I intended to get this posted sooner but my little zoo crew at home had different ideas.
Today is officially CDH awareness day. While we should be spreading awareness every day, today gives us the opportunity to take time and be intentional and be diligent. I ask each of you who read this to tell 5 people you know about CDH. Tell them that it affects 1 in 2000 babies, more than Cystic Fibrosis and more than Spina Bifida. Tell them that the survival rate is a frightening 50-60%. Tell them that there are only 100 hospitals in the country with ECMO machines, which are crucial lifesavers for many, many CDH babies. Tell them the often lifelong challenges these little ones can face after overcoming the hurdle of surgery, learning to breath and getting home from NICU. Tell them that you know a babe who has survived CDH named Liviana but there are many others who have become heavenly angels.
My hope is that more people in the medical community will learn of CDH and begin researching the potential causes or genetic links. I want more doctors in more hospitals trained and experienced with CDH. I want more hospitals to have ECMO available so families can stay closer to home and so undiagnosed babes will have a better chance at survival. I want radiologists and technicians well-trained on what to look for so families can prepare and medical staff can be ready for these little ones arrival. I desperately want for not one more family to face this often devastating diagnosis.
I have been typing this with one hand with my sweet angel snuggled in my arms. I feel blessed to have her here and hope that her presence in our lives can make a positive change in someone else's life.
Below are a couple of ribbons that you can copy to your website or e-mail signature.
It is time to give back the help that others have given to us.
I became aware of the Hoskin family through a dear friend of mine, Kara. Jeff and Allison Hoskin are from Wichita and have three children, Preston, Parker and Bailey. In 2006 Jeff was diagnosed with Leukemia and after many treatments is in remission although not officially "cancer-free". While the family is thrilled that Jeff is in remission their joy turned once again to fear as Allison was diagnosed with Hodgkins Lymphoma in the Summer of 2007. Imagine mom and dad both having cancer and three young children. Allison eventually responded to treatments also and seemed to be in remission.
Kara received a call this past Monday telling her that Allison's cancer was back and it had moved to the area around her kidneys. They have taken Allison 12 hours away to Mayo Clinic in Minnesota where they will begin aggressive treatment that essentially means killing off everything in her system, including her own immune system, through high dose chemotherapy and then adding her own harvested stem cells back in so her system can attempt to rebuild itself.
As you can imagine this is extremely difficult for the family. Allison is 12 hours from home, from her family, from her 3 children. This entire situation is of course an emotional and financial toll on the family. They need to be there as they can with Allison. The cost of gas, food, lodging and travel expenses are mounting. They need help to be there for Allison and get her back home with her children.
You can help but visiting the Hoskins website here. Even $5 can help. They have paypal setup on their page to take any donations and assistance you can offer.
I have three children of my own and I cannot imagine the difficulty, fear and pain of his situation for the family.
Please help if you can and remember to keep the Hoskins in your thoughts and prayers.
I have often called my daughter Aria by the nickname, "Spunky". Since Liviana's arrival I have also realized that she too qualifies for the nickname. My mom looked up the definition to spunky and this is what she found: Showing courage; possessing or displaying courage; able to face and deal with danger without flinching. Yes, that is definitly Liviana and pretty much all CDH babies.
I apologize, once again for the delay in posting. I have many updates since it has been so long.
Liviana had an Orthopedic Surgeon appointment on March 13th. He said that she did not have any evident curvature in her spine at this point. He said she did have multiple areas of hemivertebrae on each side in her thoracic spine. If she ends up having an equal number on both sides they will cancel each other out and she won't have any curvature. We are redoing x-rays in 6 months when we will be able to tell more. She also has some anomolies in her cervical spine (which is up towards the neck.) He concurred that her head turning issue is likely torticollis and recommended physical therapy. We had to reschedule physical therapy because of childcare issues so her first session is this Friday. I have already been working with her at home and see minor improvements already. There is still a little part of me that worries that the neck issue is related to her vertebrae issues. We will know fairly quickly if she does not show improvement from the PT.
At our OS appointment Liviana weighed 9lbs. even! She was also 21.5 inches, although that is the least accurate measurement. At her 2 month appointment the next day she was 8lbs. 15oz. The difference I attribute to a digital scale vs. a manual scale and not weight loss. Either way she is gaining wonderfully, still about an ounce a day. She is still in the 5th percentile for height and weight. Our pediatrician is not worried at all. Given everything she went through in her first 4 weeks they would not expect her to be average or higher. Our doc thought she would eventually catch up because she would continue to go through a growth spurt at a point where other kids would not. She is perfect either way.
