Friday, January 29, 2010
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.
Thursday, January 14, 2010
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!
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!
Wednesday, January 13, 2010
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
Tuesday, January 12, 2010
10. High Calorie Diet~ Never would I spend any time at all agonizing over whether my two year old daughter had a total of 1700 calories for the day. I would not be adding butter, olive oil and mayonnaise to everything she eats in hopes that she won't lose weight. I don't think I would ever make her a Nutella chocolate sandwich with bacon and be so happy that she ate the entire thing. I don't think I would ever be worried about Lucy and malabsorption if she didn't have CF.
9. Salt~ Never would I add salt to all of Lucy's food and drinks. I would never have to worry about her sodium levels possibly causing her dehydration, especially in the summer when it gets as high as 108 degrees outside. Never would I have to supplement salt into my daughter's diet to insure proper moisture in the mucus linings in her little body. I don't think I would ever have to fathom the thought of my daughter's cells not working properly, if she didn't have CF.
8. Antibiotics~ Never would I put my child on antibiotics for just a sniffle or cough. I don't think I would ever allow her to be on three week courses of antibiotics multiple times a year. If Lucy didn't have CF, she would be fighting off infection on her own, building up her immune system. I wouldn't have to worry about infection burying itself deep inside the mucus lining of her lungs.
7. Poop inspections~ Never would I be so fascinated and interested in Lucy's poop. Never would my child's poop be so frequent, happening as much as eight times a day, and never would it be described in detail the color, size, texture and grease content. I would have never taken a photograph of her very first bowel movement while she was still in the NICU after two weeks of waiting for it. A good, solid poopy diaper really makes my day.
6. Medicate Daily~ Never would I have to give my child digestive enzymes every time she ate nor would I have to give her inhaled breathing treatments, sometimes 4-5 times a day. Never would I have to pound Lucy chest manually or strap her into a The Vest to help shake the thick, sticky mucus in her lungs in likeness of trying to get the last of the ketchup to fall down the side of a Heinz 57 bottle. I wouldn't have to give her a laxative every day so that her rectum didn't fall out when she strained to poop. Without CF, I wouldn't have to manually push my daughter's rectum back into her little body. Without CF, Lucy would not have to take seven different medications everyday.
5. Clean and Sanitize~ Never would I have to be so diligent with disinfecting nebulizer cups by boiling them for 5 minutes. Never would I be so close in reach of my bottle of Purell and Clorox wipes. I wouldn't worry so much about what germs were floating all around us. If Lucy didn't have CF, I may not be so worried about what was on the hands of the old woman who doted over Lucy and pinched her cheeks while we were out shopping.
4. Doctor/Patient Bond~ Never would I be so in touch with Lucy's doctors, if she didn't have CF. Every sniffle and every weird cough and I'm on the phone immediately. Never would I divulge my fears, hopes and dreams that I have for Lucy, to a doctor. Her team of CF doctors and nurses, that have been with us from day 1, have been a tremendous support that I would never expect from regular doctors. They are watching Lucy grow and thrive just as I am and have become an essential part of her wellness and my sanity.
3. Television~ Never would I let Lucy sit in front of the boob tube to watch Barney or Dora in order to get her to sit through an hour's worth of breathing treatments a day. Maybe with an exception of an occasional educational flick, I don't think I would have allowed Lucy to watch so much television. Without CF in our lives, I don't think I would be so grateful towards Disney and Nemo in particular.
2. CF Community~ Never in a million years would I have thought that I would find so many different outlets on the Internet to vent my CF mommy frustrations and fears or voice my opinions and ask questions and even answer some questions! I have found a whole Internet CF community that is so loving, knowledgeable, helpful and accepting of new comers. I have become good friends with some of them and I have never even met them in person. Without CF, I would have never met these amazing human beings who have inspired me and changed my life more than they know.
1. Blogging~ Never, ever, ever would I have expected to be blogging about my life and the life of my daughter. I really do lead a very boring, normal life but I have been know to have a few things to say! I am happy that I have this forum to document what Lucy and I do together. I hope that someone gets some use out of it and learns something from it. I hope these writings of mine will be read by new family member's of a CFer and is comforted by knowing that it is possible to lead a boring and normal life with CF in it. I hope that Lucy will read this blog when she is older and look back at all of our memories that we created together.
Monday, January 11, 2010
She had dozens of birthday balloons...
She opened birthday gifts...
I can tell you that it was not me who let Lucy jump on my bed last night before bed, while I sang "5 Little Monkeys Jumping On The Bed." It was not Lucy that jumped, jumped and bounced her way into Dizzyville. And I will say that it was not Lucy that got so dizzy that she ran into the wall after the song was over. It wasn't me or her that laughed hysterically about it.
(**Disclaimer** There were absolutely no children hurt in the making of this blog. Lucy is just fine.)
Friday, January 8, 2010
I will need to gather some last minute items but almost everything is on order for her special day. It has been nearly all she has talked about all week. "My party..." this and "My party..." that. The girl really knows what she wants and is not afraid to tell me all about it.
I asked Lucy what she wanted for her second birthday and she replied, "Lotssa ballooons and lotssa icecream ana cake and lotssa candles." That is exactly what she'll get. I purchased a mini helium tank and 30 balloons, noise blowers, a pack of candles and enough cake mix to make a billion cupcakes. She even picked out her own invitations this year.
The concept of time is still a little beyond her reach so when she is asked how old she will be, she responds with, "Two minutes!" Even after explaining to her that she will be two years old, she will still insist that she is two minutes!
I can't wait to see how she reacts the day of her party with everyone celebrating and singing just for her!
Thursday, January 7, 2010
I took Lucy to see her pulmonologist on Tuesday to get a sputum culture taken and get an antibiotic prescription to get rid of this coughing and wheezing. Lucy is taking a two week course of Bactrim, which has successfully fought her infections in the past with little or no side effects. She has had very little weight gain so we have raised her digestive enzyme intake from six PancreaCarb MS4's to seven with meals. This is the maximum amount of enzymes she can take based on her weight (25 pounds.)
The biggest excitement (other than her upcoming birthday) is her new vest! Lucy has been using the wrap and it hasn't really had a huge impact on mucus production from her lungs. We finally got a regular child's vest that covers her shoulders. It looks like a life jacket. She really likes wearing it, and coming soon in February, we will be getting another new vest coming out on the market that is bright pink and is machine washable. Yippee!
When we first got the vest and the guy told me that the vest/wrap is not washable, I almost fell off my couch. We, as CF moms, spend our daily lives trying to keep our child free of infection by disinfecting everything and boiling nebulizers after every use and we can't even wash these vests that they wear multiple times a day? What the heck? In one month, Lucy will be getting this new vest and I will be able to disinfect it to my heart's content.
Here it is...
Friday, January 1, 2010
The next morning, Lucy popped up in bed and shouted, "Santa coming!" and "Santa bringa toys!" We ran down the stairs together and saw what Santa had left behind just for her. Santa had brought her a special play kitchen and filled her stocking with goodies! She couldn't believe her eyes!
Among all the things in her stocking, Santa had left a Slinky for her. Boiiing!!!