had also mentioned that because Lochlan only had one artery in his umbilical cord, it would increase his chances of IUGR and miscarriage. We were also told that because of his renal anomalies, there would be a chance that he would run out of amniotic fluid. Despite conditions that began before Lochlan even had an umbilical cord, he thrived through the pregnancy.
Because Lochlan had a single umbilical artery, my obstetrician was uncomfortable with letting me go past my due date. In my true form, my initial feeling was to be obstinate and go against his directions. However, at the last visit, I spoke with his wife who is a kind nurse, and decided that I better trust their expertise. I was induced and once the contractions began to get strong, Lochlan's heart became distressed. The pain of the pitocin was so great that at one point the only thing that relieved the pain was marching in place. I am so grateful that the pitocin quickly moved Lochlan out. The umbilical cord was wrapped around his neck, but after being quickly removed, he began to scream. I remember being so relieved that he had survived birth.
I was falsely celebrating the end of a nightmare that evening, but it all came to an end when I had realized that he had no anus. Yes, I will never forget the way that the transferring NICU nurse had poked and prodded at Lochlan like he was a cadavor, but that was the first moment that I learned to pipe up for my boy. It made me and everyone in the room uncomfortable for me to tell her to end her assessment, but in the end Lochlan benefited because he was rushed to AMC for treatment. Since then, I always run the risk of being disliked, but it is the least I can do for him.
Lochlan has endured so much pain and suffering. Every time he is put under, I worry that he will not wake up. Then when the procedure is done, and he is screaming in pain for hours on end, I worry that he will never smile again or that he will be forever scarred. During every procedure, I feel guilty for putting him through torture, but when his smile returns, I am reassured that I am doing what is best for him. Lochlan has a long way to go, but I never thought that he would overcome everything he has in the past year. I can only hope that he will be a stronger individual because of it all.
A few weeks ago, I met a man who told me about his daughter who has some similar medical problems as Lochlan. I could tell that he was a Dad like Adam- kind, warm, and optimistic. He told me that his daughter's spirit is insurmountable. The light in this Dad's eyes was not what you would expect from a man with a sick child. She still struggles with health problems, but she is a happy young lady working to help others. As he spoke of her, I began to cry, not because I was sad for her, but because I want to speak of Lochlan the same way someday.
As we surrounded Lochlan and sang him Happy Birthday tonight, I was struck by how happy I was to be sitting there with him. This year has robbed us of so much joy, but I felt nothing but joy today because my little warrior made to his first birthday.
Lochlan's story of survival began at his gender ultrasound. My OB office immediately referred us to a perinatologist. The perinatologist quickly listed the problems seen on the ultrasound and suggested that we schedule a amniocentesis ASAP because if we wanted to terminate the pregnancy, we would have no time to waste. Before having children, Adam and I had already discussed that we would love any child that we were given, so that was not an option. The perinatologist had also mentioned that because Lochlan only had one artery in his umbilical cord, it would increase his chances of IUGR and miscarriage. We were also told that because of his renal anomalies, there would be a chance that he would run out of amniotic fluid. Despite conditions that began before Lochlan even had an umbilical cord, he thrived through the pregnancy.
Because Lochlan had a single umbilical artery, my obstetrician was uncomfortable with letting me go past my due date. In my true form, my initial feeling was to be obstinate and go against his directions. However, at the last visit, I spoke with his wife who is a kind nurse, and decided that I better trust their expertise. I was induced and once the contractions began to get strong, Lochlan's heart became distressed. The pain of the pitocin was so great that at one point the only thing that relieved the pain was marching in place. I am so grateful that the pitocin quickly moved Lochlan out. The umbilical cord was wrapped around his neck, but after being quickly removed, he began to scream. I remember being so relieved that he had survived birth.
I was falsely celebrating the end of a nightmare that evening, but it all came to an end when I had realized that he had no anus. Yes, I will never forget the way that the transferring NICU nurse had poked and prodded at Lochlan like he was a cadavor, but that was the first moment that I learned to pipe up for my boy. It made me and everyone in the room uncomfortable for me to tell her to end her assessment, but in the end Lochlan benefited because he was rushed to AMC for treatment. Since then, I always run the risk of being disliked, but it is the least I can do for him.
Lochlan has endured so much pain and suffering. Every time he is put under, I worry that he will not wake up. Then when the procedure is done, and he is screaming in pain for hours on end, I worry that he will never smile again or that he will be forever scarred. During every procedure, I feel guilty for putting him through torture, but when his smile returns, I am reassured that I am doing what is best for him. Lochlan has a long way to go, but I never thought that he would overcome everything he has in the past year. I can only hope that he will be a stronger individual because of it all.
A few weeks ago, I met a man who told me about his daughter who has some similar medical problems as Lochlan. I could tell that he was a Dad like Adam- kind, warm, and optimistic. He told me that his daughter's spirit is insurmountable. The light in this Dad's eyes was not what you would expect from a man with a sick child. She still struggles with health problems, but she is a happy young lady working to help others. As he spoke of her, I began to cry, not because I was sad for her, but because I want to speak of Lochlan the same way someday.
