"Not Me" Monday

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

I can assure you it was not me that has lately resorted to convincing Lucy that finger painting and coloring in her coloring book is her HOMEWORK! That is right! It's not me that is now beginning my third week of college, back from an extremely long 7 year hiatus, and the only way to get Lucy "out of my hair" so that I can do some algebraic equations is to tell her that she also needs to do her homework!

It is not me who has letting my blogging go by the wayside so that I may focus on my school work. I will always try to keep everyone updated but maybe not as often, sad to say. PRIORITIES!

It was not Lucy who was so exhausted after a long day. It was also not her that fell asleep during one of her one hour breathing treatments. She had finished her vest and inhaled medications and was down to doing just Tobi, which lasts half an hour. She was out cold! She was actually snoring!

Meconium Ileus

**This blog post has a graphic photo of a surgical procedure. This photo has been posted for educational purposes and is not meant to offend anyone.**

Lucy was born with an intestinal obstruction called Meconium Ileus.


Meconium is the special name for a baby's very first poop. The meconium poop is made up of amniotic fluid, intestinal cells, bits of mucus, and is very thick and sticky. The Ileum is the last of the three sections of the small intestine. The Ileum also the section of intestine where the appendix resides.


Meconium Ileus is a blockage in the small intestine that is caused by extra thick meconium in a newborn baby. Over 10% of babies with Cystic Fibrosis are born with this obstruction. Since the mucus in a CF baby can be significantly thicker than a normal newborn, the first poop gets stuck in the bowels causing the abdomen to swell. At birth, Lucy was very swollen and looked bloated. We new right away that there was a problem.


Ultrasounds and x-rays showed multiple obstructions in Lucy's small intestine. Her surgeon first tried to give her an enema to get the meconium to break free. They found that her intestine had been blocked with poop for so long that the intestine grew and closed up on itself. Her intestine was completely kinked and closed shut. Surgery would be necessary to "cut and paste" her intestine back together again.


While in surgery, her surgeon took a photo of one of the blockages, saying that it was one of the more serious cases of Meconium Ileus they had seen in their hospital. In the photo, you can see how much meconium was in Lucy's intestine. The large part being held by the surgeon is filled with meconium, and the smaller part has grown completely together and only has small, rock-hard "pebbles" in it.


Lucy's surgery was successful. There were multiple blockages and many inches of intestine removed from her stomach. They even took out her appendix while they were in there.

Breastfeeding And CF: The Interview

I met Wendy Martijn on Facebook through a mutual friend and have found that we both have a lot in common. Our daughters are very close in age and we are very passionate about natural child birth and breastfeeding and all of it's benefits for both mommy and baby. She recently contacted me and asked me if I would do an online interview about how CF and breastfeeding do go hand in hand. It was an amazing idea, and I was surprised in myself that I had not thought about writing on the subject before!

Wendy lives in Aruba with her husband and beautiful daughter. She is a board member of Aruba's one and only non-profit breastfeeding organizations called, 'Fundacion Pro Lechi Mama.' She is training to be a childbirth educator to address the issues of pregnancy, birth and lactation to the women of the small island of Aruba.

You can read our interview by clicking here! She asked great questions that allowed me to really touch on how breastfeeding really does make a positive impact on Lucy, her health and living WELL with Cystic Fibrosis.

Thanks, Wendy, for allowing me to reach other parts of the world with our story and raise awareness on the two subjects that are very close to my heart: CF and breastfeeding!

Cultured Pseudomonas

I had taken Lucy in last week to see her pulmonologist for some coughing and wheezing. She was given the antibiotic Bactrim, and her cough was clearing up within days of starting the antibiotic.


One week later, I received a phone call from her doctor. I was told that the results from her culture had come back from the lab and they had found mucoid Pseudomonas Aeuruginosa in her lungs.

It was the worst feeling I have had in a long time, getting that phone call about Lucy's culture. As Lucy's safe keeper, her mommy, I felt like a failure, like I didn't do my job to keep her protected. Pseudomonas is what all CF parents are warned about and she got it. Deep down I do know that it is not my fault, it was inevitable and I did the best I could do to keep her healthy. I know my job now is to kick some Pseudomonas ass and to keep it gone. I did my fair share of crying that night that I received the news, I dried those tears and now I fight!


Pseudomonas is a bacteria that can live anywhere such as man-made things, water and soil. It is one tough bacteria to fight off and is resistant to most antibiotics. "Mucoid" means that it is still 'new' and has not taken hold of her lungs, yet. The Pseudomonas bacteria is just hanging out in her bronchial tubes right now which is why Lucy's doctor wants to treat this infection so aggressively. We are going to try to kill it before it makes a home out of her lungs.


Pseudomonas can be especially harmful to those people living with Cystic Fibrosis because the mucus lining of their lungs are sticky and thick, and because Pseudomonas is so hard to kill with oral antibiotics. A CFer's lung is a great place for bacteria like Pseudomonas to grow and thrive. The bacteria can set up shop (colonize) in the lining of the lungs causing irritation and other lung infections leading to lung damage. I read that 80% of all CFer's will eventually have Pseudomonas come up in their cultures, it's just a matter of time.


