Congratulations to Brad and Kellie for bringing home their baby Carter. Carter was born with CDH and has been at Duke for the past several months. They are a wonderful family and we are very happy for them. I had tears in my eyes just reading their blog knowing how happy they must be!
Baby Davis was just born at Duke with CDH and is doing well. So far, no ECMO for him. Check out his story here.
Baby Ava went in for another surgery to repair her intestines and was just extubated yesterday. She is so cute and a big fighter. Check out her story here.
Please continue to pray for all the CDH babies out there. About 2,500 babies are born a year with CDH and we only know of a few of them through their blogs. Please keep them all in your prayers. Blogging really does make the world seem smaller and creates such a nice community for all the families with similiar experiences with CDH. I only know of two other families with babies that were born with CDH from Hopkins. According to our surgeon about 12 babies a year are born with CDH at Hopkins.
Saturday, January 31, 2009
Wyatt is a nice person
Chloe said to me on Friday night, "Mommy, Wyatt is a nice person." and I said, "You are too Chloe." I am so lucky to have Chloe and Wyatt. Chloe then set up two chairs and asked if Wyatt could sit with her. Wyatt then kept trying to grab Chloe's hand to hold and that's when Chloe had enough and got up:)
Look at me, no oxygen!!! (for an hour) We have doctor orders now to leave Wyatt off his oxygen for an hour a day. He is a little congested now, but we watch him very closely doing spot checks on the monitor.
Look at me, no oxygen!!! (for an hour) We have doctor orders now to leave Wyatt off his oxygen for an hour a day. He is a little congested now, but we watch him very closely doing spot checks on the monitor.
Saturday Happenings....
Chloe attended an inflatable gym today for a birthday party!! She didn't like it at first, but then she warmed up and was climbing everywhere:)
Chloe brought her brother home a purple balloon, since Wyatt can be off oxygen for one hour a day I thought I show you what the stat monitor reads. Wyatt is off oxygen and we spot check him. It's hard to read, but it says 98 percent!! That's awesome!!! It ranges from 95 to 98, but we were happy when we saw it!!
Wyatt is growing fast. He is now in 18-24 month clothes. We took all his 12 month clothes out last weekend and discovered that he does not have very many "tube friendly" clothes remaining. We love "all in one" with snaps. It makes it so much easier. Shirt and pants are tough because with the g-tube, his belly always shows with shirts but not in an all in one outfit. So my kind grandmother took the clothes that fit him now and cut off the hoods and sewed a nice hem around the neck. He had so many clothes with hoods!! She also made nice holes in the clothes that had zippers. Thanks grandmom!
When Wyatt is off his oxygen, he loves to ride his fire truck and ice cream truck around the house! Chloe loves to be a big sis and push him around (and sometimes pushes him into walls:)
Chloe brought her brother home a purple balloon, since Wyatt can be off oxygen for one hour a day I thought I show you what the stat monitor reads. Wyatt is off oxygen and we spot check him. It's hard to read, but it says 98 percent!! That's awesome!!! It ranges from 95 to 98, but we were happy when we saw it!!
Wyatt is growing fast. He is now in 18-24 month clothes. We took all his 12 month clothes out last weekend and discovered that he does not have very many "tube friendly" clothes remaining. We love "all in one" with snaps. It makes it so much easier. Shirt and pants are tough because with the g-tube, his belly always shows with shirts but not in an all in one outfit. So my kind grandmother took the clothes that fit him now and cut off the hoods and sewed a nice hem around the neck. He had so many clothes with hoods!! She also made nice holes in the clothes that had zippers. Thanks grandmom!
When Wyatt is off his oxygen, he loves to ride his fire truck and ice cream truck around the house! Chloe loves to be a big sis and push him around (and sometimes pushes him into walls:)
Wednesday, January 28, 2009
Staying Organized
Beware... this is a geeky post:)) I love to organize, I don't always stay organized, but I like it!! I get on these kicks to get organized and the past few days was one of them. Sometimes I feel that I run a small business in our home, with night nursing, day nursing that includes three different nursing schedules. I am very grateful for nursing (I couldn't work with out them) and we love our nurses very much. Also, with my parents watching the kids one day a week, plus Benji and I there are a lot of people coming in and out of our house managing the day to day things and care for Wyatt and Chloe.... especially for Wyatt. Wyatt is camped out in a family room in the middle of everything. All his belongings are also housed in our family room/morning room so since we spend the most time in those rooms, we have to be organized. So here are a few things that we do-
This is the dresser that contains his g-tube kits, connectors, and medication such as his xopenex and flovent. The other drawers contains his clothes, socks, and bibs.
