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Outings

No Tube! Look at that beautiful face!

Because Olivia had been in the hospital so long she really is not used to being outside so any chance we get to do things outside we do. The breeze on her face or quick movement really scare her, although she's getting better. This last weekend we chose to go to the Applejack Festival in Nebraska City and Addison had a blast! Both girls did very well all day!

Olivia's first outing was at Peru State College's annual kickoff to begin the school year and the first home game. There were kids games, snow cones, a band, everything Addison loves. Olivia pretty much slept but it was a great day to get out of the house!

Visits

Over the weekend Great-Grandma "Laine" and Grandma "Ancy, " as Addison says, came to visit. Great-grandma made a beautiful quilt and pillows for the girls! Thank you g-ma!

Addison could have played tea party all day with great-grandma.

Our last day in the hospital my Aunt and cousins were able to stop by. Cody also has CF (right) and was in Omaha that day for a CF visit so it was really great how that worked out. Aunt Cheri has been great to talk to for advice. She has been through this and knows what I'm talking about. She keeps in touch every couple of weeks to check in with me. It has helped tremendously!

FINALLY HOME!

As many of you know, Olivia was discharged on August 11th from Children's Hospital. We weren't certain that that would be the day until we got to the hospital that morning. Previously we were told it would be the 9th so our hopes were up then and disappointed to find it wouldn't be til later in the week. Luckily by Wednesday they felt comfortable enough to send us on our way home with Olivia. That week was very hectic as I was trained on how to give her meds through her ng (feeding) tube, how to put the tube down, and how to set up the feed pump. Most everything else I had done throughout my stay with Olivia.

Olivia was certainly exhausted by the time we were finally able to get out of the hospital. She had to endure shots given and her central line port taken out. Needless to say, a lot of screaming in pain, but I knew it was just one more step to getting home. Let's just do this and get out of here I kept telling myself! I just knew once she was home things would be better.

A discharge that started at 9 in the morning ended up finally complete by 7 that night. By that time we had to hook her up to the feed pump for the ride home and realized that we would have to find a pharmacy still open in Omaha to get meds for the morning. This was a little frustrating but again I kept telling myself we'll just do it and get home. We finally made it home around 9 that evening and of course had trouble with the feed pump and the meds on the discharge sheet were all written in Milligrams, not Milliliter to give to her. Oh the frustration! A quick call to the hospital cleared everything up. Luckily I had my mom to help because I was having a serious breakdown! I really thought, what am I doing. I can't do this! Once things settled and we had given her all her meds, fixed the feed pump and she was sound asleep I was able to get my head straight.

Things went well the first week home. I had done my first weekend alone with Olivia and Addison and mom had come back the following week to watch Olivia while I went to work. Sadly on August 22nd Scottie and I took Olivia to Children's ER because she was having bloody stools, unlike we had seen before. After 5 hours in the ER we were finally admitted and after convincing the doctors to bring in a gastrointestinal doctor to find out the cause of the bleeding she was diagnosed with severe MSPI (milk, soy, protein intolerance) which meant another formula switch.

So we added another diagnosis, not only does she have cystic fibrosis and short bowel syndrome due to the amount of intestine removed, she now has MSPI! We were discharged again on the 25th after I convinced them I could watch her from home and was not staying another 24 hours. At the time I had Home Health visit 2 times per week and was seeing the local physician once each week so I was confident watching her from home. Thank goodness the formula did the trick and we were rid of the bloody stools the following week.

She continues to thrive at home and is doing very well. She's not quite making the weight gain they would like to see but is not loosing any weight. She currently weighs 9 lbs. 2 oz.

We just recently went to Children's for another check up and to discuss the possibility of taking her off the ng feeds which we had running at night but were having so much trouble with the equipment I was certain Olivia could take the bottles on her own in the night. They were willing to try that but up the calories in her formula to help her gain weight so she is now tube free! It is so wonderful not having to worry about that any more. She got pretty good at pulling it out so I'm glad we no longer have it. As long as she tolerates the higher calorie formula we should be able to continue on this path. If she starts having a lot of stools or blood in her stools we may have to go back to the ng feeds but so far so good and we hope that remains the case.

Home Health no longer does visits as they felt I was doing very well with her and there were no concerns. I continue to bring her into our local doctor every couple of weeks and she goes to the CF Clinic at Children's every couple of weeks or at least once a month depending. It gets a little crazy and I feel I'm in doctor's offices or the pharmacy way more than I would like but this will be our norm so I just have to get used to it.

