Life

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I am very happy to announce that cdh is not a daily thought for us! I’m not sure when it happened exactly, but it was within the past few weeks. I no longer think that she’s reherniated every time she cries, I don’t drive by the hospital and mentally find parking places, I even found a box of paperwork from Seattle Children’s and didn’t have a sea of nausea drown me. Don’t get me wrong, I have an emergency plan in place if she pukes green, I’m on top of her medical bills, appointments and therapies, I even keep a log of her medications, liquid intake and bowel movements. However, it doesn’t rule our world.
Starting the end of July, her feeding therapist, dietician and I came up with a plan. Fiona gets a small bolus of whole milk in the evening (pump runs less than an hour) and uses a straw sippy cup the rest of the day! Which means, for the entire day, Fiona is extension tube free! She used to have her extension tube hanging out of her shirt all day, every day, so we could infuse water. Now, she knows what thirst feels like, so she is learning how to listen to get body. Her goal is to take all 32oz orally, everyday, for three months before we can ditch the tube, and I have all the faith in the world that she is going to  rock this! She’s currently wavering between 10-12oz a day!
A few weekends ago I had the honor of meeting the amazing families of other cdh’ers and it was moving. To see all these people affected by cdh and all these children, playing like any other child, made my heart swell. Cdh sucks something major but I was in awe of the wonderful people it brought me to. Fiona and I have made friends for life, other people that she can talk with, confide in, and support.
Our past month as a family has been nothing short of crazy. Work retreats, doctor/dentist appointments, family trips, and outside temperatures over 90°. Needless to say, I’m welcoming back the routines. Laundry, grocery shopping, pulling weeds in the garden. Every day I look at my husband of 5 years, my son, 3 1/2, and Fiona, 14 months, and I feel like the luckiest girl in the world. I live in a home with laughs, hugs, kisses, arguments, make-ups and love.

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P.S. She’s walking about 6 feet by herself!! Eeeekkkk!!

14 Months!

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I can’t believe I’ve put this off for this long! Sheesh!
Fiona is doing fantastic! She will be 14 months tomorrow, weights almost 23lbs, is starting to try standing on her own and is so close to walking, and she is an absolute joy. She is working on teeth #10, 11, and 12 and eats almost anything and everything! The g-tube is still in use, only for drinking, but we’ve been doing an experiment the past few days and I’ll reveal it when it’s done. (insert evil laugh)
We are enjoying summer for the most part. Garden with veggies, a yard to run a sprinkler and fill up a pool, and plenty of sunshine to fill our vitamin D requirements! Making plenty of great memories!
I continue to follow the stories of families going through the many struggles of cdh. Some are just being diagnosed, and the pain and heartache that accompanies each one, some are still in the hospital, either waiting for the repair surgery or trying to get feeds down so they can go home, and some that are a few years into life and still experiencing problems. CDH is life long and I think sometimes we forget that. Some think that as soon as the initial hospital stay is over, cdh disappears. Sadly, it does not. So I am asking my readers to please keep all these cdh cherubs in your hearts, prayers and thoughts. Each one is so special and has such a great story to tell.

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8 Months

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Where in the world has time gone?? My baby girl is almost 8 1/2 months old and she is doing GREAT! Here is what is going on in her world:
She is over 19lbs and has been in 9 month clothes since Christmas.
She is only taking 155ml of breast milk through her g-tube 3x a day and doing 3 oral feeds (of at least 100 calories) a day as well! She is drinking a few liquids with a sippy cup, but the trick is to find one she really likes. So far we’ve tried Pediasure, water, and very watered down apple juice.
She is liking tummy time better every day and when her physical therapist saw her today she said she was very impressed! Fiona even stayed on her hands and knees for a few brief seconds!
Fiona is sleeping through the night and is on a good schedule with naps during the day. She sleeps in her own room in her crib, without her wedge, and listens to classical music all night.
Fiona loves to talk and just started to say DA DA! (I’m trying not to be offended)
She feeds herself Cheerios and puffs and hasn’t said no to any kind of food yet!
The only person that can make her laugh every time is her wonderful brother. It brings tears to my eyes to see the love they have for each other
She has had her 3rd RSV shot and hopefully she’ll stay healthy through two more and a nasty flu season. Don’t forget to wash your hands and stay home when sick!
Fiona is surprising us every day with how beautifully wonderful she is! Our next adventure is to Seattle Children’s Hospital the middle of March for an echo cardiogram, a neurology assessment, and a check in with her surgeons! Keep your fingers crossed for great news!