This container has office supplies especially for the nurses. It also has box cutters for all the boxes of supplies and formula that we receive. It contains sharpie markers to date all open containers such as sterile water:) It also has alcohol pads, 3 ml syringes, and lubricate.
We bought his cart to store his oxygen tubing, cannulas, neublizer kits, suction kits, oxygen connectors, pulse ox probes, masks, etc... I love my label maker so I labeled everything. So whoever unpacks the boxes the supplies can go in the right place!
I don't know why this photo is sideways... but it has all the nursing notes divided by type. After they are filled out, it goes into Wyatt's medical binder and also mailed off to the agency. The supervisor checks the binder once a month.
Because we have three different nurses, I try to keep everything consistent by writing down Wyatt's goals for that shift and what to do. I am not being bossy, I am just trying to keep everything the same. So at night, Wyatt gets vented every hour, medication at 12am and 3am, and his food bag filled every four hours. His nasal cannulas will fall out of his nose, so they need to be placed in. While Wyatt is sleeping, the night nurse charges and cleans the machines, organizes the supplies, refills diapers and just gets everything ready for the daytime. We love our night nurse. She currently works 6 days a week from 11-7am. Please don't think I ignore Wyatt because we have nurses. I understand the importance of parent/child bond. When Wyatt cries in the middle of the night or wakes up extra early, we are there for him. The night nurse just allows us to get some sleep since he needs cares hourly while he sleeps. We are there to hold him, rock him, cuddle with him, read to him, etc..
Wyatt's diaper bag (was Chloes, now it's Wyatts with the check list of supplies needed.
Basket of everyday supplies near the changing table such as supplies to clean his g-tube, etc...
Wyatt medical book which contains doctor orders and nursing notes. The supervisor of the insurance company and the agency checks this book. Chloe likes to do art work in it too:))
List of everything to be in the diaper bag. Lately we have been going to doctor appointments once a week. Stocking Wyatt's diaper bag is different than stocking a well baby diaper bag. Besides the essentials, we keep a spare g-tube, connectors, ambu bag, pulse ox probe, and other medical supplies needed for emergencies... for example when we went to the pumpkin farm his g-tube connector fell off and we did not have a spare:)) we learned our lesson.
Day nursing- Nurse K works on Mondays and Nurse S works Tu,Th, Fri. Nurse S also works on Sunday nights. They are both awesome and love Wyatt as much as I do. They interact with him all day long. The day sheet is different than the night sheet since Wyatt only naps from 1-3pm. The day sheet includes his therapy and is divided into physical, cognative, speech, and oral/food. The day nurses also take Wyatt out for long walks, teach him sign language, etc.... I make a point to share with the nurses to treat Wyatt like a normal baby and not like a sick baby.. to interact with him like you would a normal, healthy child.
How do we keep therapy that is scheduled twice a week, doctor appointments, and everything else organized? Well.. since I have a work schedule too, I keep up with everything in my nifty Mom Agenda which has a space for your kids seperate from work-related items. In the past, Wyatt's appointments sometimes were overlooked since they were shuffled in between work stuff... now with my nifty Mom Agenda everything is divided up. It also contains all of Wyatt's medical information, ie- doctors, nursing, pharmarcy, so if I am away from our home and need to get a refill on a med, or rechedule an appointment, I have the info with me:)) I am such a geek!!
For the current month, I transcribe the kids stuff to our wall calendar for the nurses and family members.
Finally, I create a calendar of the nurses schedules
and keep track of our weekly meals on this board- (so any one like my husband can get dinner started if I am not around:))
I know every parent seems like they run a small business inside their home beside working too... this is just a glimpse of our home. Sometimes it gets totally disorganized and I am no where near perfect. I am very thankful of all the help that we do have and appreciate everyone's genorisity.
