Another Step Closer to Home

Yesterday Olivia was moved out of the NICU to the hospital floor! Because she is no longer critical and is gaining weight they felt she was ready for the move. Over the weekend we were being prepped to take her home with monitors, TPN, feeding tube, the works. Surgeons and neonatologists felt that because her condition may take some time, possibly years for her bowels to adjust to feedings, that it may be best if we were at least home. I was very stressed about this but Monday afternoon the Cystic Fibrosis team made it clear that they would not do that. They want to make sure she is taking full feedings and off the TPN (nutrition running through her central line) completely, although most likely we will go home with the feeding tube. They came up with the idea to move us to the hospital floor and she is now more closely monitored by the CF team.

With the good news seems to come some bad. We've begun getting used to this. We were told that Olivia is becoming extremely anemic and unless she can make a turnaround this week she will need another blood transfusion. She did have several after surgery but this came as a surprise as we were leaving the NICU that it's a strong possibility she may have another.

I'm hoping the move will re-energize us and things will turnaround quick. The power of positive thinking is my focus now. It's hard not to get sucked into all the bad or frustrating things that happen but the move feels like we're taking a big step toward home!

America's Got Talent-Sisters with Cystic Fibrosis

In Waiting

Well we continue to wait to see if Olivia will tolerate her current feedings. They have made no changes over the last 5 days to see how she does just strictly on formula and TPN. I think we got to the point where there were so many variables that it was confusing to everyone what was the cause of her troubles so we're back to just formula on a continuous drip, nothing by bottle again, no enzymes. So far so good and she's gained the most weight each evening than she has the entire time she's been here. We're now up to 6 pounds 10 ounces!

I also have to share a funny Addison story. While I was home last it was very stormy, as it has been for weeks it seems. While I was in the bathroom getting ready, Addi in the living room, there was a loud crackling thunder. I thought she would be scared by this so I ran into the living room saying, "wow that was loud" and seeing if she was okay. She just looks at me and says, "just thunder mom, no reason to cry about it." She was so cute, just shaking her head like it'll be okay and talking with her hands. I can't believe some of the things she says and how adult she talks sometimes. I definitely don't feel like I'm talking to a 2 year old!

Olivia's Due Date

Today Olivia is officially a newborn! I was able to snap a picture while her feeding tube was out today. Unfortunately we had to stop her feeds again. At my frustration point today I asked the surgeons where we are headed. It seems as though we are stuck in this cycle of starting and stopping feeds because she is unable to tolerate the volume of feeding we reach. They were clear today that although this is frustrating it's just the process of adaptation that her bowels have to make after surgery. Every time they start feedings she is able to tolerate more and more before they have to completing stop the food and let her bowels rest. So it appears this will be the routine for awhile. It took us 6 weeks for her to tolerate 1 oz. of formula so we're in for a long road. Surgeons told me it could take anywhere from 2 months to 2 years but they are happy with the progress she has made so she must be doing well. They did start her back on a new formula this evening called Elecare for infants with short bowel syndrome. At this point the CF is easier to handle than the aftermath of the bowel surgery. I'm glad I got some answers today and while I felt that Olivia keeps sliding backward I was reassured that this is just the process and she's actually doing quite well.

More info on Elecare and Olivia's condition of short bowel syndrome: http://elecare.com/

Short bowel syndrome describes a group of problems affecting individuals who have lost the use of a major part of their small intestine. This syndrome often occurs after bowel resection surgery in which a portion of the intestine is removed.

SBS 101

Ordinarily, digested food, water, and nutrients are absorbed into the walls of the small intestine and then carried by the bloodstream to other parts of the body. After bowel surgery, patients — especially infants — often have difficulty absorbing all of the nutrients they need.

Common SBS Symptoms

Chronic diarrhea, which can result in:

• Malnutrition
• Dehydration
• Weakness
• Fatigue
• Weight loss
• Failure to thrive

Immediately after bowel surgery, most patients must be fed parenterally. However, it is important to get the bowel working properly again by shifting as quickly as possible to tube feeding directly into the small intestine.

Enteral feeding encourages a process called intestinal adaptation, in which the bowel begins to grow larger and is able to absorb more nutrients. This bowel growth is essential to your child's long-term ability to absorb nutrients from food. For many, it is an important first step to oral feeding.

How EleCare® Can Help

EleCare is designed for both tube and oral feeding. EleCare provides protein in the form of free amino acids (the building blocks of protein), which are already broken down and are easily absorbed. Amino-acid-based formulas such as EleCare may be useful in the management of SBS. Learn more about how EleCare helps >

1 oz. Gain!

