Saturday, June 1, 2013
Feeding Pump Tip
After months of Liam sleeping through the night but having to continue to wake up to add formula I the feeding pump and to re-prime it every 4 hours, I was fed up! Formula cannot stay un-refrigerated for more than 4 hours because it goes bad. My solution? I got those insulated bags from when they'd mail me Liam's refrigerated meds that needed to stay cool during the journey. I figured I meds can stay good traveling for 2 days in these bags, surely formula will be fine for 12 hours. I cut a small hole in an upper corner, where the opening is so I could hang it on his IV pole. Then I cut a hole in the corner diagonal to that big enough for the tubing to go through. After filling the bag with the formula he needs for the night, I add a few ice packs to keep it cold. Liam normally uses just a bit more formula that the bag can hold at one time so I just refill it after I go to bed a few goes after he does. I've been doing this for a week now and its been a life saver. The next morning the bag doesn't look gross from old milk either because the milk never went bad. His tummy also handled is better. You can buy insulated bag at most stores. I've also used a zip lock bag and a few other things but this works the best.
Friday, May 31, 2013
Mommies Gone Survival Kit
Having a CDHer is hard and trying. Having other kids makes it even harder on both you and the kids. It's really hard on Lanie when I have to take Liam to the hospital stays. She's gotten to the point where she thinks if she keeps her bags packed that she will be able to go with us. I made a deal with her. If she kept her bags unpacked then we'd get a special box filled with stuff. She couldn't have it until Liam's next admittance to the hospital though so its to stay put up. I call it the "Mommies Gone Survival Kit". We got a shoe box sized tub and I let her pick out stuff to put in it. I left plenty of room so I could put in a few suprises as well. Small dolls, stickers, crayons and coloring books, travel games are all awesome for the survival kit. Other good ideas are photos, small books, maybe even a card or letter. This is also a great idea for kids who spend alot of time in the hospital.
Lanie picked out this tub covered in hearts but you could decorate your own with permanent markers and foam stickers.
Small items are bet because they take up less space, so you can put more into the box.
Lanie choose these crayons by CraZArt called Sugary Sweets. We found them at Walmart for .75 cents. We did see a whole new line of Crayola crayons that are glittery, matalic and more. Target sales then for .99 cents. We recently bought a pack of glittery crayons that she absolutely loves.
Barbie is quickly becoming a hit with Lanie. She picked out 2 of the little dolls (skippers sister or something like that). Lalaloopsy works great too because of the size. For boys there all kinds of great toys that are small enough for the tub. Hint; Check out the dollar store for army men! Hot wheels are awesome too.
The dollar store and the dollar section at target usually have some good stuff that would be perfect. We got the magnetic tic tac toe in the dollar section at target and the hello kitty stickers and mirror.
Kids don't need a whole lot. When they open these tubs and see them packed with all kinds of goodies they get excited.
For hospitalized kids you can add socks, movies, snacks. Card games and those electronic handheld games. We can't go to the hospital without cars and puzzles and books in tow. We also have to bring his favorite stuffed animal.
In a perfect world we wouldn't have sick children but we might as well make it easier on everyone.
Wednesday, May 29, 2013
Chronic Lung Disease: Its Not Just For The Elderly
When you hear the words Chronic Lung Disease, most people think older
people walking around with nasal canulas dragging oxygen tanks with
them. Very few people would ever imagine a baby with Chronic Lung
Disease. So you could imagine how heart broken I was when Liam was
diagnosed with CLD. Come to find out Chronic Lung Disease is just
another way of saying long term respitory problems. And although its
used mostly for premature babies and elderly, others can get it too.It
is also known as bronchopulmonary dysplasia (BPD).
Blood tests (test used to determine if enough oxygen is in the blood) and an echocardiography (test that use sound waves to create images of the heart to rule out defects) are also used to confirm causes of bronchopulmonary dysplasia.
(Information here was taken from http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/respire/cld.html and is for educational purposes. Always seek medical attention and advice when it comes to your health)
What causes chronic lung disease?
CLD results from lung injury to newborns who must use a mechanical ventilator and extra oxygen for breathing. The lungs of premature babies are fragile and are easily damaged. With injury, the tissues inside the lungs become inflamed and can break down causing scarring. This scarring can result in difficulty breathing and increased oxygen needs. Some of the causes of lung injury include the following:- prematurity - the lungs, especially the air sacs, are not fully developed
- low amounts of surfactant (a substance in the lungs that helps keep the tiny air sacs open)
- oxygen use (high concentrations of oxygen can damage the cells of the lungs)
- mechanical ventilation - the pressure of air from breathing machines, suctioning of the airways, use of an endotracheal tube (ET tube - a tube placed in the trachea and connected to a breathing machine)
Who is affected by chronic lung disease?
