Jaxson's Blankies for Babes

Meet Celia

2011-10-26T08:23:00.000-07:00

Born March 7, 2007, Celia appeared to be a healthy little girl – she developed normally beyond her first birthday, waving and saying “hi” and learning to use a fork and taking steps… but we noticed (more than two years ago now) when Cel was about 15 months old, her skills had plateaued, and she was regressing. She stopped using any of the words she’d acquired; eventually she stopped trying to walk. Developmental Specialists at Nationwide Children’s Hospital ordered an MRI and found abnormalities in her brain, but no one could tell us why. Celia stopped sleeping well about that same time, waking 20 times or more each night. An EEG revealed myoclonic seizures (small single jerks, that we weren’t able to notice) were likely waking her. Celia lost the ability to feed herself and her vision became limited. We visited lots of specialists and Celia’s neurologist ordered lots of tests; after months of searching for a diagnosis, it was determined in January 2009, shortly before her second birthday, that Celia has NCL1 -- infantile neuronal ceriod lipofuscinosis, an autosomal recessive disorder more commonly known as Batten Disease. Afflicted children have an enzyme deficiency that causes neurodegeneration. Batten Disease is rare, about 2 in 100,000, and there are only about 150 children living with it in the US. Sadly, families may have more than one affected child. At this time NCL is always fatal, so we were relieved to learn that Celia’s little brother, Tucker, does not have Batten Disease. Children with the disease suffer mental impairment, worsening seizures, and progressive loss of vision and motor skills; most do not survive beyond their first decade.
Celia takes lots of medicine, her food has to be pureed, and she is no longer able to drink even thickened liquids. She used to enjoy Baby Einstein DVDs and Justin Roberts’ music, but those things don’t calm her the way they once did. She still enjoys an occasional stroller ride around our neighborhood, and a dip in her grandparent’s hot tub once in awhile, but her favorite thing to do is to snuggle on someone’s lap and rest. She lacks any purposeful movement, her fight to crawl now a distant memory, although we enjoy watching her stretch and yawn when she wakes up. She sleeps much of the day, but she smiles a lot more, too. We cherish her, and the time we have left.

Meet Gabriel

2011-09-15T08:34:00.001-07:00

Gabriels story starts before he was born. My 19 week ultrasound was picture perfect and I also declined all early testing. Then at 31 weeks (the day after Christmas) we got horriable news. There was concern. The concern was not for Down Syndrome but for T-18 (among other things), which is fatal. They told us he probally would not make it to birth and to prepare for the worst. That is when we asked for the sex and named him. We grieved, cried and told Gabriels older siblings/family. On Jan. 9 at 33 weeks to the day My water broke. Gabriel was born later that night by csection, Jan 9, 2009. I was told I would not get to see him and I didn't. He was whisked away. At the wee hours of the night I was wheeled in to see him. That night we were told of the possiably he had Down Syndrome. As many babies in the NICu he had many trials. On March 9, (one week after his due date he was trached and gtubed. That still didn't fix things and so the vent was added weeks later. After 5 months in the NICU he came home. Then in Jan 2010 just days after turning 1 we learned he had AML M-7 Leukemia. One week later he was admitted to the PICU (as he was on the vent) and started chemo the next day. After round 2 things went horriably wrong. He got sick and sick fast. First the temp, blood infection, septic, systems shuting down, could not control body temp and his lungs where filled with fluid (Acute repitory distress syndrome.) He was placed in a medical come, on the oscillator, nitric and 13 med pumps. That first weekend they bagged him multiple times and docs went over our last stopping point for Gabe. After 31 days he went back on the convential vent and the weaning of his meds began. This is when a friend of mine put me in contact with Lacey - as Jax and Gabe are alot alike. We went home from the PICU after 4 months and only 2 out of the 6 chemos done. Doctors and us agreed any more chemo would Kill him. We also left knowing if it comes back no more can be done. A year and a half later the remisson holds and many hospital stays since. Gabrielnow plays with his new blanket for Jax and Lacey at home. Believe it or not this is the short version!!!!

Blankies are on their way.

2011-08-28T18:49:00.001-07:00

I'm ever so slowly getting this started back up again.
4 blankies have been sent and probably received. Just waiting for pictures!

I just realized that all blankie requests that were made before we went to Ukraine last September, have been lost. I had printed them all out, and they have disapeared, and now disappeared from the computer as well. If you made the request after I started up again, your fine!
I'm so sorry if your blankie request was lost. Feel free to do another request. Its been slow going, house is now under contract, and probably moving in a few weeks. I just pray that when life settles again we'll be up and running smoothly again!!

Bear with me some more please!

We're back

2011-02-11T08:19:00.000-08:00

I took a much longer than expected break, but I'm getting started on blankies again. I have some that I need to get finished, but if your child needs a blankie, fill out a request form on the sidebar.

Its nice to be back!

Taking time off

2010-09-06T20:58:00.000-07:00

Blankie friends, we will not be making blankies from now until the beginning of November. We are traveling in a few short weeks to Ukraine, and will be there for up to 5 weeks. I have a few blankies I'm working on getting sent out, but I'm not starting anything new until I get back. I'm sorry if you have a request in and I haven't gotten to it yet. I'll get to it as soon as we get back. You can still request a blankie, it just won't get started until after November. Thanks for understanding! Lacey

Meet Eloise!

2010-07-22T09:30:00.000-07:00

Eloise was born at 32 weeks but she had no problems from her prematurity as she was well developed and a good weight.She thrived and was a happy sweet little girl.
April 2002 at 20 mths old she had hand , foot and mouth virus but was not unwell with it. On the 23rd May 2002 she became unwell, breathless,blue tinge around her mouth, vomiting, constipation so I took her to hospital expecting her to have a chest infection. Her initial observations were normal so she was sent for a chest x-ray. That x-ray told the truth my babies heart was severely enlarged she had cardiomyopathy and an ECHO showed only 30% of her heart was functioning. She was a very sick little girl who went straight to paediatric intensive care and was put an a ventilator.Eloise's life hung in the balance for 3 weeks , she was very unstable and needed a heart transplant urgently. 5 days after going on the transplant list Eloise received her gift of life a new heart.
The last few years have been tough at times, but Eloise has had a healthy good quality of life and has a lot of fun. She doesn't like needles....who does but is a brave little girl. I am so proud of Eloise , she's 9 years old now 8 years post transplant. Only 50% of children survive 10 years but my little girl will defy all the odds and statistics.

