I’ve been bummed out that Christmas is so close. I know presents aren’t the reason for Christmas, but sometimes living in the U.S. it is hard to separate materialism from a Christmas celebration. Anyway, with Bryan being laid off since July, there isn’t much money for Christmas presents. (But he had two job interviews this past week so maybe things will start looking up). I’m not too worried about our girls. Right now the only thing Katelyn wants is new underwear and she keeps telling me that Jill wants a new straw cup with handles. So that shouldn’t be too hard. I’m glad they aren’t in the stage of iPods and video games.
I think I’m more disappointed that I can’t give to other charities that I normally give to at Christmas time, and I keep wondering how many other families are in the same situation (i.e. they usually give but with the economic situation this year they just can’t afford to).
Anyway, this is totally last minute. But I thought I would share my two favorite charities in hopes that someone who happens to read our blog might be inspired to give to these charities this year since our family can’t.
The first one is Operation Christmas Child which is sponsored by Samaritan’s Purse. Basically you pick whether you want to buy a Christmas gift for a boy or girl then think of the age group that you would like to buy the gift for. Then you take $20 to a dollar store and buy items such as school supplies, small toys, T-shirt, toothbrushes, combs, hair clips, etc. You want to find enough items to fill a shoe box or a plastic container of the same size. Once the box is filled you take it to your local distribution center (type your zip code on the website link to find the one that is closest to you) with a $7 check to cover delivery. This week is national collection week. Then it is sent to a child in an impoverished area of the world. For most of these kids, this is the only gift they will receive all year. For more information check out: http://www.samaritan.org
My other favorite charity is sponsored by World Vision. They have a Christmas catalog that you pick items such as chickens, goats, seeds, sewing machines, etc. These gifts truly transform the lives of families and can help them provide food for their family or learn skills to get out of poverty. For more information check out: http://www.worldvisiongifts.org
Sunday, November 15, 2009
Sunday, October 25, 2009
The Last Three Months
We have had a lot going on the last couple of months.
--At the end of July, I had knee surgery on my right knee. The surgeon located and removed a piece of loose cartilage. He also did another procedure to help my knee cap to track properly. I had to use crutches for nine days. For the first couple of weeks after surgery, we had a home health person come in to help with Jill’s care. I was very grateful to have the help. My knee is a lot better now, but I’m still going to physical therapy twice a week to try to get back my full range of motion.
--Bryan is still looking for work. It has been discouraging that he hasn’t even been offered an interview, yet. Previously, he had almost always received a job offer from every company he had ever contacted. Please let us know if you hear of any civil engineering job leads.
--Jill went from five daytime feeds down to four daytime feeds through her feeding tube. She is still getting about the same number of calories as before. She still has her slow eight-hour feed during the night. For a short time, we were using Pediasure. Unfortunately, she wasn’t tolerating that so we have had to switch to Peptamen Junior. It is crazy expensive….$10 for an eight-ounce can which amounts to $1500 a month in feeding formula. Currently, it is being paid through COBRA insurance benefits, but we will most likely have to cover this cost once Bryan finds a job since Premera Blue Cross of Idaho doesn’t cover special nutritional needs. It has also been discouraging that she is hardly eating any solid foods lately. I’m not sure why she is regressing.
--On a happier note, Jill is now walking. And she is saying new words daily. Three of her pictures are going to appear in a CDH Awareness calendar next year. Here is the link: http://www.cafepress.com/breathofhope.410812838
--In September, we took a spontaneous family vacation to Washington and Oregon. We had a great time seeing old friends. We spent a few days at the Washington coast with a couple from our church. And one of the other special highlights was meeting a family who has a daughter with CDH who is now a healthy 3 ½ year old. The couple talked with us for several hours on the phone before Jill was born, but we had never met them in person.
--At the end of September, I started working part-time from home grading high school English papers for an online academy.
--Also at the end of September, I had to call an ambulance for my mom. She had gotten sick in the night and had fallen in the bathroom and was too weak to get up. When the paramedics tested her sugar level it was 576 (normal blood sugar level is around 100). She basically ended up slipping into a diabetic semi-coma which is officially called, diabetic ketoacidosis (DKA). It was pretty scary. My mom mostly slept for the first day in the hospital. At one point the doctor was able to ask her a few questions, but she only answered about half of them correctly. The nurse told me that sometimes the patients simply don’t wake up. My mom woke up and became more responsive by the next day, but she ended of spending five days in the hospital.
--The following week, I was busy setting up home health for her. Her sugar levels have been a little better. However, she struggles with understanding what foods to eat for her diabetes and consistently taking her medicine.
--Bryan and I celebrated our wedding anniversary on Oct. 18th. We’ve been married for six years now. We actually had a friend from church (who is a pediatric nurse) come and watch the girls while we went to dinner and a movie. I think it is only the second time that we have been to a movie theater together in about 3 ½ years. It was definitely a special treat.
--First Katelyn got really sick then Bryan and I started getting sick. On Tuesday (Oct. 20th), I took Katelyn to the doctor. She tested negative for the flu. On Thursday (Oct. 22nd), I went to the doctor. I tested positive for the flu. My doctor said it is most likely the H1N1 flu, and she thought that my daughter’s test could have been a false negative. So anyway, here we are trying to get over the infamous swine flu and praying that Jill doesn’t get sick. Since her lungs were so underdeveloped at birth, we worry about her getting any respiratory illnesses.
--At the end of July, I had knee surgery on my right knee. The surgeon located and removed a piece of loose cartilage. He also did another procedure to help my knee cap to track properly. I had to use crutches for nine days. For the first couple of weeks after surgery, we had a home health person come in to help with Jill’s care. I was very grateful to have the help. My knee is a lot better now, but I’m still going to physical therapy twice a week to try to get back my full range of motion.
--Bryan is still looking for work. It has been discouraging that he hasn’t even been offered an interview, yet. Previously, he had almost always received a job offer from every company he had ever contacted. Please let us know if you hear of any civil engineering job leads.
--Jill went from five daytime feeds down to four daytime feeds through her feeding tube. She is still getting about the same number of calories as before. She still has her slow eight-hour feed during the night. For a short time, we were using Pediasure. Unfortunately, she wasn’t tolerating that so we have had to switch to Peptamen Junior. It is crazy expensive….$10 for an eight-ounce can which amounts to $1500 a month in feeding formula. Currently, it is being paid through COBRA insurance benefits, but we will most likely have to cover this cost once Bryan finds a job since Premera Blue Cross of Idaho doesn’t cover special nutritional needs. It has also been discouraging that she is hardly eating any solid foods lately. I’m not sure why she is regressing.
--On a happier note, Jill is now walking. And she is saying new words daily. Three of her pictures are going to appear in a CDH Awareness calendar next year. Here is the link: http://www.cafepress.com/breathofhope.410812838
--In September, we took a spontaneous family vacation to Washington and Oregon. We had a great time seeing old friends. We spent a few days at the Washington coast with a couple from our church. And one of the other special highlights was meeting a family who has a daughter with CDH who is now a healthy 3 ½ year old. The couple talked with us for several hours on the phone before Jill was born, but we had never met them in person.
--At the end of September, I started working part-time from home grading high school English papers for an online academy.