Chronic lung disease can develop in premature babies who have had mechanical ventilation (breathing machine). Risk factors for developing CLD include:- birth at less than 30 weeks gestation
- birth weight less than 1,000 (less than 2 pounds) to 1,500 grams (3 pounds 5 ounces)
- hyaline membrane disease - lung disease of prematurity due to lack of surfactant that does not show the usual improvement by the third or fourth day.
- pulmonary interstitial emphysema (PIE) - a problem in which air leaks out of the airways into the spaces between the small air sacs of the lungs.
- patent ductus arteriosus (PDA) - a connection between the blood vessels of the heart and lungs that does not close as it should after birth.
- premature Caucasian, male babies are at greater risk for developing BPD
- maternal womb infection (chorioamnionitis)
- a family history of asthma
- breathing problems at birth
- develop an infection during or shortly after birth
What are the symptoms of chronic lung disease?
The following are the most common symptoms of CLD. However, each baby may experience different symptoms of the condition. Symptoms may include:- respiratory distress (rapid breathing, flaring of the nostrils, grunting, chest retractions)
- continued need for mechanical ventilation or oxygen after a premature baby reaches 36 weeks gestation
How is chronic lung disease diagnosed?
Because CLD is a chronic disease and appears gradually, physicians must look at several factors. It is often diagnosed when a premature baby with respiratory problems continues to need additional oxygen after reaching 28 days old. Chest x-rays compared with previous x-rays may show changes in the appearance of the lungs. The x-ray of lungs with CLD often have a bubbly, sponge-like appearance. X-rays are diagnostic tests which use invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs onto film.Blood tests (test used to determine if enough oxygen is in the blood) and an echocardiography (test that use sound waves to create images of the heart to rule out defects) are also used to confirm causes of bronchopulmonary dysplasia.
Treatment of chronic lung disease:
Specific treatment for CLD will be determined by your baby's physician based on:- your baby's gestational age, overall health, and medical history
- extent of the disease
- your baby's tolerance for specific medications, procedures, or therapies
- expectations for the course of the disease
- your opinion or preference
- extra oxygen (to make up for the decreased breathing ability of the damaged lungs) and a pulse oximetry to measure how much oxygen is in the blood
- mechanical ventilation with gradual weaning as the baby's lungs grow and can do more of the work of breathing
- surfactant replacement
- medications such as:
- bronchodilators (to help open the airways)
- steroids (to help reduce inflammation)
- diuretics (to help reduce excess fluid in the lungs)
- antibiotics (to fight an infection)
- intravenous fluids and nutrition (to help the baby and the lungs grow). It is important to monitor the fluid intake, because excess fluids can build up in the lungs and worsen the infant's breathing ability.
- radiant warmers or incubators to keep the infant warm and decrease the risks of developing an infection
- nutrition (to help the baby and the lungs grow)
- immunization against lung infection by respiratory syncytial virus (RSV) and influenza
(Information here was taken from http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/respire/cld.html and is for educational purposes. Always seek medical attention and advice when it comes to your health)
Diaphragmatic Paralysis
I remember when I first heard that Liam's left diaphragm was paralyzed due to CDH and/or Repair. I was freaked out. I didn't know what to expect. The specialist would skate over the issue and just say that he would be ok but they'd keep an eye on him. When we found out that Liam also had a defect in his right diaphragm, therefor he was rediagnosed as bi-lateral CDH, they said they wouldn't touch it unless they absolutely had to because of his left diaphragm already being paralyzed. When you get the news sometimes the info goes in and right back out. So I researched it so that I could refresh my memory:
* Diaphragmatic paralysis, whether it occurs in one or both sides of the diaphragm, is uncommon.
*Whether the paralysis occurs in one (unilateral) or both (bilateral) sides of the diaphragm, all patients will experience some amount of reduction in lung capacity, particularly noticeable when lying down.
Liam's left diaphragm is paralyzed and due to that and pulmonary hypoplasia his left lung hardly functions. He requires daily breathing treatments to keep the lungs open. One treatment is a steroid.
There are many reasons Diaphragmatic Paralysis occurs but for CDHers its usually because:
*The phrenic nerve didn't fully develop or develop properly
*incurred surgical trauma
*They cannot risk his right diaphragm from becomming paralyzed because it will cause more lung issues than he already has. With him having Chronic Lung Disease his chances are lower of being able to breathe without a vent.