Meet Annabel

2010-07-14T07:26:00.000-07:00

Our daughter Annabel Leigh was diagnosed with Trisomy 18 (Edwards Syndrome) 4 days after her birth. Annabel is almost fifteen months old and each day with her is truly a blessing. Please feel free to read more about Annabel's journey via her blog: http://www.sweet-annabel-leigh.blogspot.com/

Meet Nathan

2010-06-21T20:30:00.000-07:00

After a normal pregnancy Nathan was born and had a an epileptic seizure shortly after. This led professionals to do extensive tests on him and to this day we have not got any answers or diagnosis for his problems. He is now 5 years old and has severe epilepsy, a movement disorder (no voluntary movement), visual impairment, reflux and is fed by gastrostomy tube. He is unable to sit, stand, walk or talk. His life expectancy was age 2 but he is now 5 and is very healthy and happy and proving to everyone that he has a lot of fight left in him. Although Nathan is unable to do anything for himself he is happy, content and very much loved by everyone around him. Thank you so much for his blankie, such a lovely idea and it has been very well received and is much appreciated.

Meet Jacob

2010-06-21T20:25:00.001-07:00

Jacob is a 4-year old boy with a mitochondrial disorder, severe epilepsy, global developmental delays, aspiration, low muscle tone, and many other diagnoses. Despite all the battles, Jacob is a very happy, strong little boy. He is an unbelievable fighter. Last year, we thought we would loose him twice, but he fought through each time. Jacob loves playing in the water, going to school, and being with his family especially his sister!

If you want to know more about Jacob, you can go to www.caringbridge.org/visit/jacobhallberg

Meet Sophie

2010-05-12T08:14:00.000-07:00

Sophie, arrived on her due date, the 21st June 2007. My pregnancy was uncomplicated and Sophie appeared healthy, scoring 9/10 on her Apgar scores. We took her home the following day, the proudest parents in the world. As the weeks passed and we adjusted to our new family member and enjoyed getting to know Sophie and watching her develop. Sophie was around three months of age when she began to squeak when she breathed and struggled to feed - She would suck and suck on a bottle but the milk would not go down. Sophie was then transferred to St Georges Hospital for what would be the start of a rollercoaster ride of highs and lows. Tests eventually showed that she has mitochondrial disease which means that her body is unable to convert food and oxygen into energy. We don’t have an exact diagnosis for Sophie but we do know that she is suffering from a very severe form of the disorder, possibly one that had never been seen before; there is no cure and her prognosis is poor.

Sophie has defied the odds and is now 2 years old. She is still very floppy, her muscles are extremely weak and she cannot swallow. The disorder has affected her respiratory muscles so she has a tracheostomy which is connected to a ventilator to help her breathe. She also has high blood pressure and suffers from reflux, temperature regulation and sweating issues. Despite her problems she remains a bright, alert and sociable little girl who develops in her own way each week. Best of all she loves interacting with people and is never happier than when ‘chatting’ to people who ‘chat’ back! She also loves getting out and about, playing games on the computer and cuddles.

We don’t know how long Sophie will be in our lives for but we always remember that 'where there is life there is hope' and 'the only thing worse than false hope is no hope'. We always recite the quote ‘that which does not kill me makes me stronger’ and it helps him through the difficult times. We will never give up hope of seeing a miracle happen and for as long as Sophie is here we will love her as much as we can and make everyday count.

Sophie is a very special little girl and we are so grateful to be able to spend this time with her, we love her dearly and we really are the proudest parents in the world.

You can read more about Sophie on her website: www.thesophiestory.co.uk

Meet Caitlin

2010-05-12T08:09:00.000-07:00

Caitlin is now 8 yrs old, but when she was 3 she became suddenly very ill with Pneumonia, we found she was malnourished due to her body not absorbing fat, and she had a heart block, in hospital they discovered that she had liver disease and cystic fibrosis. We nearly lost her at one point and if it wasnt for the excellent team of nhs nurses and doctors she wouldnt be here now. he had to have a nasal gastric tube in and was fed overnight for 6 months.

Cystic fibrosis affects the lungs and other major organs in the body, it clogs them with a sticky mucus and affects her pancreas so her body does not absorb fat, so she takes Creon before eating or drinking anything containing fat, pretty much everything except sweets, fruit and veg.
because of this her weight is always an issue too trying to get 2,500 calories into a child a day isnt easy.
Caitlin frequently has chest and lung infections to fight off, and often has to have iv antibiotics to try and clear them. ItS hard as she misses alot of school due to illness or hospital appointments, and she loves school.
A regular daily routine of physio twice a day, about 15 tablets and her 20 creon with her food is the norm.
Unfortunatly she has liver disease and cf itelf is progressive, and there is no cure the average age is 35.
Fortunatly caitlin is fairly well at the moment, but has been having iv antibiotics every 3 months as well as oral ones to combat frequent infections.
still as a family we remain positive and give caitlin the best that we can and try to treat her as a normal child of her age.

Meet Adam

2010-03-24T07:49:00.001-07:00

Adam was born full term. The sonagram tech said she belives there is something wrong with his heart when I was 5 months pregnant. So she told the doctor what she seen and he told me that the radiologist is going to read the sonagram to determine if something was wrong. The radiologist said there is nothing wrong and he was healthy. Well little did I know that there was something wrong with his heart. He has Tricuspid Atersia, an ASD, a VSD and TGA. He had his first open heart surgery last year and he is due for another open heart surgery this year in May or June.

Meet Isabella

2010-03-24T07:46:00.000-07:00

Isabella was born on April 27, 2009. She was a very healthy 9lbs 5 oz., came out screaming and scored perfect on her Apgars! Over the next few month's Isabella was constantly getting sick. On December 2, 2009 she was hospitalized for severe dehydration following a long illness. They started testing on her to rule out pneumonia. After her first Xray Isabella fell unconscious. It took several nurses and doctor's to wake her. And as they did they informed me they found a large Mass in her lungs. After a cat-scan, she was diagnosed with right sided CDH. She needed surgery. She continued to get sick, and the surgeries were put off over and over. Finally on Feb. 1 she had a hernia repair. When the doctor was performing her surgery he found she had a hiatal hernia, no a diaphragmatic. It was repaired, and after 5 very long hours we were able to hold our baby. The following day the doctor wanted follow up Xrays. They found out she herniated again, and needed another surgery ASAP. Her stomach had re-entered her lung cavity. We had to go through another surgery, which took much longer than expected. She came home from the hospital a short while later, and was doing great! A few days later, she fell very ill again. She was rushed to the hospital via ambulance, because we once again found her unconscious. At this point seizure's have been ruled out- but there may be an underlying heart issue. We are still unsure. She is amazing. She is the happiest, most loving baby I've ever laid eyes on. She touches the soul of everyone she meets, she's truly an angel.

Meet Megan

2010-02-18T08:18:00.000-08:00

Megan was diagnosed with Neuroblastoma stage 4 when she was just 6 months old. We couldnt have been more shocked when we heard the devestating news. Megan had to endure 6 months of gruelling chemotherapy followed by surgery to remove the tumour. Unfortunately her tumour was wrapped around her spine/Aorta and permanent damage had already been done to her spinal cord. We were told Megan showed no evidence of Neuroblastoma in April 2004, this was the best news. Unfortunately we were told Megans spinal cord had been damaged and she would never be able to walk.