--Also at the end of September, I had to call an ambulance for my mom. She had gotten sick in the night and had fallen in the bathroom and was too weak to get up. When the paramedics tested her sugar level it was 576 (normal blood sugar level is around 100). She basically ended up slipping into a diabetic semi-coma which is officially called, diabetic ketoacidosis (DKA). It was pretty scary. My mom mostly slept for the first day in the hospital. At one point the doctor was able to ask her a few questions, but she only answered about half of them correctly. The nurse told me that sometimes the patients simply don’t wake up. My mom woke up and became more responsive by the next day, but she ended of spending five days in the hospital.
--The following week, I was busy setting up home health for her. Her sugar levels have been a little better. However, she struggles with understanding what foods to eat for her diabetes and consistently taking her medicine.
--Bryan and I celebrated our wedding anniversary on Oct. 18th. We’ve been married for six years now. We actually had a friend from church (who is a pediatric nurse) come and watch the girls while we went to dinner and a movie. I think it is only the second time that we have been to a movie theater together in about 3 ½ years. It was definitely a special treat.
--First Katelyn got really sick then Bryan and I started getting sick. On Tuesday (Oct. 20th), I took Katelyn to the doctor. She tested negative for the flu. On Thursday (Oct. 22nd), I went to the doctor. I tested positive for the flu. My doctor said it is most likely the H1N1 flu, and she thought that my daughter’s test could have been a false negative. So anyway, here we are trying to get over the infamous swine flu and praying that Jill doesn’t get sick. Since her lungs were so underdeveloped at birth, we worry about her getting any respiratory illnesses.
Saturday, July 18, 2009
Looking for Work
Our family could definitely use a lot of prayer right now. On Wednesday, Bryan learned that he will be laid off effective August 3rd. At least we should have health coverage through the end of August. Then after that we will plan on paying for health insurance through COBRA. His company said that they would hire him back if more work came in, but right now everything is slow. I’m anxious about him finding another job in the current job market. We are just hoping that something comes up, and he can find another job quickly that will have good health benefits.
We have been blessed to have good health insurance through Bryan’s current work. Jill’s monthly expenses for her special formula and feeding tube supplies have been $1377. (This amount should decrease because she recently switched from her special formula to PediaSure for her daytime feeds.) But we definitely need a good health insurance plan to help cover the ongoing expenses: monthly feeding supplies, doctor visits, hospital stays, testing, and therapy. Unfortunately, we also recently learned that sometime soon we will have to start paying co-pays for all of Jill’s therapy sessions and other items that are currently covered under the Idaho Infant Toddler program and the Katie Beckett Medicaid program because the state has cut funds for these programs.
In other news, after a very lengthy process we were able to get approved for a home health provider to come in to help take care of Jill when I have my knee surgery. We met the provider this morning. My first impression based on her facial piercings, tattoos, and clothing was that she looked like an ex-gang member. After talking with her, some of my anxiety lessoned. It sounds like she has been doing home health care for 10 years. I guess we will just see how this goes. I’m not overly trustworthy of anyone watching Jill. She has been through so much. Anyway, my knee surgery is scheduled for next Friday, July 24th. I’m hoping that the recovery will go smoothly. It is expected to be anywhere from 2-6 weeks. I’ll have to be on crutches for awhile and likely need physical therapy.
Last month Jill had an evaluation from her physical therapist. At the time she was 15 months old, but she only tested as an 8 ½ month old baby in gross motor skills. I think she is getting a lot stronger though. She still doesn’t crawl, but she quickly scoots from room-to-room in a sitting up position. She recently started pulling herself up more and she even started climbing a few stairs this past week.
We have been a little discouraged that at her last doctor visits she still has not gained much weight. She is still just below the 3rd percentile for weight on the growth chart. Lately, she has had a hard time handling her feeds. PediaSure has more calories, but we have had to decrease the volume she is receiving through her feeding tube because she keeps retching after feeds. It is just hard to find the right balance of what her stomach and digestive system can handle.
At the end of May, we were back in the hospital for a swallow study for Jill. The feeding therapist thought that maybe she had a tendency to aspirate while swallowing. The test was negative. There was no evidence of her aspirating, but we are still not sure while she won’t drink more than a few sips of liquid at a time. She does like eating solid foods: crackers, olives, avocado, bananas, etc.
We have had a hard time with Katelyn lately. She cries and whines so much. Unfortunately, I think her behavior reflects our stress levels. Maybe when she is four the tantrum phase will stop. She has been entertaining us with funny comments, though. She likes to take toys from Jill. I told her that you shouldn’t take toys away from babies. And she replied, “Can I take them away when she is older.” About 50 times a day, I hear “mommy, I need to ask you something.” Instead of saying the sock is “inside-out,” she says the sock is “outside-out.” But I think the funniest, was when we were at the gas station and Bryan was washing the windshield and she said, “Daddy is shaving the car.”
Katelyn’s dollies always seem to reflect what is going on in our lives. In February, the dollies had to go to the hospital a lot, then there were the constant birthday parties, and now there are a lot of dolly weddings.
Another funny thing with Katelyn…she is absolutely terrified of bugs. She screams whenever she sees an ant, fly, spider, you name it. But at the zoo the other day, I watched her pet a python snake. I couldn’t believe it.
We have been blessed to have good health insurance through Bryan’s current work. Jill’s monthly expenses for her special formula and feeding tube supplies have been $1377. (This amount should decrease because she recently switched from her special formula to PediaSure for her daytime feeds.) But we definitely need a good health insurance plan to help cover the ongoing expenses: monthly feeding supplies, doctor visits, hospital stays, testing, and therapy. Unfortunately, we also recently learned that sometime soon we will have to start paying co-pays for all of Jill’s therapy sessions and other items that are currently covered under the Idaho Infant Toddler program and the Katie Beckett Medicaid program because the state has cut funds for these programs.
In other news, after a very lengthy process we were able to get approved for a home health provider to come in to help take care of Jill when I have my knee surgery. We met the provider this morning. My first impression based on her facial piercings, tattoos, and clothing was that she looked like an ex-gang member. After talking with her, some of my anxiety lessoned. It sounds like she has been doing home health care for 10 years. I guess we will just see how this goes. I’m not overly trustworthy of anyone watching Jill. She has been through so much. Anyway, my knee surgery is scheduled for next Friday, July 24th. I’m hoping that the recovery will go smoothly. It is expected to be anywhere from 2-6 weeks. I’ll have to be on crutches for awhile and likely need physical therapy.
Last month Jill had an evaluation from her physical therapist. At the time she was 15 months old, but she only tested as an 8 ½ month old baby in gross motor skills. I think she is getting a lot stronger though. She still doesn’t crawl, but she quickly scoots from room-to-room in a sitting up position. She recently started pulling herself up more and she even started climbing a few stairs this past week.
We have been a little discouraged that at her last doctor visits she still has not gained much weight. She is still just below the 3rd percentile for weight on the growth chart. Lately, she has had a hard time handling her feeds. PediaSure has more calories, but we have had to decrease the volume she is receiving through her feeding tube because she keeps retching after feeds. It is just hard to find the right balance of what her stomach and digestive system can handle.
At the end of May, we were back in the hospital for a swallow study for Jill. The feeding therapist thought that maybe she had a tendency to aspirate while swallowing. The test was negative. There was no evidence of her aspirating, but we are still not sure while she won’t drink more than a few sips of liquid at a time. She does like eating solid foods: crackers, olives, avocado, bananas, etc.