*Liam's body creates alot of scar tissue and because of all his surgeries his abdomen is full of scar tissue. Scar tissue if harder to heal and work with. Because of all the scar tissue they cannot do a plication laprascopically. They would have to open his chest cavity and that is a risk no surgeon wants to take.
* Diaphragmatic paralysis, whether it occurs in one or both sides of the diaphragm, is uncommon.
*Whether the paralysis occurs in one (unilateral) or both (bilateral) sides of the diaphragm, all patients will experience some amount of reduction in lung capacity, particularly noticeable when lying down.
Liam's left diaphragm is paralyzed and due to that and pulmonary hypoplasia his left lung hardly functions. He requires daily breathing treatments to keep the lungs open. One treatment is a steroid.
There are many reasons Diaphragmatic Paralysis occurs but for CDHers its usually because:
*The phrenic nerve didn't fully develop or develop properly
*incurred surgical trauma
Patients with diaphragmatic paralysis may
experience shortness of breath, headaches, blue lips and fingers,
fatigue, insomnia and overall breathing difficulty. Also:
- Unilateral diaphragmatic paralysis may go undiagnosed. Often patients compensate for the discomfort of reduced lung capacity by sleeping in a semi-upright position or reducing physical activity when there is shortness of breath.
- Bilateral diaphragmatic paralysis presents more severe symptoms, which leads patients to seek medical attention. The shortness of breath is more severe, even with mild exertion.
Newborns
and children with unilateral diaphragmatic paralysis may experience
more severe respiratory distress than an adult, due to weaker muscles
and a more compliant chest wall. The newborn may have a weak cry or show
signs of gastrointestinal distress, with frequent vomiting. Children
with bilateral diaphragmatic paralysis require immediate medical
attention and ventilator intervention because the condition can be life
threatening
The tools used to diagnose diaphragmatic paralysis include:
- Pulmonary function testing while lying down and again while upright. Lung capacity is often reduced about 10 percent when a person is lying down; patients with bilateral diaphragmatic paralysis may experience a 70 to 80 percent reduction in lung capacity while patients with unilateral diaphragmatic paralysis may experience a 50 percent reduction.
- Chest X-rays or an upright, inspiratory chest radiograph.
- A blood test to measure the amount of oxygen in the blood.
- Measuring transdiaphragmatic pressure and thickness.
- Phrenic nerve stimulation testing.
- Electromyography, a test that evaluates and records electrical activity produced by skeletal muscles.
- Computed tomography (CT) scanning of the thorax and/or abdomen.
- Magnetic resonance imaging (MRI) to determine if there is an underlying condition involving the spinal column or nerve roots.
- Ultrasound to see the activity of the diaphragm and to identify any unusual movement or lack of movement.
Treating Diaphragmatic Paralysis
Physicians
take into consideration the overall health of the patient, the severity
of symptoms as well as any underlying cause for the paralysis:
- Diaphragmatic plication, a surgical procedure that pulls the diaphragm down, is commonly used in patients with unilateral paralysis. The surgery allows the diaphragm to moves so as to expand better and improve ventilation. Patients with more severe symptoms, such as a respiratory infection, asthma or COPD (chronic obstructive pulmonary disease), can benefit from diaphragmatic plication.
- If the patient has no symptoms, or the symptoms are mild, and the patient is in otherwise good health, no treatment may be necessary.
- Breathing pacemakers may be used in patients who have functioning phrenic nerves, such as patients with ALS or spinal cord injury. The devices may result in improved respiratory function and lower infection rates.
- Thoracoscopic diaphragm plication may be an option for some patients, resulting in a shorter hospital stays than other techniques.
- In severe cases of patients on a ventilator due to bilateral diaphragmatic paralysis, the diaphragm might be plicated to help get patients off the ventilator.
- A tracheostomy, the surgical formation of an opening in the trachea, helps allow the passage of air. This approach is commonly used for patients with a life threatening disease or a diagnosis of high quadriplegia.
*They cannot risk his right diaphragm from becomming paralyzed because it will cause more lung issues than he already has. With him having Chronic Lung Disease his chances are lower of being able to breathe without a vent.
*Liam's body creates alot of scar tissue and because of all his surgeries his abdomen is full of scar tissue. Scar tissue if harder to heal and work with. Because of all the scar tissue they cannot do a plication laprascopically. They would have to open his chest cavity and that is a risk no surgeon wants to take.