Megan is now nearly 7 years old and has a string of Neuroblastoma related problems. She is paraplegic, has neuropathic bowell and bladder and also severe scoliosis. When she was 3 she had to have metal rods inserted into her spine to try and keep her spinal curve straighter. She has to have spinal surgery every 6-9 months to lengthen the rods as she grows. When she is about 12 she will have her spine fused. She copes with everything really well and always manages to smile. Life is tough for her but she is a fighter.

Meet Makenzie

2010-02-16T08:01:00.001-08:00

On March 25, 2007 our family's life would change in the blink of eye! As I went to put Makenzie in the car she reached down and grabbed a Red colored Goldfish cracker out of her car seat. Makenzie hated to be in her car seat and began to cry. When she opened her mouth I saw the cracker but it was too late. One gasp and she wasn't breathing. As my whole family stood in the parking lot our little princess was dying. After performing the Heimlich unsuccessfully, I got on the phone with 911 and rushed her into the store. As soon as I hit the door she went limp in my arms. As my husband and the people in the store tried to help our daughter I stood out side of the store banging my head pleading with God not to take my baby away from me... He didn't!

The paramedics arrived, got a airway and rushed her to the nearest hospital. When we got there we found her on a vent and totally unresponsive. She was then airlifted to another hospital more equipped to help her. After a week on the vent and sedated she was breathing on her own but still in a coma. We received MRI results stating that Makenzie had a very serious global Brain injury. She was then transferred to Children Hospital where we spent 5.5 weeks in a rehab program before we got to take her home.

When we took Makenzie home she cried EVERY waking moment of every day! She did not sit, eat, talk, walk, crawl, smile, laugh, see, or hear. She was fed through a tube in her stomach and didn't respond to anything!

We have spent the last 3 years fighting with her and for her. We have done many conventional and unconventional therapies. Today Makenzie has come a long way but has a long way to go! She can see, hear, smile, laugh, she loves her brothers, playing peek-a-boo, standing in her walker, she can roll over on her own sometimes, she is getting close to sitting, and the list goes on!

With God's Grace Makenzie will continue to heal. We have Hope for the future and are so proud of Makenzie for never giving up! Keep Fighting Baby Girl.

Meet Annabel

2010-02-14T19:28:00.000-08:00

Annabel was diagnosed after birth with full Trisomy 18. I received the phone call from the doctor and was told she could not and would not survive. She is now 4 1/2 and is such a little fighter. Beside the Trisomy 18 she experiences Grade V reflux from bladder to kidney which has surgically been repaired. She also has a neurogenic bladder/bowel which creates the need to help her by cathing her and using large doses of laxatives. She has a large VSD and all her valve are affected in some way but she has not had heart surgery as of yet. She suffers from multiple GI issues from almost no motility, not able to process sugars and very low muscle one. She was bottle fed until she was 3 years old. She had a g-tube placed to receive her liquids. She ate by spoon until recently. They have removed her from all oral feed now and will have all her feed through her button.
She is in the early stages of pulmonary hypertension, suffers from obstructive and central sleep apnea. She has to sleep on oxygen/bi-pap.
She is so full of personalilty and is the joy of our lives. God continues to bless us each day through Annabel.

Meet Rebekah

2010-01-22T15:04:00.000-08:00

Rebekah was diagnosed with Truncus arteriosus at our 20 week ultrasound. We found out after birth that she was missing her right pulmonary artery. Rebekah was also found to have velocardiofacial syndrome (digeorge syndrome) and as a result has immune disorders, developmental delays and hypocalcemia. Ten days after birth she underwent her first open heart surgery. We were able to take her home one month after her birth. It is projected that she will have her main repair in January or Febuary.

Meet Owen

2010-01-15T15:10:00.000-08:00

Owen was born hypotonic after a normal pregnancy and delivery. He continued to develop normally until age 4 months when he stopped developing in every way a baby his age would develop. The pediatrican was hesitant to diagnose him and instead opted to wait to see if his condition improved. It did not and by 8 months old he was clearly delayed. He could not smile, hold his head up, sit, roll, and he did not appear to be much aware of his surroundings. I, as his mother, pressed for a Lyme Disease test for him and the whole family as I had been bitten by a Lyme-infested tick as a 17 year old but was later told that there was a chance that this illness could become chronic and could be passed on to one's children. All 6 of us in our family's blood results were positive for the Lyme bacteria. Owen then had a brain MRI performed at 11 months which showed neuromigrational disorder and moderate brain malformation. He was then diagnosed with Lissencephaly, Lyme Disease secondary, but probably the cause of his neurological illness, in utero as an infection. Lissencephaly means "smooth brain" and clinically means seizures, shortened lifespan, breathing problems, and general development not passed 2-3 month old. Owen has done so much more than the MDs thought he would ever do. Owen has since been on antibiotics and has made much improvement, he can sit up, roll over, and is very interactive and responsive to others and his environment, giggling, holding objects, attempting to feed himself, enjoying his baby einstein videos, cooing. The brain malformation is permanent but with proper physical therapy and Lyme Disease treatment, his prognosis for working around his brain impairments are fairly good. He is now 18 months old and is functioning at a 10 month old level.

Meet Ashton

2010-01-06T20:12:00.000-08:00

Thank you so much for the blankie. It came at the perfect time. Ashton is in the hospital with RSV and he loves holding the blankie!

Ashton was born on September 1, 2009. He has been through a lot in just a short time. Ashton was born with a duodenal atresia that had to be repaired at birth. Two days later there was a leak at the repaired site so he had to be rushed into surgery and at that time a g-tube was placed. Ashton remained at Children's for 28 days. He was also born with an AV canal defect and Downs syndrome.
Just a few weeks of being home from the hospital Ashton had to be taken to the ER due to the g-tube was bleeding. He remained at Children's for another five days. Just this past week (1/4) we had to take Ashton back to the ER because he started breathing funny and looking a little blue. We were told that he has RSV and is on oxygen.
On a better note. He had an echo and the cardiologist said that one of the small holes has closed on its own and Ashton will not need his heart surgery until he is about two years old.

Meet Livia

2009-12-17T21:00:00.001-08:00

Livia Hope was born on Dec. 26, 2008. Twenty-four hours after birth the doctors discovered that she had a life threatening intestinal blockage. Livia was air-lifted to another hospital where she spent ten days in the NICU to relieve the blockage. We then learned that Livia's blockage was due to Cystic Fibrosis.

Livia is now 11 months old and continues to amaze everyone. She takes 7 different medications a day to manage her cystic fibrosis but it hasn't affected her spirit. She's an amazing little girl.