We have had a hard time with Katelyn lately. She cries and whines so much. Unfortunately, I think her behavior reflects our stress levels. Maybe when she is four the tantrum phase will stop. She has been entertaining us with funny comments, though. She likes to take toys from Jill. I told her that you shouldn’t take toys away from babies. And she replied, “Can I take them away when she is older.” About 50 times a day, I hear “mommy, I need to ask you something.” Instead of saying the sock is “inside-out,” she says the sock is “outside-out.” But I think the funniest, was when we were at the gas station and Bryan was washing the windshield and she said, “Daddy is shaving the car.”
Katelyn’s dollies always seem to reflect what is going on in our lives. In February, the dollies had to go to the hospital a lot, then there were the constant birthday parties, and now there are a lot of dolly weddings.
Another funny thing with Katelyn…she is absolutely terrified of bugs. She screams whenever she sees an ant, fly, spider, you name it. But at the zoo the other day, I watched her pet a python snake. I couldn’t believe it.
Tuesday, May 12, 2009
Knee Surgery?
Mother’s Day was a happy day. It marked the one year anniversary of Jill coming home from the hospital (after spending 47 days in the NICU). To help me celebrate Mother’s Day she started giving me kisses for the first time on Saturday night. I love her kisses. It is really cute. Katelyn made me a beaded necklace. Bryan bought me roses and watched the girls so I could plant my garden. And we met my parents, sister and her family, two brothers, and a nephew for lunch after church.
Mother’s Day was definitely a nice break from everything. Lately, it seems like every week is another medical emergency. Last week was my turn. I hurt my right knee in high school. It tends to bother me once or twice a year. I usually put a wrap on it. Hobble around for a few hours or days then it gets better. This has been going on for the past 17 years. In college, I went to a specialist; he thought there was some loose cartilage, but the MRI results never showed anything. Anyway, my knee has been bothering me a lot for the past few weeks. Last Tuesday evening it got so bad that I couldn’t even walk across the room. Any movement was intense pain. It is definitely a humbling experience when you have to have your husband help you into bed and take you to the bathroom. For the next 12+ hours the pain was this bad….I told Bryan that I would rather go through child birth again (especially if I could have an epidural). On Wednesday, Bryan stayed home from work to take care of the girls and me. He drove me to an orthopedic surgeon and I had an MRI. This time the MRI showed that there was some loose piece of matter floating around, extra fluid on my knee, and a knee cap that has a tendency to slip out of place. I wore a knee/leg brace for a few days. On Friday, I was able to walk on my own. It is looking like surgery is probably the only real solution. But I might try a few physical therapy appointments first.
My main dilemma is who is going to take care of the girls. My brother-in-law came over last Thursday to help out so Bryan could go back to work. I’m managing right now. But it is hard going up and down stairs and being on my feet all day. It looks like the recovery time for the surgery is anywhere from 2-6 weeks. For up to six weeks, I’m not supposed to kneel or squat down. Jill is more mobile now. She scoots everywhere. With this whole knee issue, I hope I can keep up. I’m a little nervous carrying her around. I feel like my knee could go out again at anytime.
Anyway, I learned that since she is on Medicaid she might qualify for some home health services. Unfortunately, the whole process for getting approved is a bit of a headache. The paperwork could take a month or even longer. When I called Medicaid to try to explain the situation (“I’m Jill’s primary care giver, it looks like I will need knee surgery, her care is complicated with the feeding tube...”), I was told that I am one of 750 clients. She cannot treat my case like an emergency or she will have to treat every other case like an emergency. Then she went on to say things like “Don’t you have a husband that can help?” My response: “My husband has to work or we won’t have health insurance.” Her response: “Don’t you have a mom?” My response: “She just has a stroke a few weeks ago.” At which point, I started crying on the phone. I am constantly being told how delayed my daughter is from all the doctors and therapists, etc. Usually things don’t get to me, but this lady got to me. She had an uncanny way of making me feel utterly alone in the world. Anyway, the conversation went on and she gave me the number for another Medicaid worker so I could start the whole paperwork process. So I called the other lady, explained the situation and asked if it was possible for the forms to be emailed to me since I may need to have surgery at anytime. That was on Thursday morning at 8:30 a.m. I never received anything in my inbox so on Monday morning I called again. The forms were mailed. I understand that things need authorization, but I don’t understand why the process has to be so exhaustingly inefficient.
Well, it looks like I will be hobbling around for awhile. I hope my knee holds up until I can figure out some sort of plan for the girls’ care. Then I will probably schedule the knee surgery.
Mother’s Day was definitely a nice break from everything. Lately, it seems like every week is another medical emergency. Last week was my turn. I hurt my right knee in high school. It tends to bother me once or twice a year. I usually put a wrap on it. Hobble around for a few hours or days then it gets better. This has been going on for the past 17 years. In college, I went to a specialist; he thought there was some loose cartilage, but the MRI results never showed anything. Anyway, my knee has been bothering me a lot for the past few weeks. Last Tuesday evening it got so bad that I couldn’t even walk across the room. Any movement was intense pain. It is definitely a humbling experience when you have to have your husband help you into bed and take you to the bathroom. For the next 12+ hours the pain was this bad….I told Bryan that I would rather go through child birth again (especially if I could have an epidural). On Wednesday, Bryan stayed home from work to take care of the girls and me. He drove me to an orthopedic surgeon and I had an MRI. This time the MRI showed that there was some loose piece of matter floating around, extra fluid on my knee, and a knee cap that has a tendency to slip out of place. I wore a knee/leg brace for a few days. On Friday, I was able to walk on my own. It is looking like surgery is probably the only real solution. But I might try a few physical therapy appointments first.
My main dilemma is who is going to take care of the girls. My brother-in-law came over last Thursday to help out so Bryan could go back to work. I’m managing right now. But it is hard going up and down stairs and being on my feet all day. It looks like the recovery time for the surgery is anywhere from 2-6 weeks. For up to six weeks, I’m not supposed to kneel or squat down. Jill is more mobile now. She scoots everywhere. With this whole knee issue, I hope I can keep up. I’m a little nervous carrying her around. I feel like my knee could go out again at anytime.
Anyway, I learned that since she is on Medicaid she might qualify for some home health services. Unfortunately, the whole process for getting approved is a bit of a headache. The paperwork could take a month or even longer. When I called Medicaid to try to explain the situation (“I’m Jill’s primary care giver, it looks like I will need knee surgery, her care is complicated with the feeding tube...”), I was told that I am one of 750 clients. She cannot treat my case like an emergency or she will have to treat every other case like an emergency. Then she went on to say things like “Don’t you have a husband that can help?” My response: “My husband has to work or we won’t have health insurance.” Her response: “Don’t you have a mom?” My response: “She just has a stroke a few weeks ago.” At which point, I started crying on the phone. I am constantly being told how delayed my daughter is from all the doctors and therapists, etc. Usually things don’t get to me, but this lady got to me. She had an uncanny way of making me feel utterly alone in the world. Anyway, the conversation went on and she gave me the number for another Medicaid worker so I could start the whole paperwork process. So I called the other lady, explained the situation and asked if it was possible for the forms to be emailed to me since I may need to have surgery at anytime. That was on Thursday morning at 8:30 a.m. I never received anything in my inbox so on Monday morning I called again. The forms were mailed. I understand that things need authorization, but I don’t understand why the process has to be so exhaustingly inefficient.