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*smiley girl in her cousins sweater

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*mom’s taking yet another picture

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*hanging out in the kitchen with her jeggings

Feedings

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Once again having a medically fragile child has shown me how many things in life we take for granted.  Eating, breathing, sleeping, running, walking, even birthing typically developing children.  I often try to remember what it was like when Kingston was this young.  How easy it was for us to feed him whenever he wanted, dressing him without a g-tube in the way, bathing him without having to apply special creams, taking him out in public and not worrying (too much) about all the germs we were bringing home.  We have been working with a feeding therapist and a dietitian from almost the moment Fiona was born and I imagine we will continue for a while more..  While she hasn’t taken the typical path for eating, she is certainly making it her own path.

Before we had Fiona’s diagnosis I dreamed of being able to place my second child to breast, just like I did my first.  Kingston and I had a wonderful nursing relationship. He loved his momma’s milk until the day he turned 13 months and then his lack of attention span ended that particular special time that we shared.  By that time I was lucky to get him to focus for one full minute, let alone a whole nursing session.  But, I was told over and over and over again that “Breast is Best” and damn it, we did it!  So, when my pregnancy test came back positive the second time, I had visions of nursing again, and even hoping to surpass 13 months.  But, when I sat down with doctors from Seattle Children’s and the University of Washington Medical Center to discuss the after birth plan of my soon to be born medically fragile child and was told that I most likely would not be able to nurse her, due to limited lung growth and stamina to suck, swallow, breathe, I was devastated.  I cried from Seattle to Bellingham over the loss of a bond that I should feel with Fiona.

Eventually, much like other sad news and poor statistics in my pregnancy of the future of my unborn child, I knew that come hell or high water, my daughter would receive my breast milk, statistics be damned!  On May 30th, 2013 when my minutes-old daughter was wheeled off to another wing to be intubated, stabilized and rushed off in an ambulance to another hospital, I insisted my nurse give me a pump so I could start pumping right away. I saw my first few drops of colostrum and I suddenly had the determination to pump and the desire to do what I could to help save this girl’s life.  Little did I know that 7.5 months later, I would still be hooked to the machine , 5+ times a day.

While Fiona’s birth date is May 30th, her admittance date to Seattle Children’s Hospital is May 31st.  She was born in the evening and was so stable that they delayed taking her to the hospital immediately, and kept her at UW for a few hours.  Her repair surgery happened on June 3rd and because of a mishap with her PICC  line, Fiona didn’t start receiving my large quantities of breast milk until June 21st, at 23 days old.  Due to the need for increased calories, due to rapid breathing and the burning of calories, my breast milk was fortified with formula. Fiona was 8.4 lbs, up from her birth weight of 7.6 lbs.

The difference between rate and dose is that dose is how much total volume she is to receive and rate is how fast she will receive it.  Her first dosing of food , through her ng tube (nasogastric tube – inserted through one of her nostrils, past her throat, into her stomach) was 3 milliliters (ml) at 3 milliliters (ml)/hour.  Meaning that 3 ml of breast milk would take an entire hour to be deposited into her stomach. For someone that spent their first 9 months in utero, and 4 days out of the uterus, with their stomach under their ribs, directly in front of their lungs, this was a big deal. Surprisingly, she did amazing with it.

Fiona continued on a steady increase of breast milk intake and at a faster rate until she was discharged on July 10th and by that time she was taking 45 ml either orally or through her ng tube.  We were sent home with the good faith and skill to take a bottle in the hopes that eventually Fiona would put her super hero cape on, throw the ng tube out of the window and take all of her feeds through a bottle, and maybe, just maybe, latch on to my breast and nurse.

Fiona was eventually connected with a dietitian in Spokane and off we went with increasing her dose, her rate and her skill.  On the first appointment with our dietitian a few weeks after coming home, we were to slowly  increase her dose to 82 ml and increase her rate to 52 ml/hr. We were to do this 7 times a day and offer her the bottle at the beginning of every feed.  Quickly though, her interest in the bottle dwindled to an absolute refusal of that bottle nipple going anywhere near her mouth.