Meet Seren

2009-12-16T20:11:00.000-08:00

Seren was born in July, 2002. She has cystic fibrosis, asthma and hypermobility syndrome. She lives in England. She is currently having complications with her cystic fibrosis. Weight loss, and lots of junk in her lungs has landed her in the hospital once again. Seren's brother also has cystic fibrosis.

Meet Dawson

2009-12-09T16:53:00.000-08:00

Dawson has Macrocephly,external hydrocephalus, spina bifida occulta, tethered spinal cord, cerebral palsy (mild) severe joint pain, PVL, osteoporosis, abnormal C2 vertbrae, elevated ck leves and elevated liver enzymes. He is almost 4 years old.

Meet Elijah

2009-11-18T18:13:00.000-08:00

Elijah was born August 25, 2009. He was diagnosed prenatally at 13 weeks with Down syndrome. Six months into the pregnancy, we learned he had an AV Canal Heart defect that would require open heart surgery when he is between 3 and 6 months old. We are so lucky that he was born so healthy and is continuing to do well. Although he is having trouble gaining weight, he is a happy little baby. We just participated in our first Buddy Walk and it was one of the best days ever! We take things day-by-day and appointment-to-appointment, since we are still not sure when the surgery to repair his heart will happen. Elijah is our little superstar and we love him more than anything. We waited so long for him and we are blessed with his little facial expressions and milestones every day. Thank you so much for his beautiful blanket!

Meet Xavier

2009-11-05T08:16:00.000-08:00

Xavier Adan Gallegos was born May 4, 2009, he was born almost 6 weeks premature. He was also born with HLHS, a small mitral valve, tubular hypoplastic aortic arch, and left superior vena cava to coronary sinus. He underwent his first open heart surgery at 36 hours old, the Norwood. On August 5 he had a stent implantation, and on September 30th he had a double glenn.

Meet Auriana

2009-10-27T13:28:00.000-07:00

Auriana Faith was born on September 17, 2008. She was induced 5 weeks early because she had a condition in utero called umbilical cord absent flow. Basically the umbilical cord had not formed properly and she was getting little to no nutrients from it. We also had found out at 17 weeks pregnant that she would be born with AV Canal Defect (heart defect in every wall within her heart), and we were warned that they thought she might have Trisomy 13 or 18. She was delivered by emergency c-section when her heart rate plummeted into the 40's. We found out 8 hours later that Auriana was born with Down Syndrome. When they told me Down Syndrome, I said "Oh, thank you God!" I had prepared myself to have her born with something much worse. I had prayed she would have Down Syndrome instead, and she does! Auriana had open heart surgery at 5 months old and is now heart healthy! She does still require a feeding tube though, for the fact that she refuses to eat. We are working on this though. Auriana started crawling last month and we are so proud of her! She also just got ankle orthotics to help her to stand so that she can practice walking with her therapist. She also doesn't hear very well, so we have been signing with her since she was 3 weeks old, and she knows 15 signs!! She's so smart! She has been such a joy to have in our lives and her big sister Kylee just adores her! Thank you for making her the beautiful blanket!

Meet Ethan

2009-10-06T17:01:00.001-07:00

Ethan Mills was born on November 5, 2007; he was a few weeks early and was delivered by caesarian section due to a rapid decrease of amniotic fluid in the womb. We were told shortly after delivery that our son had Down Syndrome. We felt so very blessed to learn that Ethan did not suffer from any sort of heart issues like so many Down Syndrome children and we were able to bring him home from the hospital just a few days after delivery. He was and continues to be a very easy, good natured little guy. Ethan was moving right along on developmental milestones until about the age of 7 months when we began to notice sudden 'head drops'. Our initial thought was that his head may be a little to heavy to properly support with his neck but by 11 months of age we were given the diagnosis of Infantile Spasm's, a form of Epilepsy. Ironically our diagnosis came on the eve of our first Buddy Walk for Down Syndrome. Fearful of the unknown, we began to do a lot of research along with our wonderful team of doctors. Ethan was on various types of seizure medications in an attempt to curb the many seizures he would have on a daily basis. We found that some medications were helpful but sadly only for a short amount of time. When we had run the gamet of pharmaceutical solutions we turned to the Kenegenicdiet for relief. Though this 'solution' was time consuming and difficult at times we followed it religiously for several months before it too proved unsuccessful. In addition to all of this Ethan was on ACTH which caused his personality and facial features to change. Through all of this we have tried to keep a positive attitude and learn that we are not alone in our struggles. As of July of this year, Ethan is back eating 'normal' baby foods and is only on one seizure medication. He is making every effort, along with his therapists', to regain the ground he lost...We have seen, in just a months time, that our little boy can now hold an object, transfer it from hand to hand and has considerable head control. Knowing that we can now begin again to check off his accomplishments; our hopes and dreams for Ethan continue to flourish and his beautiful smiles keeps us focused and encouraged each and every day.

Meet Miracle

2009-09-22T10:58:00.001-07:00

My Daughter has Down syndrome along with seizure disorder. It has been a long road for while the doctors was trying tom control her seizures she was in the hospital for 5 months in and out. She loves her blankie. Thank you so very much and may
continue to bless you and your family for what you are doing to touch so many little ones heart.

Meet Brayden

2009-09-22T10:55:00.000-07:00

Brayden was born with tetralogy of fallot, a chd i didnt know until the day after he was born that he had it. he was prefectly fine until 6 months old got really sick with pnumonia 2 x and a colasped lung so then they discoverd he had reflux and was not safe to eat by mouth now he has a g tube and has had a bt shunt in his heart g tube and fundo surgery and just got done having part of his colon removed and apendix also because he had an abstruction in his colon. brayden is now home and healthy and due for another open heart surgery oct/nov time, again im so sorry its taken me so long to get back to you its really been crazy here. brayden will be a year old in 2 weeks. thanks again.

Meet Riley

2009-09-17T11:31:00.001-07:00

Riley was born 3 weeks early; he was born September 17th 2005 on the Passenger Side of my car in front of my In-laws home on a cold September night.
Magna EMT‘s delivered him. Riley was diagnosed with Trisomy 21 shortly after he was born; when he was 2 days old he was lifeflighted from Cottonwood Hospital to LDS
Hospital where he was admitted to the NBICU for a month due to pneumonia, and
Feeding issues, reflux, and heart issues.

Riley was on oxygen for the first 4 months of his life, he also had reflux and was on
Liquid Prevacid until he was 18 months old.
When Riley was born he had 3 holes in his heart (PDA & ASD & VSD).
Today 2 of his holes have closed over on there own which are the (PDA & VSD) and the ASD has shrunk.

When Riley was 6 months old he had his first surgery for Tonsil and Adenoid removal and Clogged Tear Ducts, he had all this done all on the same day.
When Riley was 18 months old he had to have helmet therapy to help correct his
Plagiocephaly (flat spot on the back of his head).