This is the dresser that contains his g-tube kits, connectors, and medication such as his xopenex and flovent. The other drawers contains his clothes, socks, and bibs.
This container has office supplies especially for the nurses. It also has box cutters for all the boxes of supplies and formula that we receive. It contains sharpie markers to date all open containers such as sterile water:) It also has alcohol pads, 3 ml syringes, and lubricate.
We bought his cart to store his oxygen tubing, cannulas, neublizer kits, suction kits, oxygen connectors, pulse ox probes, masks, etc... I love my label maker so I labeled everything. So whoever unpacks the boxes the supplies can go in the right place!
I don't know why this photo is sideways... but it has all the nursing notes divided by type. After they are filled out, it goes into Wyatt's medical binder and also mailed off to the agency. The supervisor checks the binder once a month.
Because we have three different nurses, I try to keep everything consistent by writing down Wyatt's goals for that shift and what to do. I am not being bossy, I am just trying to keep everything the same. So at night, Wyatt gets vented every hour, medication at 12am and 3am, and his food bag filled every four hours. His nasal cannulas will fall out of his nose, so they need to be placed in. While Wyatt is sleeping, the night nurse charges and cleans the machines, organizes the supplies, refills diapers and just gets everything ready for the daytime. We love our night nurse. She currently works 6 days a week from 11-7am. Please don't think I ignore Wyatt because we have nurses. I understand the importance of parent/child bond. When Wyatt cries in the middle of the night or wakes up extra early, we are there for him. The night nurse just allows us to get some sleep since he needs cares hourly while he sleeps. We are there to hold him, rock him, cuddle with him, read to him, etc..
Wyatt's diaper bag (was Chloes, now it's Wyatts with the check list of supplies needed.
Basket of everyday supplies near the changing table such as supplies to clean his g-tube, etc...
Wyatt medical book which contains doctor orders and nursing notes. The supervisor of the insurance company and the agency checks this book. Chloe likes to do art work in it too:))
List of everything to be in the diaper bag. Lately we have been going to doctor appointments once a week. Stocking Wyatt's diaper bag is different than stocking a well baby diaper bag. Besides the essentials, we keep a spare g-tube, connectors, ambu bag, pulse ox probe, and other medical supplies needed for emergencies... for example when we went to the pumpkin farm his g-tube connector fell off and we did not have a spare:)) we learned our lesson.
Day nursing- Nurse K works on Mondays and Nurse S works Tu,Th, Fri. Nurse S also works on Sunday nights. They are both awesome and love Wyatt as much as I do. They interact with him all day long. The day sheet is different than the night sheet since Wyatt only naps from 1-3pm. The day sheet includes his therapy and is divided into physical, cognative, speech, and oral/food. The day nurses also take Wyatt out for long walks, teach him sign language, etc.... I make a point to share with the nurses to treat Wyatt like a normal baby and not like a sick baby.. to interact with him like you would a normal, healthy child.
How do we keep therapy that is scheduled twice a week, doctor appointments, and everything else organized? Well.. since I have a work schedule too, I keep up with everything in my nifty Mom Agenda which has a space for your kids seperate from work-related items. In the past, Wyatt's appointments sometimes were overlooked since they were shuffled in between work stuff... now with my nifty Mom Agenda everything is divided up. It also contains all of Wyatt's medical information, ie- doctors, nursing, pharmarcy, so if I am away from our home and need to get a refill on a med, or rechedule an appointment, I have the info with me:)) I am such a geek!!
For the current month, I transcribe the kids stuff to our wall calendar for the nurses and family members.
Finally, I create a calendar of the nurses schedules
and keep track of our weekly meals on this board- (so any one like my husband can get dinner started if I am not around:))
I know every parent seems like they run a small business inside their home beside working too... this is just a glimpse of our home. Sometimes it gets totally disorganized and I am no where near perfect. I am very thankful of all the help that we do have and appreciate everyone's genorisity.