Well, it looks like I will be hobbling around for awhile. I hope my knee holds up until I can figure out some sort of plan for the girls’ care. Then I will probably schedule the knee surgery.
Friday, May 1, 2009
“So how is Jill doing?”
So when I woke up this morning, I wasn’t expecting to spend 5 ½ hours in the Pediatric Intensive Care Unit (PICU), but I guess you never know what each day holds. At about 2:45 this afternoon, I was feeding Jill. She ate less than an ounce from the bottle then I went to put the rest of the formula into her G-tube when I realized that the small plastic prong that fits inside the G-tube to keep it closed had broken off and was stuck inside. I quickly realized that this was a big problem since I could no longer feed Jill through her feeding tube…and of course, it all happened before she finished eating. So I called the surgeon’s office they told me to gather up my things and get ready to head to the Emergency Room. Then they called back to say the surgeon was already at the hospital because he was on-call that day and we could meet him up in the PICU. So long story short the whole procedure took less than 10 minutes to swap out a new feeding tube, but we had to wait for over 5 hours because the surgeon was doing another surgery that went much longer than expected. And unfortunately, I had to witness the whole thing because Jill’s medicine to put her to sleep didn’t take its full effect so I had to stay with her to try to console her. (Bryan took Katelyn for a walk).
So that was today’s adventure. The last few weeks have also been very busy. I’ve been really burned out on going to doctor and therapist visits. I’ve been averaging about 3 appointments for Jill a week. One day I actually had 3 different appointments in the same day. First we started with her therapist visit at 10am in Meridian. Then we drove to the Boise hospital for her 11:30am NICU follow-up appointment. At the NICU follow-up appointment I was given a note that the surgeon was going to try to squeeze us into between surgeries at 1:30pm because Jill’s feeding tube had been leaking. So we stayed at the hospital and had lunch. By 3:30pm the surgeon’s staff told me to go home because they didn’t know how long the surgery was going to last. So I drove home with girls. We unpacked the car. The hospital called and said that the surgeon was now free. So we packed up again and drove back the hospital. But then the surgeon got busy again so we had to wait until 6:30pm to see him. (I really don’t mind waiting for him....He has saved Jill’s life at least 3 times so he is worth the wait).
Anyway, I’m just tired of appointments.
“So how is Jill doing?” Well depending on whom you ask you will get entirely different opinions.
--The NICU follow-up doctor is very worried about her development. He thinks that her delays cannot fully be explained by her surgeries and hospital stays. He thinks the sequence of her development is troubling (i.e. she likes to sit but she rarely ever rolls over, etc.). Anyway, he thinks we should do genetic testing to rule out any other reasons on why her development is so behind.
--The therapist who sees her weekly thinks that her delays are definitely a direct result from the pain she was experiencing prior to her January surgery. She thinks that Jill has made significant improvement in the last couple of weeks and that she will be fully caught up by 18 months (minus walking).
--The Gastroenterology Specialist thinks that it is great that she is maintaining the 3rd percentile in weight. She is following her growth curve.
--The pediatrician, surgeon, and Bryan and I would like her to gain more weight. In fact, this week she actually lost weight because she has had a cold and not eating for half of today probably didn’t help the weight issue.
All in all, she is still super cute. We love her. She is starting to scoot across the room to get toys. We are hoping we can figure out how to get her to drink more from a bottle or cup. We think she is tired of her formula, but we are not entirely sure what her stomach can handle. As soon as she is well again, we are going to try a milk challenge. Basically, we give her a small amount of cow’s milk to see if she can handle it. She has had a milk protein allergy, but most babies out-grow it between 1year and 3 years of age. If she can’t handle the cow’s milk we will keep trying other things: soy milk, goat’s milk, rice milk, etc. I’ve been concerned how reliant she is on the feeding tube. I’m hoping that she will be able to digest and enjoy drinking one of these types of milk.
In other news, my mom had a small stroke the Friday after Easter. She only stayed in the hospital one night and seems to be doing okay. On Saturday night after she was released I had an interesting experience of finding a 24-hour pharmacy to make sure she had blood pressure medicine. She had picked up all of her other medications, but apparently there was a mix-up with the hospital not calling in one of the prescriptions. While I’m incredibly grateful for the health care that we receive in this country, I’m also acutely aware that even medical professionals make mistakes. After the experiences in this past year, I have learned to never leave a pharmacy without double checking patient’s name, medicine, and dosage. And if I’m picking up medicine for Jill I always double check that it is safe for infants.
So besides all that Bryan is playing softball on two teams and redoing our entire backyard. I’m trying to find time to take two online classes to keep my teaching certification current. It looks like it is going to be a very busy summer.
So that was today’s adventure. The last few weeks have also been very busy. I’ve been really burned out on going to doctor and therapist visits. I’ve been averaging about 3 appointments for Jill a week. One day I actually had 3 different appointments in the same day. First we started with her therapist visit at 10am in Meridian. Then we drove to the Boise hospital for her 11:30am NICU follow-up appointment. At the NICU follow-up appointment I was given a note that the surgeon was going to try to squeeze us into between surgeries at 1:30pm because Jill’s feeding tube had been leaking. So we stayed at the hospital and had lunch. By 3:30pm the surgeon’s staff told me to go home because they didn’t know how long the surgery was going to last. So I drove home with girls. We unpacked the car. The hospital called and said that the surgeon was now free. So we packed up again and drove back the hospital. But then the surgeon got busy again so we had to wait until 6:30pm to see him. (I really don’t mind waiting for him....He has saved Jill’s life at least 3 times so he is worth the wait).
Anyway, I’m just tired of appointments.
“So how is Jill doing?” Well depending on whom you ask you will get entirely different opinions.
--The NICU follow-up doctor is very worried about her development. He thinks that her delays cannot fully be explained by her surgeries and hospital stays. He thinks the sequence of her development is troubling (i.e. she likes to sit but she rarely ever rolls over, etc.). Anyway, he thinks we should do genetic testing to rule out any other reasons on why her development is so behind.
--The therapist who sees her weekly thinks that her delays are definitely a direct result from the pain she was experiencing prior to her January surgery. She thinks that Jill has made significant improvement in the last couple of weeks and that she will be fully caught up by 18 months (minus walking).
--The Gastroenterology Specialist thinks that it is great that she is maintaining the 3rd percentile in weight. She is following her growth curve.
--The pediatrician, surgeon, and Bryan and I would like her to gain more weight. In fact, this week she actually lost weight because she has had a cold and not eating for half of today probably didn’t help the weight issue.
All in all, she is still super cute. We love her. She is starting to scoot across the room to get toys. We are hoping we can figure out how to get her to drink more from a bottle or cup. We think she is tired of her formula, but we are not entirely sure what her stomach can handle. As soon as she is well again, we are going to try a milk challenge. Basically, we give her a small amount of cow’s milk to see if she can handle it. She has had a milk protein allergy, but most babies out-grow it between 1year and 3 years of age. If she can’t handle the cow’s milk we will keep trying other things: soy milk, goat’s milk, rice milk, etc. I’ve been concerned how reliant she is on the feeding tube. I’m hoping that she will be able to digest and enjoy drinking one of these types of milk.