Addison is doing so well with Miss Olivia. She is very helpful and all the things I was worried about her doing like covering her face with a blanket or putting stuff in her crib she has never done. I think because she had spent time in the hospital with Olivia she knew to be careful about things. She always asks, "Are there any cords, mamma, can I sit by her." Thank goodness we have no cords now. Addison was excited to have Miss Olivia go to daycare with her on the 7th of September and asks every day, "Is baby Livia going to daycare with me today," and every day I say yes. It feels so good to finally feel like a normal family again!!

THINGS ARE LOOKING GOOD!

Olivia continues to do really well. Her blood cultures continue to be negative for any infection so antibiotics will be finished on Monday the 9th and they will most likely take out her central line as she no longer gets her TPN nutrition from that source anyway. She is taking mostly oral feeds except at night so we will be coming home with the ng tube to get continual food to her belly overnight. I am back at work full time now so this will be the first week we've been apart this long. I just continue to tell myself she will be home very soon!

Can This Really Be Happening!?

We were so close to getting Olivia home. On Wednesday I got the call that Olivia was doing extremely well and they were set to discharge us the following Monday. I was to begin training on how to insert her feeding tube, give her meds, etc. when Thursday night she spiked a fever of 102.4. On Friday blood cultures confirmed she has bacteria in her blood causing her a serious infection. They treated with antibiotics immediately but due to several blood cultures she became very anemic also and yesterday after returning from lunch I found her hooked up to more monitors and was told she would need a blood transfusion. She was becoming pretty weak and they hope the boost from the blood will help her fight the infection better. Today she is doing much better. She is smiling and more alert. The past two days have not been Olivia. I'm glad to have her back. Needless to say I'm not sure where we go from here, how long it will take for the infection to clear, when she will be able to take feedings again. Home is a distant thought once again.

THANK YOU!

We want to thank everyone who has helped us since Olivia's birth and during her stay in the hospital. So many have been so generous to us in numerous ways: watching Addison whenever we needed, bringing care packages to the hospital, cooking meals, giving us gift cards, clothes and blankets for Olivia, donating items for the craft fair fundraiser, organizing fundraisers, making food for the fundraisers, running in Olivia's honor, money toward medical expenses and a tremendous amount of prayers. Without your love and support I'm not sure how we would have made it.

Special thanks to:
My cousin Missy for organizing the Craft Fair Fundraiser and the Sloppy Joe Feed in Palisade.
Willow Ridge Assisted Living of McCook for raising funds for Olivia.
Co-worker Stacie Higgins and Tammi Thompson of Nebraska City, running distance races in Omaha & Lincoln in Olivia's honor, collecting pledges as they train and race.

The letter below was at fundraising events to thank everyone as we were unable to personally attend, it also helps explain Olivia's condition and our hope to be home very soon!

On May 7, 2010 Olivia Renae Sherman joined us 6 weeks premature due to a blockage in her intestines, a common problem in Cystic Fibrosis babies. She underwent surgery at Children's Hospital in Omaha that evening, removing a significant amount of dead instestine and undergoing several blood transfusions. On May 12th Olivia was officially diagnosed with Cystic Fibrosis.

Cystic Fibrosis is a life-threatening genetic disease that causes mucus to build up and clog organs in the body, particularly the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult. The thick mucus causes bacteria, or germs, to get stuck in the airways, which causes inflammation or swelling and infections that lead to lung damage. To prevent this from happening Olivia began chest compression treatments and breathing treatments within 2 weeks after her birth, which will continue all her life. These treatments are done a minimum of 2 times a day for about 40 minutes to help clear her airways and break that mucus, preventing any infection.

Mucus also blocks the digestive tract and pancreas. The mucus stops digestive enzymes from getting to the intestines. The body needs these enzymes to break down food, which provides important nutrients to help her grow and stay healthy. Olivia will need to replace these enzymes with medicine taken with every meal and snack, which helps to digest food and get proper nutrition.

Olivia's continues to recover at Children's Hospital from her bowel surgery. Her bowels are slowly adapting to where she is able to take more food each day and has begun to show steady weight gain, which is significant for any baby with CF. After being in the NICU nearly 8 weeks Olivia moved on June 29th to the hospital floor to continue her recovery.