Fast forward to November 18th, 2013 and due to refusing to take the bottle and not taking in enough calories with non-breast-milk-foods, Fiona had a surgery to place a g-tube (gastrointestinal tube – a tube inserted into the abdominal wall into which liquids and medications are placed). Her surgery was a success and she was discharged from the hospital a few days later with no complications at all.  However, the best news came 3 days after that as she was taken off fortified breast milk all together and placed on straight breast milk.  I cried this day.  This was the day that meant my body was giving my daughter everything she needed to be healthy.  She was gaining weight beautifully and our doctors didn’t see the need to have extra calories added.

Our next task was to increase her oral intake.  When Fiona started to completely refuse the bottle I gave away all her bottles, bottle warmers, nipples, and anything else that even remotely resembled a bottle. She loves to suck on her binky and even take a few sips out of our own glasses but she wants nothing to do with a bottle.  Around the middle of December, our dietitian threw us for a curve ball and decided to take one of her 6 pump feedings a day and turn it into an all oral feed.  Which means, instead of breast milk going into her g-tube, she would have a 6 hour break and anything that went into her body would go in through her mouth.  We quickly found out that she preferred savory flavors to sweet, meaning she would take Turkey & Spring Vegetables baby food over pureed apples.  Now, from someone who could live on chocolate, I find this tough to relate to. But, I just see it as more sweets for me ;)

Fiona took this new task at full speed.  The girl loves her food. She will stare at you as you eat and send brain waves to you telling you to share whatever it is that you are eating with her.  She loves popcorn, ham, turkey, bread, crackers, lasagna, orange slices (she’ll take some sweet), and pretty much everything else.  She is getting used to different textures, tastes and consistencies.  The list of what she wouldn’t take is a lot shorter than foods she will take.

Starting today, her feeding therapist and dietitian have thrown in another feeding so she is now down to taking breast milk through her tube only four times a day and start having two oral feeds.  She has even been cleared to try dairy!  So, it looks as though I will be sharing both my breakfast and dinner plate with my wonderful little foodie. She has traveled such a long way in her short 7.5 months here with us. She has shown us that CDH is no match for her and she has stepped on it, squished it, and left it out to dry.  I can imagine her in a spandex jumpsuit (with a pink bow headband) in a wrestling ring with CDH and kicking the living day lights out of it.  Her feeding therapist today called her the poster child for food aversions.  She has proven to others that while the bottle is an important first step in our life, it’s not the only one.

Both of my babies have always been in the top percentile for weight and height and so it is no surprise today that my 7.5 month old daughter is at 19 lbs.  She is 19 lbs of beauty, spunk, love, smiles, giggles, and wonderful, squishy love.  She takes my breath away with her strength and determination.  I am so proud to call myself her mother.

To all of my friends that read my blog posts: I want you to know that while you may know someone struggling with CDH, food issues, etc., they are also kicking some major booty.  The fact that they are still here and showing us everyday that they are strong, resilient, and so powerful.  Reading everyone else’s blog posts, Facebook updates, instagram pics, etc., has made me so proud to know you.  Your children are so amazing and beautiful and if it wasn’t for your amazing self, they wouldn’t be here.  This is such a tough journey but we are all in it together.  I know so many people that would have my back at a moment’s notice and I want you to know that I would have yours at a moment’s notice too.  You are strong, you are beautiful and you are so worth it.

 

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2013

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What an absolutely, crazy, awesome year this has been. We started this year with news that our baby (didn’t even know the sex yet) had a 50% chance of surviving once born and we are about to end this year with our home, our family, our friends, and a lot of love. Looking back at my very first post from the end of January I remember all the hurt that I was already feeling. I was reading stories of babies that didn’t make it past a few weeks on this Earth and I was convincing myself that my daughter would fit into that statistic. How would I survive if my child didn’t?
At this moment, almost a year later, I am sitting on the couch with a sleeping angel in my arms. Her fingers are wrapped tightly around my collar, in hopes that I will never put her down. Her lips are curled around her pacifier, occasionally taking a few sucks in between dreams. Her cheeks are the most perfect, kissable cheeks ever. Her toes are slightly tucked under her feet and every so often she’ll open her eyes, look at me, and smile.
Everyday I am amazed by this, not so little, girl. Fiona is 7 months old, almost 19lbs., sitting on her own, rolling from front to back, saying more sounds everyday, putting her own binky in her mouth, eating almost everything on MY plate, practicing drinking from a cup, taking 100% breast milk through her g-tube and working on her 2nd tooth!
I’m still cautious of her health and the millions of very little germs that can invade her body at any moment. Through a small struggle with our insurance,  Fiona was approved to receive 5 one month injections of antibodies against RSV. However, these aren’t 100% effective against the virus.  We are constantly avoiding public places, people who might be sick, anyone who is sick and therefore staying home as much as possible. I’ve already heard of many cherubs who have been hospitalized and I refuse to let that be my cherub.
While I can definitely say that this past year was one big roller coaster, it has given me so many blessings that I wouldn’t trade for the whole, entire world. See you next year!!
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Giving Thanks