Prognosis for Diaphragmatic Paralysis
The
prognosis for unilateral paralysis is quite good, providing there is no
underlying pulmonary disease. Sometimes, patients recover without any
medical intervention.The prognosis for bilateral paralysis also depends
on the overall health of the patient but surgery may be the best option
for patients who continue to have a poor quality of life.
(Follow the link to read the full article from Cedars Sinai http://www.cedars-sinai.edu/Patients/Health-Conditions/Paralyzed-Diaphragm-Diaphragmatic-Paralysis.aspx )
Thursday, May 9, 2013
Nayeli Faith Foundation
Do you live in California, have or expecting a baby with Congenital Diaphragmatic Hernia and are being treated at UCSF? Well the Nayeli Faith Foundation may be able to help you. They helped us.
Nayeli Faith Foundation Facebook Page: http://www.facebook.com/NayeliFaithFoundation
Website: http://nayelifaithfoundation.com/
Nayeli Faith Foundation was there for us when we needed
them. Our son had a follow up at UCSF (4 hours away from home) about a month
after being discharged from their NICU. Money was extremely tight and we weren’t
going to be able to make it. We contacted the Nayeli Faith Foundation as a last
resort and because of their generious help we were able to make it to the CDH
clinic. Without that clinic we wouldn’t have known our son Liam was Failure To
Thrive and needed a feeding tube. At least we wouldn’t have found out before
any real damage was done. We learned a lot there that we wouldn’t have known otherwise
and its all because Nayeli Faith Foundation helped us get there. They paid for
a hotel room so that we could stay overnight the night before, they helped with
food and gas. And they still keep track of Liam’s progress and ask how he’s
doing, and even ask how we are doing as his parents. They were a shoulder we
could lean on when we didn’t know anyone else out there with A CDHer. Ive recommended
them to many families in CA and will continue to do so.
-Aubin Bryant
Mom to Liam born 7/14/11 with bi-latteral CDH
Nayeli Faith Foundation Facebook Page: http://www.facebook.com/NayeliFaithFoundation
Website: http://nayelifaithfoundation.com/
Mommy and Me Contest
Let's kick of May with some fun! A mommy and me photo contest to celebrate all the moms out there. You do NOT have to have a CDHer to enter The contest. ANYONE can enter. You have to like out page though. Anyone can vote as well but only v...otes from those who like our page will count so make sure you let everyone know when you ask them to vote for you. Please submit your photos to us via fb message or email shootingforliam@yahoo.com and tell us about yourselves. Your names and anything else you'd like to share. Prize will be announced by the June 8TH. Deadlines have been extended. You have until May 20th to submit your photos and voting beings on the 21st.
Rules:
Pictures must be submitted by May 20th. Voting begins on May 21st. Only votes counted are those who like our Facebook page. To view the contest go to http://www.facebook.com/ShootingForLiam
To submit pictures you can message them to our Facebook page or email them to us shootingforliam@yahoo.com
Friday, April 19, 2013
What to expect when your expecting...A CDHer
What to expect when your expecting...A CDHer and Questions that we've been asked........
Weather your expecting a CDHer or taken by suprise when you give birth to one, the very first important bit of advice I can give you is....
Every CDHer is DIFFERENT
Weather your expecting a CDHer or taken by suprise when you give birth to one, the very first important bit of advice I can give you is....
Every CDHer is DIFFERENT
Don't campare your baby to another because theres nothing to say one baby is going to better than another based on the size of their defect. In some cases babies with bigger defects have done better than those with smaller defect, but that isnt always the case ofcourse.
No two babies are the same, and no two treatments are the same.
Treatments can and usually are very similar but things change depending on each baby.
How long can we expect to stay in NICU?
That all depends on your baby because every CDHer is different.
I had a nurse at UCSF tell me the shortest time they saw a CDHer stay in their NICU was 4 weeks.
But CDHers can stay for months and on tough cases possibly years.
While your sitting there at your babies side don't stress over how long you and your child are going to be there, but instead celebrate the milestones because I can promise you there will be many.
Celebrate the good blood gases.
Celebrate the length of time your baby can stay excubated instead of worrying that they had to be re-intubated.
It's the little things that will get you through your days.
Do I need to get rid of my animals because of my baby being born with CDH?
This is a question I see asked alot on many sites.
Our NICU nurses and Doctors as well as our Doctors and specialist at Childrens hospital told us that no we did NOT have to get rid of our animals because our son Liam was born with CDH.
Infact they said that growing up with animals, instead of sheltering them would decrease their chances of being allergic to the animals later on in life.