Riley has hyperthyroidism and is on medication daily to help regulate his thyroid.
In 2008 Riley had surgery to have tubes put in his ears due having to many ear infections.
Riley has had RSV & Pneumonia since he has been born, and there have been multiple
Times Riley has spent overnight in Primary Children’s ER due to dehydration when has has been very sick.

Today Riley is a very happy and healthy little boy who is doing well and making
Wonderful progress in his Speech Therapy. He is also very active and into everything keeps us on our toes !
To read more about Riley you can visit his blog : http://just2ofakind.blogspot.com ( Just 2 of a kind ) .
Riley is are little angel with such a sweet spirit and we love him very much!
Thank you Lacey & Jaxson for the beautiful new blankie for Riley he will have something new to snuggle with besides his turtle named squirt.

Meet Colton

2009-09-11T17:31:00.000-07:00

Colton was expected to be a healthy baby boy--despite mother's early intuition that there was something not right. Here's where our journey gets exciting. Colton was born by emergency c-section. When he graced us with his arrival he required ventilation assistance. Day 2 Through low blood sugar, concerns of apnea, and increased work of breathing- he was transferred to NICU and diagnosed with sepsis/jaundice. He was home for almost 2 weeks and we noticed he was turning blue around his hands, feet and lips. We took him to the pediatrician and was taken straight to the hospital. It took over 2 weeks in the hospital to figure out what was causing the problems. Colton was diagnosed with tracheal/bronchial/laryngeal malacia (severely floppy airway) and some other medical conditions some we found out from newborn blood tests. From the time he came home from NICU we called him squeeky wheel- because he made so much noise...eating and breathing. We later found out his airway was flopping closed, that is why he was turning blue. The doctors told us that we were very lucky he was still here as his airway was a severe case of malacia. It could've easily been an unfortunate SIDS case. They put Colton was put on Bi-PAP to be on around the clock unless he was eating. He couldn't open his eyes with it on and it never fit well. After a week and a half of being home his heart rate dropped to low 30's. We took him to emergency room and after a week of trying to find the right place for treatment was then transfered to UNC children's hospital. He didn't come home again for two months. He got my trach at 12 weeks old and a ventilator. It is then my mom set up a website for me www.coltonsjourney.blogspot.com. Colton got a feeding tube at 6 months (after repeated admissions to hospital.) In September,2008 he was diagnosed with an immune deficiency and December with a bone disorder. In January he got glasses, and around march began growth hormone shots and immune infusions. Colton has also been diagnosed with having central sleep apnea so he uses a ventilator when he is asleep. Last week, he got a long term IV for IV antibotics and for blood access because he is so hard to get IV's in. Colton has a complex list of other disorders that no one can connect but everyone feels are connected. Doctors diagnosed him with an autonomic nervous system problem but can't pin point it yet. We've been referred to a specialist out of state and hope they can help. His therapists are so proud with his amazing progress. Colton is a fighter in every sense of the word. He loves his family, chewing on his pacifier, and his blue soft snuggly 'puppy' and now his new blanket. He is determined to teach anyone and everyone about life about living it to the fullest.

Meet Addysen

2009-08-10T09:51:00.000-07:00

Addy was born with duodenal atresia, imperforate anus, chronic lung disease, pulmonary hypertension and patent ductus arteriosus. Addy spent about 5 months in the NICU before being released to her birth parents. She was discharged with 24 hour O2, g-tube (peg type) 20 hour continual feeding, colostomy, mucous fistula, lasix, viagra, and four breathing treatments per day. Her birth parents had been looking for an adoptive family for her since she was a couple of weeks old. Once she turned 6 months old they decided to look in the midwest and not just her home state of Minnesota. We were contacted about Addy on May 17, 2007 and she became ours on August 6, 2007! Addy has had surgery to create her anus, remove peg tube and placed Mickey button and ear tubes placed. She then had colostomy take down surgery right after Christmas. She then had tonsils and adenoids removed April 2008 and a bronchoscopy performed. In June of 08 it was determined that s he no longer has pulmonary hypertension or obstructive sleep apnea and was removed from all O2 support. Addy has a tendency to get dehydrated very easily and succumbs to tummy illnesses easily too. When she is on antibiotics she usually ends up with C-Diff and has to stay in the hospital. She has had pneumonia/RSV once since we have had her but multiple times before she came home. She is currently doing well but we are still cautious!

Meet Andrew

2009-08-10T09:47:00.001-07:00

We adopted Andrew when he was 5 weeks old. He was born with hydranencephaly. The doctors don't give him much time, but we know that with a lot of love and prayers we never know how long he will be here.

Meet Harley

2009-08-06T13:37:00.000-07:00

Harley was born on may 14th and was diagnosed with Hydranacephaly. Meaning she only has 10% of her brain. I was told she would not live past 2 weeks outside the hospital. I was also told she would not be able to eat on her own and that she couldn't hear or see. Well she is just about 3 months old now, and she is smiling she can hear me, she may not know what she hears, but she hears. I believe she knows who her family is. She eats great on her own and is nearly 7lbs! She is our lil Miracle baby.

Meet Julia

2009-08-05T13:57:00.000-07:00

Julia was born by repeat csection Dec. 5th 2008, she was our second daughter, an early christmas gift! we were told prior to her birth that it seemed as though there may be some extra fluid on her brain and i was moved to high risk care. Little did we know, the extra fluid on her brain would be the least of our worries. very shortly after birth Julia required oxygen to help her breathe and was taken to the NICU. she was born with a head full of beautiful hair!
4 days after her birth we were told that Julia has CHARGE syndrome, something we never heard of and never imagined. our lives were turned upside down and our emotions were like a rollercoaster. some of the first issues noticed were julia's problem with breathing, she had trouble swallowing, and had a hole in her heart (ASD and VSD). we later learned that with Charge Syndrome these were typical signs. Julia had a gtube placed on Dec 14th, and had open heart surgery to fix her holes when she was just 3 months old. she also had her trach surgery 3 weeks after that. another 4 weeks in the NICU and julia came home, just in time for her daddy to leave to iraq again. she was home for 2 weeks before being taken to the PICU for 2 weeks due to a cold. Julia is doing much better now and we are so happy to have her home! her heart is doing wonderful and the cardiologist is very pleased.she has been weaned off some of her medications, and recently weaned off oxygen during the day only requiring it at night with her humidifier. Julia had her vision tested and so far we arent entirely sure what she can see, i know she can see light and we think she may have some vision in the lower area of her eyes. she had a hearing test done, but it wasnt done completely, the test showed she was deaf, and she was fitted for pearly pink hearing aids, however thru therapy and play at home we believe she is able to hear at least some. during her open heart surgery one of her vocal cords was nicked and it is now paralyzed. sometimes the vocal cords will return to normal and sometimes not, time will tell. we are hoping to have the trach removed next spring and begin teaching her to eat by mouth! so far she is doing great with dum-dums :) along with Charge syndrome can come many visual affects, the only one that effects her is the CHARGE ears, her ears look a bit like elf ears,...considering she was a december baby its appropriate. Julia has enriched our lives in so many ways, we have grown, learned, and felt such love! she went from a early christmas gift to a TRUE Christmas MIRACLE!! she is OUR snowflake:)