In other news, my mom had a small stroke the Friday after Easter. She only stayed in the hospital one night and seems to be doing okay. On Saturday night after she was released I had an interesting experience of finding a 24-hour pharmacy to make sure she had blood pressure medicine. She had picked up all of her other medications, but apparently there was a mix-up with the hospital not calling in one of the prescriptions. While I’m incredibly grateful for the health care that we receive in this country, I’m also acutely aware that even medical professionals make mistakes. After the experiences in this past year, I have learned to never leave a pharmacy without double checking patient’s name, medicine, and dosage. And if I’m picking up medicine for Jill I always double check that it is safe for infants.
So besides all that Bryan is playing softball on two teams and redoing our entire backyard. I’m trying to find time to take two online classes to keep my teaching certification current. It looks like it is going to be a very busy summer.
Tuesday, March 24, 2009
Happy 1st Birthday, Jillian!
We are celebrating Jill's first birthday tomorrow on March 25th! Here are some photos throughout her first year. What a little miracle!
Monday, March 23, 2009
Roadtrip, Illnesses, and other Stuff
Well Jill’s feeding tube swap procedure that happened at the end of February went well. She now has what is called a “button” feeding tube which is just above her belly button. The hardest part about the whole thing was just going to the hospital again. Mentally, I don’t think we were ready to go through everything again. It was kind of déjà vu. We had the same lady do our intake papers. Then it was the same nurse’s aide that checked us in at pre-op. (In fact, we have now had him three times…endoscopy procedure in December, major surgery in January, and tube swap in February). We kept running into other staff members that remembered us as well. Then we had to wait in the same surgery waiting area. At least the procedure itself only took about 30 minutes versus the nearly 7 hour wait at the end of January. It was a little overwhelming learning how to use the new feeding tube. We had a three minute tutorial from the surgeon. Then we went home and had to figure out what we were doing.
Jill’s care really is complicated right now. It is just impossible to consider leaving her with anyone. A few days ago we just added another medicine to the regimen. She now has two medicines that are given 4 times a day and two other medicines that are given once a day. In addition, to other medicine like Tylenol and Ibuprofen that is just given as needed. She was doing really well with eating. She was probably taking over 70% of her daytime formula feeds from the bottle. But now she isn’t feeling that good (her nose is a little runny and last night she had a fever of 102.7). Unfortunately, everyone in the house is sick right now. Katelyn and I have bad coughs. And Bryan is having sore throat/tonsil issues. We are trying hard not to pass on our germs to Jill. Being sick drastically affects her eating. She has hardly taken any bottles from us in the past week. I’m glad she is on the feeding tube because drinking one ounce of formula and a spoonful of pears isn’t a good recipe for growth. But thankfully, even though her eating has been poor lately, she has gained a full pound since her last weight check (it must have been the avocadoes she ate on our recent trip to California).
Yes, that’s right, we went to California. It was our first time leaving the state in a year and a half. It really was a major event for us when we crossed over the Idaho state border into Oregon on the drive to California. The girls did really well on the trip. We had a great time seeing friends and family. We attended a family wedding while there. And Katelyn was able to celebrate her 3rd birthday with a party at her grandparent’s house.
I have felt a little sad for Katelyn this past year. Things have been so chaotic with Jill that she has often had to play on her own and spend probably too much time watching cartoons like Caillou and Clifford. But considering everything, she has adjusted really well and loves her little sister. She constantly kisses her feet, arms, head, etc. Katelyn amuses us with her growing vocabulary and grammar usage. Instead of saying “I am” she says “my” (“my chewing,” “my thirsty,” etc.) She organizes our shoe rack at least three times a day. She loves matching colors. The other day I asked her what color of sippy cup she wanted. She first looked at what she was wearing to make sure her cup would match her outfit. She loves playing with her dolls. Her first doll, “Molly Dolly,” now has two sisters and a step-sister. She also loves playing with her tea party and cooking set. And she remembers lots of random details (e.g. Jill wore that outfit to Costco yesterday). Everything in the past is “yesterday.”
Well some other thoughts….I have had some interesting conversations in the past couple of weeks. I went to get my hair cut from a new person. I wasn’t going to mention Jill’s story, but it just kind of came up toward the end of the appointment. The hair dresser stopped what she was doing and opened up her wallet to show me a picture of a toddler. She went on to tell me her friend’s daughter’s story. Apparently she was in the hospital for nearly a year with many different health issues. She said it took her months to get enough courage to see the baby. She would go to the Newborn Intensive Care Unit (NICU), scrub in, walk to the baby’s room, then break down in tears and go home. Finally, she said she just had to walk through the door. But after that it was amazing hearing how involved she became in the child’s life. Unfortunately, her friend’s daughter died at age 4 ½, but I think her life really impacted the lady. It is amazing how when you experience children’s health issues firsthand how it completely changes your perspective and response.
Another conversation happened during our trip to California. We were talking to a friend of ours who is an OBGYN. We were curious to know if she had encountered any CDH cases. Unfortunately, in the only two cases she knew about the parents decided to terminate the pregnancy. Then she went on to tell us about how much genetic testing goes on. And how many parents seem to be looking for the perfect child. The whole thing is really upsetting to me. Over and over again, I’m glad Jill was given to us. Sometimes her care can be tiring, but her smiles and laughter would melt any heart. And hopefully, she will have a really healthy and happy childhood and adulthood. We told our OBGYN friend to please give our name to any patients with CDH pregnancies. We were given hope by other CDH parents and we want to continue to give out hope to others in similar circumstances.
Jill’s care really is complicated right now. It is just impossible to consider leaving her with anyone. A few days ago we just added another medicine to the regimen. She now has two medicines that are given 4 times a day and two other medicines that are given once a day. In addition, to other medicine like Tylenol and Ibuprofen that is just given as needed. She was doing really well with eating. She was probably taking over 70% of her daytime formula feeds from the bottle. But now she isn’t feeling that good (her nose is a little runny and last night she had a fever of 102.7). Unfortunately, everyone in the house is sick right now. Katelyn and I have bad coughs. And Bryan is having sore throat/tonsil issues. We are trying hard not to pass on our germs to Jill. Being sick drastically affects her eating. She has hardly taken any bottles from us in the past week. I’m glad she is on the feeding tube because drinking one ounce of formula and a spoonful of pears isn’t a good recipe for growth. But thankfully, even though her eating has been poor lately, she has gained a full pound since her last weight check (it must have been the avocadoes she ate on our recent trip to California).
Yes, that’s right, we went to California. It was our first time leaving the state in a year and a half. It really was a major event for us when we crossed over the Idaho state border into Oregon on the drive to California. The girls did really well on the trip. We had a great time seeing friends and family. We attended a family wedding while there. And Katelyn was able to celebrate her 3rd birthday with a party at her grandparent’s house.