As long as our son didn't have any allergic reactions to our cats we were cleared to keep them.
Of course we kept the cats away from him when he was a baby because cats hair can get into the babies nose and end up suffocating them. We also made sure to vaccume on a daily basis to help keep cat hair and dander down. Keeping your animals brushed and bathed reqularly can help.
Liam is 21 months and has Chronic Lung Disease and we had two cats at the time (1 as of a year ago) and he had no problems. Now he even pets our cat. Their very close actually. We also have an outside rabbit and an outside dog. Liam will sit at the back screen door and play with the dog through the screen. The only reason The dont get to play together except once is because the dog is a jumper and I don't want Liam hurt. Liams Uncle and Tia have a inside/outside cat and outside dog and he's also good with those animal. No respitory problems after being around them or allergy issues. Their dog is a chow and has really thick long hair too and its not a problem.
Every case is different and it doesn't hurt to ask your doctors. The Pulmonologist and the CDH specialist would probably be the best to ask. Keep in mind each doctor does things differently so just because we were told it was ok to keep our animals doesnt neccessarily mean you'll get the same answer.
I know many CDH families who have animals and only one that I have followed had to keep their animals away from their child and slowly introduce the animals back into the home after the baby got older.
Animals and tubing:
Weather feeding tube or oxygen or any other tunes and wires the main thing you need to watch with animals is that they like to play with it. Any sudden movement in tubing can rile up a cat and make them think its a play toy. With dogs, watch for the chewing on tubing. One time we let the dog in the house and Liam was in the livingroom and I cought the dog with the feeding oxygen tubing in his mouth. That was the last time he
was allowed in the house.
What should I pack for my baby?
Its hard to know what to pack when you don't know what to expect. My son was at UCSF a hospital 4 hours away from home in a city I knew nothing about. I didn't know what to expect or what to pack so I ended up packing alot of things that I had to send back home with my husband.
When a baby is in NICU theres no alot of things they can use or need at first.
They allow your baby to wear socks, mittens, diaper and sometimes a hat.
Tip: socks work way better than mittens on their little hands and because socks are longer they can be
pulled up to cover most the babies arm to help keep them warm.
They usually always allow a small stuffed animal to stay at their bedside.
As your baby is allowed to wake up and gets moved to a crib they'll need toys and things to help stimulate their minds like:
Crib mirror, mobile, toys that can be hung on the side of the crib.
We hung a bright colored blanket that have dinosuars and was very colorful on the side of our sons crib for stimulation. It also sort of seperated him from the rest of NICU by doing this.
By the time they get into a reqular crib they will be allowed to wear clothing.
Onsies and tshirts are the best because then the nurses can still access everything without having to undress the baby. You'll also be able to bring in babies own blankets too.
If your like me staying a long way away from home,
id recommend packing your baby atleast 12 pairs of socks because they'll be used on their hands as well and you dont want to have to be doing laundry all the time. I know Liam went through atleast 12 pairs of socks a week. You'll only need 2 maybe 3 hats to start off with.
Tips on what to pack for yourself:
Besides the normal clothes and toiletries I suggest a device that can go online:
Ipod, Kindle, mini Computer.
You'll want something you can use to keep your family and friends updated on your sweet baby. Blogging and opening and starting a FB page for your little one are good ideas.
You'll want to take pictures daily but beware of using the flash. There are alot of babies in NICU and all need to rest and be undisturbed and a flash can bother them, including your baby.
A book is always great to keep with you, or if your divice reads ebooks thats even better.
If your not wanting to blog all your feeling and share with the world a paper journal and pen would be great. Lots goes on everyday and it can be hard to short through your thoughts and feelings. Having a place you can write them down can also help you work through them as well as have a keepsake for your baby to read when they get older. It'll show them that yes it was a tough struggle and an emotional rollercoaster but if you can survive that you can survive anything.
It can be cold in the hospital so keeping a sweater with you in ideal.
Beverages without lids arent allowed in NICU so you'll want to use a reusable water bottle.
When did your CDH start walking?
This question seems to be one of concern for alot of parents and the answers vary.
Liam is 21 months old. He just started standing a few months ago and recently without assistance.
With the help of IFO's he is able to take a few steps at a time.
The most he's every taken was 19 but his normal is 8 steps.
Liam's feet outtoe and his arch is weak and colapse causing him to be unable to stand or walk on his own very well. The IFO's help him stand and take steps.
He's had IFO's for a month and a half and still doesn't walk for long periods.