Meet Lorelei

2009-08-02T13:01:00.000-07:00

Lorelei was born on 4/18/08 a healthy baby girl, or so we thought. Her pediatrician heard a murmur in her heart and called for an ECHO which found that she had an interrupted aortic arch and a VSD. She was flown to MUSC in Charleston, SC at 2 days old and had open heart surgery at 6 days old. She is doing great but is facing another surgery in the next few months for subaortic stenosis. She is a warrior in her fight. You can read her story at jessjohnandloreleifriedel.blogspot.com,

Meet Jayden

2009-08-02T12:52:00.000-07:00

Jayden was born March 21, 2007. He was diagnosed with trisomy 21 shortly after birth. Things were pretty uneventful until he was 18 months old. He was having respitory problems and we took him into the ER. He was satting in the 50's and he was intubated and flown to UNMH in Albuquerque. He spent the next 2 months in the PICU, 5 weeks of which, he spent on the ventilator. It was discovered that he had an ASD and pulmonary hypertension. The right side of his heart was enlarged. He was placed on nitric oxide. He was sent home on an ng tube and oxygen and a list of about 10 different meds. He had heart surgery to fix his ASD in January 2009 at Denver Children's Hospital. He has continued to make strides to recovery. Currently, he is down to 2 meds. and oxygen and ng tube feedings at night. He is making progress in areas of speech, OT, and PT. His heart is now back to normal size and continues to be closely followed by all of his doctors. He is a sweet little boy and a joy to his family!

Meet Brody

2009-07-14T16:29:00.000-07:00

Brody was born at 36wks with Congenital Diaphragmatic Hernia in Denver CO. This is a Life Threatening Birth Defect with a 50/50% survial rate. He was missing almost all of his left diaphram allowing his stomach, bowels, intestines, spleen & part of his liver to migrate up in the chest cavity. This pushed his heart over to the right side & filled the space needed for his lungs to develop. Brody was born with 3/4 of a right lung and his left lung was very very small. He was placed on life support right after he was born. He had his first major surgery at 3 days old. We did leave the NICU when he was 3wks 2 days old but then airlifted back to Denver at 6 wks old & 5 months old. Brody had 6 surgeries in the first 9 months of life and we hope that will be all. He is now 2 1/2 years old and is full of life! He is my gift from God!

Meet Grace

2009-07-10T08:22:00.001-07:00

Grace came to us through adoption. Her birth mom was on Depakote, for a seizure disorder, during her pregnancy. They knew before Grace was born that she had significant heart defects. She had a large PDA which had to be ligated twice, two ASD's, PAPVR, with unusual anatomy. Her heart is only one of multiple congenital anomalies. Grace was in foster care for the first year of her life, she came to us with significant, global delays. After feeling like things just weren't "right", we recently learned that she is missing a piece of her first chromosome and a part of a gene. She has had several surgeries, multiple hospital stays, more echo's and chest x-rays than one could count. She's been poked on, abandoned, found and restored. She is such a gift...perfect in our eyes...strong and beautiful. We thank God for bringing her to us! The Baker's

Meet Evie

2009-07-09T15:20:00.001-07:00

God has had His merciful hand upon her life since day one. Evie was delivered January 2008 with a serious undiagnosed heart defect; Transposition of the Great Arteries. She could have died any time in the ten days we had her home unaware that her body was not circulating her blood and she was slowly suffocating because of lack of oxygenated blood. We took her to the ER one night because it was apparent she was having respiratory difficulty. It was here that we almost lost her as a dozen doctors and nurses rallied to try to save her as she slipped into ketogenic shock. When then diagnosis was made, she was air lifted to MUSC Charleston and placed in ICU. Hundreds of people began praying and asking others to pray. We felt the presence of the Lord through an unbelievably difficult time and know it was His hand of healing that saw Evie through open heart surgery and the difficult road to recovery.She has since battled congestive heart failure, chronic lung disease, failure to thrive, severe reflux and aspiration, asthma and is being tested for auto immune disorders. She is followed by half a dozen specialists and is still on a regime with medications and breathing treatments, but is such a trooper and is making great strides!We know the Lord Jesus has spared her life for a purpose and thank Him for every day He allows us to love her! She’s our little miracle!To read her story, visit: seventhsmith.blogspot.com

Meet Leo

2009-06-10T19:22:00.001-07:00

Leo Daniel was born on July 9th 2008. It was suspected (by ultrasound) that he would have Down syndrome but we didn't know for sure until he was born. This was confirmed within a week by blood test. The day after his birth, he was confirmed to have 3 heart defects but we were told they weren't very serious and that he would probably not require surgery. A few months later it was determined that he was developing pulmonary hypertension and they would have to fix his VSD (Ventricular Septal Defect, hole in heart). Leo also has hypothyroidism and takes medication daily to regulate his thyroid. Incidentally to the heart issues, it was noted on one of the chest xrays that something appeared wrong with his bowel and upon further investigation they determined he had a large segmental dilatation of the bowel (basically a congenital defect). They thought it might be Hirschsprung's Disease but the biopsy was negative for that. He had surgery in March to remove that section of his bowel and he currently has a colostomy. They then did the repair to his heart in April. We anticipate the reversal of the colostomy in August, if all goes well. He's an easygoing little guy and while he keeps us busy with his various therapies and medical issues, he is a delight in our family.

Meet Peanut

2009-06-02T20:24:00.001-07:00

My Peanut was born 4 weeks early, after 8 weeks of bedrest and terbutaline for preterm labor. She was noted to be jittery and a poor eater at birth, but was sent home with me two days later. From birth she has dealt with reflux, aspiration, chronic constipation, and more. She has endured more surgeries, central lines, and testing than most adults. She has survived an 18 minute cardiac arrest, and proved that the doctors don't always know the future!

She has a metabolic disorder called SCAD Deficiency, microcephaly, mild hip dyslplasia, neurogenic bladder, hydronephrosis, catheterized every 6 hours, is 100% g-tube fed due to severe oral aversions, is non-verbal, and is cute as heck! She walks in a gait trainer and uses a wheelchair to get around.

At 5.5 years old, she is at a 6-9 month level developmentally. She has just started making sounds - mama, nana, nyny.

She is always smiling, super ticklish, and absolutely amazing!