We are so appreciative to everyone who has helped us during this time and for all your thoughts and prayers. We are very blessed to have such wonderful people in our lives! Thank you!

The Sherman Family-Vanessa, Scott, Addison & Olivia

Suh for CF

http://www.omaha.com/article/20100722/NEWS01/100729879

http://www.nebraskagolfclassic.com/ChairmansWelcome.asp

Busy, Busy, Busy

Well Olivia had been doing really well for nearly two weeks, no stops in feeds, no blood in stools but yesterday that changed. The blood in the stool was back so we stopped feedings but today we are back on food and doing well. She has not gained much weight for awhile but is maintaining around 7 lbs so at least she's not losing a significant amount of weight. She is very smiley and just loves for Addison to talk to her.

Aunt "Brini" came up to visit and we took Addi to the Children's Museum to see Clifford.

Daddy came up that Sunday and we went to Chuck E Cheese where Addison had a blast and was so excited to meet him! I've never seen her so excited!

On Monday Cousin Dave, Jack and Ellison came to visit. Jack showed Olivia lots of silly faces to get her to smile. It was so very cute and I got to spend some time with Ellison and see her for the first time!

My mom came up this week to spend some time with Olivia so she got to do her treatment too. Of course Olivia likes to offer her help a lot!

I have been slowly transitioning back into work mode trying to get in to the office a few times each week and to be home in the evenings with Addison more. It is very tough trying to be in so many places at once but somehow it is working although I do think I am losing my mind sometimes. I just keep reminding myself that this is all just temporary. Life will get normal again or a new normal anyway.

Exciting 4th!

Addison had a very exciting 4th of July weekend. We lit off fireworks at Grandpa Bruce's on Friday and Sunday she got to see her baby sister. She kept saying "I hold my baby sister momma." She just loves her. She was showing Olivia all kinds of things and just talking away. She also had to sing, "You Are My Sunshine," to her.

We were moved again to a new hospital room on another floor but Olivia is doing well. She is less anemic so there is no longer much concern for another blood transfusion. We hope to start oral feeds again tomorrow to see how she does. They feel her body has rested enough and it's time to push the feeds again to see how well she will tolerate them this round. I believe this is our 6th attempt so let's hope it works. I've heard other moms say it was like someone flipped a switch and their child made a complete turnaround and they were on their way home. I really hope that day is just around the corner. I can't wait to be home with Addison and Olivia together!

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

Starting Over

I'm so frustrated. They have stopped feeds again last night and began early this morning but just through her feeding tube, a small amount each hour to see if her bowels will handle the smaller amounts for now. It's like a trial and error process now that could take weeks to figure out. I have no clue where we go from here. She's now losing weight slightly and she's completing running on the IV fluids again to get those nutrients back in her body. Things were going so well the first couple weeks that's it's hard to be positive now when it all seems to be going backward. Miss Olivia tolerates everything so well and doesn't seem in much pain or discomfort so that's a huge relief.

X-Rays

Well, we're still having trouble and concerned with the number of stools Miss Olivia is having. They've made so many changes in the past couple days I'm not certain how they can rule out what the issue is but we'll see. The change in formula seems to be better as she's taking her feeds better and less irritable but surgeons are concerned because she has much less intestine than a normal child, due to the amount they took out during her surgery, that food is passing too quickly. They ordered more x-rays to make sure bacteria wasn't building up anywhere. Some areas were enlarged as the x-rays showed so they are putting her on an antibiotic to ensure bacteria isn't building where there could potentially be blockages. I just spoke with the doctor and for the amount of treatment and changes she's had to make over the past few days she's doing extremely well. She sure is strong! Everyone certainly agrees with that. At this point we're not certain if the issue is her lack of intestine compared to a normal child, a CF issue or that she has the intolerant formula issue. I hope we find out soon. I believe we're looking at at least another couple weeks in the hospital.

Update

After holding Miss Olivia's feedings until 9:00 p.m. last night she took 1 1/2 oz. when she was able to feed again and the nurses said she did well all night with the feeds we just have to see how the stools turn out. Surgeons agreed this morning to keep her at the amount she is taking and on the Alimentum formula. I can already notice the difference.

Good news regarding Addison's sweat test to determine if she was positive for CF. Tests confirmed she is NOT. Thank goodness!

Olivia is now at 5 lbs. 9 oz. so she has more than regained her birthweight which they are counting as 5 lbs. 5 oz. Although she was 5 lbs. 9 oz. at birth, those extra oz were fluid so technically she was 5 lbs. 5 oz. and 18 inches. So we're making good progress there!