I've read about CDHers walking around 8 months old and others not till age 1 or 2.
These babies tend to be physically behind from all the hoapital stays they endure and all the medical issues they have. Each child is different though.
Have you ever been told that their CDH baby can go into respiratory failure if allowed to cry too long/hard? I was told when we left NICU not to let Liam cry for extended periods of time because they could reherniate. I was also told that yes its good for their lungs to cry but not to over-do it because it could cause damage to his lungs.
I've read where some were never told this and others were told the more the baby cries the better to excersize those lungs and keep them open.
Now that my son is bigger the RT's love it when he cries because it does help open his lungs, which is what we want because of all his lung issues.
That in mind, we also give Chest PT daily during his breating treatments.
If your baby reherniates theyre going to have respitory distress because of the pressure on their lungs and the fact that the diaphragm is designed to help the lungs retracked but cant do its job when its herniated.
Q: I have been following Liam's journey since my son was diagnosed with CDH inutero in Dec 2011. I have followed your ups and downs with Liam's feeding and am pretty worried we are gonne be on the same journey. We have a GJtube placed tomarrow at 9a instead of his Gtube. I would like any advice on how to care for a GJ that you could give me.
A: Feeding tubes can be over whelming at first. When Liam came out of surgery for a Gtube I was petrified to hold him because I thought Id hurt him. It took me weeks to realize I could hold him like a normal baby. And when it came time he did pull out the tube, he acted like nothing happened.
*As for care: keep the site cleam. Use a wet wash cloth to clean the area and keep it as dry as you can. Our medical supply CO provides us with split 2x2 guaze to use around the tube but I found that they don't work very well. They didn't soak up all the leaking fluid and the pad itself would be drenched in no time. The guaze had to be changed every few hours or they would just contribute to irritating the skin. I ordered a few Gtube pads a few weeks ago and within 2 days I saw a HUGE improvement. Check out Sew Amazing Creations. She makes really awesome tube pads at the cheapest price on the market. Only $1 per pad! http://www.facebook.com/SewAmazingCreations
*The most imortant thing with a GJtube is that you do NOT want it to spin. If it spins the J port could back out of the intestines into the stomach defeating the purpose of the GJ. Again the best thing I found to keep this from happening is the Gtube pads.
*Keeping your child from pulling out tube is a challenge but it is possible. We used to think a onsie would prevent Liam from pulling out his tube but last August we learned how very wrong we were. He was able to pull it out right with no problem whatsoever. Tummy belts or an ace bandage work excelent in helping keeping that tubie in.
*Pump feeding and mobility are a daily issue when you have an active one like Liam who just cant sit still. We figured out that we can put the pump and bag into its portable backpack and strap it to his walker allowing him to roam the house at his pleasure. Allowing him to free roam and crawl around without getting too far away from the pump is an issue. We have to just watch him and keep him near the pump or follow him around with the pump. As he's getting older we've noticed that he somtimes listens when we tell him to stop as he's crawling too far away but he also loves to ignore people. The other thing we've notices that when he's getting too far away and it pulls the tube just slightly he feels it and stops himself from going further away. He knows he doesnt like the pain. I think that as they get older it gets easier on everyone.
Q: My son has had a Gtube since July. We have had nothing but problems with it since his 6 week post op appointment. It has leaked, his skin is being eaten. They want to put in a GJ in cause he's throwing up past his Nissin and is failure to thrive.
A: Thats how Liam is. His tube leaks all the time. The Gtube pads are the best thing Ive found. They are thick so they pull the tube taunt against the inside preventing fluid from leaking through. Thats something the guaze doesn't do. We've tried all kinds of creams the GI prescribed but the best thing was to keep it dry.
Q: What problems have you had with the GJtube?
A: The main issue is that for some reason his GJtube actually desinigrates. The ports pop out because of this and his J port line has gotten clogged many times. We're not sure if its Liam or the way these tubes are made. Theres nothing we can do to prevent the tube system from falling apart but we can prevent it from getting clogged. Once a week we have to use soda, we use Pepsi but you can use Coke, to clean the Jport. We use 6 to 8 mls of soda, inject it into the J extension then let it set for atleast 15 to 20 minutes. Then we can go back to using it as normal. These are orders via our GI. Because its such a small amount it won't hurt him. And Ive monitored him after and theres no hyperness are anything else we've noticed after the soda gets into his system.
Do I need to get rid of my animals because of my baby being born with CDH?
This is a question I see asked alot on many sites.