This bacteria is certainly not the kiss of death and can be treated. Lucy will be taken off Bactrim and will be taking another oral antibiotic, called Cipro, twice a day for two weeks, to clear up the rest of her cough and wheezing. She will also be doing a six month run of an inhaled antibiotic to get to the source of the problem. Since Pseudomonas is resistant to oral antibiotics, she must inhale an antibiotic, called Tobi, twice a day for once month at a time, and Tobi is done in cycles. One month of taking Tobi. One month off. Another month of taking Tobi. One month off. One last month of taking Tobi and then she will be cultured again to see if the treatment worked.






I have tried to explain this bacteria very simply and how it may effect Lucy but I am certainly not a doctor. If any of you have more questions or details, please ask!

Dear Lucy,

My Dearest Lucy,

I truly can't believe that it has been two years since you were born. It seems so cliche to say that time has whizzed by, and it seems that everyone is quick to warn an expectant mother, "Enjoy them while it last. They grow up so fast."

Two years ago today, I was entering turf I had never dreamed of being on. Motherhood was going to be hard enough, what with diaper changes and 2 am feedings. After a chemical and intervention-free labor and delivery, you were placed on my stomach for a mere 30 seconds. That was all it took for our eyes to lock, and both of our lives were changed forever. We had a few seconds of unspoken bonding, our skin touching, the kind of bonding that will last a lifetime, and then you were ripped away by nurses and placed on a warming bed for examination. I could not see you. You were placed on the other side of the room. You were not near me where you were supposed to be. Things were going all wrong, not the way I had planned.

I had adrenalin coursing through my new mommy veins, and I could have ran to help you but they would not let me. They stuck tubes in you, x-rayed you and placed you on the other side of the building. So far away from me. I could have ran to you, if they had let me. Four hours later, I was checking out of the hospital against medical advice, and following you in the ambulance that they were transporting you in. They would not let me ride with you.



Every second crept by. The first 24 hours seemed like weeks to me. They informed me that you had blockages in your intestines that needed to be repaired immediately. At 18 hours old, you were rushed into surgery. They let me see you for a few minutes before you went in. I felt like I was going to vomit, pass out but I did neither. I cried.

Hours later, you were out of surgery, and they tell me it was successful. On your birth day, my emotions were mixed, high and low. It was supposed to be the happiest day of my life. You were in it. You were alive. You were finally here. January 13th, 2008 was the best and worst day of my life.

There was no talk of Cystic Fibrosis for over a week. I never even knew what CF was before you came along. The unknown was frightening to me. The doctors made no attempt to sugar coat the disease for me but I also knew that CF was not a death sentence, and treating you like a leper or feeling sorry for myself or you was not going to make our situation any better. Because of you and our new bond, I made a promise to you in that NICU, that I would do everything in my power to keep you the happiest, healthiest and most normal CF kid anyone has ever met.

I am certain that you do not remember me making that promise to you, being two weeks old and all, but I did. I whispered over and over in your ear, the things I wanted for you. The hopes for our future together as mother and daughter. I whispered to you my wishes for you to grow up not feeling sorry for yourself, to have the highest self-esteem to get you through the rough times.


As I rocked you, I promised that we would fight this disease together. I promised you that you would never have to be alone. I promised that I would do whatever it took to help keep you safe and healthy, no matter what. I promised that I would run to you if you needed me and I promised I would never let anyone stop me. Ever.

Two years have gone by since I made that promise. You have grown so much, and you have changed right before my eyes. I look into your huge blue eyes and I can see your future. Well, not really because I'm not psychic, but I can see that you have endless energy and spirit. You have grown so fast and time has flown by but there is not a moment that goes by that I don't cherish. Every moment with you is special. Every minute I spend with you makes me a better person. Every breath you take makes me sigh with relief.

You have come so far in two years from that infant in the NICU. I look at pictures like this...



...and I don't even recognize you. It is you, small, bloated, one-hour-old you, but you are so far removed from this place now that our 23 day stay in the NICU has become just a painful memory.

Every single day you make me laugh. You surprise me with your wit and intelligence. I love it when you read me books and sing me songs. I love it when you make up your own words to "Twinkle, Twinkle." I love it when you test my patience, push my buttons and see how far you can go without getting in trouble. I love that you like to wear your vest and nebulizer mask and even like to swallow your enzymes most of the time. I love it when you make it a game to see if you can shove all the pills in your mouth and swallow them all at once with out drinking milk with it.

I love every little thing about you. I love that you are still a little nursling and you ask me for milk when you are tired or upset. I love that you still do baby sign language even though you can say the words. I love it when you say, "Come'ere" or "Lemme hold you" when you want to be picked up and cuddled. I love that you like to swing high on the swings when we go to the park. I love it when you want to kiss my owies when I get hurt because you are so caring and kind by nature.


I love splashing in the puddles with you when it rains. I love the huge, tight curl that gathers on the back of your head. I love your artwork and when I ask you what it is that your colored, you say funny things like, "A pickle, Mommy!" or "Cinderella!"...as if I were supposed to know the whole time what it was. I love everything about you. You have fight. You have confidence and spirit. The kind of fight and spirit that you are born with, not the kind that can be taught. You are the most amazing little person and will soon grow into an amazing big person, right before my eyes. Way too fast.


Every single moment that I have with you is so special to me. I am taking it all in, and I am actually taking the unsolicited advice I got while I was pregnant with you. I am enjoying every moment I have with you. I am enjoying every moment while it is here because you are growing up so fast. I never take any time with you for granted.

Happy 2nd Birth Day, my little Lucia Ann. You are my beautiful little monkey, forever and always. I am so proud of you. I love you so very much.

Love always, Mommy