Family Visits

Addison in the lobby at Children's-We have to come here every time she visits cause she just loves throwing coins in the water.

Entertaining herself by hiding in lockers

My mom, grandma, sister and brother were here to visit and hold Miss Olivia. She sure loved the cuddles!

Week 3 Ups and Downs

Week 3 started out very exciting with visits from family to see and hold Miss Olivia. Her feeds continued to increase upward from 1 oz. so enzymes were started to help her digest formula properly. This will become her norm with every feeding and throughout her lifetime, along with vitamins, and added salt to meals. Respiratory is training me on how to do the breathing treatments and they let me do the chest percussions on my own now. Something we do every morning and every evening that takes about 40 minutes, but is essential for her lung function, helping to break up any mucus that may build and cause infection.
As her feeds increased closer to 2 oz. I began to notice a change in her stools and she really struggled with eating and has been very irritable. I spoke with the neonatologist and surgeons today because I'm noticing the same symptoms Addison had when she was a baby and it was determined she was Milk, Soy, Protein Intolerant (MSPI) and had to be on special formula. We're not certain at this point if Olivia is experiencing the same problem but she is having too many stools to the point it is concerning doctors so we have stopped feeds again and will restart late this evening with the Alimentum formula and hopefully see a change.
Ironically, I was scheduled to meet with the team of doctors to discuss our discharge plan until all this occurred so it appears we've taken a step back but I'd rather we find out what's wrong now then getting her home and having more trouble. Although I'm very anxious to get home with her I know I have to be patient.

Less Worry

After worrying last night what x-rays and the surgeons may determine I got good news today. It was determined yesterday evening that an area in Olivia's intestine is very narrow so they may have to do another surgery to correct it. Luckily she's been having stools and additional x-rays show she should be fine but it's something they are going to watch closely, especially now that they are starting feedings again. She is also a little refluxy so they are going to give her some Zantac to help and maybe that will help her to eat more too.

I'm learning a lot about Olivia's treatment and they've let me do the chest compressions myself now. We started breathing treatments yesterday and she's been doing well. They say her lungs sound very clear. We will certainly be in a routine when we leave here.

Encouragement

People have sent me some great poems, quotes, articles
that have been a great source of encouragement. This
article especially may help others understand that
there are no limitations
for those with CF.

"Nothing too difficult for Nebraska Wesleyan student"

http://journalstar.com/news/local/education/article_80d65fee-5fb5-11df-90d3-001cc4c002e0.html

Poop Celebration

Who would have thought that one of the 1st's you'd want to celebrate was a bowel movement. Every day the past 3 days the surgeons have"guaranteed poop," as he says, but nothing. The past couple days were very trying. Although Olivia was taking feedings she started to vomit more which caused concern that there may be another blockage, so yesterday they gave her a tubal type enema to see where a blockage may be and several x-rays. Things appeared to be fine and this morning she has had 2 great stools thank goodness. Feedings were stopped the past couple of days so I'm hoping they will start again soon. Right now I'm just waiting on the surgeon's decision as to when that may be.

Nurses decided "good poop" deserved a pretty pink bow for her hair. They have fun putting her in outfits and dressing her up.

Aunt Cathy and Uncle Dave came over the weekend and brought some cute outfits. She definitely looks better in some color. Girls have to wear pink ya know and polka dots!

1st Bath

Cystic Fibrosis

5/12/10 The day was a very exciting day but by 4:30 p.m. everything changed. We were notified that tests confirmed Olivia has cystic fibrosis. This was immediately thought by surgeons due to the blockage in her intestines but wasn't confirmed until now. We really had just put it in the back of our minds thinking this wouldn't be the case. I am somewhat familiar with the disease, I have a younger cousin with Cystic Fibrosis so it was of great help and comfort to me to talk to my Aunt the evening I was given the news. If I hadn't done so I don't believe anything doctors could have told me the next few days would have been absorbed because I would have been far too overwhelmed. The past 2 days I have met with "the team" who will be taking care of Olivia, talking to pulmonologists, dieticians, respiratory therapists, etc. I am confident I can do this and Olivia will be just fine. A friend told me this quote and it got me through my first night after the news, "God only gives the mama's He trusts the most, His most delicate babies."