Our NICU nurses and Doctors as well as our Doctors and specialist at Childrens hospital told us that no we did NOT have to get rid of our animals because our son Liam was born with CDH.
Infact they said that growing up with animals, instead of sheltering them would decrease their chances of being allergic to the animals later on in life.
As long as our son didn't have any allergic reactions to our cats we were cleared to keep them.
Of course we kept the cats away from him when he was a baby because cats hair can get into the babies nose and end up suffocating them. We also made sure to vaccume on a daily basis to help keep cat hair and dander down. Keeping your animals brushed and bathed reqularly can help.
Liam is 21 months and has Chronic Lung Disease and we had two cats at the time (1 as of a year ago) and he had no problems. Now he even pets our cat. Their very close actually. We also have an outside rabbit and an outside dog. Liam will sit at the back screen door and play with the dog through the screen. The only reason The dont get to play together except once is because the dog is a jumper and I don't want Liam hurt. Liams Uncle and Tia have a inside/outside cat and outside dog and he's also good with those animal. No respitory problems after being around them or allergy issues. Their dog is a chow and has really thick long hair too and its not a problem.
Every case is different and it doesn't hurt to ask your doctors. The Pulmonologist and the CDH specialist would probably be the best to ask. Keep in mind each doctor does things differently so just because we were told it was ok to keep our animals doesnt neccessarily mean you'll get the same answer.
I know many CDH families who have animals and only one that I have followed had to keep their animals away from their child and slowly introduce the animals back into the home after the baby got older.
Animals and tubing:
Weather feeding tube or oxygen or any other tunes and wires the main thing you need to watch with animals is that they like to play with it. Any sudden movement in tubing can rile up a cat and make them think its a play toy. With dogs, watch for the chewing on tubing. One time we let the dog in the house and Liam was in the livingroom and I cought the dog with the feeding oxygen tubing in his mouth. That was the last time he
was allowed in the house.
What should I pack for my baby?
Its hard to know what to pack when you don't know what to expect. My son was at UCSF a hospital 4 hours away from home in a city I knew nothing about. I didn't know what to expect or what to pack so I ended up packing alot of things that I had to send back home with my husband.
When a baby is in NICU theres no alot of things they can use or need at first.
They allow your baby to wear socks, mittens, diaper and sometimes a hat.
Tip: socks work way better than mittens on their little hands and because socks are longer they can be
pulled up to cover most the babies arm to help keep them warm.
They usually always allow a small stuffed animal to stay at their bedside.
As your baby is allowed to wake up and gets moved to a crib they'll need toys and things to help stimulate their minds like:
Crib mirror, mobile, toys that can be hung on the side of the crib.
We hung a bright colored blanket that have dinosuars and was very colorful on the side of our sons crib for stimulation. It also sort of seperated him from the rest of NICU by doing this.
By the time they get into a reqular crib they will be allowed to wear clothing.
Onsies and tshirts are the best because then the nurses can still access everything without having to undress the baby. You'll also be able to bring in babies own blankets too.
If your like me staying a long way away from home,
id recommend packing your baby atleast 12 pairs of socks because they'll be used on their hands as well and you dont want to have to be doing laundry all the time. I know Liam went through atleast 12 pairs of socks a week. You'll only need 2 maybe 3 hats to start off with.
Tips on what to pack for yourself:
Besides the normal clothes and toiletries I suggest a device that can go online:
Ipod, Kindle, mini Computer.
You'll want something you can use to keep your family and friends updated on your sweet baby. Blogging and opening and starting a FB page for your little one are good ideas.
You'll want to take pictures daily but beware of using the flash. There are alot of babies in NICU and all need to rest and be undisturbed and a flash can bother them, including your baby.
A book is always great to keep with you, or if your divice reads ebooks thats even better.
If your not wanting to blog all your feeling and share with the world a paper journal and pen would be great. Lots goes on everyday and it can be hard to short through your thoughts and feelings. Having a place you can write them down can also help you work through them as well as have a keepsake for your baby to read when they get older. It'll show them that yes it was a tough struggle and an emotional rollercoaster but if you can survive that you can survive anything.
It can be cold in the hospital so keeping a sweater with you in ideal.
Beverages without lids arent allowed in NICU so you'll want to use a reusable water bottle.
When did your CDH start walking?
This question seems to be one of concern for alot of parents and the answers vary.
Liam is 21 months old. He just started standing a few months ago and recently without assistance.
With the help of IFO's he is able to take a few steps at a time.
The most he's every taken was 19 but his normal is 8 steps.