My sis... the entrepreneur
For Christmas, my sister's husband, Gino took pictures of Chloe and Wyatt and they gave me some framed pictures of them. Above are a few examples. They recently created a new business with their wedding photographer, Erin and created Ella Foto.. Also, Gino gave my sister a trip to France for Christmas. Here are the photos from that trip and their wedding.. Finally, here is Gino's photography website for his independent business. So far Ella Foto is really taken off! They are based in Washington DC and have several clients already. They specialize in destination weddings... go figure:))
Snow Day Again!!
I have no idea why these pictures are sideways, they are not that way in my camera. I tried to re-do it twice and it's not right... so just turn your head to view them:))
Wyatt in his snowpants!
Well... it's another snow day with no nurses, parents, or husband. Just Wyatt, Chloe, and I. Wyatt is definitely getting out of the family room while it's just me around. He hangs out in my bed room while I take a shower, he plays in Chloe's room while she gets ready for the day, and comes outside to play in the snow!! I got out the jogging stroller, put on his snow pants (Chloe's snow pants from last year... they are brown, but don't tell Wyatt that they are pink inside:)) and put on all Chloe's gear.... 30 minutes later...we were all dressed and ready to play outside! I pushed Wyatt in the jogging stroller and pulled Chloe in the sled. Our driveway is all ice and my dog was barking at us... I am pretty sure it was a very funny site to see:))) We walked to Addy and Ben's house to play and their mom invited us inside for an impromptu play date. Wyatt had a great time playing with Ben and Chloe enjoyed playing with Addy, who is only 15 days younger than Chloe. They were both really tired when we got home because Wyatt fell asleep as I was changing his diaper and Chloe feel asleep right after lunch. They are sleeping now and even though I should be cleaning, I am blogging instead:)) I love snow days!!
Wyatt in his snowpants!
Well... it's another snow day with no nurses, parents, or husband. Just Wyatt, Chloe, and I. Wyatt is definitely getting out of the family room while it's just me around. He hangs out in my bed room while I take a shower, he plays in Chloe's room while she gets ready for the day, and comes outside to play in the snow!! I got out the jogging stroller, put on his snow pants (Chloe's snow pants from last year... they are brown, but don't tell Wyatt that they are pink inside:)) and put on all Chloe's gear.... 30 minutes later...we were all dressed and ready to play outside! I pushed Wyatt in the jogging stroller and pulled Chloe in the sled. Our driveway is all ice and my dog was barking at us... I am pretty sure it was a very funny site to see:))) We walked to Addy and Ben's house to play and their mom invited us inside for an impromptu play date. Wyatt had a great time playing with Ben and Chloe enjoyed playing with Addy, who is only 15 days younger than Chloe. They were both really tired when we got home because Wyatt fell asleep as I was changing his diaper and Chloe feel asleep right after lunch. They are sleeping now and even though I should be cleaning, I am blogging instead:)) I love snow days!!
A proud Daddy
"Mommy, please don't take another picture of me"
Chloe is such a girl! She does not like to be dirty, loves bows in her hair, and loves the color pink... with an exception. Chloe loves spider man!! The other day, she dressed up princess outfit and ran around the house singing the spider man theme song... spider man, spider man, if he can't do it no one can... Benji and I were both cracking up! I guess she is a well-rounded girl!! Benji took her to Target to buy slippers. Chloe picked out spider man slippers to go with her pink Dora pj's. Again, another proud moment for her Daddy:)
Chloe is such a girl! She does not like to be dirty, loves bows in her hair, and loves the color pink... with an exception. Chloe loves spider man!! The other day, she dressed up princess outfit and ran around the house singing the spider man theme song... spider man, spider man, if he can't do it no one can... Benji and I were both cracking up! I guess she is a well-rounded girl!! Benji took her to Target to buy slippers. Chloe picked out spider man slippers to go with her pink Dora pj's. Again, another proud moment for her Daddy:)
Chloe is an official BIG girl!