I think some people are mistaken about what Cystic Fibrosis (CF) is and much of what you find on the internet is not the most accurate and up to date so the best site to reference is www.cff.org to get the best info.

Cystic fibrosis is a life-shortening, inherited disorder that affects the way in which salt and water move into and out of the body's cells. The most important effects of this problem are in the lungs and the digestive system, especially the pancreas, where thick mucus blocks the small tubes and ducts. CF does not affect the brain and nervous system, it does not affect the kidneys, it does not directly affect the heart, the muscles, the blood and except the lungs, it does not interfere with the immune system. CF is inherited by receiving one abnormal CF gene from each parent, parents of a child with CF do not have CF and most often there is no history of it in the family.

We will have to learn to do a lot of things so all of that training we will get a Children's hospital like how to do breathing treatments, give her the enzymes she needs to digest food properly, pumping her chest to break up the mucus, etc. I know she is and will be getting the best treatment here and we are so lucky to be so close in distance to a great hospital like this.

5/13/10
Olivia had more lines taken out and I was able to give her a little sponge bath. She wasn't too certain about the bath but felt better afterward. She now only has her central line and by that evening she was moved to a crib, very exciting and a little less scary looking.

5/14/10
I didn't get to the hospital until about 1:30 p.m. because I decided to spend last night and this morning at home with Addison. It was nice being in my own bed and coloring and playing dolls with Addison this morning. She is very confused right now and told Daddy, "Mommy's not coming home, " so I knew it was time for me to spend time with her. This morning she woke up and came into our room, Scottie asked her why she had her flip flops and she said, "I don't know I woke up and my flip flops were in my hand." I hadn't laughed so hard in a long time. She loves these flip flops and was wearing them when we were reading our night time books and I forgot to get them off her. Oh it was so cute how she said it.

Olivia was started on food today but is having a little trouble so they did put a feeding tube in and she did take 4 feedings so now we just have to wait to see how her bowels are working. The nurses had done 2 feedings prior to me getting there and said they had a lot of trouble but after doing the next 2 with me they said she was certainly doing better with my help. I think she is progressing very fast and very well but we still have a long way to go.

Progress

On 5/10/10 we arrived at the hospital to find that they had changed how Olivia was positioned. X-rays were better so she is able to lay on her opposite side and her back now. They began weaning her off the pain med and we were told if the weaning went well the ventilator would come out. I was able to change her diaper and take her temp 2x and was so excited to do so although a little tough with all the wires. Later in the day they did up the pain meds and were unable to take the vent out. She was very alert so we were able to see each other a lot that day. It's just tough knowing she's in pain and trying to cry but you can't hear cries because of all the tubes.

5/11/10-They continued to lower the pain med dosage but she is still breathing too rapidly due to the pain in her stomach so they would rather wait another day to take the vent out. They like to see her breaths per minute between 40 and 60 and she is currently upper 80's.

5/12/10-I came in to the hospital just as they had taken the ventilator off and drainage tube at 8:30 a.m. They did put oxygen back on but took that off after noon. At about 9:15 a.m. they shut off her pain med and will just give as needed now. By 9:20 a.m. I was able to hear her cry, the first time since being here. At 1:00 p.m. I was able to hold her and did for nearly 2 hours! It was wonderful. She's already liking the pacifier, but her fingers best and her lungs are working well as she had a few good cries. Last night was the first night I spent alone at the Rainbow House and today the first full day but it was so exciting that it hasn't bothered me much. I'm really not sure how Scottie did this alone, while I was in the hospital. I just keep thinking we are very lucky. I look around at other babies and their families, so small, multiple surgeries, and those babies that are just alone, no one to touch or talk to them. It's very sad. I just can't even imagine.

Writing on the blog will be a great help to me and kind of a way to journal. Many are wondering how I can be doing this after all that has happened but in all reality it just helps to write it out somewhere and it's a great way to keep people informed without being flooded by phone calls since we can't take them in the NICU. More updates and pics soon!

Holding Olivia!

Olivia's 1st Days

On Mother's Day I was released from the hospital and made it to Children's that afternoon to see Miss Olivia and touch her for the first time!

Addison is very happy to be "big sister". I was told that she was telling the nurses at Bryan to "move, that's my sister," while she was able to get a quick glance before Olivia was transported to Omaha, very protective already.

I wasn't even certain how to hold Olivia and this is what they showed me as best. She especially likes it when I hold her arms to her chest. She certainly knows my voice and touch and Daddy's too!