Liam's feet outtoe and his arch is weak and colapse causing him to be unable to stand or walk on his own very well. The IFO's help him stand and take steps.
He's had IFO's for a month and a half and still doesn't walk for long periods.
I've read about CDHers walking around 8 months old and others not till age 1 or 2.
These babies tend to be physically behind from all the hoapital stays they endure and all the medical issues they have. Each child is different though.
Have you ever been told that their CDH baby can go into respiratory failure if allowed to cry too long/hard? I was told when we left NICU not to let Liam cry for extended periods of time because they could reherniate. I was also told that yes its good for their lungs to cry but not to over-do it because it could cause damage to his lungs.
I've read where some were never told this and others were told the more the baby cries the better to excersize those lungs and keep them open.
Now that my son is bigger the RT's love it when he cries because it does help open his lungs, which is what we want because of all his lung issues.
That in mind, we also give Chest PT daily during his breating treatments.
If your baby reherniates theyre going to have respitory distress because of the pressure on their lungs and the fact that the diaphragm is designed to help the lungs retracked but cant do its job when its herniated.
Q: I have been following Liam's journey since my son was diagnosed with CDH inutero in Dec 2011. I have followed your ups and downs with Liam's feeding and am pretty worried we are gonne be on the same journey. We have a GJtube placed tomarrow at 9a instead of his Gtube. I would like any advice on how to care for a GJ that you could give me.
A: Feeding tubes can be over whelming at first. When Liam came out of surgery for a Gtube I was petrified to hold him because I thought Id hurt him. It took me weeks to realize I could hold him like a normal baby. And when it came time he did pull out the tube, he acted like nothing happened.
*As for care: keep the site cleam. Use a wet wash cloth to clean the area and keep it as dry as you can. Our medical supply CO provides us with split 2x2 guaze to use around the tube but I found that they don't work very well. They didn't soak up all the leaking fluid and the pad itself would be drenched in no time. The guaze had to be changed every few hours or they would just contribute to irritating the skin. I ordered a few Gtube pads a few weeks ago and within 2 days I saw a HUGE improvement. Check out Sew Amazing Creations. She makes really awesome tube pads at the cheapest price on the market. Only $1 per pad! http://www.facebook.com/SewAmazingCreations
*The most imortant thing with a GJtube is that you do NOT want it to spin. If it spins the J port could back out of the intestines into the stomach defeating the purpose of the GJ. Again the best thing I found to keep this from happening is the Gtube pads.
*Keeping your child from pulling out tube is a challenge but it is possible. We used to think a onsie would prevent Liam from pulling out his tube but last August we learned how very wrong we were. He was able to pull it out right with no problem whatsoever. Tummy belts or an ace bandage work excelent in helping keeping that tubie in.
*Pump feeding and mobility are a daily issue when you have an active one like Liam who just cant sit still. We figured out that we can put the pump and bag into its portable backpack and strap it to his walker allowing him to roam the house at his pleasure. Allowing him to free roam and crawl around without getting too far away from the pump is an issue. We have to just watch him and keep him near the pump or follow him around with the pump. As he's getting older we've noticed that he somtimes listens when we tell him to stop as he's crawling too far away but he also loves to ignore people. The other thing we've notices that when he's getting too far away and it pulls the tube just slightly he feels it and stops himself from going further away. He knows he doesnt like the pain. I think that as they get older it gets easier on everyone.
Q: My son has had a Gtube since July. We have had nothing but problems with it since his 6 week post op appointment. It has leaked, his skin is being eaten. They want to put in a GJ in cause he's throwing up past his Nissin and is failure to thrive.
A: Thats how Liam is. His tube leaks all the time. The Gtube pads are the best thing Ive found. They are thick so they pull the tube taunt against the inside preventing fluid from leaking through. Thats something the guaze doesn't do. We've tried all kinds of creams the GI prescribed but the best thing was to keep it dry.
Q: What problems have you had with the GJtube?
A: The main issue is that for some reason his GJtube actually desinigrates. The ports pop out because of this and his J port line has gotten clogged many times. We're not sure if its Liam or the way these tubes are made. Theres nothing we can do to prevent the tube system from falling apart but we can prevent it from getting clogged. Once a week we have to use soda, we use Pepsi but you can use Coke, to clean the Jport. We use 6 to 8 mls of soda, inject it into the J extension then let it set for atleast 15 to 20 minutes. Then we can go back to using it as normal. These are orders via our GI. Because its such a small amount it won't hurt him. And Ive monitored him after and theres no hyperness are anything else we've noticed after the soda gets into his system.
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