As we surrounded Lochlan and sang him Happy Birthday tonight, I was struck by how happy I was to be sitting there with him. This year has robbed us of so much joy, but I felt nothing but joy today because my little warrior made to his first birthday.
Tuesday, April 15, 2014
More GI dysfunction
After following our Dr's advice and taking a week off of Cyproheptadine, Lochlan is back to square one. He gags, retched, fusses, and vomits all day and night despite being on the medication that once helped him. We also gave a hypoallergenic formula a try with no luck. Lochlan does best on breast milk, but I don't make enough, and now that he is 11 months old, it is not nutritionally sufficient. He has lost weight since visiting Boston.
My obsession with Lochlan's nutrition hit a new high. I have been glued to feeding tube Facebook pages for over a week. It began as a great place to receive information from people that have lots of experience, but ultimately, I am discouraged by the massive volume of children with incurable GI disorders. I am depressed by the amount of children that suffer and the lack of support from the medical community. People are denied over and over for specialized formulas and basic supplies, but have no guidance for a blenderized diet or tube weening. There are people in the Midwest who's babies will go hungry if they are hit by a tornado because they don't have enough supplies to last a few days or electricity to charge the pump batteries. It makes me worry about how we will refrigerate breast milk, keep ice packs and charge Lochlan's pump this summer if we are hit by a storm.
After doing some research, I thought that maybe a blenderized diet would help Lochlan. The only basic recipe that didn't contain any allergens came from Seattle Children's Hospital. I was exhausted after work on Sunday, but I came home to make it. I was really hoping that it would help. We gave Lochlan two full feeds of breast milk and then started the homemade formula on Monday afternoon. Lochlan didn't vomit at all for the two breast milk feeds, but then began violently vomiting last night. It was a rough night to say the least. This morning was equally as rough. After getting everyone ready and pumping, I put Lochlan into the car seat to go to the gym. He vomited all over his car seat and the third outfit of the day. While I was trying to clean the mess up, Declan decided to act up. That was the moment that I called my mommy, and gave up. My mother rescued me, and by the time she made it over, the boys were back to being angels. She must think I am nuts.
As I write this, my house is destroyed and I am still in the clothes that I had intended to wear to the gym. My husband is home from work cooking dinner and simultaneously cleaning, the boys are playing nicely, and I look like the slacker of the year. There are days when I can only manage to pump every three hours, operate and clean Lochlan's feeding pump, get Lochlan to take naps, clean up vomit and milk spills, feed and play with Declan, and nothing else. Everyone seems to think that I should either exercise more or see a therapist to feel better. I haven't even had the time to get my teeth cleaned.
Life is overwhelming right now. I really want to be positive and gracious for all of the blessings in my life, but gratitude is scary. I know that the more I cherish life, it can be heart-breaking when life gets harder than it already is. Lochlan's prognosis gaurantees rough roads ahead. I'm still waiting for the guilt of baring a child with birth defects to subside, and hearing that God gave Lochlan to me for a reason, does not help.
My obsession with Lochlan's nutrition hit a new high. I have been glued to feeding tube Facebook pages for over a week. It began as a great place to receive information from people that have lots of experience, but ultimately, I am discouraged by the massive volume of children with incurable GI disorders. I am depressed by the amount of children that suffer and the lack of support from the medical community. People are denied over and over for specialized formulas and basic supplies, but have no guidance for a blenderized diet or tube weening. There are people in the Midwest who's babies will go hungry if they are hit by a tornado because they don't have enough supplies to last a few days or electricity to charge the pump batteries. It makes me worry about how we will refrigerate breast milk, keep ice packs and charge Lochlan's pump this summer if we are hit by a storm.
After doing some research, I thought that maybe a blenderized diet would help Lochlan. The only basic recipe that didn't contain any allergens came from Seattle Children's Hospital. I was exhausted after work on Sunday, but I came home to make it. I was really hoping that it would help. We gave Lochlan two full feeds of breast milk and then started the homemade formula on Monday afternoon. Lochlan didn't vomit at all for the two breast milk feeds, but then began violently vomiting last night. It was a rough night to say the least. This morning was equally as rough. After getting everyone ready and pumping, I put Lochlan into the car seat to go to the gym. He vomited all over his car seat and the third outfit of the day. While I was trying to clean the mess up, Declan decided to act up. That was the moment that I called my mommy, and gave up. My mother rescued me, and by the time she made it over, the boys were back to being angels. She must think I am nuts.
As I write this, my house is destroyed and I am still in the clothes that I had intended to wear to the gym. My husband is home from work cooking dinner and simultaneously cleaning, the boys are playing nicely, and I look like the slacker of the year. There are days when I can only manage to pump every three hours, operate and clean Lochlan's feeding pump, get Lochlan to take naps, clean up vomit and milk spills, feed and play with Declan, and nothing else. Everyone seems to think that I should either exercise more or see a therapist to feel better. I haven't even had the time to get my teeth cleaned.
Life is overwhelming right now. I really want to be positive and gracious for all of the blessings in my life, but gratitude is scary. I know that the more I cherish life, it can be heart-breaking when life gets harder than it already is. Lochlan's prognosis gaurantees rough roads ahead. I'm still waiting for the guilt of baring a child with birth defects to subside, and hearing that God gave Lochlan to me for a reason, does not help.
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