She breezed through her 2 month check-up. She is doing wonderfully, happy and healthy. She has some dry skin issues but that is easily remedied. She has been off of her prevacid for almost a month now and is doing fine. I decided to try her off of it because I suspected that some of her discomfort was from the medication and not the reflux. She does have minor reflux issues still but nothing to warrant medicating.
She spends most of her days in the sling accept when she is taking a long nap, at which time I will put her in her bouncy seat. She smiles so much and gets so excited when one of the kids is coming to chat with her. She has rolled over a couple of more times and is tolerating her tummy time. She is sleeping great and slept until 5am the other night before she woke up to eat. Lucky me!
I am so excited to see her growing up. She still has really blue eyes and I think, accept for shade changes, they will be staying that way. Now we have a blond haired/hazel eyed, brown hair/brown eyed and brown hair/blue eyed; Hmmm, what a strange, yet beautiful mix of children.
With spring approaching I am getting excited about taking the kids for walks and to the zoo. Liviana loves her sling and will do great hanging out seeing the world while I push the kids in the stroller. I have taken a couple of outings with all three kids and it was much easier than I imagined when I was pregnant. Like I said before, it seems like Liviana has always been with us and the transition has been pretty easy.
Now, onto other CDH babes.
Sofia Rose was born March 10th in Kansas City. She is currently on ECMO but is improving and hopes to have surgery in a couple of days. Please keep her in your thoughts and prayers. You can visit her blog through the link at the right.
Cadenne Hope was doing great at home after having g-tube surgery and taking full feeds by mouth, Yea Cadennne. This past week she started spitting up all of her feeds and is back in the hospital. She may have an infection, they are still investigating. Please keep her and her family in your thoughts. Her link is to the right also.
Ned has had his third surgery and is doing great. What a superstar to go through hernia repair, heart surgery and bowel surgery and be doing so well. He is starting feeds and on the road to going home. Yea Ned!
Please keep Emerson in your thoughts. She is at CHOP in Philadelphia and has recently started running a fever again. They have discovered that a previous infection (E-coli I believe) has attached to the patch used to repair her hernia. They are now deciding whether to do another repair surgery now or give her antibiotics for 18 months and do surgery after the course. Please, please pray for her family. They just want Emerson home. You can visit her page by going to Carepages.com and entering OliverUpdate.
There are so many other babes. I will be adding more links on the right with carepages so you can follow others.
Awareness Day Congenital Diaphragmatic Awareness Day is March 31st. I will be adding more info on awareness day this week. I am waiting to organize myself :). I wanted to give everyone a heads up though. You don't have to wait until March 31st to spread awareness so get to it :).
That's all for now. We have to get dinner ready. More this week with more photo's also. Much love.....Amy, Brad, Aria, Miles and the angel Liviana.
I swear, I am rarely sick but since Liviana has come home I have had about 2 relatively well days. By the time I got over the Bronchitis we were dealing with a stomach virus or flu. Aria started throwing up early Friday morning and continued with stomach problems into early Sunday. She is now fine. Brad and I then got sick simultaneously late Sunday afternoon. It may be the flu, who knows. I am more concerned with getting over it and keeping Liviana well than identifying it at this point. The only two household members to not get sick are Liviana and Miles, the two nurslings.
Other than that everything is wonderful. Liviana is growing and thriving. She is a little chow hound and I am anxious to find out her weight at her 2 month appointment.
She has an appointment on Thursday with the orthopedic surgeon. He is going to evaluate her as it relates to her hemivertebrae and neck issue. I am hoping and praying that she will not end up with a congenital scoliosis diagnosis. Her physical therapy was rescheduled for next Monday and we will know more on Thursday if it is torticollis or something more serious related to her vertebrae.
Guess what? She rolled over on Saturday, twice! She really dislikes tummy time so when I placed her on her tummy the first time she quikley rolled over. I put her on her tummy again and over she went. The little stinker. She continues to amaze me. She spent her first four weeks of life in the NICU, mostly laying in a bed, she had surgery to relocate major organs, learned to breath on her own and eat without a tube. Now, at just 7 weeks she is rolling over. She inspires me.
Aria and Miles are doing great. I can't believe how much Aria loves her little sister. She is always saying, "I take care of her". She lays with her and talks to her and helps me with diaper changes and tries to soothe her when she cries. Miles is getting so big and so independent. I smile all day long being around him. You cannot imagine how cute and funny he is. He is really into dressing himself and reading books right now.
I think that is all for now. I have two sleeping children and would love for the third to conk out so I can take a nap but I don't think that is going to happen. I will be sure to update after her appointment on Thursday. I am anxious about it and hope everything goes well.
Thank you for your continued thoughts and prayers.