Chloe's bed time is 8pm, but at midnight, I went in to take pictures:))
oops... I think I woke her up:))
As you may know, we have had Chloe's big girl bed for a few weeks, but she would only take a nap in it from time to time. After I put the princess sheets and comforter that her Gran and Grandad gave her, she wants to sleep in the bed now. Last night was her first night sleeping in a real bed all by herself. She was so good, she slept all night long (I kept checking on her and took pictures while she was sleeping). She even got out of bed by herself and came downstairs after she woke up. I am so proud of her:))
oops... I think I woke her up:))
As you may know, we have had Chloe's big girl bed for a few weeks, but she would only take a nap in it from time to time. After I put the princess sheets and comforter that her Gran and Grandad gave her, she wants to sleep in the bed now. Last night was her first night sleeping in a real bed all by herself. She was so good, she slept all night long (I kept checking on her and took pictures while she was sleeping). She even got out of bed by herself and came downstairs after she woke up. I am so proud of her:))
It's a Snow Day!!!
Chloe and Savannah (our neighbor) together
Brownie face Chloe!!
Kids and teachers love snow days... and guess what... it snowed today!! Today it was just Chloe, Wyatt, and myself and we made the most of it. We made brownies, played upstairs, played downstairs, and even had Chloe's friend Savannah come over to play. It was a fun day to just play with the kids, not having to go anywhere.
Brownie face Chloe!!
Kids and teachers love snow days... and guess what... it snowed today!! Today it was just Chloe, Wyatt, and myself and we made the most of it. We made brownies, played upstairs, played downstairs, and even had Chloe's friend Savannah come over to play. It was a fun day to just play with the kids, not having to go anywhere.
Thursday, January 22, 2009
Goals for Wyatt!
Today Wyatt had his pulmonary appointment and Dr. C commented on how great Wyatt looks and that it may be time to start to wean his diuretics, oxygen, and flovent. He knows Wyatt very well from Hopkins and Mt. Wash and knows that Wyatt does not respond to change very well. So he recommended that we start to wean the diuretics first. So as of tonight, the dose is cut in half for three weeks. If he responds well, then they are discontinued. Yeah!!! Wyatt also got an order that he may remain off 02 for one hour a day if he maintains his stats over 93%. Wyatt is currently on 1/4 liter and his stats are usually 98 percent. I am looking at the machine now and it's reading 100 percent. We have been taking him off during bath time and sometimes while he is playing and he seems to do fine... keep his stats above 96 percent. The issue is that during the night when he falls into a deep sleep he will destat and needs oxygen. Also, during flu and cold season, he seems to have a runny nose all the time so he needs to be suctioned two/ three times a day. So we are going to wait until spring to try anything drastic. In the spring, we may try to leave him off during the day time and on at night. It helps having the pulse ox monitor to measure his 02 saturation. I don't know what we would do with out this machine! He is always connected to it, but as wean him off 02, we will be doing spot checks. This is exciting news... I hope Wyatt will respond well to it. We are also increasing his food intake from 50ml/hr to 55 ml/hr since he is growing. By the summer, it would be so nice to go for a walk with out the food pump and oxygen!! Things will only be accomplished if we set goals!!
Wednesday, January 21, 2009
A Special Day for Daddy and Chloe
All ready for lunch and waiting for Daddy to arrive home to pick me up!
(my mom watched the kids today while I was working... so she took some pics!)
Today Benji celebrated his 10 year anniversary with his work. The president hosted a lunch with included all the honorees, their bosses, and a guest. Benji's special guest was Chloe. Chloe was very excited to visit her Daddy's office and have a special lunch. I heard that she was on her very best behavior and had good manners. The food sounded delicious, but Chloe choose to just eat a roll and then skip to dessert:) She even dressed up for the occasion.
(my mom watched the kids today while I was working... so she took some pics!)
Today Benji celebrated his 10 year anniversary with his work. The president hosted a lunch with included all the honorees, their bosses, and a guest. Benji's special guest was Chloe. Chloe was very excited to visit her Daddy's office and have a special lunch. I heard that she was on her very best behavior and had good manners. The food sounded delicious, but Chloe choose to just eat a roll and then skip to dessert:) She even dressed up for the occasion.
Tuesday, January 20, 2009
First Big Boy Shoes and a Doctor's Appt.