I have felt a little sad for Katelyn this past year. Things have been so chaotic with Jill that she has often had to play on her own and spend probably too much time watching cartoons like Caillou and Clifford. But considering everything, she has adjusted really well and loves her little sister. She constantly kisses her feet, arms, head, etc. Katelyn amuses us with her growing vocabulary and grammar usage. Instead of saying “I am” she says “my” (“my chewing,” “my thirsty,” etc.) She organizes our shoe rack at least three times a day. She loves matching colors. The other day I asked her what color of sippy cup she wanted. She first looked at what she was wearing to make sure her cup would match her outfit. She loves playing with her dolls. Her first doll, “Molly Dolly,” now has two sisters and a step-sister. She also loves playing with her tea party and cooking set. And she remembers lots of random details (e.g. Jill wore that outfit to Costco yesterday). Everything in the past is “yesterday.”
Well some other thoughts….I have had some interesting conversations in the past couple of weeks. I went to get my hair cut from a new person. I wasn’t going to mention Jill’s story, but it just kind of came up toward the end of the appointment. The hair dresser stopped what she was doing and opened up her wallet to show me a picture of a toddler. She went on to tell me her friend’s daughter’s story. Apparently she was in the hospital for nearly a year with many different health issues. She said it took her months to get enough courage to see the baby. She would go to the Newborn Intensive Care Unit (NICU), scrub in, walk to the baby’s room, then break down in tears and go home. Finally, she said she just had to walk through the door. But after that it was amazing hearing how involved she became in the child’s life. Unfortunately, her friend’s daughter died at age 4 ½, but I think her life really impacted the lady. It is amazing how when you experience children’s health issues firsthand how it completely changes your perspective and response.
Another conversation happened during our trip to California. We were talking to a friend of ours who is an OBGYN. We were curious to know if she had encountered any CDH cases. Unfortunately, in the only two cases she knew about the parents decided to terminate the pregnancy. Then she went on to tell us about how much genetic testing goes on. And how many parents seem to be looking for the perfect child. The whole thing is really upsetting to me. Over and over again, I’m glad Jill was given to us. Sometimes her care can be tiring, but her smiles and laughter would melt any heart. And hopefully, she will have a really healthy and happy childhood and adulthood. We told our OBGYN friend to please give our name to any patients with CDH pregnancies. We were given hope by other CDH parents and we want to continue to give out hope to others in similar circumstances.
Thursday, February 26, 2009
Tube Swap
Well it looks like Jill will be back in the hospital tomorrow. We had a follow-up appointment with the surgeon today, and he told us that the feeding tube that she currently has will need to be switched out with what is called a “button.” It is basically another feeding tube that should be more permanent. Originally, we were under the impression that her current feeding tube would be switched out to the button feeding tube in 3 months, but I guess we were both mistaken. So much to our surprise, this whole procedure of switching the feeding tubes needs to happen much faster and they put us on the schedule for tomorrow. I’m a little overwhelmed at the idea of being back at the hospital so soon. We have to check in at 11:15am and the procedure should start at 1:15pm. She’ll be given some anesthesia. The surgeon will put a scope down her throat. Then he has to puncture a balloon-like mechanism that holds the current feeding tube in place. Anyway, the whole thing should take about an hour. I’m just hoping everything goes smoothly. I know it is somewhat of a routine procedure, but it is hard not to get anxious about it. After watching the terrifying experience of her getting taken off the ventilator, I hope she doesn’t have any respiratory distress or any other complications.
Other Jill updates:
* Her feeding has gotten much better. She is taking over half of her formula from the bottle now with the rest going in her feeding G-tube. On Valentine’s Day, it was the first time in months that I was able to hold her and feed her a bottle while she was fully awake. It was truly amazing.
* Before her surgery she was only drinking about 400 ml of formula (28 calorie concentration) per day. In the hospital the surgeon commented that this was at starvation level. Now she is drinking 740 ml of formula (20 calorie concentration). We are happy she is drinking a lot more. But she is still way behind where she should be for her age and weight. Our current goal is 1150 ml per day. So every feed we slightly increase her amount. However, she has had problems with retching (basically she looks like she is trying to vomit because her stomach can’t handle the amount) so we haven’t been able to increase the feeding as fast as the surgeon had hoped. A few times it has been so bad that we have had to take a syringe and pump out some fluid from her stomach. Not fun.
* Today it was a little disturbing that she has actually lost weight in the past week. Last week she was 15 lbs 13 ounces. Today she was 15 pounds 6 ounces. This is the first time I remember her losing weight. Due to the weight loss we are going to increase the concentration of her formula from 20 to 22 calorie.
* Jill got her first tooth on Monday. Yeah!
* We just received a letter in the mail today saying that Jill is approved for the Medicaid secondary insurance that we applied for. It wasn’t an easy process…lots of phone calls, paperwork, medical records submitted, developmental evaluation, etc….but we are thrilled that she will have this extra insurance for the next year. We are not completely sure what it covers, but it will hopefully offset some of our loss of income this year. (Bryan’s 20% pay cut and increase in cost of health care insurance).
* I am hoping to get more sleep at some point. I thought with the drip feed at night, I would finally be getting sleep. I’m definitely glad I don’t have to get up and make 2-3 bottles a night anymore. But Jill still wakes up for various other reasons. Last night was better, but the night before I was up with Jill at 12am and 1am, then Katelyn at 1:30am, then Jill at 4:30am, then Katelyn was up for the day at 6:45am.
Other Jill updates:
* Her feeding has gotten much better. She is taking over half of her formula from the bottle now with the rest going in her feeding G-tube. On Valentine’s Day, it was the first time in months that I was able to hold her and feed her a bottle while she was fully awake. It was truly amazing.
* Before her surgery she was only drinking about 400 ml of formula (28 calorie concentration) per day. In the hospital the surgeon commented that this was at starvation level. Now she is drinking 740 ml of formula (20 calorie concentration). We are happy she is drinking a lot more. But she is still way behind where she should be for her age and weight. Our current goal is 1150 ml per day. So every feed we slightly increase her amount. However, she has had problems with retching (basically she looks like she is trying to vomit because her stomach can’t handle the amount) so we haven’t been able to increase the feeding as fast as the surgeon had hoped. A few times it has been so bad that we have had to take a syringe and pump out some fluid from her stomach. Not fun.
* Today it was a little disturbing that she has actually lost weight in the past week. Last week she was 15 lbs 13 ounces. Today she was 15 pounds 6 ounces. This is the first time I remember her losing weight. Due to the weight loss we are going to increase the concentration of her formula from 20 to 22 calorie.
* Jill got her first tooth on Monday. Yeah!
* We just received a letter in the mail today saying that Jill is approved for the Medicaid secondary insurance that we applied for. It wasn’t an easy process…lots of phone calls, paperwork, medical records submitted, developmental evaluation, etc….but we are thrilled that she will have this extra insurance for the next year. We are not completely sure what it covers, but it will hopefully offset some of our loss of income this year. (Bryan’s 20% pay cut and increase in cost of health care insurance).
* I am hoping to get more sleep at some point. I thought with the drip feed at night, I would finally be getting sleep. I’m definitely glad I don’t have to get up and make 2-3 bottles a night anymore. But Jill still wakes up for various other reasons. Last night was better, but the night before I was up with Jill at 12am and 1am, then Katelyn at 1:30am, then Jill at 4:30am, then Katelyn was up for the day at 6:45am.