Meet Lilyana

2009-06-02T08:03:00.000-07:00

Lily was born on Feb 29th 2008, she is a leap year girl. She was orignally diagnosed in utero with HLHS. I (Mommy) prepared myself for what was to come. I geared up for 3 surgeries thinking we would have 2 in the first year then be good for a little while. But when she graced this world with her presences we would soon find out she was not only born on a special day, she had a special heart and a unique condition. She was born with Dextrocardia, which is where the heart is on the wrong side of the chest but what is unique with Lily is her heart is a mirrior image of ours. It is called Situs Invresus, meaning, all of her organs are flipped, not just her heart. Which is good, if everything wouldn't have switched, it would have caused grave problems. On top of the Dextrocardia SI, Lily has had a CoArc repair with a vein from her own wrist. She had a VSD that was repaired and caused a residule ASD. We have done nothing so far with the ASD, hoping that it will close its' self. She also has Aortic Stenosis , the valve has been ballooned and repaired several times but we reclently found out that the vlave is completely defected and will have to be replaced completely. So they will be taking her pulmonary valve and putting it on her aortic valve, then put in an artifical valve on the pulmonary side. On top of this all, we almost lost our precious CHD Warrior Princess to LVOTO- Left ventricular outflow tract obstruction.She had 6 blood transfussions durring that surgery alone, not to mention the ammount she had when she returned upstairs, along with the many other blood products. She is our Miracle, and blessing. She will be undergoing surgeries for the rest of her life to replace her valves. We get three to five years in between each surgery. She will be heading in this summer for her 4th OHS. After this one, we pray we are given as clean of a bill of health as we can get, and not worry about another hospital stay for years to come.

Meet Avery

2009-05-27T15:09:00.001-07:00

After a picture perfect pregnancy, our 2nd little blessing was born with SEVERE PPHN and RDS. Both of which ALMOST took his life. After weeks in the hospital of being on an Oscillator and Ventilator..... and SO CLOSE to being put on ECMO, he came home and is exceeding in reaching all of his milestones!! Despite feeding problems, SEVERE REFLUX and him being on the small side (5th percentile for length and 3rd percentile for weight), he continues to amaze us and all of his doctors with how well he is doing.

Meet Arabella

2009-05-23T18:03:00.001-07:00

Arabella was born prematurely with fetalis hydrops, complete AV canal, and Down syndrome. She was born weighing 7 lb 11 oz. After draining all of the excess fluid from her little body, she was down to 4 lb. She fought hard and beat all expectations - she survived. At 7 weeks of age she went into heart failure. After 85 days in the NICU, she traveled to Texas to meet her family. We were home a grand ten days before rushing to the Emergency Room. She was admitted for Respiratory distress. During that seven week admission, her complete AV Canal was repaired. Her pulmonary hypertension was measured, and she picked up every bug she could. She returned home for about 10 days and was re-admitted for Respiratory Distress. During this six weeks admission she has received a trach, g-tube, and fundo. She has battled aspirate pneunomia and every bug she can pick up here in the PICU. She went back into emergency surgery to remove part of her stomach. We have learned more about her BPD and bronchial malasia. She continues her fight, and hopefully one day soon, she'll be able to come home.

Meet Chloe

2009-05-21T18:59:00.001-07:00

Chloe was born August 12, 2008, 3 weeks early while we were on vacation in Maine! (We live in CT, about 5-6 hours away). Although exciting, Chloe’s arrival was fast and fairly uneventful. She was born with Down syndrome and a major heart defect (a complete and balanced Atrioventricular Septal Defect or AVSD). Her conditions were discovered at 19 weeks gestation and complications were not expected to begin for several months after birth. Chloe was strong at birth and after a brief stay in the NICU for evaluation was even able to room in with us. However, after returning home, 6 days after birth, Chloe’s troubles began with a simple UTI. In the first 9 weeks of life she bounced in and out of the hospital with failure to thrive, severe congestive heart failure and respiratory distress. She had open heart surgery at 9 weeks and a g-tube placement at 6 months. She has a TINY opening to her airway, severe obstructive sleep apnea and complications related to generalized hypotonia. All these things can make things such as a simple cold a difficult thing for our little peanut. She is a fighter though and ALWAYS keeps a smile on her face. She is an amazing spirit that we get strength from every day

Meet Ashlea

2009-05-19T14:34:00.001-07:00

Ashlea was born extremely prematurely due to severe Twin-Twin Transfusion Syndrome. She weighed 570gm at birth (1 pound 4). She had a VERY rocky journey through the NICU and nearly didn't make it on several occasions. As a result of her difficult start to life she has been left with chronic renal failure (she will require a kidney transplant in the next few years), cerebral palsy (spastic diplegia), a developmental delay and she is blind. Ashlea has had hernia surgery, a fundoplication and has a g-tube. Ashlea has surprised her doctors by recently learning to crawl and by starting to say some words, and at the age of 3 she has just started w-sitting for short periods of time. She is very cute and very loved. You can follow her journey at: http://thinkingofstartingablog.blogspot.com/

meet Brayden

2009-05-19T14:29:00.000-07:00

Brayden was diagnosed with hydranencephaly (parts of his brain have been replaced with cerebrospinal fluid) after receiving an MRI at birth, and given a terrible prognosis. The dr's who didn't believe Brayden would survive the pregnancy, have been astonished with his miraculous improvements that continue to defy the odds. Upon surgery at just a month old to place a VP shunt to control hydrocephalus (fluid build-up in his head) he has done nothing but improve more and more. He will be celebrating his 1st birthday on June 30th 2009, and is growing stronger every day. Follow along on his journey at: www.caringbridge.org/visit/braydenharper or learn more about his condition at: http://hydranjourney.blogspot.com

meet Zachary

2009-05-07T10:51:00.000-07:00

Zach was born at 33 weeks with congenital diaphragmatic hernia, we knew he would be born with this condition from 20 weeks gestation at our "big" ultrasound. Basically Zach's stomach, intestines and liver were in his chest, leaving the lungs little room to grow and squishing his heart. once born he was intubated and placed on a vent for the next 2 months. during this time frame zach had blood transfusions, between 4-6 xrays a day, and 4 blood gases taken a day to check his oxygenation. at 5 days old Zach had his repair surgery done to pull his organs back into his abdomen and close his diaphram hole. zach remained hospitalized for 6 months. during this time he recieved his second surgery to place his gbutton so we could feed him (he developed oral adversion and lost his suck reflex)
Zach came home in april 2008 and stayed home only 5 days before going into respitory faliure. once back in the PICU it was determined his pulmonary hypertension was the cause and after another 6 weeks on the vent he was able to come off with the help of liquid viagra. a month after his second homecoming Zach had a major seziure and was rushed back to the PICU, it was determined the cause was a subdural hematoma (blood on the brain) it was first thought the trama was caused by shaken baby syndrome (no way could this be true) and later was found thru MRI that Zach's brain was atrophied due to a brain injury probably at birth that caused brain cell to die and the brain to shrink, causing the "shake" to the head to have come from anything...neurosurgeon said he could have turned his head and had it occur! he also stated the blood was old, weeks, maybe months. (occuring in hospital we imagine) zach recieved his third surgery to remove blood from brain and a few days later came home again! Since this time Zach has been making strides, smiling and laughing, watching his brothers play, he has learned how to roll and is trying hard to crawl. Zach just turned 18 months old and is a joy to have in our lives. his current diagnosis' are Chronic lung disease, restrictive airway disease, brain atrophy, repaired subdural hematoma,repaired congenital diaphragmatic hernia, ex:preemie 33 weeks, scoliosis, gtube fed, GERD,pulmonary hypertension, pulmonary hypoplasia, history of seziures, global developmental delay, and hypotonia.