Look at my cool new shoes!
Don't bother me! I am reading People Magazine!!
Well today Wyatt wore his first real shoes with a rubber sole and he loved it! He thought they were the coolest thing. He kicked everything and studied them very carefully. Previously, he wore Robez or slippers since he is not walking yet. Speaking of walking, I think we are coming close to some kind of form of crawling. He will rock really hard in a sitting position and then bend in half to reach something. Wyatt is extremely flexible. He does his morning yoga exercises and can even suck his toe! Is that talent or what?? I am so proud of my little boy!
Speaking of a little boy... he is not a baby anymore... he is out-growing his car seat and prefers to sit in the waiting room chairs rather than being held. He even enjoys to read People magazine as he waits! These doctor appointments are old hat to him!! Wyatt had his hearing test today. We sat in a sound proof booth. I held Wyatt and had to be super boring. Sounds were made on the right and left side and of various loudness. There was a puppy (fake) in a little box that would light up and he had to look in the correct direction. Wyatt passed with flying colors!! The audiologist said that he got it every time... he would raise his eyebrows, move his eyes, and turn his head. My little achiever! Tomorrow we have our nursing review meeting and on Thurs. is the pulomonology appt.
Tonight we took Chloe and Wyatt to the puppet show- Frog Prince. Chloe loved it and laughed at all the jokes. Wyatt cried at the loud noises so Daddy and Wyatt walked around the library until it ended. Chloe even announced to the group that it was too loud for Wyatt!! Such a good BIG sister:) We'll try again next time!
Don't bother me! I am reading People Magazine!!
Well today Wyatt wore his first real shoes with a rubber sole and he loved it! He thought they were the coolest thing. He kicked everything and studied them very carefully. Previously, he wore Robez or slippers since he is not walking yet. Speaking of walking, I think we are coming close to some kind of form of crawling. He will rock really hard in a sitting position and then bend in half to reach something. Wyatt is extremely flexible. He does his morning yoga exercises and can even suck his toe! Is that talent or what?? I am so proud of my little boy!
Speaking of a little boy... he is not a baby anymore... he is out-growing his car seat and prefers to sit in the waiting room chairs rather than being held. He even enjoys to read People magazine as he waits! These doctor appointments are old hat to him!! Wyatt had his hearing test today. We sat in a sound proof booth. I held Wyatt and had to be super boring. Sounds were made on the right and left side and of various loudness. There was a puppy (fake) in a little box that would light up and he had to look in the correct direction. Wyatt passed with flying colors!! The audiologist said that he got it every time... he would raise his eyebrows, move his eyes, and turn his head. My little achiever! Tomorrow we have our nursing review meeting and on Thurs. is the pulomonology appt.
Tonight we took Chloe and Wyatt to the puppet show- Frog Prince. Chloe loved it and laughed at all the jokes. Wyatt cried at the loud noises so Daddy and Wyatt walked around the library until it ended. Chloe even announced to the group that it was too loud for Wyatt!! Such a good BIG sister:) We'll try again next time!
Monday, January 19, 2009
Snow Day!
Chloe inside playing with her snowsuit on... she refused to take it off!!
First... Wyatt is fine. No more brown residue and he has been very happy. I have no idea was that was an isolated incident... but so far we are ok. Tomorrow he has a hearing appointment and on Thursday he has a pulmonary appt. In between he has two therapy sessions. I also have a nursing review meeting and am working four days. It's a busy week! Today it snowed less than an inch.. however we have not received anything this year, so we took full advantage of it. Today, Daddy and Mommy took her to tumble kicks (she thought it was special that we both went with her together}. After Chloe woke up from her nap, we went outside for some sleigh riding and snow angels. Chloe loved it and she especially liked make number 8's in the snow by running in two circles side by side. She created this game herself!! She loved being in her snowsuit so much than she would not take it off until bed time!! As you can see in the picture above, she played all night wearing her snowsuit! Last year, we had one snow day together and we enjoyed the mommy-daughter bonding so much. I remember it so clearly because it was one of the few days I stayed home from the hospital. Chloe really enjoys our time together and I hope it stays that way:)
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