Sunday, February 15, 2009
Wednesday, February 11, 2009
Pajamas
Well since we have been home, there has been the usual scheduling adjustment and getting use to new medications and how to use the feeding pump and so on…but the one thing that I never thought much about until we returned home was how Jill’s feeding G-tube would also affect what clothes she could wear. So for the last couple of days, I have been going through her clothes and trying to figure out what clothes would still fit her. Mostly I’ve just had to switch her to the next size up to make sure onesies and other clothes aren’t too tight on her.
It is really ridiculous, but the one thing that really makes me sad is that she can’t wear her zip-up pajamas anymore because she is on the feeding drip line at night. I don’t think it would bother me so much if Katelyn didn’t care so much about what pajamas Jill wears. Literally, Katelyn starts planning at breakfast what pajamas they are going to wear that night. It just happens that they both have a lot of zip-up pajamas in similar colors (turquoise, purple, pink, etc.). Last night Katelyn really wanted Jill and her to wear their matching turquoise pajamas. She started crying when I told her that Jill couldn’t fit in her turquoise pajamas anymore. Finally, I found some red button up pair of pajamas for Jill and Katelyn’s red pajamas so they could match. This morning Katelyn told me that tonight she wanted to wear their matching purple pajamas.
The whole pajama thing really shouldn’t be that big of a deal, but when I see how sad it makes Katelyn it upsets me too. I think at some point we might have to look for some matching or coordinating 2-piece pajama sets for the girls (or pajamas with the reverse zipper or snaps for Jill so we can still access her feeding G-tube).
It is really ridiculous, but the one thing that really makes me sad is that she can’t wear her zip-up pajamas anymore because she is on the feeding drip line at night. I don’t think it would bother me so much if Katelyn didn’t care so much about what pajamas Jill wears. Literally, Katelyn starts planning at breakfast what pajamas they are going to wear that night. It just happens that they both have a lot of zip-up pajamas in similar colors (turquoise, purple, pink, etc.). Last night Katelyn really wanted Jill and her to wear their matching turquoise pajamas. She started crying when I told her that Jill couldn’t fit in her turquoise pajamas anymore. Finally, I found some red button up pair of pajamas for Jill and Katelyn’s red pajamas so they could match. This morning Katelyn told me that tonight she wanted to wear their matching purple pajamas.
The whole pajama thing really shouldn’t be that big of a deal, but when I see how sad it makes Katelyn it upsets me too. I think at some point we might have to look for some matching or coordinating 2-piece pajama sets for the girls (or pajamas with the reverse zipper or snaps for Jill so we can still access her feeding G-tube).
Monday, February 9, 2009
Glad to be Home
Jill and I came home on Saturday afternoon. I’m so glad to be home. Based on Jill’s increased stranger anxiety each day she was in the hospital, I would say she is very glad to be back home too. It got to the point that anytime someone came close to her hospital crib or spoke to her directly, she would start crying. Once she saw the cleaning lady put on her latex gloves, Jill broke into tears. The cleaning lady kept saying, “Don’t worry, I won’t touch you. I’m just taking out the trash.”
Things I learned in the hospital:
* I pace when I get nervous especially when a surgery lasts 3+ hours longer than expected.
* Every two days it is nice to take a shower and change clothes.
* Nothing is more terrifying than watching your child turn blue.
* Hospitals are very lonely.
* I know my child better than the nurse who was briefed on her for 10 minutes.
* Constant beeps, alarms, and other hospital noise drive me crazy.
* For some reason labs, weight checks, x-rays, and other important items are always done at some ridiculous time like 5 a.m.
* Eating in the cafeteria gets old.
* Not seeing your child smile or laugh for nearly a week is one of the hardest things.
* With the constant interruptions, it is impossible to sleep in a hospital.
* When you start running into people who remember you from your last hospital stay, you know you have been in the hospital too much.
Now that Jill is home, Bryan and I are learning how to take care of her again. At this point, her care is a bit complicated. It is almost like having a newborn in the house. During the day she has to be fed every three hours and at night she is on a drip line for 8 hours. Since she has been home she has only taken two bottles (both from Bryan). The rest of the formula feedings are done through her feeding G-tube. We are trying to stretch her stomach so every feed is increased slightly. If she starts retching (appears to vomit/stomach not handling the feed) then we have to decrease the next feed slightly. On top of learning how to use the feeding pump, we have to clean her skin around the G-tube twice a day, and remember all of her daily medicines. Overall, she is doing really well. She smiles and laughs often. She has eaten some baby food in her high chair (note: she can’t have any chunky food for 3 months). She seems a little more worn out than usual. Late this afternoon she rested her head on my lap for about 20 minutes.
I think it is going to be hard to leave the house much. Originally, we were hoping the G-tube would be very temporary, but now it looks like she will have it at least for several months. Ideally, she will start taking most of her food orally, but with her extreme oral aversion to her bottle this is unlikely. I’m hoping that once she completely heals from her surgery, I can introduce sippy cups more to her.
We haven’t received any bills from her 11 day hospital stay and almost 7 hour surgery yet. However, when Bryan went to the pharmacy to pick up her new medications, one of them was going to cost $80. Bryan called the hospital to find out if there was a cheaper generic version of the same medicine. After talking with the surgeon, he said we could forego this prescription and just finish off our old medicine. So thankfully, we didn’t have that expense. At this point, we are in the process of applying for a supplemental insurance for Jill through Medicaid. I’m really hoping that we get this insurance, but I’ve heard almost everyone gets denied the first time they apply. We are also hoping that more engineering work will come in for Bryan’s company so his job will be more stable.
Things I learned in the hospital:
* I pace when I get nervous especially when a surgery lasts 3+ hours longer than expected.
* Every two days it is nice to take a shower and change clothes.
* Nothing is more terrifying than watching your child turn blue.
* Hospitals are very lonely.
* I know my child better than the nurse who was briefed on her for 10 minutes.
* Constant beeps, alarms, and other hospital noise drive me crazy.
* For some reason labs, weight checks, x-rays, and other important items are always done at some ridiculous time like 5 a.m.
* Eating in the cafeteria gets old.
* Not seeing your child smile or laugh for nearly a week is one of the hardest things.
* With the constant interruptions, it is impossible to sleep in a hospital.
* When you start running into people who remember you from your last hospital stay, you know you have been in the hospital too much.
Now that Jill is home, Bryan and I are learning how to take care of her again. At this point, her care is a bit complicated. It is almost like having a newborn in the house. During the day she has to be fed every three hours and at night she is on a drip line for 8 hours. Since she has been home she has only taken two bottles (both from Bryan). The rest of the formula feedings are done through her feeding G-tube. We are trying to stretch her stomach so every feed is increased slightly. If she starts retching (appears to vomit/stomach not handling the feed) then we have to decrease the next feed slightly. On top of learning how to use the feeding pump, we have to clean her skin around the G-tube twice a day, and remember all of her daily medicines. Overall, she is doing really well. She smiles and laughs often. She has eaten some baby food in her high chair (note: she can’t have any chunky food for 3 months). She seems a little more worn out than usual. Late this afternoon she rested her head on my lap for about 20 minutes.
I think it is going to be hard to leave the house much. Originally, we were hoping the G-tube would be very temporary, but now it looks like she will have it at least for several months. Ideally, she will start taking most of her food orally, but with her extreme oral aversion to her bottle this is unlikely. I’m hoping that once she completely heals from her surgery, I can introduce sippy cups more to her.