Meet Vincentio

2009-04-21T21:38:00.000-07:00

Vincentio was born on Sept.11,2005. A preemie (he wasn't due till late Nov.), he was born with a very large VSD and spent 5 weeks in the NICU. When he was finally sent home, he went into CHF three days later and we almost lost him right there in our living room. He spent a week in PICU on meds and was sent home again. The following week he went to cardiology for a checkup and his doc called the mobile ICU from her office and had him transported back into PICU. From there he had his heart repair (at 7 weeks old and just under 5 lbs.). He couldn't wait any longer, he was dying. The operation saved his heart and his life but two weeks later we noticed a bulge at the base of his incision, the peds surgeon said it was a hernia, nothing to worry about, they would fix it later. He seemed to do well for a few months, then he began to have many, many respiratory problems, months later they realized (during a CT while hospitalized), he had also been suffering from a diaphragmatic hernia as well. His intestines and stomach were collapsing his left lung.. no wonder he couldn't breathe or hold down any food. He had surgery to repair this and a bowel obstruction that was found during presurgery tests, and was in PICU again during recovery. Since then he has had a Nissen for severe reflux, and a g tube for failure to thrive. He's 3 1/2 now, and a whopping 22 lbs! and is just beginning to walk and use some sign language. He has some leakage in his right atrium still and issues with pulmonary hypertension, he also suffers from a myeloproliferative blood disorder so we have to watch blood counts and have done one bone marrow biopsy so far to watch for leukemia.. so far we've been lucky there. He's my angel :)

Meet Liberty

2009-04-20T20:32:00.000-07:00

Libby was born with several congenital heart defects. Tetrology of Fallot, pulmonary atresia, and AV canal. Any of these by themselves can be deadly, she has all three together, spinal cord problems and one kidney. She's had 3 open heart surgeries, her fourth is coming up. She coded after her first surgery and needed echmo. The doctors didn't give up and that is why she is still here today.

Meet Gwendolyn

2009-04-02T21:16:00.001-07:00

Gwendolyn has SMA, a nasty disease. But she is such a fighter, go to her blog to sign a petition for SMA.

Meet Junior

2009-04-02T21:11:00.000-07:00

Junior had meningitis as a newborn which caused a brain injury. He has many health challenges which include chronic lung disease, a mixed seizure disorder, Cerebral Palsy, sleep apnea, and Kyphosis. He was not expect to live past infancy but God had other plans and Junior proved all the docs wrong. Junior is now 10, he is a fighter who loves life and is determined to live every moment to the fullest. He smiles his way through even the toughest of times and is an inspiration to those around him

Meet Malachi

2009-03-28T10:19:00.001-07:00

Malachi was born with Down syndrome and spent the first 4 months of his life in the NICU. Malachi was 6 months old On Jan. 30, 2009 when he went in for a complete AV canal repair and a Mitrial cleft repair. While there he went into Junctional Tacicartia and his heart rate went above 220. They tried to cardio-vert his heart 4 times with no luck. He remained in a irregular heart beat for 5 days. 2 weeks after that episode we got to go home! Malachi has severe reflux, hearing loss and vision impariments. We know our medical journey is far from over, but we are enjoying every second with our happy little man!!

THank you Lacey and Jax for the amazing blankie, Malachi loves it!! Im sure it will be his favorite! We have showed it to our entire family and they too loved it!! Great work and thank you again!

Meet Ava

2009-03-19T15:10:00.001-07:00

Ava was born with Congenital Diaphragmatic Hernia. This is when the diaphragm does not form properly allowing the organs to migrate up in the chest using the space of the lungs and heart. We brought her home from the nicu after 47 days. She was doing very well. Then a month after her second birthday the patch that helped save her life was what was causing her much pain. After being airlifted to a bigger hospital Ava had a 7.5 hour surgery. Due to complications she would have another 3 abdominal surgeries and two skin graph surgeries. (Total of 7 surgeries in her 2 years.) You would never know she faced so many challenges. We thank God every day she is still with us. To read more about her you can visit http://avaslifewithcdh.blogspot.com and http://cdhawarenessvideos.blogspot.com .

Meet Phoenix

2009-03-15T18:33:00.001-07:00

April 30, 2008 our beautiful son Phoenix was born. Little did we know the journey we were about to begin. Phoenix was born with a genetic disease called Cystic Fibrosis. Day in and day out Phoenix will sit through hours of breathing treatments and chest therapy. He must take numerous meds in order to digest his food and stay healthy. Phoenix needs your help!

His mommy is so great at spreading CF awareness, go to his site to help out.

Meet Benjamin

2009-03-15T18:21:00.000-07:00

Benjamin is seven years old. He was born with microcephaly. His family lives in New Hampshire but was here in Utah visiting when he got sick and ended up in the hospital. I was told from a friend that he was here so we took a blankie that was already made and got to hand deliver it. What a joy that was and getting to meet his sweet mom.
Pray for Benjamin tonight that he can get a lifelight home so he's not stuck here for much longer.

About the blankies

2009-03-04T10:56:00.001-08:00

Jaxson's Blankie's for Babes was created by Jaxson's mom to give back. Jaxson was born with heart defects, among many other things and has been through a lot in his short life. They are flannel blankies crocheted around the side for kids with life threatening illnesses. To request a blankie for your child or someone you know click on the form on the sidebar.

About Julie

2004-03-04T10:00:00.001-08:00

Julie is mommy to beautiful little Arianna. Arianna was born with Trisomy 13. You probably don't know what that is, and thats because only 1 in 30,000 results in a live birth. They told them that she would not survive, and sent her home on hospice. Now its two and a half years later and Ariana is doing great. What a miracle she is.

About Lacey

2004-03-04T10:00:00.000-08:00

Sorry, I will find a better pic of me, but I am Jaxson's mommy. I wanted to start this for kids because so many people give to us when Jax is sick, and this is my way to pay it forward. My mother-in-law taught me how to crochet the blankies 3 years ago, and its been my favorite pastime since. I really enjoy picking out the blankies for each individual child. I am having a great time doing this.