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It was at this time last year that I was sitting in a college computer lab working on assignments when I immediately thought I had peed my pants. I was almost three months pregnant and we had told everyone. Ted and I had been trying since June and we were excited to add another child to our already happy home. I started laughing to myself when I felt the warm rush and tied my coat around my waist and waddled to the bathroom. Still laughing to myself I went into a stall and my laughing stopped when I realized my pants were soaked with blood. It took a few days to get in for an ultrasound and that is when our path of cdh began
When I became a mom for the first time my life changed drastically. I had this little human being that needed me so much, but it turns out I needed him more. He showed me a new kind of love. One that wasn’t materialistic or measurable or dispensable. One that had no limits and made me speechless. Nothing will ever take that feeling away. Then, we became pregnant again but this time fear was involved. Fear that I would never get to meet this other little being that I was already in love with. Fear that this little being wouldn’t get to know us and that we wouldn’t get to experience their life and the world through their eyes. For 6 very long months I knew that I had to have hope but I refused to be blindsided with loss if it happened. I was at such a crossroads.
But then she was born and I became thankful for absolutely everything. Thankful that labor was “easy,” thankful that she was alive, thankful that she screamed, thankful that she was pink, thankful that my cousin documented it, thankful that my favorite doctor was there, thankful for everything. Thankful for every nicu nurse, thankful for surgeons, thankful for late night hand holding with my daughter, thankful for every breath. From the moment she was born my life was transformed forever.
I try everyday to thank God for so much. I am thankful for every kiss I plant on my children’s chubby cheeks. For every kiss they give me. For every breath that they take. For every breath that I take. I thank God for my house, for my health, for my husband. I never want to take anything for granted. I want to live our life to the fullest and teach my children to do the same. I believe we are all here for a reason and life isn’t forever and we must always make the most of it.
While I believe that we should all be thankful at least once a year, I try to live my life by being thankful everyday. My life is so full of things to be thankful of. I am reminded with every breath that my children take that they are a gift and I am so privileged to have them in my life.
My life has been changed so many times but I am finally able to say that I am complete. I am confident in my body, my mind and my soul. I am living a life I only ever dreamed of. My husband, my children, my family, my friends, my life.

One week

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We have been home one week now and Fiona is doing great! She seems happier and easier to be around. I’m sure it’s also her growing up but she seems more content to play on her own and falls asleep much easier than before.

We have even found a new flavor of puree! Due to the suggestion of our dietician, we tried Chicken and Brown Rice and she loved it! Our dietician told us that babies with g-tubes typically prefer savory flavors. With our older son we held off feeding him meat until he was a year old. I’m not sure why, maybe the thought of pureed meat didn’t sound appealing to me. However, this is the same boy who is sitting next to me licking the bottom of his feet, so who knows what we were thinking…

Many people say that they wished they had the g-tube placed sooner then they did. I am actually glad we waited. Fiona had her ng tube in for close to 5 months. When we left the hospital in July Fiona was taking a majority of her bottle feeds orally and I was confident that she was going to kick the tube and maybe even breast feed. However, she had another idea. She took it into her own hands and went another direction. She started to reject the bottle completely, and wanted nothing to do with nursing, but has shown us that she loves purees and fresh fruits. Delaying the g-tube was another way to show us just how incredibly wonderful she is. She has added another chapter to her story, a story that will go on for decades.

I am glad we waited to get her tube. I am glad we waited until she was older and more stable. I am glad it went as successful as it did and her surgeon was the one that was able to do it. I’m glad that she is surprising us everyday and I’m glad that she’s going to continue to do so for many, many years.
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*enjoying Chicken and Brown Rice
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*enjoying some orange peel