We haven’t received any bills from her 11 day hospital stay and almost 7 hour surgery yet. However, when Bryan went to the pharmacy to pick up her new medications, one of them was going to cost $80. Bryan called the hospital to find out if there was a cheaper generic version of the same medicine. After talking with the surgeon, he said we could forego this prescription and just finish off our old medicine. So thankfully, we didn’t have that expense. At this point, we are in the process of applying for a supplemental insurance for Jill through Medicaid. I’m really hoping that we get this insurance, but I’ve heard almost everyone gets denied the first time they apply. We are also hoping that more engineering work will come in for Bryan’s company so his job will be more stable.
Friday, February 6, 2009
Homecoming on Saturday!
Judy just called to say that she just found out that Jill can come home as soon as tonight! Since it is already after 8:00 p.m., we decided that she will come home around midday tomorrow (Saturday). As you can see, Jill is looking like her normal self. Happy as can be.We will need to figure out the feeding tube pump instructions. There's no time to procrastinate.
Thank you to all of you who have been praying for Jill, Judy, Katelyn, and me. A special thanks to our friend, Virginia, and her young son, Randall, who bumped up their trip from Washington to stay at our house for I think 8-9 days and nights to help take care of Katelyn. Without this stability in Katelyn's life, our lives would have been much more stressful these past two weeks.
We are tentatively planning a road trip to California from March 6th- 15th if all goes well. My step-brother is getting married and we haven't visited since November 2007. Jill's doctor doesn't think it should be a problem. We're praying that the tube feeding thing will be mastered by then and that the roads will be clear.
Wednesday, February 4, 2009
Dirty Diapers
A quick update. Jill started eating again a couple of days ago. As predicted, she still has an aversion to her bottle. She associates it with pain from acid reflux even though she shouldn't have the pain anymore. So Judy has been trying to bottle feed her when she's asleep. Since she isn't getting much that way, Jill has had several feedings through her new feeding tube. So far so good. Judy has noticed a significant increase in the number of wet diapers. Before we used to be able to go several hours without changing a wet diaper. No longer.
For those of you who may have been "praying for poop" as requested, please stop! Her bowels are working overtime.
Sorry for the graphic update.
Jill is definitely looking happier and more active. We're still not sure when Jill and Judy will head home. Friday may be possible, but sometime this weekend is more likely.
For those of you who may have been "praying for poop" as requested, please stop! Her bowels are working overtime.
Sorry for the graphic update.
Jill is definitely looking happier and more active. We're still not sure when Jill and Judy will head home. Friday may be possible, but sometime this weekend is more likely.
Monday, February 2, 2009
Smiling!
Jill's fever last night of 103 degrees subsided just after midnight. The new antibiotics that she was put on last night appeared to have cleared up a mild staph infection in her blood. Her stomach also appears to be digesting saliva and other stomach juices for the first time since her surgery. So the plan is to starting feeding her tomorrow. If all goes well, she could be home as soon as Thursday!
Jill finally smiled for us today. We had really been missing her smiles as she is generally a happy child. Not seeing her smile for nearly a week was difficult.
Please pray that the feeding goes well. We hear that once a baby develops an aversion to eating, drinking from a bottle in Jill's case, pain can still be associated with the act of eating even after surgery has been performed to eliminate that pain. If all goes well, Jill could have the feeding tube removed in as little as two months. Some children, however, can be left on a feeding tube for years. We're praying that Jill will get all of the nutrition she needs from eating solids and drinking from the bottle without any supplemental tube feedings.
Jill finally smiled for us today. We had really been missing her smiles as she is generally a happy child. Not seeing her smile for nearly a week was difficult.
Please pray that the feeding goes well. We hear that once a baby develops an aversion to eating, drinking from a bottle in Jill's case, pain can still be associated with the act of eating even after surgery has been performed to eliminate that pain. If all goes well, Jill could have the feeding tube removed in as little as two months. Some children, however, can be left on a feeding tube for years. We're praying that Jill will get all of the nutrition she needs from eating solids and drinking from the bottle without any supplemental tube feedings.
Sunday, February 1, 2009
Jillian Update
Jill left the ICU late Friday night for the Pediatric Ward. Unfortunately, she cried most of the night after she was taken off morphine and put on a weaker pain killer. So Judy and Jill got about two hours of sleep that night. It wasn't until around midday on Saturday that Jill was put back on morphine after Judy pleaded with the nurse (actually the second nurse...the first nurse asked to be relieved of his duties in Jill's room after becoming frustrated with Judy...I side with Judy). So the rest of Saturday went better for Jill.
Last night Jill woke up around 2:30 and didn't sleep much the rest of the night. So her and Judy were very tired today. Jill is now off morphine and is not having as much discomfort. However, she has been running a fever, as high as 103 at one point. Last I heard it was coming down. Apparently, fevers sometimes are caused by having too much "gunk" in the lungs. We are praying that this isn't the case for Jill. Her lungs may still be somewhat compromised from being so limited at birth. Any type of chest congestion could be much more severe for her.
On a postive note, Jill had her first bowel movement tonight. This may not sound that exciting, but this morning her nurse told Judy to "pray for poop." This is a sign that her bowels have started functioning again after shutting down with surgery and morphine treatments. Now Jill can probably start getting nutrition in her stomach since she will be able to pass it through. She is being watched now to see if she has any difficulty passing the normal stomach secretions without any gagging/retching. Judy reported to me tonight that Jill was experiencing some of this (with clear spitup, possibly saliva from her throat). So we will see when she will actually be able to eat.
Please pray that Jill's fever will subside, that her gagging/retching will end, and that she will be able to eat. Once this happens, we hear that it is likely she will be able to come home within two days. Also, please pray for Judy as she is very tired and stressed out over Jill's recovery. I have had difficulty being in Jill's hospital room for a couple of hours. Judy has been there nearly 48 hours straight, minus about 45 minutes spent in the cafeteria today for lunch with Katelyn and me.
Last night Jill woke up around 2:30 and didn't sleep much the rest of the night. So her and Judy were very tired today. Jill is now off morphine and is not having as much discomfort. However, she has been running a fever, as high as 103 at one point. Last I heard it was coming down. Apparently, fevers sometimes are caused by having too much "gunk" in the lungs. We are praying that this isn't the case for Jill. Her lungs may still be somewhat compromised from being so limited at birth. Any type of chest congestion could be much more severe for her.
On a postive note, Jill had her first bowel movement tonight. This may not sound that exciting, but this morning her nurse told Judy to "pray for poop." This is a sign that her bowels have started functioning again after shutting down with surgery and morphine treatments. Now Jill can probably start getting nutrition in her stomach since she will be able to pass it through. She is being watched now to see if she has any difficulty passing the normal stomach secretions without any gagging/retching. Judy reported to me tonight that Jill was experiencing some of this (with clear spitup, possibly saliva from her throat). So we will see when she will actually be able to eat.
Please pray that Jill's fever will subside, that her gagging/retching will end, and that she will be able to eat. Once this happens, we hear that it is likely she will be able to come home within two days. Also, please pray for Judy as she is very tired and stressed out over Jill's recovery. I have had difficulty being in Jill's hospital room for a couple of hours. Judy has been there nearly 48 hours straight, minus about 45 minutes spent in the cafeteria today for lunch with Katelyn and me.
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