Olivia gained just over 1 oz. yesterday! I couldn't believe it! She had only been gaining around 10 grams each day so this has been a tremendous improvement. We have started back on the bottle at least 4 times a day and she has been doing excellent. I'm a little worried that the more we go up on feeds the worse she will get, like before, so I hope they give her time to adjust to each feeding. They did take her off all the IV nutrition today so she is only on formula. Once she is able to take full feeds (2 oz.) and we have her enzyme meds adjusted and she isn't having too many stools we can get home. I'm hopeful this is just around the corner now.

For anyone wanting to visit I thought I should let people know our schedule. Mornings are very hectic, I usually get to the NICU by 7:45 a.m. in time for her breathing treatment and chest physical therapy (CPT) at 8:00 a.m., which lasts about 40 minutes, then diaper change and feeding, 8:30 Surgeons round, 9:30 Pulmonology doctors make their rounds to discuss CF related updates and around 11:00 neonatologists round. I like to meet with all the doctors to get any updates and ask questions. By noon I do CPT again for 40 minutes, diaper change and feeding. 4:00 p.m. and 8:00 p.m. same rountine so afternoons are much less hectic. Once Olivia is off her antibiotics and chest x-rays look good (her infection gone) we may go back to just morning and evening CPT as before. On Tuesday afternoons I leave to go home to pick up Addison from daycare and spend the evening with her, taking her to daycare the following morning in time to be back at the hospital for Olivia's 8 a.m. CPT Wednesday. I leave again Friday late afternoon, staying that evening and all day Saturday at home, coming back to the hospital Sunday morning again. This has come to be our new routine and so far it's working while Olivia is in the hospital. The Rainbow House is my second home right now and I'm so grateful to have this place to stay so I don't have to drive back and forth every day.

Miss Addison's Summer Fun

Dreaming of a Bottle

More Pics

We were moved from our dark hole in the NICU to a window area now. It is much better. We came to find out the reason for the move was to make way for quadruplets coming in! Either way, we're happy for the move and even more happy we don't have quads!

One Month Old

Miss Olivia turned one month old today!

Chest Physical Therapy (CPT)

Normally we do this 2 times a day in the morning and evening. Right now because she is sick we are doing it 4 times during the day. We do this in 10 different spots for 3-5 minutes to help break up any mucus, preventing any buildup that could cause infection in the lungs. She usually tolerates it well as you can tell. I call it her daily massage.

Trial & Error

I was told the other day by the doctor that, "It's just trial and error now." This is not what I want to hear from doctors and surgeons when it comes to finding out how to help your child but at least they are honest here. The issue is the "stooling out" to the point that she is losing weight because nothing is retained in her system. Olivia is still on continuous feeds through the feeding tube to see how well she can tolerate the slower amount of food into her system every hour. We are slowly making progress and she is able to tolerate a little more each day. The next step, once she's taking enough through the tube will be to go back to bottle feeding to see how she will tolerate an, all at once, feeding. They have increased her acid reflux medicine and her pancreatic enzymes to see if this will help the stooling issue also. If not they may switch enzymes to a type that breaks down quicker as everything is just passing through her digestive system too quickly due the amount or lack of amount of intestine she now has after surgery.

To add to the problem, Olivia has managed to get some type of infection, like a cold basically. I noticed a few days ago she was very stuffy and coughing so I alerted Pulmonology & the CF team. They told me from the beginning that if I noticed any sign of congestion, coughing, etc. that it's best she is put on an antibiotic right away and to increase the amount of times we do her chest therapy so it doesn't develop into anything worse. So for the next 2 weeks they are monitoring her closely to get rid of that as well.

Although it seems, in my world, that we are having such difficulty I look at others here and know that we are okay. I've come to be friends with the mom next to Olivia so her and I share updates about how our children are doing. She is very strong and is expected to be here for at least another 3-4 months. I just can't imagine. We have our good days and bad together.

"65 ROSES"

"65 Roses" is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce.

Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call.

The Weiss brothers, Richard, 5; Arthur, 7 and Anthony, 16 months.

After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless.

He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."

Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.

Blog site

My sister-in-law came across this blog of a 2 year old girl named Olivia who also has CF. This gives a good explanation of what CF is and the meds and treatments that our Miss Olivia will have. I love the photos. She's such a cutie! Just as our little Olivia will be!

http://taleofolivia.blogspot.com